Sunday, December 21, 2008

We're Home!

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!

Friday, December 19, 2008

Slowly Stabilizing and out of ICU!

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.

Wednesday, December 17, 2008

Change in plans, disappointment, backslide.

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!

Monday, December 15, 2008

Amazing Matthew! Fourth day post-op.


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!

Friday, December 12, 2008

Scans

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!

Thursday, December 11, 2008

We heard WORDS!

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

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.......

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.

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!

Thursday, December 04, 2008

Request......


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.

Monday, December 01, 2008

A tribute to a great Christmas Story!



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.)

Tuesday, November 25, 2008

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

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.

Monday, November 24, 2008

Andrew.......


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.

Sunday, November 09, 2008

The Big Oh-One! :-)

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! :-)

Friday, October 31, 2008

Really sad day......

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.

Friday, October 24, 2008

Prayer Request!

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!

Tuesday, October 21, 2008

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

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!

Sunday, October 19, 2008

See, maybe we WOULD have cute girls!


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! :-)

Friday, October 03, 2008

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

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!

Sunday, September 14, 2008

Sweet prayers.


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!

Tuesday, September 09, 2008

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

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!

Friday, September 05, 2008

Now you can see for youself!

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!!!

Wednesday, September 03, 2008

Wonderful Will!

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!

Wednesday, August 27, 2008

What a great day!

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.

Friday, August 01, 2008

Summertime!

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!

Saturday, July 26, 2008

Morphing!

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

MyHeritage: Family trees - Genealogy - Celebrities

Drew

MyHeritage: Celebrity Morph - Genealogy software - Geneology

Matt

MyHeritage: Family trees - Genealogy - Celebrities

Wednesday, July 02, 2008

Quick update.

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.

Monday, June 30, 2008

More Blessings!

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.

Thursday, June 26, 2008

A*M*A*Z*I*N*G!!!!!!!

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!!!!

Wednesday, June 25, 2008

The best laid plans.......

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!

Saturday, June 21, 2008

Just Swingin'


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

video

Thursday, June 19, 2008

Too much STUFF!

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!

Saturday, May 31, 2008

Alli's 'Mama bear' instinct kicks in!

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'!

Friday, May 30, 2008

Spring Sing

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"!

Tuesday, May 27, 2008

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

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!

Thursday, May 22, 2008

Matt is (sort of) on CNN!!!

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#

Wednesday, May 14, 2008

Abundance.

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.

Friday, May 09, 2008

Can you believe Jake is 6 months old?!?

Jake is cracking us up lately! It is so fun to watch babies personalities emerge. He is six months old today and he does so many things! It's amazing that so much change happens in only a few short months.
Jake now:
*Sits on his own.
*Eats some solid foods.
*Sleeps all night (7pm-7am) and takes 2 awesome naps a day.
*'Talks' to us all. He shrieks with joy which always thrills his big brothers.
*Grabs toys....... and anything else within his reach - we have to be careful!
*Drinks out of a sippy cup.
*Does the 'scooty bug'. This is him arching his back (while lying on his back), then pushing with his legs to scoot across the floor or his crib..... backwards.
*Wears 6-9 month clothes.
*Has two bottom teeth. He is my earliest teether, by far! My other babies didn't begin cutting teeth until 9 months. Jake is very advanced....... :-)
*Smiles at everyone. He is very social and whenever we are out, people can't help but comment on his sunny personality.
*Is very attached to his 'lovey'. It's this little bunny, but the body is this super soft satin on one side/fuzzy on the other little blanket. It's hard to describe! As soon as he sees it, he gets all excited. He reaches for it with his right hand, while his left thumb goes into his mouth. He strokes the soft blanket part of the bunny and holds it close to his face while he falls asleep. Oh, look, I found a link - isn't the internet amazing! Jake's bunny blankie

Here is a video of Jake's new habit. Each time we give him a bite of food, we barely get the spoon out of his mouth when his thumb goes in! It makes a huge mess, but just proves how attached he is becoming to his little thumb!


One more video I can't resist! This is Jake this morning playing with one of his Christmas toys. His brothers are so thrilled with their new, interactive, little brother! Here, you can see Drew helping Jake.

