Chemo #3

We had a much better day on Monday. It was a long day but more pleasant than the others. We left at 7:30am and returned home about 7pm. Max developed a little cough which if it would have been any other kid I wouldn't have noticed, but because we have to be so careful of infection right now we took note. They did viral testing to see what type of virus might be in his system if any. His lab counts were all over the place yesterday due to all the manipulation that we are doing with chemo and medication, so we weren't able to tell what is going on in his blood. I don't think it is anything to be worried about, but always better to be on the safe side, we should get results back soon. We also have to be cautious of pneumonia right now it can silently crop up and they think his system is able to produce a fever so if we get to 99 than we get an ER visit. He is on the same antibiotic that he has been on all year which should help protect against one specific type of pneumonia. So we will watch the next couple days just to be sure. The infusion part of the day went really well. If you recall benedryl is not a good friend of Max, so we were able to discuss another drug option with the pediatric oncology pharmacist, but since benedryl is the best that there, we tried another drug but had to run the the infusion low and slow, knowing that if anything came up we would still need to give him benedyl. Luckily it all worked out, and the new drug worked well, Max lounged on his hospital bed without getting down for 6 hours straight. He took a great nap, played a little with some new toys and just took it easy all day.

Narcolepsy??

Even though Max feels yucky at times. Life still goes on.  I love how Max just conked out in the middle of Costco.  Didn't even wake up when Molly spilled all of her sample foods on his head. =)

Glucose and Growth

Max had a good glucose check this week, but we still got to hang out with our favorite endocrinologst.  When we were able to decrease his steroids the first two weeks in December Max actually grew almost 1cm.  I was very excited, because this means that he is able to produce a little bit of hormones, but the doctor told us not to get our hopes up 1cm isn't very much and now with the increase in steroids we won't be seeing any more growth for quite awhile.   He also lost a little bit of weight since we have started the chemo.

The only problem is that with this little bit of growth it has slimmed him down more than he already was and his pants aren't fitting any more, even his pullups just slip right off when he runs, so he has mastered the art of grabbing his britches and taking off.  We have increased the amount of supplements that he is getting in hopes that we can bulk him up a little.  We are running some more tests on the actual functioning of his pancreas so that we can start to monitor closely, they are also going to get us set up with a class on how to use a glucose monitor and track his blood sugars.  But there doesn't seem to be any immediate need to begin insulin.  We will wait to get more of the results back this week.

Chemo #2

Since this was a subsequent infusion we were able to try running the infusion a little faster today, which was nice in theory it made for a slightly shorter day but was much harder on Max. No smiles today. The benedryl was run by iv for 45 minutes to try to decrease the effect on his body, they even added a little fluid to try to dissipate the meds, but there was no tricking Max, he was pretty uncomfortable and not his usual self. We got our favorite infusion nurse Aaron and he was so bummed that Max didn't feel like playing with him today. Aaron thought Max had a really bad reaction to his premeds but I thought it was a lot better than last week. Once the effects of the benedryl wore off Max was finally able to fall asleep just about the time we were ready to shut off the infusion. We were excited to get home so Max could feel a little more comfortable.

Chemo #1

What is God trying to teach us? Are we handling this whole roller coaster so well that he needs to throw a wrench in it and make it a little more difficult. Last year we endured a 9 hour car ride home the night before Max's surgery and a snow storm and got stuck on I-5 when it shut down and this year the snow/ice storm hit just in time to change all of our plans. With that nightmare in the back of our heads it just meant a little more coordination, so we had backup plans and backup-backup plans and then worse case scenarios just in case.  With hotel or hospital bags packed, enough food and meals to last everyone all week, luckily it all worked out. Tuesday Max and I left at 5 am to make it to the hospital in time for his first chemo treatment. Child care for the girls went smoothly and we were able to get out by 7pm in order to make it home before the next storm hit. We went back and forth with our doctors and staff about what to do with Max, he needed two days of treatment and another day in the clinic with the pending storm it would require us to stay in the hospital all week, which I wasn't excited about being separated from the rest of the family and also risking our insurance not covering our hospital stays if it wasn't entirely needed. But we also had to be within 1 hour of the hospital in case a fever struck. We decided to get the necessary chemo part taken care of on Tuesday and than reschedule the rest of the appointments and infusions on Thursday and Friday. They had a hard time keeping the unit staffed on Tuesday and knew the rest of the week would be worse.

We got through labs and dr appt and got Max premedicated really fast to try to be as efficient as possible so we could get home. BUT Max turned out to be that 1 in 15% that has the opposite effect to benedryl, which was a required premed due to the risk of an allergic reaction. So instead of gently falling to sleep like most kids, Max went completely ballistic, shaking, twitching, screaming and totally uncomfortable, I was unable to console him and it made getting an infusion even more unpleasant for all of the rest of the kids who had to listen to Max. The problem was that this continued for two hours during the start of the chemo so the doctors and nurses had to keep an extra close eye on him to make sure it wasn't him having a reaction from the chemo. They slowed down the rate of infusion, so much that the pressure of his blood was heavier than the rate going in and several times his blood would pump back through his tubing. Luckily we were able to get him to at least settle down a little which made his blood pressure decrease and then when the benedryl wore off Max was finally able to sleep. I am sure he was completely exhausted, than when he woke up Grandma and Papa showed up after Grandma's chemo day to play with him which made the rest of the day much better.

