Life with little boys (and a baby girl!)

I cannot believe it's been a YEAR!!!

2011-12-10T23:42:00.000-06:00

This time last year, Matt, Audrey and I were at St.Jude's for the first round of Matt's new chemotherapy.

We were scared.

We were overwhelmed.

This year has been full of craziness as we tried to balance the side effects Matt was having with the fact that the chemo seemed to be working. He had foot pain/neuropathy, high blood pressure, strange skin rashes/bruising, diarrhea, vomiting, and a full compliment of GI issues that were very odd.

In June, someone brilliant thought to test his stool, and it came back showing elevated fecal fat - a sign that his body was not absorbing fat properly - a sign his gallbladder might be malfunctioning. After a 2 month fight, we finally were able to get his gallbladder out.

Surprise!!! No more GI issues. It's a good example of what makes Matt so difficult to figure out. He has so many issues that could have caused the symptoms he was having. He is like a gigantic puzzle. With 1,000 pieces. All of sky. :)

Anyhow, we went to St.Jude a few weeks ago and they were absolutely astounded by how well he is doing. His GI issues are almost completely gone. He hasn't had the foot problems in several months. He has grown 4 cm. (1.5 inches). He has been attending school for full days, and feeling well when he comes home (well, except for almost all of October, but that's another story). He just got braces. All in all, he is doing wonderfully and we are mixing in a bit of 'normal' with all of his 'definitely not normal'.

Dr.Wetmore is so thrilled. She said the average time children are able to stay on a phase 1 study is just 2 months before either the side effects become too bad, or the cancer continues to grow. Matt has made it 12 rounds and we are all so unbelievably happy that this treatment seems to be working.

We got the go-ahead to continue this chemotherapy. The protocol allows for 12 more months, and we will continue to travel to St.Jude every 3 months to see if it's still working.

I am thrilled at how far we have come in a year.

Oh yeah...

2011-09-12T16:21:00.000-05:00

We were super cute at Easter, too!!! :)

Just sayin'!

My 5 month hiatus is over. Maybe. If I'm not too lazy...

2011-09-12T16:03:00.000-05:00

The 4 oldest boys went to Camp Hobe again. Unfortunately, Matt got really sick and had to come home. :( It turns out he had gallstones. We are just glad it was something easy to fix! Still complicated for Matt, as this surgery is usually an outpatient procedure and he had to spend a few days in ICU, but still, comparatively, easy.

I had a super-fun girls weekend with these girlies. We saw WICKED in Boise. It was amazing!!! So fabulous!

When we bought our boat we hear over and over the joke about the two best days of a boat owners life: the day they buy the boat and the day they sell it..... We've now experienced both days. :) The boat didn't get used as much as we thought it would, so we sold it to someone who could use it more.

These boys both had birthdays. Matt turned 13 and Will turned 10. I LOVE this picture of the two of them collecting fast offerings in the rain. They are such great kids!!!

And this girl turned 2. What happened to my baby??


We've been pretty addicted to Zeppes Italian Ice/Gelata. Yum!!!

We got a new niece. Audrey has been especially enamored with 'Baby Avey' (Avery).

Drew broke his arm on the playground at school. If you ever want to find the most popular kid in school, just look for the first grader with a new cast. He was not terribly sad about the extra attention this little 'accident' brought him!

Of course, I was out of town for all the broken arm excitement. I was in Provo at BYU women's conference with these wonderful ladies. They both have children with brain tumors, as well. At one of our classes, we learned this presenter had just lost her son... to a brain tumor.

Isn't he the cutest kid?!? Seriously!!!


We've been to Lagoon a LOT. The kids received season passes this year from Grandma and us. It has been so fun to stop for just a few hours and let the kids play. Audrey and Jake are especially excited about going.

We hiked the Limber Pine Trail with no kids in backpacks. Warren's back is especially excited about this milestone.


Welcome to Utah in July!!!! :)

There's a reason we switched to St.Jude.......

2011-02-28T22:25:00.000-06:00

So, to spare you the worry, I will tell you now that Matt is okay. :) He is actually feeling quite a bit more like himself and even went to a half day of school today (I think I need to modify his schedule so he only goes 1/2 days everyday, but that's another post.....)

On Thursday he went in for his MRI. It was a bit of a fiasco. They accessed his port and it seemed just fine. I was waiting and waiting and waiting and was beginning to get worried about it taking so long when the tech came out to get me - without Matthew, never a good sign.

Apparently, the tech had injected the contrast through his port, all 16 cc's of it, and then gone back to complete the scan. However, there was no contrast in his system....... Somehow, the port had come dislodged and there was only about 1/8" of needle inside Matt. Instead of the contrast going into the Port and through his system, it had all been injected directly into the muscle right underneath the skin. Everyone was absolutely shocked that Matt hadn't felt pain when this had happened. Usually if something misses the Port, it is very painful immediately. Besides the fact that Matt is the toughest kid I know and has an insanely high pain tolerance, he was also on massive amounts of narcotics to combat the severe headache he had. Soooooo, they had to have an oncology nurse come down to re-access his port so he could finish the MRI and also so they could flush it with Heparin (otherwise it would clot and be unusable). Our 3:00, 1 hour long MRI didn't get finished until almost 7:00.

I left PCMC a big bundle of nerves. I was terrified about what we would hear. I waited anxiously on Friday. In fact, I waited and waited and waited - all day long. My mind was going a million miles per minute. It was probably good news, so that's why they weren't calling. It just wasn't a big deal. Or WAIT, it was probably TERRIBLE news and they were all drawing straws about who would have to tell us our child was dying, or needed a shunt, or needed another surgery, or had developed a secondary cancer, or, or, or, or..... You get the idea. I spoke with St.Jude 3 times on Friday. They hadn't heard anything, either. In fact, they had called twice and left messages, but had never received a call back.

Finally, towards the end of the day, we heard the GREAT news that Matt's scans looked great. Our friend was able to look at the scans and read us the report. He called the scans 'miraculous' in the change caused by the chemo, but also noted that Matt had a tremendous sinus infection. He said he had rarely seen sinuses so terrible.

So, I got off the phone with him, called St.Jude to get the list of medications that Matt could be on for this infection, called my pediatrician and explained what we needed, and he called in a prescription for the antibiotics. Matt has now been on the medication for 4 days and he is feeling much much better.

I've spoken with St.Jude several more times. They are really worried about Matt.

He's been on needed treatment for 4 days.

I STILL haven't heard how Matt's MRI looked from PCMC...... And they are the ones who ordered the MRI!

Does anyone else think that is NOT OKAY???

Scary Stuff

2011-02-23T21:08:00.000-06:00

Over the past 2 years, while Matt has been stable, I think I've sort of forgotten (blocked???) the roller coaster otherwise called 'I have a child with cancer'. The highs are higher than you can imagine (Stable! Shrinkage! Miracles!!) but the lows are oh so low. It is a weird feeling, this euphoria mixed with utter despair, and it can change in a day, an hour, an instant.

Thus, my happy go lucky post of a few days ago is now completely different. I mentioned his feet in my last post and that was the beginning of a quick ride downhill. He had the u/s and such to rule out clots, but then he began feeling poorly. We can't quite put a finger on what is going on. Every test that is run is negative, but he has been extremely lethargic, has no appetite, has a severe headache, stuffy nose, congestion, and just generally feels crummy. When I say he has been lethargic, he's been really tired. He slept much of the day on Saturday and over 8 hours on Monday. :(

So, after having a crummy day Saturday and when he woke up Sunday still feeling really bad, we decided to take him into PCMC and have him seen. In triage, he freaked everyone out. His breathing was labored and fast, his color was bad, and just hearing Matt's history makes every doctor worth their stethoscope panic. They ran labs (all fine) and gave him fluids. By the time we had been there for 4ish hours, Matt was looking a bit better. They were going to admit him to the hospital 'for observation', but I talked them out of it. :) I would do anything if Matt needed it, but with all the tests coming back negative, and a holiday weekend that assured me nothing would really get done before Tuesday, it seemed that Matt would sleep better in his own bed. I promised to watch him carefully, bring him back if I was worried again, and follow up this week.

Then he slept ALL DAY on Monday.

I hoped that he would perk up a bit once he woke up, but on Tuesday he was feeling even worse. I quickly got ready, called both PCMC and St.Jude, dropped off my little ones with my sister-in-law and headed to PCMC. Once there, Matt again succeeded in freaking everyone out. I wheeled him into oncology in tears because he was in so much pain. When the NP and nurses came in he was lying on the bed in the fetal position looking about as miserable as I've ever seen him.

Then, he started to perk up a little bit. Of course, the doctor came in after a little while and Matt was looking much much much better. I was actually happy the nurses and NP had seen him so miserable - otherwise I would feel like I was crazy!

Anyhow, long story short (even though this isn't short. Ha!) they ran many many tests, gave him fluids, IV narcotics for the pain and we came home. We go back tomorrow for an MRI to make sure this headache isn't tumor related.

And this pretty much sums up why having a kid with cancer is so difficult. You have to learn to think backwards. If any of my other kids are having pain in their leg, I'll help them soak it in a bath, take Tylenol, rest it, etc.... If Matt has pain in his leg, we rush into the ER for u/s and specialized tests to rule out clots or something else, then, if everything looks okay, I help him soak it in a bath and give him Tylenol. :)
If my other kids get a virus, I'll put them to bed without a second thought. I make sure they have a puke bucket, that their fever doesn't get too high, and that they are comfortable and feel loved. If Matt gets a virus, we spend the next 3 days in the ER, increase some of his medications, run every test under the sun, and do an emergency MRI to rule out something in the brain causing the symptoms.

I'm trying to have faith that this is just a virus that is kicking his butt.

But I'm terrified that it's not!

So, if you are so inclined, we would very much appreciate some prayers on his behalf. Prayers that this is just a virus, that his scans will still look good tomorrow, and, mostly, that he can begin feeling better!

Good News

2011-02-17T23:48:00.000-06:00

Sorry for the delay in update. I'm just busy.... and slow.

We returned to Memphis 2 weeks ago. I have never ever been so anxious for appointments. I just assumed that Matt would have his MRI's the day after we arrived. However, they did ALL the other tests FIRST! We arrived on Monday and didn't have MRI's until Thursday and didn't get results until FRIDAY!!! Talk about mounting anxiety!

I couldn't sleep. Couldn't eat. Couldn't think.

Thankfully, on Friday, our first appointment was with Dr.Wetmore. She came in and the first words out of her mouth were, 'his scans look good'. :) She must have realized how anxious we were. The chemo seems to be working. All of the metastasized tumor is 'stable', which is good. The main body of the tumor is actually a teeny bit smaller, which is a miracle! In his previous chemo, the drop mets shrank and even eventually went away, but the main tumor has been untouchable and has only gotten smaller when it has been altered surgically. To give you a sense of size, his tumor is roughly 5 cm. (2") by 3cm. (1 1/4"). His tumor showed shrinkage of 1/2 cm. all the way around. 1/2 cm. doesn't sound like much, but it is HUGE when you take into account the total tumor size.

We had another blessing, too. As one of the things they look for on this protocal, they do knee X-rays to rule out Avascular Necrosis (damage to the joint tissue). In Matt's X-ray, there was evidence of this disease. Ultimately, a knee or hip replacement is a small price to pay for a cancer treatment that is working, but I still felt worried about my 200 lb. 12 year old having joint problems. Since the X-ray came back positive, we had to schedule an MRI of both knees. In this MRI, there was NO EVIDENCE of disease. Woo-Hoooooo! They will continue to monitor him closely, but as of right now, Avascular Necrosis isn't a problem.

Since coming home, Matt attended school all last week. He never made it to first period but we do our best. :) He is quite fatigued and nausea and vomiting have made their appearances, but he is doing pretty well.

This week he has felt fine except his feet have been really sore. This is a mystery to everyone! Yesterday we went in and had him checked out. He has a petechial rash all over the top of his foot and his toes are really discolored. They did an u/s of his entire leg to rule out clots (none, thank goodness!) and they also checked his blood flow to make sure there wasn't a circulatory issue. That rules out the two most urgent problems that could be causing his symptoms of foot pain and discoloration. We're still trying to get to the bottom of that. Unfortunately, the pain has been severe enough that he has not been able to attend school since Tuesday. :( As long as he is taking it easy, though, he isn't in pain and otherwise feels well.

So, there you have it. Consider yourself updated. :)

Trip to Memphis: Take 2

2011-01-12T00:21:00.000-06:00

Christmas did happen in the middle of Memphis trip 1 and Memphis trip 2 BUT I'm too lazy to blog about it right now. Just know it was wonderful to be together, everyone ate too much, got spoiled with mountains of toys, games and goodies, and I was very happy to get everyone back to school. We had one week of 'normal' routine and then Matt and I were off again. It was barely enough time to get caught up on the laundry. :)

Now we are back in Memphis and it has been crazy! First, we had a bit of a fiasco with travel arrangments. They changed the dates they needed us here and our previous arrangement fell through. Then it changed AGAIN and turned our travel into a bit of a crisis. Basically St. Jude's requires 14 days advance notice for travel arrangements and we didn't have that. They had to go UPSTAIRS for special approval (insert JAWS theme music here).

Matt and I arrived on Thursday evening, as scheduled. He was fine on the airplane ride, chatting up the 2 ladies sitting next to him on the plane (since our reservations were made so late, I ended up sitting in front of him instead of next to him). He seemed quite tired when we arrived and I knew he was dehydrated, so I was really encouraging fluids. He was reluctant to drink, which often happens when he gets dehydrated and his sodium climbs higher than it should. After we ate a quick snack, I gave him his meds, including a stress dose of his hydro cortisone since he seemed tired and overwhelmed and just a little 'off'. After taking his meds, he promptly vomited. It still didn't seem like he was sick, just that he was tired and I was forcing him to drink too much. I gave him another stress dose of hydro cortisone and put him to bed.

Friday was a big day, test-wise, and turned into a bigger day as it progressed. We arrived early to have his first set of labs drawn. This study is called a Pharmacokinetics Study. It measures the amount of chemotherapy in the blood before taking the drug and then again 1 hour, 2 hours, 4 hours, and 8 hours after taking the drug. Matt is in a phase 1 trial and phase 1 trials are all about correct dosing and what side effects occur with the drug. After we began the test, Matt started seeming a little strange. He was complaining of an earache and he was hungry since he had to fast for 2 hours before chemo and 1 hour after. We finally got him a bowl of cereal after the 2nd blood draw and then went for our clinic visit. In clinic, Matt began really, really acting poorly. He said his ear REALLY was hurting and he began to cry - very unlike him. The clinic doctors and nurses kicked into gear and began doing tests. Lots and lots of tests. While we waited for the results, they decided to start Rocephin via IV. He laid down on the bed and as soon as they started the antibiotic, he began vomiting. Again, he didn't seem 'sick', but something was very wrong.

He was in adrenal crisis.

When you or I are in a stressful situation or we are ill, our body makes adrenalin. We make a little bit every day, but in times of stress our bodies make a lot. Matt's body doesn't make ANY and it is the most life threatening, on a day to day basis, thing we deal with. Between the travel and subsequent dehydration and the illness, it put him over the edge. Thankfully, we were in the hospital at the time. They gave him an IV stress dose of cortisol and decided to admit him. They wanted to watch him closely. They also wanted to get the results back from all the tests. Because of his symptoms (vomiting, diarrhea, sore throat, cough, earache) they put him in a 'strict isolation' room. Every time anyone came into the room they had to put on a full gown, mask and gloves. Matt was not allowed to walk around the unit, and I had to scrub my hands in a special sink right outside his room whenever I walked out.

Hilariously, every single test came back NEGATIVE. The only diagnoses they made was of an ear infection. Matt is probably the first kid in the universe to be hospitalized - in an isolation room, no less - for an ear infection. The other symptoms we saw were symptoms of either the chemotherapy or the adrenal crisis, or both. Being the amazing bounce-backer than he is, the next morning Matt seemed great. His labs were improving (especially his sodium because we were giving him IV fluids) and they let him out of the hospital that afternoon.

On Sunday, we were pretty tired so we took it easy. We watched a few movies and took a nap. We did walk over to the hospital twice to draw labs and make sure that his sodium was still coming down or stabilizing.

Monday we were supposed to go home. We had a quick appointment for labs, and a quick visit to clinic and then our flight was scheduled to leave that evening. When we got to clinic, Dr.Wetmore was still a little perplexed by some of Matt's labs. His lab work, during the adrenal crisis and afterward, were 'out of range' for the study that Matt is on. The study doctor wanted to pull him off of the study. I do NOT want him off the study. Of course, I don't want him to do anything unsafe, but we only have one more month until we find out if it is working! I've been anxious to get him on a VEGF receptor for a long long time. Dr.Wetmore (and I agree) felt like the strange labs were due to the adrenal crisis and illness. She wanted to do a few more tests to figure out if we can get any more answers as to why his labs were 'off'. Specifically, he had high sodium (easily explained with his DI), high Uric Acid (???They usually only see this in people with Gout???), protein in his urine, and his liver enzymes were off. She suspected kidney stones. So, off we went for a kidney u/s and a 24 hour urinalysis.

Today, we got great news! All of the labs were back to normal. The protein in his urine is almost gone. He does not have kidney stones. AND Dr. Wetmore talked the study doctor into allowing Matt to continue the chemotherapy. He had the first dose of course 2 tonight. I am sooooo anxious for next month!

Second great thing: Dr.Wetmore totally went to bat for us regarding growth hormone. I've posted enough times about our battles with doctors over this one, that you probably already know doctors won't prescribe it because Matt still has a tumor. BUT, Matt will always have a tumor and he NEEDS growth hormone. You and I make growth hormone and it makes us feel great. Everything hinges on Matt receiving growth hormone. Dr.Wetmore was shocked and dismayed that Matt is not on GH. She wants him on GH and testosterone. She said she couldn't find a single study that showed a correlation between GH and tumor growth. She said, "I've spent my 20 year career in a lab trying to figure out ways to make astrocytes grow or stop growing. Growth Hormone does NOT affect astrocyte growth)". She is prescribing growth hormone for Matt. We will get him a little taller and then begin testosterone. Once testosterone is started, puberty will begin and his growth plates will begin to close.

All in all, this has been a very adventure filled trip to Memphis. I am overwhelmingly pleased with how this trip has gone and, still, that we have chosen to have Matt treated at St. Jude Children's Research Hospital.

We will go home tomorrow - and I will start all over again on the laundry. :)

I hope I'm not jinxing us......

2010-12-13T21:28:00.000-06:00

I thought Audrey's cute little voice in this video was a good way to announce that they said Matt could go home for Christmas! Yay! Initially, they said we would need to stay a month, and I think that if we were at this point and it was January, we would be staying for that long. But it's not, and we should be able to go home next Tuesday, and return on January 2nd and again on January 31st. Happy Happy Day! Matt had his first dose of this new chemotherapy today. They will monitor him closely this week and he will have an MRI a week from today to see how this drug is affecting new blood vessel formation/blood flow in his brain and around his tumor. Then......

We'll be home for Christmas!