Bathing Beauties


------------------------------Will, Drew, Nate------------------------------

Delay......

On Tuesday, Matt was scheduled to begin his 2nd round of chemotherapy. His home health nurse, Julie, (one of our favorite people) came Monday evening to get his 'counts'. Tuesday morning we received them and his ANC was only 400. Remember, the ANC is the infection fighting cells in the blood. An ANC below 500 means Matt is neutropenic, and his body is less able to fight infection. To begin chemotherapy, his ANC has to be 1,200. When Matt began his first chemotherapy, 10 months ago, we were given the guidelines that ANC below 500 meant he had to remain housebound and no visitors were allowed. When I spoke with the nurse Tuesday morning I said, "so, Matt can't go to school, either, right?" The nurse said that actually he could go! I was surprised by this change in directive and learned that some oncologists will let the kids go to school until their ANC drops below 200! Because Matt's counts should be rising at this point, and because he feels so well, he is allowed to go to school. I also thought it was interesting that the life-threatening infections that can develop in people with compromised immunity almost always come from their own bodies - not other people. So, in other words, Matt's lungs or blood could get infected, simply because he isn't as able to fight the bacteria that naturally occurs in his body.

Very interesting!

I suppose it was a good thing Matt didn't have to miss school this week. They are doing end of level testing and he has been SO EXCITED to be tested. He expressed a lot of concern about missing some of the testing, so this just worked out well. He is such a great kid!

Sunday, April 27, 2008

We Need To FIGHT!

The past few weeks I have been struggling to figure out how to express something that's been eating at me.

Children shouldn't get cancer.

We shouldn't have to watch our children suffer from this awful disease. Watching Matt fight, always with a smile and a positive attitude, is the most heart wrenching, devastating experience that I could have ever imagined. Listening to his childlike faith is heartbreaking. He told me the other day that he was glad we had found his tumors. Now that the doctors were taking care of him, as long as he followed their instructions, his tumors would go away and he would be healthy again. How do you explain to a sweet nine year old boy that the tumors will likely not go away, no matter how careful he is, and no matter how good the doctors are? How do your discuss your child's own human mortality and frailty on such a personal level? I am prepared to discuss with my children the fact that everyone will die someday, but how do you talk about this fact with a child who has a life-threatening illness? I believe in miracles, and we pray for one daily. People can live for a long time with stable, low grade brain tumors. But chemotherapy and radiation are not going to completely get rid of Matts cancer. He will be monitored yearly (at least) for the rest of his life.

However, Matt is one of the lucky ones. He has a chance......

When I joined this strange pediatric brain tumor world, I learned of the grand-daddy of all pediatric brain tumors, the diffuse intrinsic pontine glioma or DIPG. Children diagnosed with this, the most deadly pediatric brain cancer, usually don't live longer than 18 months - and it's 18 months of watching your child suffer horribly and deteriorate before your eyes. This video was made by a mother, Christine, about her daughter, Alicia. Christina has started a foundation, you can check our her blog here, and her foundation, onemoreday, here. This video is very difficult to watch, but I believe it is important because awareness is the first step towards a cure.



There is a darling little girl that some of you here in Utah may have heard about on KSL. Her name is Sadie and she has a DIPG. The story on the news piqued my interest, as my ears perk up at the words 'brain tumor'. I went to her website and just crumbled when I heard what her diagnoses is. My heart aches for this family and for the year ahead of them. Of course everyone knows that brain tumors are awful. However, I had no idea exactly how awful they could be. Finding a cure for DIPG could likely translate into cures for many other types of brain cancers. Please help in any way you can. Prayers are wonderful. Donations are also wonderful - much research has yet to be done on pediatric brain tumors! If you are looking for a worthy cause, it's hard to imagine one more profound than this.

-Allison

Friday, April 25, 2008

Round 1 - COMPLETE!

On Wednesday, Matt and I made our last treck to Salt Lake for this round of chemotherapy. He had his 2nd 'push' of Vincristine (meaning, they push it through his line - so it's IV rather than oral). Each time we go to the Hem/Onc clinic, I am startled how someone so sick can look so healthy (especially compared to many of the other children)! He seemed particularly well Wednesday and was just kicked back, playing gameboy when the doctor came over to chat while the nurse administered the chemo.

