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

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...

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

Just sayin'!

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

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.......

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

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

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

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.  :)