St. Jude's Week 1

2010-12-12T21:41:00.000-06:00

We've been here in Memphis for a week! Wow! It's been a super-busy week with tons of tests. Here's a run down of all the tests and appointments Matt has had this week:

New Patient Assessment

Neuro-Oncology New Patient Visit

Assessment Triage/Labs/Port access

Visit to School Program

Knee X-Ray

Port X-Ray to check placement

Neuro-Oncology On Therapy Visit

MRI Brain (unsedated attempt 1)

Nutrition Consult visit/Eating safely

Echocardiagram

EKG

Visit to Family Resource Center

Social Work Consult/Visit

Child Life Visit

Patient Services Orientation

Line Nurse Visit/training

Anesthesia Consult

XR Central Line Patency check X-Ray

Line Nurse Visit

MRI of Brain (sedated this time, attempt 2)

MRI of Spine (also sedated - done along with Brain MRI)

NM (Nuclear Medicine) PET Brain Scan Injection (Sounds scarier than it is, this is just where they inject the dye through Matt's line)

CT PET Brain Scan

Visit with Chaplain

Visit with Research Nurse to sign on to minor protocals (3 of these at various times)

Pharmacy Introduction Visit

Neuro-Oncology On Therapy Visit

Sign onto PBTC20 Protocal studing the drug AZD2171 (A VEGF receptor that will hopefully stop the blood flow to the tumor).

Phew! And THAT, my friends, is what the first week at St. Jude Children's Research Hospital looks like. :) Add to that several large Christmas carnivals/parties that are thrown by large corporate sponsors, and you can get a sense of how busy and tiring our week has been. I will try to update about more specifics. I have been journaling everything, but it just hasn't made it's way to the blog, yet.

I will say that St. Judes is the most amazing organization I have ever had the privilege of being a part of. They take ideal pediatric cancer care and wrap it up in an extremely kid friendly, comforting package. One mom I was talking to was there for her son's yearly check up. He had Retinoblastoma and is doing quite well now. Anyhow, as she was checking him out of school the secretary said, "good luck on your visit to the hospital." The boy looked curiously at her and said, "I'm not going to the hospital, I'm going to St. Jude's!" They take a very difficult situation and make it as organized and compassionate as possible. They take care of all incidentals, so that when you are here, you truly just have to focus on your child. They arrange all travel. They have patient housing. Families are welcome - even encouraged. They pay for food. It's the first place I've ever been where every single thing is thought through and is made as simple and convenient as possible. It is awe inspiring! The children here are the very sickest children there are, that much is certain. I want to kiss all their shiny heads! But, it's also a place of hope and of laughter. The children are interacting with one another. The parents are supporting and helping one another. I've been amazed to hear other parent's stories. Every single story is as impossible and unbelievable as my own. Every single day, casual 'how are you' conversations turn intimate, as we share our deepest hopes, dreams, and fears with perfect strangers. It is uplifting to be here. I am so glad we made this decision. I pray the treatment is effective for my Matthew!

Yay! Yay! Yay! A plan, A plan, A plan!!!!!

2010-12-04T10:54:00.000-06:00

Sorry I have been slow to update our blog. We have been through a whirlwind of information overload, planning, and WAITING.

The news after Matt's spinal MRI was not good. The tumor in the spine is back. It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins. There is also tumor at the base of the spine. These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine. None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.

Part of the wait was due to a radical shift in our 'plan'. We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized. We discussed several options and ultimately felt the best about St. Jude children's research hospital. It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors. Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me. We all feel very very good about our decision to have him treated there. However, we had to begin the waiting game. First, all of his records had to be sent to St. Jude. Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh! How can there be a holiday in the middle of our CRISIS?!? LOL! Then it was the weekend. Then St. Jude had to send for a bit more information from pathology. The wait has been agonizing, but today we finally got the go-ahead and the plan. Matthew and Audrey and I leave for Memphis bright and early Monday morning. We will be staying for a month. (Don't talk to me about the whole Christmas thing. I'm in denial about it. We'll take it day by day.) At St. Jude, the patients live 'on campus' but are not 'in-patient'. Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217). The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.

So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing. A lot.) Thankfully, we have a tremendously wonderful and supportive ward and neighborhood. Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt. I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons. Carolyn and my mom will also take him some of the time. The big boys are easy, since they are in school all day and Warren works from home. Being able to bring Audrey is a huge relief. I was really obsessing about what to do with her. She is sort of a mama's girl and is only 18 months old. When I learned that I could bring her, I felt that everything would be fine. I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.

Matt is still doing well. Neurologically, everyone who checks him out, is amazed. He has very few symptoms at all from his cancer. He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self. He is just upset about having to miss so much school. :) That's my Matt!!! His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea. Then, Matt could be involved and 'give back' in some way, as well. His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need. They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients. Then, Matt will be distributing them. I think it's wonderful!

I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.

Thanks for your support and love, everyone!

P.S. We had some photos taken a few weeks ago with Cecily. She is AMAZING! In approximately 5 minutes, in the pouring rain, she got these photos of our family.

It's a good day!

2010-11-17T10:42:00.000-06:00

Yesterday we went to PCMC to meet with Matt's neurosurgeon. I had spoken with their office on Monday and learned that Matt had been put on the surgery schedule and that they were beginning preliminary preparations for another craniotomy scheduled for TODAY. We were very anxious about the surgery - not like a prompting to not do the surgery, but feeling very very nervous about it. With brain surgery, there is so much that can go wrong. We have met children with many different surgery side effects, everything from foot drop or facial droop, to children who have had a stroke on the table and are now paralyzed on half of their body. Surgery can affect cognitive function and hormone function. That brain of ours controls everything! Matt has escaped most major side effects. He has some cognitive/memory issues (that could be attributed to the tumor OR the surgery, who knows??) and, of course, he has no hormone function. Overall, though, we feel like we've won the 'surgery lottery' three times, and every time we go in, the odds of winning go down.

After much discussion between doctors and ourselves, we decided to forgo surgery for a bit longer. Matt is doing SO WELL, and we don't want to mess with that. He has no symptoms from his tumor - no headaches, no seizures, no vision problems, no balance problems. Dr.Walker is very leery of another surgery causing problems. Also, the tumor is *still* in a bad place and the direction it is growing puts it in an even worse area. Surgery would not remove the entire tumor, that much is sure. We decided instead to opt for chemotherapy, hope that the chemotherapy shrinks the tumor, and shrinks it into an area of the brain that is more accessible to the neurosurgeon. We will continue to evaluate Matt's situation and hopefully at some point do another surgery that removes a greater percentage of the tumor than we could get to today.

We also drove clear to Riverton so Matt could have an MRI of his spine to see if it is still clear. I need to call and get the result of that today. I'm nervous...... After his MRI, we went to In&Out burger. We had never been there before - what a disappointment! LOL! I even looked up the 'secret menu' and we ordered off of it, but those burgers are ICK! We'll stick with 5 Guys Burgers and Fries, thank you very much! :)

So, now we wait until Monday when we go back into oncology to determine, precisely, what chemotherapy protocol we will do.

Our mood today is very celebratory. I feel very light and happy about the decision. I guess I'm not sure the thought of chemotherapy should make anyone 'light and happy', but with the weight of surgery off of us, it feels wonderful!

A day of pondering and some clarification

2010-11-12T11:55:00.000-06:00

After we get bad news about Matt, I always feel like I'm reeling. It's like, all these pieces of information are floating around my brain, crashing into each other, and bombarding me with new ideas. The first day is THE WORST and then, gradually, I start to process the information. All the little pieces begin falling into place like a puzzle and eventually I get to 'our new normal'. Here are some clarifications about what we are doing and what we are thinking. :)

FACT: Matt 'seems' perfectly fine. He looks and acts healthy and feels great!

FACT: The tumor is still much smaller than it was at initial diagnoses 3 years ago.

FACT: We have a lot of treatment options (including chemotherapy and other drugs, more radiation, surgery) and combinations we haven't tried yet. We are nowhere NEAR the point of giving up or sending him home because 'there's nothing else we can do'.

FACT: We have some amazing doctors at PCMC, and they are in contact with other amazing doctors around the country about Matt's case. His medical situation is very complex, but we've got great people on it. Doctors from UCSF, John's Hopkins, UCSD (Hi Bob!), and, now, Matt's oncologist is heading to MD Anderson in Texas (which, I'm trying to not be grumpy about....). We truly have the best of the best giving advice and recommendations about treatment for our boy.

FACT: PMA's are known to disseminate (little bits of tumor). Matt had a lot of dissemination when he was diagnosed and it was even in his spine. Hopefully, the chemo will be effective in getting rid of those pesky little bits of tumor.

FACT: We have an amazing Neurosurgeon who we trust almost to a fault.....

FACT: We have great doctors all the way around.

FACT: Our disappointment yesterday was not so much that the tumor was DRAMATICALLY different. When you're looking at something about 3 cm., dramatic changes are all relative. :) We went into the MRI and appointment with a scale in our minds of how things could go. On one end was the 'miracle' side where the tumor was completely gone or completely dead. On the other end was the news that the tumor had morphed into something much more aggressive and was taking over his brain. :) Honestly, we knew we would be somewhere in the middle, but we hoped to be a bit further towards the positive side. When we were, instead, a bit closer to the negative side, that was a big blow.

FACT: Despite being disappointed that radiation didn't work, Matt is once again feeling optimistic. He told me yesterday that he knows he's going through this trial because, "Heavenly Father knows I can handle it and I'm learning things He wants me to learn".

FACT: Life is still good. Even when it is difficult, it is a blessing and a gift. Our trials don't define us, unless we allow them to. We refuse to focus so much on the difficult parts that we miss the amazing parts. Ya gotta enjoy the roller coaster, baby!

We will try to be better about keeping everyone updated. We are anxiously awaiting 'the plan'. As Matt says, "we've done this before......"

I think this is exactly why they told us not to get our hopes up......

2010-11-10T22:23:00.000-06:00

Today, Matt had his first MRI since radiation. I went in full of hope and optimism. Matt has seemed to be doing well. He has been enjoying school, feeling great, and aside from a bit of tiredness (that could be attributed to me just looking for something to report), has been as good as he's been in 4 years. In fact, he even seemed to be losing weight. He put on a pair of pants from 2 years ago last Sunday and they fit! After doing something so high-tech and exciting to treat his cancer, I was just sure the IMRT radiation would be a success.

Anyhow, the results of the MRI weren't just a little disappointing, they feel devastating.

The conclusion reads:
"Growing tumor volume in the original tumor bed and extensive supra and infratentorial ventricular and subarachnoid space enhancement with ventricular and subarachnoid space tumor spread."

What this means, is that the large main tumor has grown and is filling all available space surrounding it. It is enhancing under contrast, meaning the cells of the tumor are active and growing. Also, and this is the really bad part, it has disseminated and spread. Those itty bitty bits of disseminated tumor are the most difficult to treat. It would be like trying to dig a grain of sand out of a bowl of soft frosting, without disturbing the frosting.

Matt started crying as his oncologist was explaining the results of the MRI. That broke my heart! He feels so frustrated that he can feel so good and assume everything is going so well, only to find out that it is not going well at all. We can all relate....... It was a soggy car ride home.

So, the next step is most likely surgery. We have an appointment with our Neurosurgeon on Tuesday. I have a feeling that with his tumor behaving so aggressively, they will want to operate quickly. After surgery Matt will be going on chemotherapy. We were talking about probably metronomic (daily) Temodar along with Carboplatin and Vinblastine or Vincristine. Matt was on Temodar before and he tolerated it very well. I don't know if there will be different side effects with taking it daily. He was also on Carboplatin for a short time and it made him very sick. Vincristine is also one we're familiar with. He was on it for 2 rounds and his sodium went so low he had to be admitted to the hospital. I'm sure that with his Panhypopituitarism, they will be very very careful in regards to chemo. I am also hoping that since we are more familiar with Matt's medical issues, we will be better able to manage the chemo process. I feel like I am in a better position to advocate for him now. I just think back to last time he was on chemo and I learned a lot (IV anti-nausea, anyone???) I feel better prepared to evaluate his endocrine issues and would recognize low sodium before it got to the low levels he had last time.

So, there it is. Sorry I've been so bad about blogging lately. Life has just been going so beautifully that I think I just wanted to enjoy it. It has been a pretty wonderful six weeks. Normalcy..... Bliss!

Week 1 COMPLETE!

2010-08-20T23:30:00.000-05:00

Today marked day 5 of radiation for Matthew. His protocol calls for 30 sessions of IMRT radiation. This works out to 6 weeks of radiation, for 5 days each week. On Monday, my mom watched our other 5 children, and Warren and I took Matthew for round 1. We were nervous, and a little excited (after all, radiation is meant to KILL the tumor. We are pretty giddy and optimistic at that thought). That first day was a challenge. Nothing strikes in your heart the reality that 'your child has cancer' more than watching them have their radiation mask get bolted down to the table.

After the mask is fitted, a frame is placed over the mask. This frame sets 'markers', so they can be sure the radiation is reaching it's intended target. Each day, Matt receives 2 quick X-rays to make certain nothing has shifted. Then, he receives his therapy. In Matt's case, there are 7 different beams of radiation. Each beam delivers 3 minutes of radiation. Therefore Matt spends approximately 21 minutes each day in the radiation machine.

Since we are not allowed to be in the room or even watch the monitor while he gets his radiation, we can only guess what exactly happens. I do know that there is a large 'arm' above him on the machine that can rotate and also the 'bed' Matt is lying on can rotate slightly in 6 different directions. I'm sure it's not quite as intense as a simulation ride at Disney World, but that's what it reminds me of when they explain it!

Matt was thrilled with the way his mask turned out - and so were we! It has sort of a graffiti look to it with the words 'Cancer Sucks' written across it in red. If you know our family, you know that we don't usually speak like that, or allow our children to speak like that. BUT, given the circumstances, it seemed appropriate! :)

On Tuesday, we had all the boys with us. We had Will go in with us so he could see the machine and get a sense of what Matt was doing each day.

On Wednesday, we met up with a friend that Matt met at 'Camp Hobe'. Truly, an amazing camp! Anyhow, Matt and this boy were in the same cabin and hit it off. They are the same age and he also has a brain tumor, slightly different pathology, but with most of the same symptoms that Matt has. I cannot tell you how refreshing and therapeutic it is to spend time talking with another mom who totally and completely 'gets it'. I don't have to explain ANYTHING to her. We have the same daily challenges, the same long-term concerns, and similar personalities when it comes to advocating for our kids. It was great!

The logistics of radiation are proving a bit tricky, but doable. School started this week for my older boys. Warren has those 3 here at home. Since they are gone from about 8:30 to 4:00, it allows Warren to get a full work day in. Starting next Monday, I've hired a girl who just graduated from college to come every day when the boys get out of school. She will help them get a snack, do their homework, and practice piano. Matt and I are staying in Layton with Warren's mother. She has been gracious enough to welcome us and is proving extremely helpful in every way! We've scheduled radiation for 2:00 in the afternoon with the hope that we can put Jake and Audrey down for naps and they can stay with Carolyn while Matt and I run to his appointment. It's about 2 hours door to door, so it's perfect for a nap time for my littlest ones. This week went off without a hitch. Matt's school has also been very accommodating. We went in and spoke to them last week. They have a home-bound teacher who will be collecting all of Matt's work and acting as a go-between for the school and Matt. Since he should feel fine through radiation, he should be able to do his homework. He's a kid who thrives on school and schoolwork, so hopefully this will just be a blip in his school career.
Thanks for thinking of us and checking in on us! We're just plugging along at this! It feels a little bit like eating an elephant, but we're slowly taking bites and are 1/6 of the way done! :)

I have the MOST awesome family!!!

2010-08-13T20:43:00.000-05:00

I just LOVE these videos! Last weekend our family had a Jones Family Reunion. This was our impromptu entertainment. Well...... I'm not sure impromptu is the right word, since Uncle Glen (who isn't technically my uncle - he is my grandfather's cousin - I'm not sure what that makes him to me, but we all just call him Uncle Glen) had brought along his accordion, 2 fiddles, a harmonica, a keyboard with seat, a microphone and an amplifier. :)
This is the way I grew up. My earliest memories are singing in front of a crowd - my mom was always telling everyone I would love to perform...... We sang everywhere. I think it created a very jolly atmosphere at every family gathering. Just a note explaining why I try to encourage music with my children. Uncle Glenn here is completely self taught. At this family reunion he started out playing the keyboard, then switched it up to the accordion, then the fiddle, then the harmonica, back to the accordion, then back to the keyboard - all without a bit of music in front of him or a single music lesson in his history. It is AMAZING! Just watching this 90 year old heft his accordion is a sight to behold! LOL! My mom is no slacker, either (oh, yeah, for those of you that don't know us very well - that's my mommy on the keyboard.) She has a gift for music. She can play anything using music or by ear. I grew up thinking that every piano accompanist could change keys on my whim. It was a shock the first time someone else was playing for me to sing and I said, "that's too high, could you lower it a little?" They looked at me like I had 3 heads. :) I'm hoping that some of this talent is genetic!

I only wish I would have still been recording when my Uncle Glen had his wife come up and the two of them sang the two verses of 'Bicycle built for two'. It was the CUTEST thing EVER!!!

Our radiation adventure begins!

2010-08-05T22:59:00.000-05:00

Yesterday we met with our Radiation oncologist. I was very impressed with Dr. Shrieve and felt very very good about adding him to Matt's 'team'. Initially, I had felt like I wanted to consult with Boston, as well, because Boston is one of only a few centers in the U.S. that offers Proton Beam radiation, and specializes in pediatric Proton care. I called them last week and sort of started the process, but was really hoping that when we met with Huntsman cancer center we would feel good about using them. It is infinitely more convenient to stay close to home - even though I would travel to the ends of the earth if it meant giving Matt better treatment. Dr. Shrieve actually was in Boston for a large chunk of his career and he worked closely with the radiation oncologist that now heads the pediatric radiation program at Mass. General. He also worked with and knows very well the radiation oncologist that we were supposed to meet with last time we traveled to San Francisco when we ended up spending all of our time in ICU instead of getting the 2nd opinions we had gone to receive (I did speak with her on the phone and she recommended the same type of radiation we are going to be receiving at Huntsman). :) I don't think it's coincidence that the doctor we are using is someone who has worked closely with the two treatment centers we have received or wanted to receive 2nd opinions from.
We spoke in depth about different radiation options and about protons specifically. Dr. Shrieve said that in Matt's particular case, he didn't feel like protons offered enough benefit to justify the expense and inconvenience of traveling to Boston to receive therapy there. The part of Matt's brain that will receive the most damage from radiation is his hypothalamus...... which is already completely shot. The side effects that Dr.Shrieve would expect are the ones that we have been dealing with for 3 years - mainly complete hormone replacement therapy (panhypopituitarism) and hypothalamic obesity. He also said that while Protons are wonderful because there is no exit dose of radiation, there is often a higher entrance dose of radiation and his opinion is that because Matt's tumor is so deep, IMRT radiation would be a better choice. I felt a great deal of peace and comfort while talking to Dr. Shrieve about Matt's history and radiation options. I felt like this peace was a direct answer to my prayers about feeling confident that our choice of treatment would be what is best for Matthew.
Sooooo, today we started this big adventure. It was an extremely long day. Warren kept the boys here, and I dropped off Audrey at Carolyn's (Warren's mother) house. Matt and I headed to Huntsman for his 'mask fitting' and positioning CT scan. We had about an hour and a half before his next appointment so he and I went to the zoo and walked around for awhile. It was so fun to go with just him. It's way faster to walk the zoo with just one older boy. We saw practically everything in just an hour! After the zoo we went over to Primary Children's for the longest MRI, EVER!! They did a full MRI of his spine without contrast then a full MRI of his spine with contrast, then a special, more detailed MRI of his brain. For every 'slice' they usually take of his brain, they took 4 'slices', so it was about 4 times more detailed than his usual brain MRI.
Here are some pictures from the mask making. This mask will be used during radiation. They actually fasten the mask to the table on the radiation machine making it virtually impossible to move out of position. They really need those beams to go precisely to the tumor!

