Monday, April 13, 2009
Max's Magnificent Miles
Matt and I have been thinking about how to convey the long journey that we are on better to everyone and have decided that it would be good to use an analogy to something like the Tour de France or a marathon. Max's journey through the BMT process is a long one, as I think most of you realize and we thought it would be helpful for everyone to understand more realistically where we are in the journey at each point in time. The BMT process is broken up into three phases...preparation; harvest and transplant; and growth and recovery. We have made it through the preparation phase and are deep into the harvest and transplant phase now. Once we know that the bone marrow has "officially" engrafted in Max, then we will move into the growth and recovery phase.
Max's blood counts were terrific again today. The marrow from Ellee certainly seems to be doing what we all hoped it would! His ANC is now at 1470 which is TONS higher than it has been in months! However, the difference now versus before we began the BMT process is that Max has no immune system...in other words, he has no immunities built up in his body and thus will catch any virus, fungus, bacteria, etc that happens to come his way. Of course, some of those could be nasty little germs that could cause him major problems. The worst offenders are usually viruses for which there are no medicines (like antibiotics) that the doctors can use to fend them off and help Max recover. Thus, as we move into the growth and recovery phase and head home, we will still be under strict isolation requirements. Max will be unable to leave the house, essentially, except to come down here to the hospital for regular check-ups (probably 3 times per week at first). That isolation will continue until at least day 100 which means 100 days post the transplant day (or 100 days post April 1st...late July). We will also need to be careful at home with germ control to minimize the potential for Max to pick something up from one of us. LOTS of Clorox wipes and antibacterial hand gels, etc!
The doctors said today that they will check the level of engraftment of Ellee's marrow in Max tomorrow and should know later this week where things stand. The engraftment is checked through a simple blood draw through Max's central line...something that is done at least once everyday right now and has become a very regular occurrence for Max. They are working on potentially sending us home sometime next week! Max is also allowed to get out of his room tonight for a walk or Big Wheel ride around the floor at about 7:00!
So, while this current news of engraftment and rising counts is extremely joyful and something we are very thankful for, we are also hesitant to celebrate right now. We still have a very long road ahead. It is very likely that we will be back in the hospital for a few days to a week at a time more than once within the first 100 days post transplant. If Max has any fevers, it is an automatic admission down here again for observation and analysis to be sure there are no major issues.
We tell you all this not to bum you out but so that you understand when Matt and I are not as excited as you might think we should be sometimes. Our standard thought to each other these days is that we will throw one heck of a party about two years from now when we get the "all clear" from the doctors and know that we can go and do anything we want to as a family and Max will be fine! That is typically what we have been told to expect from a timing perspective on this journey. The growth and recovery phase will not truly be over until that point. The first year will be a matter of growth of Max's immune system and the second year will be a journey through re-immunization. Max will have to be re-vaccinated as he has lost all the previous immunity that he had from the immunizations he has received since he was born.
So, bear with us on this marathon journey...and get ready for one HUGE celebration in 2011!
I have attached a picture of Matt and Max with their new hairdos...Max's hair was falling out like crazy so we decided on a buzz to make it less itchy. He asked Daddy to do it with him and Matt agreed. Don't be shocked when you see Matt out and about with no hair! Mommy did the buzzing...it was my first time and I could definitely stand to improve on my technique in the future!
Thank you for the amazing amount of support that you all have given all of us. It has meant so much to us so far along Max's Magnificent Miles and we know that it will continue to sustain us through the rest of this marathon!
Peace and Love,
Kristi (and Matt, Max, Alex and Ellee)