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...