Positioning his head in the cradle

Adding the 'mesh' under his head

Using lasers and a 'sharpie' marker to make a perfectly straight line down his face.

Stretching the 'mesh' over his face. This stuff is pretty neat. It is a plastic sheet with holes that is heated in a hot water bath. When is gets hot and wet it gets pliable and feels almost like clear silicone. They can then stretch the material around the face and it conforms perfectly. As it cools and dries, it tightens up a bit and hardens.

Waiting for the mask to dry and harden.

Another view.

Going into the positioning CT scan.

The finished product. Sometimes they decorate the masks. I don't know if Matt requested that his get painted. I guess we will see next Monday when he begins therapy!

I suppose I have to update.......

2010-07-30T00:03:00.000-05:00

I have been a slacker about updating my blog. My friend Liz said she hoped it was because our life was humming along so swimmingly that we had nothing to update. That actually wasn't too far from the truth! We had an awesome 18 month run of things going well - better than we could have imagined 3 years ago. Matt had SIX MRI's over 18 months that were stable and beautiful and perfect.

Tuesday that all changed. :( The MRI itself was horrible. They had a difficult time putting in the IV and had to attempt in both arms before finally getting it in. Then Matt threw up in the MRI machine (again). He is quite sensitive to the contrast and it tends to make him feel nauseous. Then, the worst part of all came when we went in to see Dr.Walker and hear the results. The tumor has grown. A lot. In just 3 months, one view showed the tumor had doubled in size.

Our visit to PCMC turned into a whirlwind while we were squeezed into an appointment with oncology. One highlight of the experience was that we met the brand new Neuro-oncologist. He recently came to PCMC from California and I liked him very much. He was extremely thorough and had a fantastic accent (always a bonus. LOL!) Seriously, he made us feel very comfortable. He was very knowledgeable and interested in Matt's case. I am anxious to hear his recommendations about the treatment plan for Matt. It looks like radiation is the next step, for sure, followed by chemotherapy. We will see how intense the chemo will be.

So, right now we are busily, patiently, waiting. We have an appointment next Wednesday with the head of the brain tumor program at Huntsman cancer institute who also chairs the department of radiation oncology. I have also felt that I needed to get Matt's stuff sent to a pediatric brain tumor consortium hospital that does proton beam radiation. Protons are sort of the newest thing in radiation. I don't know if Matt will be a candidate, or even if protons are worth it if he is eligible. But, I left a message today for the doctors in Boston. For my own peace of mind, I need to be sure that we are doing the best thing for Matt in terms of radiation. Your body can only tolerate so much radiation, so radiation is a one time deal. I feel a lot of pressure to do everything JUST RIGHT. Should we radiate the tumor bed only or add the ventricles? Do we radiate the entire brain and spine, just to be safe? Do we use proton beam radiation? Is IMRT okay? What if we just do lateral? What are the pros and cons of each type? Is it appropriate to do a combination of all of the above for different parts of his brain? Sheesh. I should've become a doctor! :)

So, unfortunately, there is the update. It's not the update I would like to be writing. However, I have to keep reminding myself that this is exactly what we expected the treatment plan to be when Matt was diagnosed 3 years ago (almost to the day!) We have been able to stave off radiation and avoid radiating a 9 year old brain. It is a blessing that his brain had 3 more years to develop. Now we just need to continue treatment and pick up where we left off. Am I looking forward to spending 6 weeks away from home? No. Am I looking forward to another year+ of chemotherapy? No. Am I thankful that we live in a time and a place where these options are available? Absolutely! Life is still good even when it's not perfect and I am so glad to have had these wonderful, treatment free childhood years for my Matt!

Thank you, GH, for giving me my son back!

2010-07-22T22:19:00.000-05:00

Finally, finally, FINALLY, Matt was approved to start Growth Hormone. His last bloodwork came back with his GH at an 88. Boys Matt's age should have GH somewhere in the 300-400 range. While Matt is a big kid, he hasn't grown very much at all in two years - and this during a time when boys should be growing several inches per year! Our biggest reasons for wanting to get Matt on GH were not so much height, but rather:

More enegry
Better muscle tone
General sense of well-being
Improved blood sugar
Better management of cholesterol
Weight management (hopefully!)

Matt's energy level has been very low. He is always a good sport to exercise or come along with us whenever we are doing something active, but he would frequently fall asleep or become extremely fatigued after only a short amount of activity. Of course, part of this is related to his weight, but his symptoms are more severe than another overweight child. He also has such low muscle tone that it is difficult for him to move his body in normal ways. For instance, he can barely pull himself up into the Jeep. He cannot pull himself up into the tube when we are out boating and he can't pull himself up out of a swimming pool - all very normal things 11 year old boys should be able to do. This feeling of lethargy and general ickyness has been a real challenge! Again, it's not that Matt is unwilling to do any of these things, it's that when he does do these things, you can tell it's truly a miserable and uncomfortable experience for him. Also, at his last Pediatrician visit, they checked his cholesterol level. It was so high it was undetectable on their machine. It wasn't until we actually received the Growth hormone and I was looking over all of the information that I learned GH plays a critical role in managing cholesterol and blood sugar! Yay! I am anxious to see how GH helps with each of these issues but it already seems to be making a difference. Matt is wanting to go outside and play without us prodding. He is trying to exercise and he and I are actually 'training' for a 5K! We are using the 'couch to 5K' program and amazingly, he seems to be doing fine with it! He hasn't needed a nap on days we run/walk.

Today I took my kids, along with my 2 sisters in law and their kids to a new 'splash pad' park in the next town over. Matthew was in a good mood and was running through the sprinklers and having a wonderful time. I actually got all teary watching him. He was just enjoying the sprinklers with a big smile, but he was doing something active and something fun and he was enjoying the experience.

Thank you Growth Hormone - I really feel like you are helping me to get my little boy back!

Woo-Hoo!

2010-04-27T23:16:00.000-05:00

Just a quick note to mention that today we learned Matt's tumor is STILL STABLE! That's pretty fabulous news! We scheduled another MRI in 3 months, and then will discuss waiting 6 months before doing the one after that. I just LOVE it! Dr.Walker is always amazed at Matt's progress and health. It thrills him to see Matthew excelling in school and having a functional memory. I also think that Matt is just a fun kid to have as a patient. He is positive and upbeat, doesn't complain, and expresses gratitude to his doctors for all they have done. He cracks jokes with the doctors and is very laid back about any procedures that need to be done. Today, while he was getting an IV he went on and on about how it's no big deal if they need to poke him again because he gets lots of blood draws and he knows they are doing the best that they can, etc... He really wins over the nurses and lab techs! :)

Just another quick note about Matt. He was named the 'Student of the Month' for 6th grade at his middle school for April. It is really an honor! There are 1,400 kids at Matt's school. They choose 3 from each grade each month during the school year. That means only about 240 children are chosen as 'student of the month' during their time at the school. Matt has been nominated several times through the year, and this time he won! I guess that every teacher nominates one child per month and then once the nominations are in, the list of nominees are sent around to all of the teachers and the teachers vote to determine which children win. Matt was invited to a special ceremony and lunch with the school administrators and counselors. Warren and I were invited, and attended, as well. The principal spoke about the program and awarded each of the children a special certificate along with a gift card for $25 to Hastings (a local book/music/video game store). A local restaurant catered the lunch, which was held in the media center, and then that restaurant also gave each of the kids a gift certificate. It was a great experience and I am so proud of my boy! He works extremely hard at all he does and it shows!

MRI day Tuesday!

2010-04-25T22:47:00.000-05:00

So, this Tuesday is an MRI day for Matt. We are still on an every 3 month MRI schedule and I suspect that we'll stay that way for a while longer. Matt has the go-ahead to begin growth hormone from both our local Endo. and Dr.Lustig. Since there is some concern that GH might make the tumor grow, I bet they'll want to keep monitoring him closely. To be clear, there is no PROOF that indicates brain tumors feed on GH, but, of course, there are children who have brain tumors, who go on GH and whose tumors subsequently grow. Out of an abundance of caution, we have waited almost 18 months with a stable tumor before beginning GH. There are doctors who refuse to prescribe GH to children with brain tumors. We have very very carefully weighed this decision and feel like the benefits outway the risks. I always come back to something I heard when Matt was first diagnosed.

There is no point in saving a child's life if you don't allow them to live it.

I try to remember that mantra whenever I start panicking over Matt's health concerns, or begin to weigh what's best for Matt and am giving too much weight to his brain tumor. Of course, it is always a factor, but I don't want it to be the only factor. After 3 years of dealing with this, I think I've started to think of it as a part of him. Just one more trait of my boy that makes him who he is. It has positive and negative impacts, just like any other aspect of any of my children. We try to take it in stride, not solely focusing on it on a day to day basis, but still adding in the things that need to be done on a regular basis - things like blood draws, doctor visits with many specialists, and quarterly MRI's. It's part of who we are.

The 48 hours before an MRI are aggravating and terrifying. On the one hand, we are hopeful and optimistic, as the past 6 MRI's have been stable and have looked wonderful. On the other hand, we are always well aware that the beast in Matt's brain may decide to grow.

So, here yet again, I shamelessly ask for your prayers and thoughts over the next 2 days. They've worked wonderfully so far - so why mess with a good thing?? :)
Love,
Alli

Me, me, ME, it was all about MEEEEE.........

2010-04-14T00:17:00.000-05:00

Warren & I just returned from a trip to Chicago. A trip in which 6 things were missing. Six beautiful, boisterous, wonderful, demanding things were missing from this grand adventure. After several months of planning and debating and on again off again drama (they kept changing the date of Warren's meetings!) Warren and I escaped, sans children for six glorious days. Don't get me wrong, I adore my children. I seldom leave them. If you take out Matthew's hospital stays, I never leave them. We have gone on little mini vacations 3 or 4 times by ourselves and it is just fantastic. I know that sounds bad - like I am desperate to escape my life. Nothing could be further from the truth. When I escape for a few days, I come back recharged, am more patient with the little people in my life, and feel more blessed than I did before I left. Also, I think about them almost constantly while I am away. It's so funny! On Saturday we did something we had never done, despite many visits to Chicago and living there for 2 years. We went and had lunch on the 95th floor of the Hancock building. The views were amazing! I know it's a touristy thing to do, but it was fun. All I could think about, though, was that next time we are in Chicago as a family, I am bringing the boys (and girl, of course!) to lunch there. They would go crazy with delight! :)

I can't tell you how rejuvenating it is to spend 6 days doing nothing - or whatever you like. There was not a thought about whether we should eat at a certain restaurant because we were uncertain if they had highchairs. There was no haggling about which movies to see. There was no early morning wake up call (except the ones we requested from the front desk). There WAS an obscenely expensive dinner at Charlie Trotters (not doing that again......), two movies in a ROW (how long has it been since you saw two movies back to back?), a midnight waffle house run at an all-night diner, 4 novels, and lots of shopping (my favorite thing, not so much for Warren, but he was a great sport). Today was our first day back and I feel so happy and lucky and well-rested. The little things that went wrong (lost luggage, almost missed our flight), are much easier to deal with because I had a break. YAY! :)

Options, options, options..... But what's the right thing to do???

2010-03-29T00:45:00.000-05:00

Well, Matt and I had a whirlwind trip to SF a few weeks ago. It was really quite fun to go with just him. We were gone for 36 hours exactly. We arrived Tuesday afternoon and spent a few hours wandering around SF. We also went out to dinner, to a CREME PUFF shop that was next door to our hotel and then I took him to see Avatar in 3D - there was a theater directly across from our hotel. The next morning we woke up, had breakfast, wandered around for another hour or two and then headed over to the medical center for Matt's appointments. After his appointments we caught a cab and headed directly to the airport and home!

(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)

Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU. That was an adventure. This time went much more smoothly. We went fully intending to schedule a time to do the vagotomy. Dr.Lustig is still on board with Matt having the vagotomy. However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year. I guess Matt is part of an elite group! :) After we met with Dr.Lustig, we went to go see Dr.Farmer. She is the surgeon who would actually perform the vagotomy. She still does not want Matt to have the vagotomy. She thinks he is doing too well to perform such an experimental procedure. In other words, he doesn't have any obesity related diseases...... yet. She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery. It causes a very gradual weight loss and is reversible. I like both of those things. However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way. So, now I'm researching Lap Band. I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents. I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary. I heard back from him right away - he seems truly amazing, as well! None of the subjects in the study had HO. He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt. By the way, isn't the internet amazing?? I LOVE having access to these doctors that specialize in Matt's complicated issues. Overall, they are amazingly responsive and kind!

So, now I'm back to the same point I've been for the past year. What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)

My decision wavers almost every single day. Today I'm feeling like Growth hormone is the way to go. We can see if that helps his weight loss and muscle building and energy. If we start the GH, we need to wait 6 months before we do anything else to treat the obesity. Is pushing off treatment a good thing because it would buy us some time? Or is it a bad thing because we are delaying treatment that needs to be started sooner?

Warren and I both feel so conflicted!

The good, the bad, and the ugly. :)

2010-03-08T00:48:00.001-06:00

Last week Matt had a visit to PCMC to check up on his blood clots.

The GOOD news is that he was cleared to stop the Lovenox shots. He's given himself two injections daily for 6 months - that's approximately 360 injections! He's been a trooper and we figure it's good preparation for the growth hormone that will be started sooner or later and is also given via injection. :)

The BAD news is that if he ever clots again, he will need to remain on Lovenox or another blood thinner (like Cumiden) for the rest of his life. This is because they do not know what caused the clots. Matt has many risk factors. Besides his weight, he is on two medications that increase the risks of clotting - DDAVP and his steroids. Being dehydrated can cause clotting. Simply having a malignancy somewhere in your body increases the chances of a blood clot. Matt's hematologist believes Matt's clots were not due to one single issue, but they all contributed. We shall see! For now, though, he is injection free and we aren't really missing those shots one bit!

The UGLY. Well, I don't really have an ugly! Okay, so this is sort of ugly..... A few weeks ago I called San Francisco to make an appointment with Dr.Lustig - a pre-surgery appointment. His next available opening wasn't until August. His office lady said she was going to see about scheduling Matt for endocrine with Dr.Lustig along with surgery to discuss things - and hopefully get him in earlier than 6 months in the future! Last week I realized I hadn't heard anything back from them, so I thought I would call and check up on things. Apparently, they went ahead and made us an appointment....... for March 10th! Don't you think we would have liked to know this? We ARE flying in from out of state for the appointment! Thankfully, we were able to get a quick flight & hotel and Matt and I are going to SF this week. Warren was already scheduled to be in Chicago for work, so he can't make it to SF. I'm anxious and excited to speak more in-depth about the surgery and schedule a time for it to happen. Now that we've decided to go ahead and do the surgery, I'm anxious to get this show on the road! Matt seems to be doing very very well at the moment and I think it's a good time to do this minor procedure.

Randomness alert, Randomness alert! Absolutely not relating to the above information at all, this is our new, wildly entertaining time-waster. On our iPhones, we have this app that lego-izes any photo. You can take a new photo, or use a photo already on your phone. Awesome, huh?!? It also makes a very satisfying clicking sound when you push the button to turn your photo into a lego collage. The very best part is that the app is free. Yea for free entertainment!

All about ME!!!

2010-03-01T22:02:00.018-06:00

My name is Audrey.
I am 9 months old (I know, my mom can't believe it, either!)

I have two teeth.

I love it when my mommy puts my hair in pigtails - everyone says it's sooooooo cute!

Daddy is always saying mommy is, "out of control" when I am wearing fancy things like this coat. I don't know what he means.........

I am almost mobile. I just can't quite figure out how to make myself go forward!

I love feeding myself - pureed foods are SO yesterday!

My Lacey blankie makes me happy (Lacey is a very nice friend of mommy & daddy and she made my favorite blankie). I also love my Violet. She sings me to sleep every night.

One day mommy tried curling my hair with sponge rollers. Let's just say it wasn't a good look for me.

I pretty much have everyone wrapped around my pudgy little finger - especially Grandpa Ray!

I LOVE Bountiful Baskets!

2010-02-20T15:49:00.004-06:00

If you haven't heard of this co-op, you have to look them up! (www.bountifulbaskets.org) You make a 'contribution' to the co-op with your credit card, usually on Tuesday or Wednesday, and the next Saturday get to pick up a laundry basket full of fresh fruits and vegetables. The basic basket is only $15 and I've found the quality to be excellent. Today I went and picked up my basket. Here is what was part of one basket.

It included bananas, celery, sweet potatoes, butternut squash, brown pears, baby carrots, spinach, oranges, apples, broccoli, pummellos and tomatoes - and probably some stuff I'm accidentally leaving out. :)

I also added a 5 loaf pack of 9-grain bread, a 3 loaf pack of cinnamon raisin bread, and a 4 loaf pack of rye bread. All excellent! The bread added $21 to my total cost for this contribution. I spent $36 on what you see. AND, we got pummellos - I've never had a pumello. We're trying new fruits and veggies and eating healthier since starting Bountiful Baskets. YEA!

P.S. Never mind my 2 year old in the background of the photo holding toilet paper. LOL! He was using the packages as 'cars'!

Pebble Creek - Feb. 13, 2010

2010-02-16T09:35:00.003-06:00

WARNING: You will never get these ELEVEN minutes of your life back. Also, you might not be as entertained by it if you are not a Goodworth, Bray, Haderlie, or Richards...........

Messy Munchkins (and me)

2010-02-03T22:03:00.006-06:00

When my boys take my otherwise clean kitchen and make it look like this:

And this: (For the record, this is one evenings worth of homework, toddler play, scripture study, paper airplane making, cookie eating, and puzzle doing. I'm not sure the photos do justice to the total chaos and disarray and STUFF everywhere...... And I didn't even take a picture of what's UNDER the table)!

And I'm walking around, picking things up and grumbling to myself about those kids being better about picking up after themselves, and there are going to be consequences....... I am destined to bend over and pick up something like this:

I think Nate made my hands extra huge so that I could use them like scoops to pick up all their junk. But, somehow, I don't mind so much tonight.

My Christmas post.

2009-12-22T23:35:00.002-06:00

I'm not feeling the blogging groove right now. Soooooo, just watch this cool video. :-) It makes me happy! I also bought their entire Christmas album and it's a favorite this year (favorite of mine. Warren, not so much)!