New Plan....






Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him and he will direct your paths (Proverbs 3:5-6)



No More Cookies....

As parents it is so hard to know what is the best option for your child, all options have side effects and risks associated with them. If we aren't aggressive enough we run the risk of developing long term brain damage, too aggressive and you can have scary side effects and long term issues. As all of our doctors have said, Max has shown so much potential in all of his testing which means we have so much more to protect. As parents we prayed that the right decision would be very clear to us and Monday morning God delivered. When we started our normal weekly testing we found that his glucose levels were elevated, something we have been waiting on for awhile, it looks like Max's pancreas is starting to get overworked, this last increase in steroids must have done it.  We are going to watch his diet very carefully this week and then discuss insulin next week, luckily steroid induced diabetes should be reversible as soon as we get him tapered down on the steroids.  So this new news ruled out two different treatment options currently available for Max, and as God promised we trusted in Him and the path was very clear. 



So we start a new round of an oncology drug called Rituxan next week.  He will receive this by infusion at Seattle Children's along with his IVIG infusions.   We are in the process of screening for several viruses that Max may have dormant in his system, if he has any of these dormant viruses it can cause major issues including fatality within 24 hours of receiving this drug.  The other problem is that he has been receiving IVIG infusions all year which come from donor blood, so the chance of someone else who donated the blood who may have had these harmless viruses are elevated.   Luckily, the UW has a world renowned virology lab and they are processing all of his blood now and should be able to tell if Max has any of these dormant viruses or had contracted them from his infusions.  We are praying that everything comes back negative this week so that we can proceed with treatment next week. 

We will do 4 or 6 weekly infusion treatments at Children's and continue with his steroids and IVIG treatments.    The last type of chemo that he had, attacked several cells in his body in hopes that we could get his immune system to reset.  It sounds like we tried to give him a dose just beneath a level that can cause all the nasty long term issues like infertility and blood cancer.  It seems that we may not have given enough, so instead of doing another round of the same stuff we are going to switch it up in hopes that we can trick his immune system.  This new treatment is more aggressive and should completely eliminate all of his b-cells in hopes that when they grow back in the next 6-9 months that they will be fixed and no longer attacking.

I have tried to simplify everything as it can be complicated, overwhelming and lengthy, so if you are one of our folks in the medical industry and you are interested in more information or you have more questions let me know and I can try to address them in the upcoming weeks.  We are excited for this new plan and a little nervous at what the next few weeks may hold, but most of all we are very appreciative of our friends, family, and community praying for us and supporting us through every step of the way, we have a peace that can only be from God in the midst of a stressful time.  Stay tuned it sounds like we have a big month ahead of us so keep those prayers coming...





Physical Therapy - Sarah

 We love playing with Sarah at Children's Physical Therapy she takes care of all of the Oncology patients at Children's.  We learned recently there has been so many cancer kids in the hospital that she will be moving to inpatient therapy only.  She is trying to make special arrangements so she can still see Max as an outpatient because they have a special bond.  Sarah shares our love for the UW Huskies, and she was actually married on the field of Husky Stadium.  We appreciate her cheerful attitude and all the encouragement she gives Max to keep trying and it has paid off as he is doing so well accomplishing all of his goals.  We are very lucky to have had the chance to work with Sarah.

Miracle Flights

Miracle  flights so graciously  supported our family in providing airline tickets at a minimal rate.  The best thing was that they handled all the reservations and booking the tickets, one less thing for mom and dad to have to do.  They also let us know that they want to continue to support us in the future and will help us with all future medical flights that Max might need.  What a huge blessing.  Check out our story on their website at  http://www.miracleflights.org/how-we-help/childrens-stories/story/max/

Boston

  

  

 We had a great, but brief trip to Boston. Had a wonderful meeting with doctors who provided lots of education and options for us. We meet with our Seattle team Monday morning to discuss. We were able to stay at the Ronald McDonald House about a mile from the hospital. It was so nice to stay at a place that felt like home, Max had a hard time parting with their fun playroom. They even had a personal refrigerator ready for all Max's medicine that needed to be refrigerated so that it could be kept close at hand. We only had a couple hours to sightsee before our flight left so we were able to visit the USS Constitution and walk the Freedom Trail for a little bit. Max did wonderful on all the flights we had many people comment on how good he was, he even slept for four hours on our first leg. Thanks for all the prayers, while we have a lot of questions and decisions still to be answered, we have a sense of peace that we have the right people on board to lead us. Stay posted for more details....

Beads of Courage - 1 Year Later

 2011 Max Facts

• 229 Appointments scheduled at Seattle Children's Hospital.
• 130 Speech Occupational and physical therapy appointments in our home.
• 52 different doctors, therapists and providers followed Max this year.
• 232 beads of courage earned.
• Took between 3 and 4 medications every day.
• 12 days of infusions.
• 93 days spent at the hospital
• 5 ER visits.
• 200 hours + spent in the car traveling to and from appointments.

And he did it all with a smile on his face making the best of every situation.

Skiing

We had a wonderful trip to Bachelor with the family after Christmas.  Madison learned how to ski with us. Even though it was dumping snow and stong wind gusts, she had a great attitude and was excited to go back.  You couldn't miss her on the mountain she was the little one squealing with joy down the mountain, with her arms in the air ( because it makes her go faster like on roller coasters).  Lots of great memories were had by all!