Now we just wait for side effects! Several weeks ago, the first time Matt received this medication, he had some pretty severe jaw pain and some drooping of his eyelids. Luckily, the side effects were short lived. He needed IV fluids for a few days - the jaw pain made it difficult to eat or drink, but the Monday after his infusion he felt fine again. Vincristine is nasty, toxic, stuff - no wonder it kills cancer! Matt's platelets have started dropping and were at a 45 - he needs a transfusion at 25. Everything else looked pretty good, though. His ANC was still in the normal range, but had dropped pretty dramatically from where he started.

I'm quite anxious for the next round. The first round is always the easiest. It takes 2 or 3 rounds before you get a sense of how the child will handle things. We go back on the 6th of May to start this whole adventure over again. Then, the first part of June will be MRI time again!

-Alli

Friday, April 04, 2008

Recipes!

Today at our sing-a-long, I made caramel brownies and also a chicken salad that my mom served in croissants. The recipes were requested, so here they are!

Chicken Salad (Mary-lu Nelson)

Blend together in a large bowl:
4 cups diced cooked chicken
2 cups diced celery
1 4oz. jar whole or sliced mushrooms
1/2 cup pecan halves, toasted and coarsely chopped
4 slices fried bacon, crumbled

Mix together and add to chicken mixture:
1 cup mayonnaise
1 cup sour cream
1 1/2 tsp. salt
1 Tb. lemon juice

Toss lightly and chill thoroughly. Serve in croissants, tart shells, cream puffs, etc.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Brownies - from my MIL, Carolyn, of course! (these are THE BEST!!!)

Melt together on stovetop:
1 c. melted butter
2 c. sugar
1/3 c. cocoa

Add:
4 eggs, one at a time, beating well after each one

Add:
1 1/2 c. flour
dash salt
1 tsp. vanilla

Stir well. Pour into a greased 9x13 pan. Bake 25 minutes in 350 degree oven. Cool.

To make a large sheet cake pan of brownies, double the recipe.

Frosting:
1/2 stick butter, melted
1/4 cup cocoa
1/4 cup milk or cream
3/4 lb. powdered sugar
1 tsp. vanilla
dash salt

Blend thoroughly.

For caramel brownies (what I made today), put 1/2 of the brownie batter in the 9x13 pan. Bake for 10 minutes, remove from oven and pour 1/2 jar of Mrs.Richardsons butterscotch caramel over the bottom layer. Add the remaining batter on top of the caramel, and bake for 15 more minutes or until a toothpick inserted in the center comes out clean. (I like to do these in a 9x13 pan and add almost the WHOLE bottle of caramel - they are divine!)

For mint brownies, bake brownies as directed and then make a minty layer using powdered sugar, butter, and creme de menthe syrup (Torani is the brand I prefer) until you get a frosting consistency. Frost the brownies with this mint layer, let set and then frost with chocolate frosting. I have also used peppermint Torani's and red food coloring for peppermint brownies around Christmastime.

Good Times with Good Friends


View this slideshow created at One True Media
Let Your Light So Shine!

These are my girls!
I believe this was 1994/1995 school year (Back row) Anna, Rachelle, Erin, Jessie, Heidi (Front row) Deanne, Me
Just for the record, we all DID HAVE DATES. We wanted a photo with just the girls, as well as one with our dates. :-)

I will always be grateful for these girls in my life! It's surprisingly comforting to be surrounded by friends who knew me when I was a spazzy, emotional teenager with big hair - they liked me then, and still like me now! They know me completely - the real me, not the current, trying to be a grown-up me . We were together everyday for about 4 years. After singing in a show choir together in 9th grade, we formed our own singing group: Harmonique. The six of us (plus my mom, who devoted countless hours as our accompanist, and Erin who played the bass) kept ourselves quite busy rehearsing new music, practicing old music, and singing at everything from fairs, ward parties, high school choir concerts, seminary, firesides and many MANY sacrament meetings. My mother wrote much of our music - including the song 'Let your light so shine' that we recorded in 1995, and our seminary theme song 'Feast Upon the words of Christ'. We also double dated a lot and were basically inseparable. I owe these girls my high school life - they were such good friends at a time when good friends are essential. I believe that these friends helped shape me into a better person than I could have been without them.