Hey at least I got around to posting about Halloween....

2009-11-08T09:03:00.010-06:00

Better a week late than never, right? Right?

Here's 'Super Baby!' (In hindsight I should have dressed her as a monkey with a tutu and called her 'monkey princess' since that's Warren's nickname for her - don't ask. He'll just have to be willing to pay for the therapy.)

Batman was a little strong willed about wearing his treat bucket on his head. I have very few photos of him bucket-less, and, believe it or not, the one here is the only one where he isn't crying (a result of us trying to get him to take the bucket off his head for a picture). Anyhow, he was cute!

And here we have the 'Super Twins!'

Super DREW!

Super Nate!

SUPER TWINS!

These are their extremely EXCELLENT capes. The idea was stolen from my friend Deanne and the capes were sewn by Grandma. I would say that Grandma 'helped' me with the capes, but I'm not sure that by watching her sew them I was particularly helpful....

And here's our Rock Star!
Will started telling us that he wanted a mohawk several months ago. I told him that I would allow him to grow out his hair until Halloween and that we would shave and color it into a mohawk. He was SO EXCITED. Here he is getting his hair shaved.

And here is the finished result. His hair had gotten SO LONG!

And last, but not least, here is our Woopie cushion. Not bad for a kid who was in the ICU two days prior to Halloween!

We love Halloween (well, the boys more than Warren and I - parents just bear the brunt of sugar highs and kids who eat themselves sick). This turned into a great one. We kept it simple and it was fun.

A big bad adventure

2009-10-29T23:26:00.004-05:00

Well, we are back from San Francisco. To say that this trip was a bit of a fiasco would be an understatement! The plan was to arrive Tuesday morning, meet with UCSF neuro-oncologists Tuesday afternoon, meet with the Radiation oncologist Wednesday morning, meet with the Pediatric endocrinologist Wednesday afternoon, and then fly out Thursday morning. It was going to be a quick trip. All went according to plan for about the first half of the first day.........

We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.

Sigh.

The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........

The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.

Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!

Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!

The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.

San Francisco here we come!

2009-10-13T23:17:00.002-05:00

Matt has a follow-up in San Francisco with the hypothalamic obesity specialist in two weeks. For awhile now I have been feeling like I wanted to get another opinion on other aspects of Matthew's treatment for his cancer issues. UCSF is a brain tumor consortium hospital and I wondered if they might have some different treatment ideas for Matt's unique set of issues. I have put off making the calls to arrange a visit with other clinics at UCSF and decided to call today even though I was pretty sure it would be too late to make the arrangements. I was so excited when I started to call around and found that everyone was really willing to make things happen for Matt! Now, over the span of two days, Matt will meet with the pediatric neuro-oncology practice and a pediatric neuro-radiologist, along with the Endocrinologist we've met with previously. The oncology doctors will review Matt's chemo protocols (they call this his 'roadmap') that he has already done. They will discuss any treatment options we may have overlooked and will recommend a course of treatment. Then the radiologist will discuss Matt's radiation future. We are most interested in meeting with her because she will be able to talk to us about whether the surgery for the obesity would be a bad idea in light of the future radiation treatment Matt may need. We will discuss which type of radiation would be most beneficial for Matt's particular case and determine whether SLC has the capability to perform that radiation. Some larger centers have different fancy radiation abilities. We'll see what might be best for Matt. Lastly, we will be meeting with Dr.Lustig to discuss the vagotomy surgery for weight management. It will be a whirlwind of a trip but I am so excited to meet with these specialists. I feel so thankful that everything worked out so smoothly. It is meant to be!

A girl in a house full of boys....

2009-10-11T17:47:00.003-05:00

After church, Will was playing with Audrey. Unfortunately, her bow fell off. Fortunately, she had a big brother there to remedy this crisis!

A moment of motherhood perfection

2009-10-09T22:41:00.004-05:00

Once in awhile, amid the complaining, fighting and screaming, I have a moment that makes me suspect I'm not totally ruining my children. It seems that all those family home evenings about loving our brothers (and sister) and doing nice things for them, and sticking up for them when someone is being mean might have sunk in. Perhaps Will was actually listening to General Conference when President Monson talked about true Christian service - you know, the 'warm fuzzies talk'?? Anyhow, the other day William did this for Matt.

Sometimes I forget that my other children are participants in this whole cancer experience, as well as Matt. They are acutely aware of Matt's medical routine. Will knew exactly what medications to set out for Matthew, where they were kept, that he ordinarily takes his evening medications with milk, and that he needed a shot. This is one of the reasons we have decided to allow Matthew to take a trip through the 'Make a Wish' foundation. It promises to be a spectacular experience. We are looking forward to a whole week where we will all have a fabulous time, and hopefully, our 8 and 6 and 2 year olds will forget for a moment that they have a big brother with cancer. Of course Matt is the 'wish child' and he had the experience of choosing his wish and will be the spotlight of the week BUT I feel like our other children deserve the trip as well. Matt's siblings deal with many unanswered questions. And they are totally and completely patient as they deal with Matt's repeated hospitalizations and almost weekly day-long doctor visits two hours away. They remain cheerful and are wonderful for Matthew. They keep his life as normal as possible, and I think they understand their important role better than I give them credit for!

Update!

2009-09-30T22:52:00.003-05:00

So, today Mr.Matthew had a full day of doctor visits at PCH. We went to see his opthamologist first. Good news there! Nothing has changed in regards to his vision and eye health. We do have to go get the 'visual fields test' (this checks his peripheral vision), but that is just something they do every so often with Matt, not something that means they are worried something is wrong.

Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!

Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!

Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!

Bare Lake

2009-09-27T23:30:00.003-05:00

The view at dusk!

Recent developments

2009-09-24T22:53:00.005-05:00

So, I guess I should update the latest about Matt. He has had such a fantastic summer! His central line was removed which has meant one significant thing - SWIMMING! It has been nice to not have to worry about caring for his line.

Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!

Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).

The next week was a short week because of Labor Day.

Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.

Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!

Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)

Why we love boating

2009-09-24T22:43:00.004-05:00

(Matt had already gotten out of the car and gone up to bed.)

Labeling kids

2009-09-24T22:34:00.005-05:00

I think children are too quick to be labeled these days. Andrew, though, believes that everything should be labeled and took the liberty of labeling Jake (where IS that Drew when I'm working on organizing his closet?!?)

A closer look......

Some Natisms

2009-09-24T21:54:00.006-05:00

Nate is such a wonderful, fun child to have in our family. He has a pretty strong personality (note the 'Believe the Hype' shirt....) that I believe will serve him well in this life. He oozes confidence and is not afraid to stand up for things that he believes to be unequal or not right. I hope I can instill in him the power that personality trait can carry. If used for good, he will be an amazing example to those around him and people will continually be drawn to him. He is a natural leader and we are lucky to have him!

A few weeks ago we took the boat and headed to Willard Bay with just the older boys (Jake and Audrey napped at Grandma's house, which is very close to Willard). It was a fantastic day! We packed a picnic, ate on the boat and everyone had lots of turns tubing and playing in the water. After we were finished boating, we had the boat tied up to the dock while Warren went to get the car. All the sudden I hear a splash and look up to see Nate struggling in the water off the dock - without his life jacket! It is quite deep and Nate is not yet a strong swimmer, although he's had swimming lessons. Thankfully, I just hauled him out of the water and he was fine. After I get him calmed down, though, I asked him what he was doing. Did he fall in?

"I just wanted to see if it was deep," he replied!!!

What a way to test! I think the experience sufficiently frightened him and I'm confident that jumping in lakes sans life jacket will not be repeated (by Nate, at least).

This summer we also headed to Park City a few times. We discovered that on 'off' weekends, we can get a two bedroom condo type room at the Marriot Summit watch (a time-share resort). We took advantage of a great rate and played in the amazing pool, let the children go to 'kids night out' while Warren and I went out to dinner, and just generally had a wonderful few days away. Nate and Drew have learned to ride two-wheelers this year, so we took the bikes up to ride the biking trails around Park City. After their ride, Warren and Nate were in the parking garage putting bikes back on the bike rack. It is just the two of them until a pretty lady walks by and Warren is mortified to hear Nate do this:

That's our boy!!!

A baptism, two birthdays, and a baby blessing!

2009-08-16T21:27:00.006-05:00

Last weekend was a bit chaotic in our home!
William turned 8 the end of last month, and in our church that is when children are given the opportunity to be baptized. Will was so excited for this great day. It was also time to bless Audrey and we decided to have both events the same weekend so relatives coming from out of town wouldn't need to come down two weekends in a row. It was only after scheduling everything that I realized Will's baptism day was also Nate and Drews sixth birthday! It was a fabulous weekend though, spent completely together as an extended family.

I can't believe my baby twins are SIX years old! They start Kindergarten the end of this month. Weird!

Will and Warren before changing into their white baptismal clothing.

Will and his display. He chose what he wanted to bring to show about himself and I think the choices are so cute!

Grandpa Ray holding Audrey right before Will's confirmation.

Audrey, after her blessing.

Our family adoring our sweet girl on her special day.

Four generations.

Sweet Sadie

2009-06-26T01:57:00.002-05:00

Sweet Sadie Huish became a brain tumor angel this morning. My heart is heavy as I think of her family. They had a truly amazing perspecive and spirit. I learned so much about the way I want to be as a human being as I watched them navigate their trial with so much grace and courage - always doing what was best for their girl. Please pray for them as they go through these next hard days, weeks, months, and years. We love you Sadie! You and your family have been in our families prayers for awhile now. We will continue to pray! Thank you for your example and your bright smile, even during those most difficult of days. You were truly an inspiration to so many people!

A few pictures of my girl!

2009-06-04T21:28:00.003-05:00

I still haven't uploaded the photos from my actual camera yet, but I did get some more with my phone. Audrey is getting so CUTE!! I mean, newborn babies have a certain charm, but for the first few days it's a very scrunchy, squished, splotchy charm! :-) Today I think she's looking a little cuter (is it bad to admit I don't think newborn babies are terribly cute......?)

Our BIG announcement!

2009-06-02T22:26:00.003-05:00

I mean, really big. I mean 9.5 lbs. big!!! :-)

Audrey, minutes after birth. Look at that wild hair!!

Yesterday, I was feeling guilty because I was opting for an induction of Miss, "I'm too comfy in here for my own good". She had been measuring small at her 20 week u/s and although a later u/s showed all was well with her growth, I was still convinced she was going to be small. For one, I felt like my belly was a lot smaller than with previous pregnancies, for another, I had only gained 24 lbs., and, previously, I've NEVER gained less than 45.

I came to the hospital at 7:00 this morning. I am VBAC, so the doctor didn't want the Pitocin high at all. He came in about 9:00 and broke my water. By noon, I was in a really great labor pattern and really starting to feel the contractions. I had an amazing nurse who let me move around and was fabulous about getting me things to try. I sat on the birthing ball, walked the halls, used a rocking chair, etc.... Soon after my labor was really going strong, we decided to stop the Pitocin and see if I would stay in labor. At this point I was a 6. Happily, my contractions continued and I discontinued the Pit for the remainder of labor. The rest of labor was spent using a squat bar. I highly recommend this bar that attaches to the bed. It gives you something to hold onto and pull or push against to counter the strength of the contractions. I didn't 'squat' with it at all, but It helped me immensely (and helped Warren's poor fingers, as well!) About 2:00 I began feeling the need to push, the doctor was called, and we began the process of bringing this baby down. Even though I was fully dilated, Audrey was pretty high. Eventually (with a lot of screaming on my part! LOL!) I pushed her out. Her shoulders were pretty stuck, but I DID IT! :-) Once they weighed her, it was clear why she was a little difficult to push out. She was 9 lbs. 8 oz. and 21 inches long!!!! I couldn't believe it! That's 9 oz. bigger than Jake, my largest previous baby.

I am so glad I chose to induce, as I'm not sure I could have delivered a baby who was much bigger! Also, I am thankful I was able to labor without an epidural. I REALLY don't think I could have pushed her out if I was numb from the waist down. It took every bit of my effort and concentration to deliver her!

She is so sweet with black CURLY hair, big chubby cheeks and she already has rolls of fat on her arms and thighs! I'm not convinced she would have ever come out on her own, LOL! She was pretty comfy in there, and obviously eating well!

Audrey, about 8 hours old - she has a BOW although it is blue........ maybe I'll get a pink one tomorrow! :-)

Excellent day and STABLE!!!

2009-05-13T01:46:00.003-05:00

Matt had a slew of appointments today. First an MRI, then a visit with Neurosurgery, then a visit with Oncology. It was wonderful to learn early in the day that the tumor is STABLE!! Gone would be perfect, but stable is excellent - and about as good as it gets for us! Dr.Walker is not recommending surgery at the moment. He also said he would try to hold off on radiation.

We celebrated our good news with a visit to PF Changs for lunch in between appointments. I joked that if we had received bad news, we would have eaten our lunch in the hospital cafeteria! :-)

After lunch Matt had an appointment with Oncology, where he hadn't been in almost 7 months............BAD MOMMY! We got all up to speed with them. They are also recommending we hold off on any treatment as the tumor remains stable. Matt will be having his Broviac removed sometime very soon - like this week! I feel sort of giddy and surreal that we so unexpectedly received this gift of Matt's cancer stabilizing. One day, we were plugging along, fighting this thing with chemotherapy, and talks of radiation and a 4th craniotomy, and now, suddenly, it's stable and we are cautiously going to get on with our lives. It's a very strange feeling! I know that things can and probably will change in an instant, but for now, we will enjoy what we've got!

Surprisingly, all of the doctors we met with were very much in favor of Matt having the surgery to treat his hypothalamic obesity. As I was explaining the surgery to Dr.Walker and we discussed the issues Matt's facing, I mentioned that the surgeon wasn't sure Matt should have the surgery because most of the kids are so much bigger than Matt. He echoed my exact sentiments when he said, "why would you let it get that bad if you had a treatment that you thought might work??" Exactly. Also, both Dr.Walker and Dr.Lemons had heard of Dr.Lustig and thought him to be on the forefront of obesity research and very well-respected in the medical community. This was so reassuring! I have worried and wondered what *other* doctor's thought of Dr.Lustig. Just because a doctor is well published and presents at a lot of conferences doesn't automatically make him a doctor I want performing experimental procedures on my son! It sounds like that's not the case with Dr.Lustig, though. Both of our local doctors felt confident that we were seeing the right doctor for Matt.

More San Francisco, More Questions.

2009-05-10T11:33:00.003-05:00

This past week, Warren took Matt back to San Francisco to talk more about treatment options regarding the hypothalamic obesity. The bad news is that the testing confirmed the diagnoses. Matt's insulin levels during his oral glucose tolerance test were off the charts 30 minutes after beginning the test. It should take about 90 minutes for his insulin to 'max out' and it shouldn't ever get as high as Matthew's was. Also, although we've been pretty happy about Matt's weight gain this month (after all, it was only about 2 kg.!), the doctor was very worried. Because we track his weight in Kgs., it doesn't register how much that would be in pounds. On the one hand, two months ago he gained 5 kg. or ELEVEN pounds in one month. That's why 2 kg. feels pretty stable! However, that is 4 lbs. With a gain of 4 lbs. a month, Matt is on track to gain 50 lbs. over the course of a year. When you put it that way, it's much scarier! Also, because he has had several months of even more extreme weight gain, he is actually on track to gain closer to 70 lbs. this year. YIKES!!!

Warren and Matt also met with the surgeon who is working with Dr.Lustig and actually performs this experimental surgery. Warren was really impressed with her - she is the head of pediatric surgery at UCSF. She was leery of doing the surgery just yet. For one thing, she didn't think that Matt looked 'that bad' yet. The other children who have had this procedure are so big they can't fit in the MRI machine...... I don't know how I feel about that. Do we really need to let it get that out of control before we try something aggressive to help him? I'm uncomfortable with the 'do nothing' route just because we happened to catch the hypothalamic obesity earlier than some other patients do. Her other rationale, though, made more sense. She is also not willing to do the surgery until Matt's cancer treatment is finished. Her fear is that by doing the surgery to treat something secondary to his cancer, that the cancer treatment options will be limited. She is not willing to risk that. So, we have a slew of appointments on Tuesday (MRI's, Neurosurgery, Oncology) and we will try to determine the best course of treatment for Matt's remaining tumor. I am also anxious to get these doctor's opinion on the surgery itself. I trust our doctors (especially Dr.Walker in Neurosurgery), and think it's a good idea to discuss risky, experimental procedures with them! Later next week we also have an appointment with Matt's local endocrinologist. We are going to discuss the possibility of using the medication (Octeotride) to treat Matt until we are able to get more clarity on the surgery. It feels better than doing nothing!

Broken arm: Our count is up to three.....

2009-04-20T11:23:00.004-05:00

Yesterday I had a meeting right before church. As I walked down the stairs to the basement, Jake realized I was leaving and got upset. He started screaming and pulling on the gate at the top of the stairs......... The gate opened. :-(

Jake fell about halfway down the carpeted stairs, but it was a pretty hard fall, as he initially began falling head first! We looked him over and thought everything was fine. He was walking, he stopped crying pretty quickly, and he seemed to be moving well. We took him to church for the first hour and then Warren brought him home for a nap. When I got home, and Jake woke up from his nap, he seemed really 'off'. For instance, when he woke up he was just lying in bed, on his belly, crying. Usually he is standing up. Then, when I took him downstairs, he wouldn't stand up from his sitting position, and he couldn't quite manage to pick up the toy he wanted off the floor. I decided to take him in to the Instacare, just to have them look him over. I didn't even know which limb I was concerned about! Was it his arm? His hip? His leg? I couldn't quite tell what was wrong, only that he wasn't moving quite right. The doctor at Instacare was great and we figured out that it was most likely his arm that was bothering him. After some X-rays (where Jake did GREAT, by the way!) we saw the break in his arm - right above his wrist.

I am kicking myself that the gate was up, at all! Jake is very proficient on the stairs, and we have already removed the gate on our upstairs stairway. If there hadn't been a gate on our basement stairway, Jake wouldn't have fallen (ironic, huh!)

When Jake and I got home, the boys were pretty interested (injuries, in a house full of boys are always pretty exciting......) I jokingly said that since Will, Drew, and Jake had all broken their arms, now Nate and Matt were going to have to break their arms, as well. Nate looked at me, very concerned, and said, "Did the doctor say that..........?" I had to laugh!

I called our family orthopedic surgeon (yup, families with all boys need a regular orthopedic surgeon............) and he won't cast Jake until Wednesday. They want to make sure the swelling has had a chance to go down. So, for now, Jake is stuck with this hard splint and sling. I think keeping those on him are the hardest part so far! He seemed much happier with nothing holding his arm stable!

At least the break is not affecting his thumb sucking hand!

Apple has Fabulous customer service!!! (Assuming, of course, that you don't actually have problems with any Apple products.........)

2009-04-16T23:08:00.004-05:00

I. Am. So. ANGRY!!!!
Usually, I am not a 'cool gadget' type of gal. I am the type who waits several years to replace her cell phone because I'm not completely sure I'll be able to figure out how to work a new one! I made an exception, though, when I purchased an iPhone. When my iPod was stolen out of our car, and my cell phone went on the fritz, I decided to splurge. Warren agreed, and my iPhone with the pink case was my Christmas present. I have come to depend on that thing, and love it beyond any reason. It had cool games for the kids (and me!) when we were bored. It took cool pictures. It had amazing apps that could do almost anything. It played music. It had a GPS. And it kept me organized with it's calendar.

I babied my iPhone, always keeping it clean and charged and using a hard plastic case with a screen protector.

On Monday, the unthinkable happened. My iPhone was in my purse as I got out of the car. I bent down to pick something up off the garage floor and heard something fall. My iPhone had slipped out of the pocket of my purse and landed on the hard cement of the garage floor. It took a moment to register that the shattered black glass on the ground was my iPhone!!! I couldn't believe that a gadget meant to be used multiple times per day was so fragile that it would shatter from a 3 foot high fall!

Today I had to go back to Salt Lake for an appointment for Matt. I stopped at the Apple store, certain that they would listen to my sad story, see my *practically brand new* shattered phone, and do something about it! After all, Apple is famous for their amazing customer service. I couldn't have been more disappointed. There were lots of, "I'm sorry's" all around, but the best they would do for me was 'just' have me pay $199 for a new one - the exact same amount I paid for my current one less than 4 months ago. They acted like they were doing me a favor! I'm sorry, but I don't have $400 to pay for my phone every 4 months! I decided that I would go to AT&T. They are the ones who sold me the phone. I figured, at the very least, I would be able to purchase an inexpensive phone to use for now. Well, they were even less helpful. They were also unsympathetic to my cause and the only option they gave me was to either purchase a 'basic' phone without incentives (after all, I still have 20 months left on my contract) - the prices began at about $200, or I could add a line to my current phone, adding $20 per month to my bill and purchase a phone at the promotional price (these started at about $70). Any option, I choose, I am getting totally and completely screwed!

I was just starting to become an Apple fan. Our family owns 2 iPod shuffles, 2 different generations of Nano's, a 60 gig video ipod, a 120 gig classic ipod, an iPhone, and a MacBook Pro. I buy a lot of music and videos from iTunes and our family has spent MANY thousands of dollars on these various Apple products. I am furious that they would do nothing to help me the ONE time an Apple product of mine has needed replacement (or repair, I wouldn't have cared, either way).

As a classic Yuppie, I buy some higher end products. Each and every one of them is guaranteed to my full satisfaction. I have never had a 'splurge' product that wasn't offered with superior customer service. Too bad the iPhone didn't meet that expectation. Just an example, I have a set of glass mixing bowls from Williams-Sonoma. They are also made out of tempered glass (the same glass that shattered on my phone). I have owned this set of 12 bowls for 13 years. I have dropped them numerous times, as I use them daily. None of them has even a chip. None of them has shattered. If they did shatter, even after all this time, do you know what Williams-Sonoma would do? They would replace them - without blinking an eye! That is the sort of customer service I expect from high end products, and one of the reasons I purchase high quality products. The iPhone and customer service that came along with my purchase have been extremely disappointing.

Holy Hand-me-downs, Batman!

2009-04-06T00:20:00.004-05:00

This small-ish laundry basket is full of all the things that I have bought for our new little girl. I have only purchased a few things and they have to *really* catch my attention. I've also tried to buy things in larger sizes. Most of that basket is full of clothes sized 18 months, as Gymboree had an excellent rack of darling clothes for $4.79 each, and they even had coordinating pieces! They didn't, however, have a ton of baby stuff on the rack, so I bought about 6 outfits for two winters from now. I'm quite proud of my restraint in purchasing clothes, as a big part of me wants to go CRAZY and buy everything I think is even remotely cute! It is way more fun to shop for girls clothes and accessories than it is to shop for boy stuff!!!!

This photo explains, in large part, why I'm not feeling the need to go purchase a ton of new clothes for this little angel! Everyone keeps giving me huge sacks and boxes full of FABULOUS baby girl clothes! Most of the clothing in these bags is for up to SIX MONTHS OLD - seriously. She will NEVER be able to wear all of these clothes. If I changed her outfit 3 times per day for 6 months, there would still be things in these bags that were never worn. To give a bit of perspective, I just cleaned out Jake's drawers and gave everything from his first year to a gal with a baby exactly one year younger than Jake. His entire first year wardrobe filled 2 sacks, and they were packed pretty loosely. Now I've got, what, six sacks for our baby girls first 6 months!?!? Crazy!!! Now, don't get me wrong, I'm excited to have such a plethora of pink to choose from, I think I might just need a way to share the love! Does anyone need any baby girl clothes..........?

A picture to explain our panic.....

2009-04-01T23:25:00.006-05:00

This is a graph I (okay, Warren actually - I'm a dunce at Excel) just made of Matthew's weight gain over the past 18 months. Keep in mind that before his diagnoses, his weight also increased. That was one of our only indicators that something was wrong - Matt went from being in the 50th percentile for weight and 75th percentile for height (where he had been since birth) to shooting off the charts in both height and weight. In hindsight, that was a sign of his hypothalamic brain tumor, but at the time we just worried he wasn't getting enough exercise! Anyhow, back to the graph. We've got a pretty good record of Matt's weight since diagnoses because we track his sodium levels along with his weight. I went back and looked at his weights over these past 18 months and made a graph. You can see his gradual climb of 25 lbs. the first year after diagnoses (still extreme), but once you hit his surgery date at the first part of December, you can see the almost unbelievable 25 lb. spike to now!

Meeting with Dr.Lustig was very reassuring and very refreshing - although it did leave us with a ton of questions about which direction to go with Matt's care. Dr.Lustig is *the* person researching hypothalamic obesity, and he reassured us that there is absolutely nothing we could do to stop the weight gain. We have had several people tell us that Matt just *HAS* to be sneaking and hoarding food, and that we needed to lock our cupboards. I have had a really hard time believing that because anyone who knows Matt knows that he is the most honest child on the planet. He has an almost debilitating conscience, is honest to a fault and he says he's not sneaking! Also, I do all the cooking and grocery shopping. I never notice food missing and I am with Matt for the majority of his meals. I spend 90% of my life in my kitchen and I have no evidence or suspicion that Matt is stealing food! Dr.Lustig discussed a study done in the 1970's in which 40 children were confined for one month. They were fed a strict 500 calorie per day diet (that's the equivalent of 2 pieces of bread, a piece of fruit, and a glass of milk!) for that entire time. At the end of that month EVERY SINGLE ONE OF THEM had gained weight!

Dr.Lustig has discovered a connection between the way the hypothalamus is damaged and the messages it is sending to the body in individuals with this disorder. When you eat, and create fat cells, those cells have something called Leptin inside. When you have a lot of Leptin (fat), your Vagus nerve (which goes from your brain to all of your organs, including the stomach) tells your brain that you have a lot of energy. It tells your brain to make you feel full, and it tells your brain that your body is free to USE that energy - for exercise and such, but also for basic functions like sweating, maintaining body temperature, etc.... For some reason, in people with HO, their brains get the message that they have NO Leptin, when in reality they have oodles of it available. For this reason, the body goes into starvation/survival mode. They create excess insulin to help pack away these calories. So, Matt's brain thinks his body is starving and won't allow him to use the calories that he has stored so amply. This also explains why Matt is often cold and clammy, doesn't maintain his body temperature well, and doesn't sweat (truly - no sweat, even when we've gone on a long hike and everyone is hot and sweaty!)

There are very few options for treatment of this extremely rare disorder. The first is a drug called Octeotride. It suppresses the excess insulin production and has been marginally effective. Dr.Lustig has written several papers and done several research studies with this method. He says it can often help to stabilize weight, but most kids don't lose any weight. It is also a drug that is not approved for this purpose, so you have to appeal your insurance company. The drug is also extremely expensive ($1,600 per month) and difficult to administer. It is a shot and is apparently takes some extra training for the nurses who give it. It is not a practical option for long term, but some people have found it very helpful for the 6 months or so they can remain on it.

The second option is even less well researched. It is a surgery where they actually go in and clip that Vagus nerve - where all the Leptin/brain messages are being mixed up. It has been extremely effective in animal studies (scary, huh!) and they are just beginning to use it on people with HO. Dr.Lustig is doing a study right now, but so far he only has 5 children who have done it. The success with those 5 has been great, but it's not exactly a large sample! By cutting the nerve, the insulin production goes down permanently, there is a weakened hunger mechanism, and the brain can no longer send those confused, "you're starving to death" messages. Obviously, our concerns lie in the lack of history, but with such a small population that has the disorder, I'm not sure we'll ever get a study that thousands of children have validated.

So, that was basically our trip! We've got a lot to think about. Warren will take Matt back the first part of May. I'll be 36 1/2 weeks pregnant. I would prefer to not give birth on an airplane, so I think I'll probably stay home....... although it will be hard, as I want to be there! During that next trip, we can talk more about the surgery, as I'm sure we'll have lots more questions by then! We are also meeting with the surgeon just to get a sense of the reality of the surgery, recovery, side effects, etc.... It sounds like it would be a quick outpatient procedure, done laparoscopically. I just wish there were more options! Even more doctors who were researching this would be great! Everything I google comes up with articles this doctor has written, and I'm not sure I'm really getting unbiased information! :-) I guess I should just be thankful that there is *someone* out there working on ways to help.

Oh, and San Francisco was fabulous! The weather was perfect all 3 days. We wandered Fisherman's wharf on Sunday - eating fresh seafood on the patio of a restaurant that afternoon. Monday was spent in the hospital nearly all day long, although when we left we ate the most fabulous Mediterranean meal. Maybe I was just starving (since Matt had to fast, we all did), but everything tasted so wonderful! Then Monday morning we walked down to Union square, had a yummy breakfast and wandered expensive shops for a bit. When we came back to our hotel we checked out, had our luggage stored, and went to the top of our hotel to this amazing restaurant (Top of the Marc) where we had expensive salads and expansive views of San Francisco. It was beautiful - and who knows if we'll ever stay at that hotel again, so it seemed like something we should take advantage of while we were there! It was a fun, but quick trip. I wasn't all that excited to land in SLC, wearing my capris and spring shirt with sandals only to find *more* snow and crazy cold temperatures! Come on Spring!

Baby Blues.

2009-03-18T15:55:00.002-05:00

No, not the REAL baby blues some people get........ I mean every bit of baby gear, EVERYTHING I own, is BLUE. I'm too practical to go buy all new pink stuff (Warren, keep your comments to yourself, here), but after 5 boys, I don't want people assuming this little one is a boy, too! :-) Silly, I know. I did start out, 11 years ago, making sure I bought gender neutral gear. However, after boy number 2, then 3 and 4, and finally 5 came along, we sort of gave up on the whole neutral color scheme thing. Our infant car seat is black, silver and blue, my jogging stroller is navy, my diaper bag is navy, all crib bedding and blankets definitely have a boy theme and are largely navy, bright blue, or red. We don't own a pink, purple or even yellow sippy cup! Potty chair? Blue of course - actually we own 2 of them.

Sort of a pointless post, but it's what's on my mind at the moment! :-)

Oh, just FYI, Matt is going to see the San Francisco doctor on March 30th! Yippeeeeee! Warren and I will take him on the 29th, he's got appointments most of the day Monday, and then we'll fly back Tuesday. Carolyn (my MIL) and Megan (my SIL) will be in charge of my other crazy boys. Keep your fingers crossed that this doctor is a-m-a-z-i-n-g! I think I've got my hopes up a bit too high!

YIPEEEEE - San Francisco, here we come!

2009-03-08T20:01:00.002-05:00

Not for anything 'fun' mind you, but something even better - a specialist who might be able to help Matt with his Endocrine issues! If you google anything related to pediatric endocrinology, especially if it relates to obesity, this doctor (Dr.Lustig) is mentioned. He has written and researched and pioneered a TON of studies on Matt's particular combination of issues. Parents on both my Panyhypopituitarism and Pediatric Brain Tumor boards just revere this man. His name comes up frequently. Well, in November I emailed him asking about a consultation and second opinion on Matt. My request was met with a rather curt reply that basically said we had competent Endocrine care and that he didn't recommend travel out of state to see him. He said he would be happy to consult with my doctor, but basically he didn't want to be involved with Matt's case. I was kind of grumpy about it, but figured there was nothing I could do.

Well, last week we had an excellent appointment with Matt's endocrinologist. We got a lot of things worked out that have sort of been hanging. Matt's weight has increased considerably since his last surgery. I don't believe his diet has changed, and he doesn't seem to be eating an abnormal or unhealthy amount. However, he has gained 10 Kg.(about 25 lbs.) since his surgery in December, and 5.5 Kg. in the past month. That is a gain of 11 pounds. In ONE MONTH! Seriously, you cannot eat that much, or have that sedentary of a lifestyle. I think about it in pregnancy terms - I've gained 18 pounds in 7 months and that is a pretty dramatic weight gain. To gain 10 more pounds than that, in less than 3 months is really quite mind boggling.

Anyhow, Dr.Donaldson (our Endo.) said he doesn't see Hypothalamic Obesity enough to treat Matthew. He has had a handful of patients with the disorder, and has been wholly unsuccessful in treating them, even when he has consulted with Dr.Lustig. He wants to hand over care to Dr.Lustig - and it was even his idea! I was so excited to go home and draft another email, mentioning that Matt's doctor was the one who felt like Matt needed to see him. He replied quickly and said okay. I'm waiting on the details of exactly when we need to book our tickets, but I do know they are working on it. I've been cc'd on several emails talking about tests and things that Dr.Lustig wants done.

I am just SO EXCITED and HOPEFUL that this Doctor has the skills and experience that will help my boy!

Why do we buy them beds?

2009-03-05T00:38:00.007-06:00

Last night, as Warren and I were checking on our boys before we went to bed, we found this. Hmmmmmmm, where are Nate and Drew? I know we tucked them in, all snug in their beds........ I remember reading a story, telling them several times to brush their teeth, and listening to them say their prayers.

But here we have an empty bottom bunk.......

And an empty top bunk........

And two 5 year old boys, snuggled up on the FLOOR! :-)

I am clearly missing the novelty of sleeping on cheap polyester blankets, on the hard floor, and sharing one puny pillow. All the while with two comfy beds, complete with cozy flannel sheets within sight! I am getting OLD! :-)

Good News!

2009-02-26T22:07:00.002-06:00

This week Matt had his first set of MRI's since his December surgery. We went down to the appointment fully expecting to talk dates for his 4th craniotomy to try to get rid of the rest of the tumor, and then radiation. I have always felt uneasy about radiation. The thought of radiating my 10 year old's brain just freaks me out! I know it might be necessary some day, but will happily push it off as long as possible - forever would be excellent.

Anyhow, Dr.Walker (the neurosurgeon) was pretty psyched to see that the remaining tumor is stable! You have to understand what 'stable' means to our family. Matt will most likely always have some tumor in his brain. It is not in a spot that the doctors can just remove it. Stable is about as good as our world gets! The tumor actually measured a bit smaller than his December MRI showed. This was most likely due to swelling that is present right after surgery, but is gone now. Because of the stability, Dr.Walker recommended doing NOTHING! No radiation, no surgery, no chemotherapy, nothing at all! We have to clear that idea with Oncology, but I don't anticipate them arguing with the recommendation. This is very exciting news for us, as Matt has been on some sort of treatment since August 2007. By the time Matt gets his next MRI's, he will have been free from treatment for 5 months. This gives us a wonderful chance to focus on his Endocrine issues. These are more difficult to manage on a day to day basis, as after every surgery we have to work hard to get him stabilized!

So, basically, unless we see a physical change in Matt that necessitates treatment earlier, we are FREE until this new little one arrives to our family. I think it's a tremendous blessing!

Some sad news, though, my Grandfather passed away last Friday, and we had his funeral service today. He has been in poor health for several years, but it still makes me sad to see his time on this earth come to an end. Matt was particularly sad. With his strong emotions coming through uncontrollably, funerals are very difficult for him to attend. He loved my grandpa, and would often receive coins as gifts from Great Grandpa Willie. Great Grandpa will be missed by our family - and especially by my tenderheart little boy!

Words. Eating them. And sharing them.

2009-02-09T23:28:00.003-06:00

Sharing my words:
Today at the grocery store I ran into a friend from high school. It is always surreal to see someone from your past in such an unexpected place! It was fun to chat with her and meet her beautiful daughters. In the course of the conversation she asked what had brought us to Cache Valley. To me, this story is very much a part of Matt's cancer story. We had been living in Chicago, we started feeling pretty strongly that it was time to move closer to family. An opportunity arose (Warren working from home is not a 'normal' opportunity. Very few people at his firm work from home, and it really is an unusual situation) and we moved close to family. Less than 3 months later, Matt was diagnosed with brain cancer, had his first craniotomy, and was on chemotherapy. So, you see how the 'how did you end up here' conversation inevitably brings up the 'my son has brain cancer' conversation? I'm just never sure that I should dump our story on a friend I haven't seen in 14 years! On the one hand, it feels a little 'pity party-ish' to dominate the conversation in this way. On the other hand, I think my feelings would be hurt if an old friend didn't mention something about her child with cancer and I found out through the grapevine. It's so awkward! I'm just not sure what I would say to me if I was hearing my story! :-)

Eating my words:
I've always had pretty strong feelings against over medicating children. I think ADD and ADHD can be mis-diagnosed and that too many of our children are being medicated. I am a big proponent of good mental health and believe in the issues that need to be treated. I just feel like many children are walking around in a medicated daze.
So, of course, in the way that happens the longer you are a parent, I am having to eat my words and admit that sometimes our children do need to be medicated with drugs that I've always been horrified about using on children.
Matt's last surgery has created two new issues. First, his hypothalamus no longer will regulate his appetite. This translates into an almost insatiable appetite. You know that, 'I can't move I'm so stuffed' feeling you get after Thanksgiving dinner? Well, Matt doesn't anymore. His hypothalamus will also make him put on weight even if he is eating a reasonable diet, and his body will not burn calories in a normal way. We are working hard to try to avoid 'hypothalmic obesity' at the moment. Matt entered the hospital weighing 63 kg. on December 11th. Right now he is hovering around 70 kg. That translates to a weight gain of 15 lbs. in less than 2 months. It's scary! We saw the Endocrinologist a few weeks ago and he put Matthew on an appetite suppressant. It does seem to be helping! Hopefully we can train Matt's mind to eat the right amount, even if his body isn't helping to regulate that at all!