Even now, I count these girls as some of my closest friends. Today we got together and had a good, old-fashioned sing-a-long at my moms house. Rachelle currently lives in Chicago so wasn't in attendance. Also, Erin had to work and so couldn't join us, either. It is especially amazing to me when I realize how many children we have between us - 5 1/2 girls and 17 BOYS! That is 22 (and 1/2) children..... WOW! That idea would have been difficult to wrap my mind around at the time the above photo was taken!

Here we are today singing, 'My Love' (a song my mom wrote). I feel bad you can't really see everyone - wasn't it great of me to stick myself front and center? :-)



Here's a photo of the children - only about HALF of them!


And here are 'the girls' - I don't think we've changed too much in 13 years! :-)

Tuesday, April 01, 2008

Jakers!

I can't believe little Jake is almost FIVE months old! He is still such a sweetheart - he smiles and giggles almost all day. He sleeps through the night, loves to hang onto toys, and loves to play with his big brother's. Here are some recent pictures of our little sweetie.

I have never had a thumb-sucking baby until Jake. It melts my heart! He readily calms himself by popping his little thumb in his mouth. I love the way his fingers curl around his nose. This blanket is his current favorite - made my our friend Lacey. She also made blankets for Nate and Drew that also were the favorites - she's got the touch!


Taken a few weeks ago. I love this one because it shows off his coloring. He is such a sweet baby!

Sunday, March 30, 2008

Here's the other side to our sob story!



Although we have been feeling upset and depressed about the current news regarding Matthew's tumor progression, I thought I would take a moment to reassure you that, in our day to day life, even we have to remind ourselves that anything is wrong!
Matthew is doing and feeling so WELL 95% of the time. Just two weeks ago we took the whole family skiing (well, Jake didn't ski..... and I was there mainly as photographer, but everyone else skied and had a wonderful time)!
This was Matthew's second time skiing this year - he enjoyed this time more than last. The first time he went, he spent the majority of the time on his bottom. This time he was complaining about going, but we finally talked him into it, and by the end he was really enjoying himself.

Here's a video of Matt and Will following their instructor down 'Little Beav'. Will is in the front, in the orange coat, and Matt is in the blue coat.


Will, waiting for his class to begin:


This was sort of a funny moment. Before the day of skiing began, Matt was not very happy about being there! He was whining about wanting to 'go home' or 'just wait in the car'. We finally talked him into skiing, but he was still not happy about it at all. Around the lodge, there is a gentle little slope with benches. We sat the boys on the benches and helped them get all ready for skiing. The other boys made it down the little slope without incident, but Matthew didn't want to slide down. Eventually, we convinced him to 'ski' to us. He started down the little hill and was just howling. He forgot to snowplow and crashed right into Warren - who had braced himself to stop Matthew! We didn't mean to laugh, because Matthew certainly didn't think it was funny, but we couldn't help ourselves - it was hysterical! :-)


Here is a video of Will skiing down the aforementioned slope before Matthew.


Nate, just being cute!


Nate and Drew waiting for their blissfully unaware instructor. At this moment he didn't realize his next several hours would be spent attempting to keep two 4-year olds upright on skis. He did a wonderful job with the boys, but I believe he earned his money!


So, as you now can see, our life is really pretty 'normal' right now. We are doing our best to keep things fun and light and optimistic. I read somewhere (probably my PBT (Pediatric Brain Tumor) message board, where I get LOTS of wisdom from parents who are further along this journey than we are) that there's no point in saving a life if you won't allow the person to LIVE that life. I often want to shelter Matthew and to keep him away from experiences that are challenging for him or where he has the potential to get hurt. However, I have to realize that there will likely be a time when he IS too sick to do these things. I don't need to cut them out during a time when we don't have to! For those of you that don't see Matthew each day, please be reassured that he is busy living and the cancer treatments are only a small part of his full and active life!