Our 2nd issue is concerning Matt's 'frontal horn'. Apparently, this part of the brain helps control and regulate emotions. Matt no longer has a frontal horn. The neurosurgeon thinks it was eaten away by tumor. Ever since Matt's diagnoses we've noticed some mild mood lability - getting overly upset about small things, etc.... We feel very lucky because some brain tumor or brain injured kids get really angry or really mean or really violent. Matt isn't that way at all. He just can't stop himself from getting extremely upset about really small things. For instance, the other day he misplaced his shoes. We were looking for them and I saw that they were under the table. When I called Matt over to show him where they were he began sobbing pretty hysterically and saying, "I'm such an idiot - they were right in front of me the whole time! I feel so stupid." It's sort of bizarre to see someone get so upset over lost shoes! Then, the most recent episode happened at school. Apparently the computer teacher asked the children to only print out one of their book reviews. She said that she would take any extras that were printed out, and she made sure to ask the children to only push the 'print' button one time. Well, Matt accidentally double clicked the button and somehow ended up with 3 extra copies of his assignment. He burst into tears in computer lab, in front of all his friends. When I asked him what had made him so upset he said he was embarrassed because he 'hadn't followed the rules'. I tried to explain that we all make mistakes and that it was no big deal. I pointed out that no one in class had thought it was a big deal, and even the computer teacher hadn't been the least bit upset. He was still devastated that he had done something 'wrong'. That day, I knew we needed help, so I called the clinical psychologist who we've worked with in Oncology - an absolutely amazing resource and wonderful person! He went and talked to the head of Child Psychiatry and they were able to get us in right away. This doctor was so nice. He recognized that the problem was stemming from the damage to Matt's brain and prescribed a low dose medication. He also recommended some therapy sessions which he is going to do. He said it would be helpful to teach Matt some strategies for dealing with these feelings before they make him so upset. I am thrilled! We go back next week for a medication check, and Matt's first therapy session.

So, now I've got my child on appetite suppressants and anti-depressant/anxiety medications. I do think they are a necessity, and I also think we've been seeing results from them both. But, I have sure had to eat my words and re-arrange my feelings about children on both these types of drugs!

Oh, and on a happy note, Matt won at the next level of 'Reflections'! Now his poem is being judged at State! If it wins at State (it is one of 20 entries for his age group), it will go onto Nationals! We are so proud of him and excited that his writing is receiving recognition. It's so good for him!

Funny, no?

2009-02-05T17:55:00.002-06:00

I was just sitting with Matt and Will at the kitchen table while they complete their homework. As I was correcting Will's math assignment I came across this question:
60 seconds make one:
60 minutes make one:
24 hours make one:

Pretty straightforward stuff. Here was Will's answer:
60 seconds make one: minute
60 minutes make one: WHORE (misspelling hour)
24 hours make one: day

Perhaps it's my lack of adult conversation (Warren has been travelling a lot and is in Chicago right now), or my dirty mind. I don't know. I do know that it made me laugh out loud....... and it's not like a joke I can share with my 7 and 10 year olds. So, here I share my warped mind and confess that sometimes my children's homework makes me laugh. :-)

What an amazing kid!

2009-01-28T22:04:00.003-06:00

A few months ago, Matt received the application to enter the 'Reflections' contest. Matt is a really amazing writer. Seriously, I don't think I wrote as well as he does when I was in high school! (insert sarcastic commentary on my high school education here)...... He has been working on a trilogy of books since last year. So, in the year he's had malignant brain cancer and short term memory loss, he has also written 3 long books (about 40 pages each) that are really engaging and fun to read. So, anyway, back to Reflections. Matt wanted to enter book 1 of his trilogy, "The quest for peace". We got all set to submit it and realized that for literature there is a word limit. Darn. Matt was upset, so I encouraged him to write something else. He came up with this poem (the theme for the year, was "WOW!").

Baby Jake

This marvel, my brother, he's better than any other.
He's cute, loveable, and extremely huggable.
I love him, as he loves me,
It's because we're family, you see.
Jake's cute and gentle, so I write about him with my pencil.
My littlest brother, one of my best friends, the love that we share just has no end!

I still remember the day Jake was born.
It was during the evening, not early morn.
When I first saw this small child, I thought,
"He's my brother, so tiny, meek, and mild."
But as I watch, Jake is growing each day.
In fact, he has even started crawling away!

Jake's growing and watching, so each and every day, you can bet that I'm trying to choose the right way!

Jake is a wonderful gift, no doubt.
Sometimes I wonder how I could ever be without this baby,
which Heavenly Father has given to me to take care of,
and hope he grows up to be like me!
This tiny boy grows so fast each day that I - I just don't know what to say
except........
WOW!!!!!

A few weeks after Matt submitted his poem, he told me they had an assembly for Reflections. He said he had been asked to read his poem, but that he hadn't won anything. Oh well. However, a week or so ago, I received the school newsletter that said Matt had been one of the first prize winners in literature for his school. The next day, I received a letter inviting him to a district wide awards ceremony that also mentioned he had not only won at the school level, but also the city level! Then, just on Sunday, we received a telephone call that said his poem had also won at the regional level and was going on to be judged at the State level! I am so proud of him!

I was really worried when I found out Matt had won at the school level, but hadn't realized he had been chosen as a winner. We're always worried about Matt's memory, if he is missing things at school, etc..... and for him to 'miss' something like this is pretty significant! Once I spoke with the Reflections coordinators, though, I felt a lot better. They said that at the school level, they don't use 'winner' language. Every child gets recognized. She said that she didn't think it was strange for him to not realize he had won. That made me feel so so so much better! Now I can just help him enjoy his success!

I think boys and girls might be different.......

2009-01-21T14:34:00.004-06:00

This photo was taken with my phone by William. He sits next to Jake in the car and faces him, as Jake is still rear facing in his carseat. I thought it was a great photo!

Since we've found out that our baby is a GIRL, I have been thinking a lot about what will be different about raising her. It's sort of a strange thought, as so much of my identity is wrapped up in being the mom to all these little boys. I know what to expect at various stages, what to ignore, what to correct, what to laugh at, and what to cry over. Of course my boys all have unique personalities, strengths and weaknesses, but there are some constants that I feel I can depend on.
One example: about the age of 5, we have worried with each of our boys that they need to get their hearing checked! Matt went from a very responsive 4 year old, to a 5 year old who seemed to not hear us a lot of the time! In retrospect, I think he was just discovering the world around him and was very able to tune out the rest of us! Will was the same way - and we actually did take him to get tested. Of course the test turned out perfectly. When my mom spent those days with my boys while we were in the hospital with Matt, she was very concerned and wondered if we have ever thought about getting Drew's hearing tested. We just laughed. Hopefully, he doesn't really have a hearing problem!

Another example, here is Jake with a little farmer doll my mom and dad got him for Christmas. He really loves the doll, but there is absolutely nothing nurturing about the way he plays with it!
Here he is holding the doll and reaching for something.

And here he is whacking the heck out of the doll with the stick to his stacking toy.

I'm worried about being patient and nurturing to a little girl. My parenting style is pretty militant, ("Boys, shoes, NOW!") which my boys respond very well to. They know we love them, we laugh and play a lot, but there isn't a lot of 'touchy-feely' that goes on. It's easier to get boys to open up over a video game, not a heart to heart sitting on their beds! There's lots of wrestling, lots of physical activity, lots of noise. I hope I haven't de-sensitized myself too much from girl stuff! I hope I can be sweet and loving to a little girl to help her feel secure.

On the upside, I think I've gotten over my weird feelings about shopping in the girl section! Yesterday I went to SLC for a doctor's appointment for Matt. We took Carolyn, and shopped a little bit.

I absolutely couldn't pass up this darling, fur trimmed coat ($12 - Nordstrom Rack), and fabulous shiny red Stride Rite Mary Janes ($8 - Ross dress for less). They should both fit her when she's about 18 months old, so Christmas 2010! Do you know how long I have wanted to buy shiny Mary Jane Shoes? (Oh, that and ruffle bum tights - I'm still working on that one!)

We had our big ultrasound today.....

2009-01-09T00:55:00.002-06:00

And, shock of our life (well, 2nd shock after finding out there was another little bean in there at all)......

IT'S A GIRL!!!!!

You read that correctly, it is not a sixth boy for our family. I think the boys were a little taken back. Will keeps referring to the baby as 'him' and saying things like, "mom, if this baby is a boy, let's name him......." Perhaps the finality of the gender hasn't quite sunk in for him. :-)

We decided to let the boys come with us for the ultrasound. We've never brought our children before, but they were interested in coming, and I thought the older 4 would enjoy seeing our baby. They really thought it was neat - especially when the tech put the machine on 3D. The boys said she looked like an alien - LOL! After she had done all the measurements and checked and double checked the gender (without telling us, but Warren and I have seen enough boy ultrasounds to be pretty sure this baby was missing some, um, parts) the tech asked the boys, "so what are you boys going to do with a baby sister?" The boys were shocked - it was so cute!

I'm feeling a little bit overwhelmed. I went into a store this afternoon and was browsing the baby girl stuff. I couldn't even begin to decide what to buy - so I left empty-handed! I felt like an imposter in this section of store I've ignored for 11 years now. I'm sure I'll get over that feeling pretty quickly. I'm also feeling oddly naive. I've sort of felt like I was getting good at this parenting thing (some days......) and with boys I have a general idea of what to expect and what to do. I am so nervous about how a girl will be different! Don't get me wrong, I'm excited, but anxious!

We're Home!

2008-12-21T22:16:00.002-06:00

They finally released Matt from the hospital late this morning. It is such a relief to be back in our home! I am so excited to sleep in my very own bed! Matt seems to be very happy to be here as well. He just looks better when he's not in a hospital bed. He was able to get all cleaned up and has enjoyed the attention of his younger brothers. Will, Nate, and Drew have followed Matt around all day like little puppies. He has been darling to induldge them in games of 'Candy Land' and has even given each brother a gift from his stash he received in the hospital. FYI, if your child has to be hospitalized, the week before Christmas is the time to be there! I think our stuffed animal collection doubled, at least! There was always someone bringing around little gifts or something fun to do. Matt was also able to meet some Hockey players, and we were even there when the Jazz came! Unfortunately, Matt was getting an MRI right at that moment and didn't get to meet the players, but they did take a polaroid photo of themselves in his room and left him an autographed basketball.

Thank you again for all of your prayers and, for those of you close by, your amazing help! My mom had the boys the majority of the time (although Aunt Megan took them the first night so my mom could be at the hospital during surgery) and Grandma received tremendous amounts of help. Dinner was brought in every night, people chauffered Nate and Drew to preschool, our walks were shoveled, countless plates of cookies were provided and consumed, and many other acts of service were given to our family (some that I'm sure I don't even know about!) We are so thankful, and we know we are so blessed to live in a place where neighbors and friends reach out and serve one another. We truly have no idea how we will ever repay you - but we thank you from the bottom of our hearts!

Slowly Stabilizing and out of ICU!

2008-12-19T17:04:00.003-06:00

This morning, when Warren and I went in to see Matt, we learned he had just been moved out of ICU! We were pretty thrilled. His sodium stayed in normal ranges and was slowly coming up all night. Woooo-Hooooooo! So, he is back on 'the floor' and seems to be resting well and feeling well. His confusion is a lot better, as is his short term memory.
Right now, we are waiting for him to stabilize while taking his DDAVP. They've been holding that because it further concentrates the urine, and would make the low sodium problem worse. He tends to run high, though, because of his DI, so we need to make sure he is stable on the medications he will be receiving daily at home. He just got his first dose a little while ago, so we'll see what happens. Hopefully all goes well, his body adjusts, and we can go HOME. It feels frusterating and hopeless to be stuck here. I have this child who seems like he feels well, looks well, and isn't hooked up to any moniters or anything. We're anxious to get out of here (not that the cafeteria food isn't great............). ;-)
This morning Primary Children's had an AWESOME little concert in the foyer. Jericho Road performed. It was really incredible to hear their uplifting harmonies in such an intimate setting. We are totally buying some of their music! Afterwards, we went up and met them. Matt really enjoyed their songs - especially Homeless from the Forgotten Carols. That's one of his favorite songs and he was thrilled to hear it performed so well.
Here is a photo of Matt with the group.

Change in plans, disappointment, backslide.

2008-12-17T10:25:00.003-06:00

Two days ago, when I wrote my previous post, Matt was FABULOUS. Yesterday......not so much. He was tired and lethargic and, most frightening of all, really confused. He couldn't remember what time of day it was when he woke up, ordering Ramen Noodles at 8:00 a.m. because he thought it was evening. He complained of a more severe headache than he had previously, and just wanted to sleep. Neurosurgery ordered a C/T scan right away because of the confusion and headache and that came back perfect, so it wasn't a problem with excess spinal fluid. That was a relief! Once we started getting labs back, it became clear what the problem was. Matt's sodium was falling - and falling quickly. In the PICU and the first little while on the 'floor' (hospital lingo for a regular hospital room), his sodium was running higher than normal. It's common for kids to have low sodium after brain surgery, and Matt's situation is complicated because of his DI, which makes his sodium difficult to regulate anyhow.

Yesterday evening, when his sodium plummeted 10 points in 4 hours - and fell to a dangerous 124, he was re-admitted to the PICU. He spent last night there and his sodium seems to be stabilizing. It is still quite low, but hasn't fallen anymore. Hopefully he will get moved back to a regular room soon!

In light of this change, and even before the sodium began falling so dangerously low, Dr.Walker had 2nd thoughts about going in for another resection so soon. He decided he wanted Matt to be 100% stable with his DI before another surgery happens. So, it looks like we'll be going back home for Christmas, and having another surgery a little later. Dr.Walker was thinking January. We'll see what actually happens! We know another craniotomy is in Matt's future, but the specifics will need to be worked out. Once again, we appreciate Dr.Walkers caution in regards to our son. It is disappointing to go home without completely getting rid of the tumor, but we will try to be patient! Good things come to those who wait!

Amazing Matthew! Fourth day post-op.

2008-12-15T18:16:00.006-06:00

Matt is in a regular room now, and we totally scored! This room has a private bathroom (the ones across the hall are shared), a rocking chair, AND a COUCH that sort of unfolds and creates a bed. It's a big improvement over the sleeper chairs we're used to!:-) Matt has had a great day of resting. He only requested pain medication about 30 minutes ago. I am amazed, once again, at how quickly he recovers from brain surgery, and how little pain is involved. For both dinner last night and lunch this afternoon, he has requested that we take him down to the cafeteria. I think it does him good to get out of his hospital room. Dr.Walker also gave the order to remove his 'brain drain' i.e. External Ventricular Drain, since it's not really putting anything out.
Here's a picture of him about 48 hours after surgery. He's still in ICU here. The amazing blanket was made by our friend in Naperville, Lisa. It's cotton on one side, and minkee on the other, machine quilted with two coordinating fabrics around the edges. Matt sleeps with it every night and I love that it's so cozy and comforting while he's here in the hospital.

Dr.Walker has been in several times to see us to discuss Matt's next surgery. It is going to be on Wednesday, rather than Tuesday. We talked a lot about the potential side effects, and the fact that Dr.Walker doesn't feel like he is going to be able to get out every last bit of tumor. This part of the tumor surrounds a very vascular area that controls large motor function - specifically the legs and feet. Dr.Walker is going to be very cautious around that area, and feels like there will almost certainly be tumor left there. Hopefully, radiation will take care of the rest! for this surgery, he is going to go right through the bony part of Matt's forehead and between the hemispheres of the brain. Dr.Walker says he won't even have to go through any brain tissue since, apparently, the hemispheres will separate during surgery. I think that's AMAZING!

Scans

2008-12-12T18:18:00.002-06:00

This is the working of the PICU. Matt was scheduled for scans, 'sometime this morning.' Sometime this morning is actually 1:00 in the afternoon. We finally go down to scans around 1:30. Then, we didn't hear results from Dr.Walker until about 4:30. It's as 'in the morning' as the PICU ever gets! :-) Not that I'm complaining - just explaining so you all don't think I've abandoned you.

I can't believe how much tumor Dr.Walker was able to remove. He really did get out all he could see and cleared out all the most sensitive parts. We feel so incredibly blessed that this was able to happen - and that Matt seems fine! He's still been sleeping a lot. The surgery was right in the hypothalamus and so Dr.Walker feels the extra tiredness is to be expected. Matt has been up and talking. He has enjoyed sitting up and ate dinner (chocolate ice cream first, vegetable soup with crackers second).

Now for the sort of bad/surprising news. Because of the angle Dr.Walker was at during Matt's surgery, there was a portion of tumor that he could not see. You can totally look at the direction he came in, and see why this particular small section would have been invisible. Dr.Walker removed all the difficult parts to remove - in the most sensitive sections of the brain, and he thinks the remaining tumor would be much easier. He wants to go back in...... on Tuesday. He will use the same incision - made just a little larger/longer. It seems like the thing to do. I can't see any advantage to waiting until Matt is all the way healed and back in school to do this again. Dr.Walker likes the idea of the incision being still new and everything being fresh and easier to open up again. I can't even imagine how giddy I will feel knowing Matt is TUMOR FREE! So, this afternoon presented another unexpected turn of events. We'll spend the weekend thinking about this and praying that we are making the right decision for Matt. Dr.Walker will come back on Monday, having discussed things with the other neurosurgeons in his group, and having thought about things, as well. But, it sounded pretty much like another craniotomy will be happening on Tuesday! Oh, and by the way, we explained things to Matt and told him that Dr.Walker wanted to perform another craniotomy. Matt didn't even hesitate to tell us that he agreed. He is very excited, as well, to be able to say he's tumor free!

We heard WORDS!

2008-12-11T21:41:00.002-06:00

We are currently in the PICU with a very sleepy Matthew. He's not fully awake from the anesthesia. We have had some encouraging moments, though. He has opened his eyes several times, changed position's while he was sleeping, spit out his manual airway thing, squeezed the nurses fingers with his hands, and pushed against her hands with his feet. The best part, though, was just a moment ago when he said, "I need to go to the bathroom." We're pretty stoked!

This is a bit different than what we've come to expect from our previous two brain surgery experiences. Matt's been awake after every surgery - out of it, but awake. Last time, when I walked in and rubbed his arm and asked him how he was, he replied, "I feel like crud!" This time he is much more deeply asleep and less responsive. Hopefully that means he is comfortable and that the rest is helping his body recover.

I'll update in the morning, probably after his MRI.

We talked to Dr.Walker

2008-12-11T16:20:00.002-06:00

3:20 - Dr.Walker just came in to talk to us. He felt very optimistic about the surgery and was able to get out all the tumor he could see! It's hard to explain how cautiously elated we feel at this moment! Dr.Walker said the tumor was farther reaching than he had realized. It went all the way around the 3rd ventricle and down to the very bottom of Matt's brain. Matt will have an MRI tomorrow morning and we can see for sure how much (if any!) of the tumor remains. We're still pretty nervous, as Matt hasn't woken up yet. This means Dr.Walker hasn't performed any neurologic function tests. I can't wait to see him and see for myself how he is doing!

Updates.......

2008-12-11T15:47:00.002-06:00

12:00 - The nurse said they had just started. We're not sure exactly what that meant. :-) Ordinarily we receive calls saying they've just opened, then that they've just reached the tumor, then that they're just closing. Based on the next call, we think she meant they had just started the resection (rather than just opening)!

2:45 - We hadn't received any updates, so we had the waiting room nurses call for an update. The nurse said they were just starting to close and Matt should be moved to the PICU in about an hour. She said he had remained very stable throughout the surgery. All of his vital signs had been excellent and he hadn't needed any blood products - all good things! Now we just wait to speak with Dr.Walker and find out exactly how he felt about everything and how much tumor he thinks he was able to remove!

He's in......... now the waiting begins.

2008-12-11T11:48:00.003-06:00

We arrived at the hospital at 7:45 this morning (after sleeping at Carolyn's house in Layton last night). Matt's surgery was scheduled for 9:15. We got word shortly after sitting down in the pre-surgery waiting area that they were running a bit late. They finally came in to talke to us, and took him into the OR at about 10:30.

I wanted to thank everyone for putting Matthew on the Temple prayer rolls. I believe in the power of prayer. I know that special blessings come when individuals are prayed for in the Temple. I also believe that it really only takes one temple to receive those blessings! However, it gave Matthew so much comfort and strength when we looked over all the Temples prayer rolls that was on. He got teary when he realized how far reaching his support system really is. Thank you again for your support and love!

I will update again as we receive the telephone updates over the next several hours while he is in surgery!

Request......

2008-12-04T15:52:00.005-06:00

Matthew is feeling *really* anxious about his upcoming surgery. Truthfully, I am too, and I think it's rubbing off on him! There are SO MANY unknowns, and so many things that could go wrong - I can't even begin to list all of the potential side effects. I am trying to remain positive. Matt has done remarkably well with his previous two surgeries and has NO side effects from them. Everyone is thrilled with our overwhelmingly positive outcomes. This time feels a little different, though. Dr.Walker is going in for the express purpose of removing as much tumor as he can. He is going in deeper than he has before, and will be closer to those ultra-sensitive parts of Matthew's brain. I was just thinking how cool it would be if we could get Matt's name on as many Temple prayer rolls as possible. I think it would really buoy him up to see that so many people at so many Temples were praying for him multiple times each day. If you feel so inclined, it would mean a lot to our family if you would consider putting him on your local Temple's prayer roll. Then, leave a quick comment letting us know which Temple's prayer roll he is on.

Thank you so much for helping, supporting, and loving Matthew and our family!
Oh, and for those of you who may not know us well, the name for the prayer roll is Matthew Goodworth.

P.S. We've had some questions about exactly where Matthew's tumor is located. If you were able to get right to the center of his brain - about the level of his nose and ears, that's where it is. If you could slice Matt's brain into quarters, the tumor would be right where the 4 pieces would meet.

A tribute to a great Christmas Story!

2008-12-01T23:58:00.000-06:00

We bought ourselves our own 'Major Award'! WE think it's hysterical and have a perfect window to display our very own 'leg lamp' (which lives in Warren's office when it's not the holidays.)

News, news, news, lots of brand new news!

2008-11-25T22:12:00.002-06:00

Today was a big day for Matt. He had scans, then a visit to Oncology, then a visit with his Neurosurgeon.

While Matt was in scans, Warren and I started to panic because it was taking a much longer time than usual. Warren went back to check on him and learned that when they had injected the contrast, it had made Matt sick and he had thrown up all over. :-( Poor boy! That's never happened before, so we hadn't come prepared with a change of clothes or anything. They found him some scrubs and he wore them the rest of the day. He looked so cute and everyone kept making Doogie Hauser jokes (which of course, he didn't get since he's only 10.........) He was embarrassed that he was sick and he was embarrassed to be wearing the scrubs but we made a joke out of it. I told him to just tell people that he had just graduated from Harvard medical school and was just starting his residency. :-) This seemed to cheer him up and by the end of the afternoon he was strutting around in true doctor fashion!

Oncology was pretty uneventful. We learned that the tumor had maybe grown a bit, but nothing huge. Dr. Lemons thought we would be fine to keep on his Temodar for the next 3 months and then re-scan.

We then went to Neurosurgery to see Dr.Walker. He did not like the look of the scans, at all. He said it doesn't seem like the chemo is doing anything and he is recommending another craniotomy to see if he can get more of the tumor out. He was really encouraged with how well Matt did with his last 2 craniotomy's and felt good about the amount of tumor he was able to remove. He wants to try again and showed us on the scans how he would go in and where he thought he could remove more tumor. We trust Dr.Walker. He has always seemed to be very familiar with Matt's case, and has a knack for being conservative at the right moments and for being aggressive at the right moments. I agree with his recommendation, but am so nervous about another major brain surgery. We've played the brain surgery lottery twice and WON! Both of his surgeries have had great outcomes with minimal ill side effects. It feels like such a gamble to go in again! But....... the risk of not going in is risking this tumor continuing to grow, affecting his quality of life, and always being there. I guess I feel like the risk of surgery is worth the possibility of the tumor being removed, or even partially removed.

Dr. Walker did give us the option of waiting until summer with scans every 6 weeks in the meantime. This scenario didn't work as well for me because, well, I'm having a baby this summer! I know, I know, Jake was our caboose - and he WAS, but apparently there is another sweet baby up there for our family. I promise you - none of you are more surprised than Warren and I! Luckily, we think babies are always the good kind of surprises.

So, summer was less than convenient for a craniotomy. Oh, also, it looks like we'll be going back to the whole radiation idea. So, not only did I need to figure out the best time for my son to have a brain surgery, I needed to figure out when, afterwards, would be the most convenient for us to be in SLC everyday for 6 weeks for radiation. Again, summer is much harder because my children do not have as much going on. People are on vacation and it's just harder to find someone to fill my shoes during the vast summer months.

Dr.Walker gave us several dates to choose from, and I think we've decided to go with December 11th (yes, yes, I know that's only 2.5 weeks away). This way, Matt only has to miss one week of school - and it's the week before Christmas which is always less than productive, anyhow. Then he's got almost 4 weeks to recover and rest before going back to school in January. Just in time, probably, to be gone for 6 weeks of radiation............

As always, we're worried about making the right decisions for Matt. It's such a fine line of allowing a child his childhood, and fighting for him to have an adulthood. We are blessed to have such wonderful doctors to help guide us. I don't feel pressured to do one thing over another. The doctors do make their recommendations (this is their job, after all!) but ultimately we have a lot of say in the matter. We're still finalizing this next step in our minds. We are praying and thinking and researching, but so far it feels like the right decision and a step in the right direction for Matt.

Andrew.......

2008-11-24T17:57:00.003-06:00

Time: 4:45 p.m.
Place: My Kitchen

Matt is sitting at the table doing his homework. He asks if he can have a mini tootsie pop. I tell him, "yes".

Andrew overhears this exchange and is quick to ask, "can I have one, too?" Since Drew and Nate are home sick today, they have indulged in several little lollipops. I told him, "No, you already had some today."

Drew, with a pouting lip says, "but I didn't have any RIGHT NOW!" :-)

Very true, indeed.

The Big Oh-One! :-)

2008-11-09T22:43:00.004-06:00

Today my sweet newborn baby turned one year old - how did that happen?!? We celebrated this milestone yesterday, as Warren is traveling this week and had to leave right after church today. We had the easiest, most laid-back party ever. It was a real treat, as we have never lived near family for any child's first birthday party. It was so fun to get together with all the people who love Jake most. We ordered hot sub sandwiches from this yummy place called 'Papa Kelsey's'. If you are ever in Logan, check it out! The steak and everything sub is pretty amazing! Along with the sandwiches, I ordered a large pizza for the children, a party pack of individual bags of chips, and drinks. It was a seriously low-key, but delicious party! I was pretty proud of Jake's cake. Don't look too close, as it's pretty tilty, the layers were too thin since I didn't make quite enough cake batter, and had little finger swipes out of the front (hmmmmmmm, I wonder who could have done that???) It was a homemade yellow cake with chocolate buttercream icing - yum!

Here is Jake enjoying his birthday cake. He was so funny! We expected him to smoosh the cake around with his fingers, but nope! He just picked up the hunk of cake and began chowing down. Then he cried when it was gone. Apparently chocolate is a hit with him!

I had to laugh when, during the present opening, Jake became obsessed with this little balloon my dad had purchased to put on top of Jake's gift. This is him making a beeline for the gift that had the balloon attached.

And here he is, successful in his attempt to get everyone to do everything he wants! Will was so sweet during Jake's party. He really tried hard to make sure it was a special day for Jake. I'm loving Will's hat here. I'm not sure when he put on the dress up hat, but it sort of makes the moment!

Every single photo I got of Jake the whole rest of the day, he was holding that silly balloon! I just had to laugh at what a classic 'one-year-old' moment it was! Luckily, there were many children there who were more than happy to 'help' Jake open his gifts and then admire and play with the toys, since he couldn't be bothered with any of it! :-)

Really sad day......

2008-10-31T01:13:00.003-05:00

Today Matt and I attended the funeral for Marcus. It was a beautiful service. There were hundreds of people in attendance, many of them high school students. Marcus played in the marching band for his high school, and I lost it right before the service when the entire marching band marched in dressed in their full uniforms. To see such solidarity and support from these special teenagers was really moving. After the service the band lined up in two rows to make a path and the casket was carried between the rows, then the family followed. Although it was sad, the service was very uplifting. In our LDS faith, we believe that life on earth is a small part of our eternal life, that it is a time for testing and trial. We believe that when we die we will be able to see our loved ones again. This doctrine was repeated many times throughout the service and it brought me comfort. The most difficult part of the day was seeing Karen. My heart was breaking for her. To watch your child suffer and then accept a reality that children shouldn't have to face must have been so difficult. It makes me so sad and terrified that brain cancer is taking so many children. Since Matt's diagnoses, I have known of 2 other children in this valley with brain cancer. They are both gone now....... Matt's diagnoses is slightly more positive. He has a grade 3 Pilomyxoid Astrocytoma rather than a grade 4 Anaplastic Astrocytoma, but I still get scared, and I still think this awful disease shouldn't be taking our children away from us. Today was a somber day of reflection.

Prayer Request!

2008-10-24T17:46:00.002-05:00

Please say a prayer for my friend, Karen, and her son Marcus and their family. I mentioned that Marcus had a recurrence of his cancer a few posts back, and he is failing fast. I feel so heartsick for their family. I've met Karen several times (we both live in Cache Valley), and she has been a source of strength and support to me. They need prayers of comfort during this time!

I can't believe Jake is nearly one - and other stuff!

2008-10-21T22:12:00.002-05:00

Today Matt had an Oncology clinic visit. It was just a check up and resulted in nothing terribly exciting. His counts look good. He always looks and acts as healthy as a horse - particularly when you're comparing him with some of the other kids in oncology! We always feel incredibly blessed with Matt's relative health when we are there. Carolyn came with us and it was wonderful to have an extra set of hands. Jake was a little tired and cranky so it was so helpful when she took him for a little walk so we could visit with the doctor.
After leaving the hospital we went to Crown Burger (mmmmmmmmm, Crown Burger.......) for lunch and then I had scheduled Jake to have his photos taken. Being the slacker mom that I am, Jake has never had professional studio photos taken. Now, it's not quite fair, since we've had Diana living with us and she takes some AMAZING photos of him all the time, so he hasn't been totally neglected on the photo front! Anyhow, my cousins wife works for Kiddie Kandids and so I made an appointment with her. My little man looks so grown up!

This photo is one of my favorites because it so perfectly captures Jake with his 'magic bunny'. I'm sure I've mentioned Jake's 'lovey' on here before. I found this bunny at the store and he fussed until I handed it to him. As soon as I let him hold it, he put it up to his face, put his thumb in his mouth and became the happiest, most content baby on the planet. Hence the name, 'magic bunny!' I wanted to capture the love Jake has for this soft little toy, and I think this photo comes pretty close!

Lastly, on a whim, I threw in Jake's Halloween costume. I am so glad I did! I actually bought a large 8x10 of this picture that I plan on framing and putting out each year. He is a skunk (if you couldn't tell), and on the bum of the skunk are the words, "Little Stinker" that you can see when he crawls around. He is so CUTE!

See, maybe we WOULD have cute girls!

2008-10-19T22:07:00.003-05:00

Diana has a large collection of wigs that she brings out at Halloween. My boys love putting them on. There's something about a wig that really turns you into someone else. In Nate-a-lina and Drew-n-fer's case, it turns you into GIRLS! :-)

My weakness (well, one of them........)

2008-10-03T23:18:00.007-05:00

Is there anything on the planet more fantastically indulgent than a fine hotel? Warren and I have had the opportunity to stay at some pretty amazing places. Right now we are at the Four Seasons in Chicago. The linens are sumptous, the service is amazing, and without our children, we are enjoying ourselves immensely! In fact, they 'upgraded' us to a 'residence'. We are in a Four Seasons apartment. It has a large living area, full dining room, and a kitchen along with a large bedroom. We're feeling pretty spoiled!

Lobby of the Four Seasons in Chicago - oooooh la la!

Some other wonderful places we've stayed:
The Intercontinental, also in Chicago. We often stay here when we visit Chicago. The pool is spectacular!

The Swisshotel in Boston was the beginning of the end for me. Warren and I 'Pricelined' a hotel and ended up with a wonderful price for the Swissotel. I was so comfortable in that room and I think I enjoyed it a little bit too much! Before this experience, I was perfectly happy in a Motel6 and I figured a hotel was just a place to sleep when you couldn't be home. Now I know, though, that a stay at a fine hotel can fully rejuvinate me.

For our 10 year anniversary we stayed at The Boulders in Arizona. This resort has these darling little individual cabin type rooms called 'casitas.' They are open and airy and each has a real wood fireplace. One of my favorite memories of our trip was waking up early and sitting out on our own private little balcony, wrapped up in the warm blanket available in our room, reading the newspaper and drinking a cup of cocoa - Heavenly!

Our very favorite hotel is the Grand America in Salt Lake. When Matt was sick, after 10 full nights staying at the hospital with him, my mom talked Warren and I into taking a night away. We booked a room at the Little America, but they were full so they moved us over to the Grand. It is THE nicest hotel I have ever stayed at! The bathroom was all marble, the furniture was beautiful and comfortable, the bed was heavenly. We even got room service that night and the food was so good.

So, now you know my weakness! I enjoy being pampered at a wonderful luxury hotel. It is so fun!

Sweet prayers.

2008-09-14T00:02:00.003-05:00

I am so thankful for the faith and steadfastness that I see everyday in my little boys. They continually pray for Matthew. Every morning, mealtime, and evening, whoever is praying asks that Matt can 'feel better' and that his tumor can go away. Last night Will was offering the prayer and he asked that Matt could feel better. Then he went on to ask, in the sweetest and most humble little voice, if Heavenly Father could help Matt's tumor to shrink and asked that, "it might shrink and shrink and get so tiny that it is just gone." That is what we all hope for, stated so eloquently by my barely 7 year old. I believe that the faith of my children is necessary for me to maintain my faith. They teach me lessons everyday. I love them all so much!

Unreasonable people - or good reasons not to fly FRONTIER AIRLINES!

2008-09-09T20:51:00.004-05:00

Warren travels quite a bit for his work, and I think he's a pretty savvy traveller. Today he had an experience that was just horrendous! He was supposed to fly out of Midway airport at 8:00 p.m. on FRONTIER AIRLINES. He arrived and attempted to check-in. Apparently, though, he was only 38 minutes early for his flight. FRONTIER's policy is that you must check in 45 minutes prior to your scheduled departure time. Warren was not checking any bags and there was no line for security (and the recording over the airport intercom kept telling travellers to be sure to arrive at their gate at least 20 minutes prior to departure........). He was plenty early - I'm not sure he ever arrives any earlier, but he usually doesn't fly FRONTIER. To top it off, they wouldn't book him on a flight tomorrow unless he paid a $150 change fee plus the difference in the cost of the ticket tomorrow - and there were no flights in the morning. He was treated rudely at the desk by a girl who kept insisting that he should arrive at least 2 hours early for any flight. Then he called them and was even more horrified at how rude they were on the telephone. Apparently, to fly stand-by, you must fly on the same day your ticket is scheduled........ and since Warren was on the last flight of the day they won't let him fly stand-by tomorrow. So, he finally found a flight with Southwest that leaves early tomorrow morning. For only $400, he gets to come home! Lastly, the hotels at Midway airport are all completely booked. He even called the travel agent associated with his firm and they confirmed that there are no hotels at Midway tonight. Apparently, they are full of travellers who attempted, and failed, to fly FRONTIER. I guess he's going to tuck in for the night at the airport. It doesn't seem worth it for him to go all the way back into the city (to sleep on the floor of his office), only to turn around and come back at 4:30 tomorrow morning.

We flew FRONTIER on our last trip to Chicago and had a 4 hour delay (getting us into the airport at 2:00 a.m......... with 5 children), but that was weather related, so I guess understandable (even though other airlines were flying into Denver). Then, on the way back, we tried to change our tickets to extend our trip a day with no success that cost less than $1800.

Between these two experiences, I don't think we will be booking with FRONTIER ever again, even if they are the cheapest!

My apologies to Janiel and Steve for this rant! Steve is our neighbor and a Frontier pilot, but we hear he has nothing to do with the policies or procedures, so we hope he won't be offended!

Now you can see for youself!

2008-09-05T13:14:00.005-05:00

We have been wanting to post some MRI pictures from Matt's recent surgery. It has been a bit of a challenge to get all of his MRI's onto a CD. The ladies at the imaging department are fantastic, but I'm not sure they are asked very often to put as many MRI's as Matt's had on a CD. It took us two tries of going in there before we had the scans we needed!

This scan is from the first part of June. After Dr.Walker (the Neurosurgeon) saw these, he felt pretty strongly that we needed to drain the cystic portion of Matt's tumor. It's the big balloon looking portion on the top left of the tumor. You can see how this cyst could make judging the size of the actual tumor a little difficult! The cyst would fill and empty with fluid, constantly changing, and creating quite the challenge for the neuro-radiologists! Also, even though the cyst wasn't as dangerous as the tumor, if it gets too big, it can block ventricles and cause nasty symptoms, as well.

This is the MRI that was just done last week. I believe that why we were so ecstatic is pretty obvious! Even though the surgery turned into more (much more!) than a simple reservoir insertion and draining, the amount of tumor and cyst that was removed is remarkable and it was SO worth it! HOORAY FOR MODERN MEDICINE!!!

Wonderful Will!

2008-09-03T18:02:00.004-05:00

Today, Will brought this assignment home. I thought it was so cute! He is becoming more excited about school - becoming a fluent reader was the key. Now he loves to read and it's helping him feel more confident in school. I love that one of his describing words for himself was intelligent - and love the way he spelled it even more!

What a great day!

2008-08-27T22:38:00.002-05:00

For the past 8 weeks, our family has been in 'denial' mode. With Matthew's break from treatment, it's been easy and wonderful to just pretend our life is 'normal'. Without constant appointments, MRI's, and chemotherapy, we haven't talked a lot about the whole cancer/brain tumor thing. We did fish, canoe, swim, hike, play, have 4 birthday parties, vacation in Chicago, begin school, and otherwise fully enjoy the rest of our summer.

Monday afternoon we started up again with a nice refreshing dose of reality. Matt had a follow-up MRI at 7:00 Monday night (really, our appointment was at 7:00p.m. - isn't that weird?!?) Then, Monday morning he had his MRI of his brain, followed by a visit to Oncology, and finished up with a visit to his Neurosurgeon. We had an overwhelmingly positive day. First, the MRI of his brain showed the tumor was a bit smaller than it had been immediately after surgery. This, apparently, is because his brain was so swollen the day after surgery. Secondly (and this is HUGE, so brace yourselves), there were NO TUMORS IN HIS SPINE!!!!! We feel like this is a true miracle. His spine has shown marginal improvement with each spinal MRI, but to say there are no tumors is just amazing. Perhaps they were just the residual blood from when his tumor initially bled, perhaps the chemo really attacked them, but whatever they were, they are gone now! The report came back saying something about 'fatty tissue in the bone marrow' that is typical after a patient receives radiation treatment........ but Matt's never had radiation. We are so grateful for this amazing change. Lastly, his Neurosurgeon was very pleased with how well he is doing. We are so very lucky that with the size and location of Matt's tumor, coupled with 2 extremely invasive surgeries, Matt has virtually no side-effects. Some common side effects might be extreme weakness in one side, seizures, foot drop, personality changes, cognitive difficulties, etc..... Matt has none of that and our Neurosurgeon was really happy - as are we.

We know we are so blessed to be at a current 'up' in our roller coaster ride. On Monday, we learned that a friend (Karen) just hit a 'down' with her son Marcus. After a year of being 'cancer free', his tumor has returned with a vengeance, and is now tumorS. So, even in our happiness, we are sad for children who are backsliding. This disease is so awful. The ups and downs take a tremendous toll on children and families. So, as you pray and are thankful for Matt, please remember to pray and bless Marcus and his family as they continue another really difficult part of this journey.

Summertime!

2008-08-01T13:05:00.003-05:00

I sort of lost my camera for awhile, so I haven't posted any pictures in ages! When I found it, I had several hundred photos of some of the fun things we've done this summer. This montage is several things we've done. First, Warren, Aspen, and the boys went jeeping one Saturday morning over Monte Cristo (between Cache Valley and Eden). Then, Warren and Will went on a long, hard hike up to the Wind caves in Logan canyon. The whole family hiked the short and lovely Limber Pine trail at the summit of Logan canyon, and lastly, we took a trip up into Bear Lake and spent a day hiking in Minnetonka cave. The cave was incredible! Nine 'rooms' all very different and very cool.

We are so happy that Matt has been able to participate in such fun activities this summer. He has kept pace with everyone and isn't having a bit of pain or complication. He feels wonderful. We are going on vacation to Chicago next week, and then school starts, and then the next week we have the appointment for Matt's MRI and our big appointment to figure out the next step in this journey. As for now, we are just enjoying the normalcy of our summer!

Photo and video editing at www.OneTrueMedia.com

Morphing!

2008-07-26T11:10:00.002-05:00

Thanks to my cousin, Karrianne for this celebrity morphing thing! I have wasted too much time on it this morning. I thought it especially interesting that Nate and Drew didn't even have ONE common match. Since they are identical twins, I thought they would at least have some features in common........ :-)
Maybe someday I'll be brave and post the morphs for Warren and I - especially the one of Warren morphing into Whoopi Goldberg - it's great!

Nate

2008-07-26T10:58:00.002-05:00

MyHeritage: Family trees - Genealogy - Celebrities

Drew

2008-07-26T10:54:00.002-05:00

MyHeritage: Celebrity Morph - Genealogy software - Geneology

Matt

2008-07-26T10:43:00.002-05:00

MyHeritage: Family trees - Genealogy - Celebrities

Will

2008-07-25T23:29:00.002-05:00

MyHeritage: Celebrity Morph - Blank family tree - Roots

Jake

2008-07-25T23:20:00.003-05:00

MyHeritage: Celebrity Morph - Pedigree charts - Free genealogy

Quick update.

2008-07-02T02:55:00.002-05:00

Dr. Lemons (Matt's oncologist) called today. I wonder if doctors know how much it means to parents when we receive calls at home from them? When any of our doctor's call us personally, they get HUGE POINTS in my book! Anyhow, we talked about Matt's surgery and about 'the plan'. At the next tumor board, Dr.Lemons will present Matt's case and they will decide on chemotherapy agents and discuss radiation. Dr.Walker (the neurosurgeon) said it looked like the chemo was working (YEA!) since the tumor had pulled away from the ventricles and seemed more solid than it had last year. For this reason, I like the thought of Matt remaining on chemotherapy. However, which chemo has been working? He was on Temodar for 6 months and has only had 2 rounds of PCV..... It seems much more likely that the Temodar was the one affecting his tumor. I think that some kids are on PCVT (so Procarbazine, CCNU, Vincristine, and Temodar all at the same time). We'll just have to be patient and see what they recommend!

So, in about 4 weeks we are going in for another MRI to get a baseline of the tumor. This time frame gives any swelling a chance to go down, so we can get a true look at his brain. At that time we will begin chemotherapy again. I am quite excited, though, because this break means Matt gets a gift....... a whole month of SUMMER without worrying about treatments or trips to the hospital. Wooo-Hooo!

Matt is still feeling great. He had labs drawn today and everything was perfect. He didn't want to nap today, and he didn't even take a Tylenol! He insists there is no pain and based on his behavior, I really believe him.

More Blessings!

2008-06-30T16:26:00.002-05:00

Yet another miracle this week! Yesterday morning, they let Matt go home. He is doing wonderfully. We were able to help him shower on Saturday - isn't it amazing how much better you feel when you are clean?!? For his last Craniotomy we requested they shave his entire head. It was very convenient to keep his incision clean. This time we sort of were thrown into the whole major surgery thing rather quickly, so he kept his hair. It was so SKUNKY! They use this gunk to slick the hair away form the incision during surgery, plus they clean the site well with iodine, plus they put numbing cream on the drain site, plus he had 2 IV's in his head during surgery, plus he had several circles shaved off his head for the 'markers'. His hair was disgusting! It was so nice to finally wash everything out (very gently, of course!) When we rinsed it the first time, the water was rust colored from all the crud in his hair - YUCK!

That was a little tangent - sorry! So, Saturday Matt really did well. He was up and walking by himself, with no support! He was using the restroom, eating well, and just amazing everyone around him with how well he was feeling. In fact, I bought him a 300 page book the day before his surgery. He read a bit that morning while we were checking into surgery. He read THE REST OF THE BOOK in the 3 other days he was inpatient! On our first walk after surgery, Matt was in a wheelchair and we were taking him out onto the patio for some fresh air. Matt was reading his book while we walked the halls and we passed the Neurosurgery team as they were doing their rounds. They were all shocked that Matt was reading - it was pretty funny!

So we are home, just letting Matt rest and get better through this week. He is feeling very well and I keep having to force him to lie down and rest. Now we wait to figure out the next step in our 'plan'. Hopefully it will involve continuing chemotherapy since it seems like that is working. Then, maybe, we can keep radiation 'in our pocket' until we absolutely have to use it.

AMAZING!!!!!!!

2008-06-26T19:29:00.003-05:00

This morning Matt had his MRI. We are so thrilled that Dr.Walker was able to remove a LOT of his tumor! I don't have a percentage or anything but I did see the scans. The huge balloon looking portion of it is totally gone. The ventricles are all clear, and about half of the white solid tumor is gone, as well. Dr.Walker was, again, just overjoyed. You could tell he was pretty darn thrilled with himself. Today he was excited to see just how much of it was gone and also to see that there was almost no bleeding. Bleeding is one serious complication that we are happy to have avoided, particularly given Matt's history of his tumor bleeding.

So, of course I wondered if it might be possible to do yet another craniotomy on the left side to see if we could get out the other half of the tumor! Dr.Walker didn't dismiss the idea, which I see as positive! Of course we aren't going to do it tomorrow, or anything, but in the future it might be a possibility. Total resection (removal) of the tumor is like a dream I hadn't ever dared to dream. Now the possibiliites for Matt's complete recovery and healing seem endless!

YEA FOR GOOD NEWS!!!!

The best laid plans.......

2008-06-25T23:38:00.002-05:00

Today, Matthew was scheduled for a minor (well, relatively minor - I'm not sure any type of brain surgery is minor!) surgical procedure. An Ommaya reservoir was going to be implanted so that the cystic portion of Matt's tumor could be drained. The surgery was scheduled for 1 hour and then we were going to be allowed to go home 24-48 hours after surgery. Warren, Matt, Jake and I headed down to Salt Lake yesterday to meet with the neurosurgeon and also have an oncology clinic visit. We had a nice evening and stayed the night with Carolyn and Lee so we could be to the hospital at 6:30 a.m. this morning.

We arrived at the hospital, Matt had a CT scan and was whisked into surgery rather quickly. We were in the waiting room at 8:30 - which was a first, for sure! We were happy and not surprised when Dr.Walker (our neurosurgeon) showed up around 9:30. We thought the surgery was finished. Well, the news was not exactly what we had anticipated! Apparently, when Dr.Walker went to insert the catheter portion of the reservoir, the cyst collapsed. This was not a dangerous complication or anything, it just meant that the surgery didn't work and that the cyst would continue to fill with fluid and Matt's ventricles would continue to be blocked, putting him at a great risk for hydrocephalus.

Dr. Walker gave us 3 options. We could either end the surgery then, try putting a larger scope in the hole Dr.Walker had already made, or perform a full craniotomy. It was a rush of emotion as we hurriedly weighed the options and ultimately decided that the craniotomy was the thing we would do. Dr. Walker was leaning that way, and I really respect his opinion! He also hoped that we might be able to remove a bit more tumor.

Matthew was in surgery for another SIX hours. Let me tell you that if we had known what today was going to turn out like, we certainly wouldn't have brought our 8 month old baby! Jake is a trooper and an absolute doll, but he doesn't 'do' waiting rooms for hours on end!

When Dr. Walker finally came out after surgery, he was practically beaming. From this different angle (Matt's first incision was right across the front of his head. This new incision begins on the right side of his incision - your left - and continues on to the back of his head, making almost a 90 degree angle with the first incision) Dr. Walker was able to completely remove the cyst, and also remove a large portion of tumor! We were beyond thrilled and Warren said, "I have never felt so happy in this place!" I totally felt the same way! This gives us a large chunk of tumor to send to different pathologists, and hopefully the tumor will be easier to measure without the large cyst making the MRI's difficult to read. Dr. Walker also said that the cyst was much more tumor than it appeared on the MRI. I am so happy they were able to remove so much!

Tomorrow will be an exciting day because Matt has an MRI. We will be able to get a good look at exactly how much of the tumor Dr.Walker was able to remove.

Tonight, Matt is doing well. When we first went into the PICU to see him, I asked him how he felt. He opened his eyes and said with a clear, strong voice, "I feel like crud!" It made me laugh.

So, now we work through our modified plan. Our 1 hour surgery + 1-2 day hospital stay has morphed into a 7 hour surgery + 1-2 days in ICU with 5-8 days in the hospital after that! However, if this surgery resulted in a significant resection, it is totally worth it!

Just Swingin'

2008-06-21T00:57:00.008-05:00

Jake's first time in a swing! He was so sweet - making the CUTEST laugh/shriek/giggle sound. He is becoming so much fun!

Too much STUFF!

2008-06-19T22:58:00.004-05:00

So, I am feeling a little bit overwhelmed at the amount of updating I have to do on my blog! Summer is in full swing and we've been busy.

*We spent a weekend helping Warren's mother get some stuff cleaned out of her house.

*We went to LAGOON with some friends. The boys loved it and it turned out to be a fantastic time to go.

*Warren's mother got MARRIED!! She was widowed almost 7 years ago and we are so thrilled for her and her new husband. They seem very well matched and very happy.

*We went on a family vacation to Deer Valley. It was just our speed, we hung out together, played board games, saw the Park City sites, ate junk food, swam in the hot tub in our condo, and slept in. It was a successful trip.

*We travelled back to Idaho after the wedding and our Deer Valley trip to be with Warren's mom for her reception.

*Our landscaping contractor finally started our landscaping - a week or two and we will have real live GRASS!

*Matthew and William are currently at 'Camp Hobe' an amazing camp for children with cancer and their siblings (I linked to the page with the video - it's worth a watch!)

*Matt had an MRI and we learned that the solid portion of his tumor appears stable, but the cystic component has grown.

*We received a call from the neurosurgeon's office yesterday, letting us know that the O.R. has been reserved for Matt for next Wednesday (the 25th) We don't know all the details yet, but it looks like Matt will need a shunt inserted to help drain the fluid through his 3rd ventricle.

For having nothing scheduled so far for our summer, it's been pretty full and is almost 1/2 over! How does winter go so slow and summer go SO FAST?!? I will try to post some photos of our adventures soon!

Alli's 'Mama bear' instinct kicks in!

2008-05-31T22:02:00.005-05:00

Friday morning, Matt was still terribly exhausted and not eating anything. I called Oncology first thing Friday morning and by Friday afternoon things had been arranged for us to receive supplies (more fluids and anti-nausea meds), and a home health nurse had been assigned to come draw more labs - a BMP (electrolytes). I sort of felt like all this was done to appease me. No one said or did anything to make me feel this way, I suppose, but Matt is on chemotherapy and how did I expect him to feel? Well, the BMP checks sodium, and his sodium was extremely low. That pesky sodium again! Low sodium is a new problem. Usually Matt's problem is high sodium. Oncology called Endocrinology and his Endo. doctor wanted Matt admitted (at Primary's) right away to get him stabilized.
Thankfully, by withholding his DDAVP for one night and not pushing fluids, he was stable by this afternoon. I am upset about several things, though.

1) I am grumpy at myself for not pushing harder when I 'felt' like
something was off. This is the biggest one. My friend Karen encouraged me to push to have him seen. I am always worried, though, about being 'that' parent who thinks she's a doctor and overreacts to things like (gasp) a child feeling crummy while on chemotherapy!

2) I am grumpy at Hem/Onc for not recognizing that in a child with DI
a BMP should be ordered right away if the child is not eating or
drinking and has these types of symptoms.

3) I am grumpy that Hem/Onc isn't familiar enough with my child's
case to catch this - I feel a lot of pressure to be the one to find
things like this, even though I have no medical training!

4) I am grumpy that the doctors don't seem to communicate with one
another at all - I am constantly relaying information from one
department to another, but I am not a doctor. I might be
misunderstanding, I might not remember perfectly what they said. I
feel like this should be their job - I am HIRING them to care for my
child, and I am having a hard time feeling like they are doing a good
job.

5) I am REALLY angry at Hem/Onc because NO ONE, not a resident, not the Nurse Practitioner, not a doctor, not anyone came to examine him while he was inpatient! My husband, while going to get a soda, saw our Endocrinologist chewing out the Oncologist on call. Endo. was very angry that Matt's sodium had gotten so out of control before labs were ordered and he was contacted. The oncologist was right around the corner, but couldn't come check on Matt? Then we get a random instruction from the tech assigned to Matt (so not even the NURSE) who tells us that Matt should take his 'make-up' dose of chemo that he missed the night before. She said that the oncologist said 'the parents will know what to do.' Um, NO, we do not know what to do! Why don't you come in and tell us so we can ask questions and you can examine our child!

I think I am done venting, but I am just so frusterated with this whole process. I wish there was some sort of primer, "How to be the non-insane parent advocate for your child with cancer." Maybe there should be a magazine or something - "Cancer Kids", a magazine for parents of cancer patients! I truly am out of my element here, and I think that doctos forget that this isn't a natural process for parents and I, for one, have no CLUE how to do this 'right'!

Spring Sing

2008-05-30T00:44:00.004-05:00

Well, Matt did make it to his 'Spring Sing' yesterday - but just barely! I went to the first part with him and then left to go to Will's first grade program. Warren stayed with Matt. It was HARD for Matt, and hard for us to watch. You could just tell that he didn't feel well, but he had wanted to go so badly. He made it through the program and then bolted to Warren and said, "Dad, can we go home, I don't feel very good". :-(

Today has been the same as the rest of the week. He has been terribly weak and terribly tired. I'm anxious to speak with Oncology tomorrow. He hasn't eaten anything all week and doesn't even have the strength to get out of bed. I've been searching online for ways to help kids cope with chemo, and they all seem to refer to the symptoms we've been seeing for the past 9 months - mild fatigue, food tasting 'off', etc.... He seems much worse than that and I think I'm going to push to have him seen tomorrow. They need to look at him and tell me these symptoms are "normal"!

Further confimation that we shouldn't go to the library!

2008-05-27T16:25:00.002-05:00

Matthew has had a really rough couple of days. He has had a stomachache, been nauseated and unbelievably tired. He slept most of yesterday and has done the same today. We've had him on IV fluids to keep him hydrated but other than that he hasn't eaten anything. This morning I was really trying to help him think of something that sounded appetizing. Nothing has sounded good. I finally got him to eat a few spoonfuls of Cheerios, a bite of applesauce, and a teeny bit of plain noodles (his requests!) Oh, he also drank a little bit of Ensure mixed with milk.

This afternoon, he woke up and seemed to feel a bit better. I encouraged him to get up and dressed, hoping that would help him feel even better. He got up and changed and looked so much better I wondered if it would do him good to get out of the house for a few minutes. We decided to go to the library so he could get something to read (see post here, to remember why the library is a bad idea for us). Once inside the library, without any notice, Matthew began vomiting. Since it was so unexpected, he didn't have a chance to get his bag out of his pocket (he keeps a gallon sized Ziploc baggie in his pocket at all times so we are always prepared for this!) He threw up all over the young adult fiction section...... I felt so bad for him! We just left! I did stop at the front desk so I could tell them that he had thrown up. I also tried to explain that he is on chemotherapy so they didn't think I brought my sick kid out! They were so nice and said they would handle everything. Both Matt and I were pretty covered in vomit, but miraculously, the two books I had in my hands were perfectly clean! Once we got home, I hooked him back up to his IV and he went back to sleep. Poor Kid!
It is also the last week of school and while I know that nothing 'important' happens this week, I wish he didn't have to miss all the fun end of year activities. Tomorrow his class is putting on their end of year program and I know he doesn't want to miss it. We will be praying that he feels well enough by tomorrow afternoon to attend the program!

Matt is (sort of) on CNN!!!

2008-05-22T16:50:00.005-05:00

With the news of Senator Kennedy's brain tumor, there has been a lot of information on the news about brain tumor's, in general. Right now on CNN's ireport there is a section where you can put stories about brain tumor experiences. I posted one on Matt, and feel a little bit famous! :-)

I think it is important for people to know how frequently brain cancer occurs and that it isn't the hopeless diagnoses all the 'experts' are reporting! I refuse to believe that Matt isn't going to make a full recovery.

http://www.ireport.com/docs/DOC-25302#

Abundance.

2008-05-14T18:22:00.005-05:00

I am so thankful for my sweet little boys. I will be so sad when my mother's day gifts no longer consist of paper flowers and struggling little plants in paper cups. My boys give me their gifts with such earnest love and pride, it makes me cry every year. The four older ones each made me surprises at school. Here is a little video of them telling what they did.

When Will brought his wheat grass home Friday, he dropped it. He was just devastated! Luckily, Warren was able to help him salvage the plant and put it all back together. Then, on Mother's day, while Warren was helping organize the boys, Will dropped it two more times. It is truly a miracle that it still looks as good as it does!
And lest you think Jake was left out of the day's festivities, here is a photo proving he was here...... albeit sweetly asleep on Warren's chest.