Thursday, July 9, 2009
Day +99 (Day +100 Eve): We've Come a LONG Way
It's day +99...somewhat hard to believe that it is here already! As I've explained before, day +100 is a big milestone in the bone marrow transplant process. Generally, it's the first time that more extensive testing of the patient's immune system is done and, generally, progress in the development of the system is found. It's also the point at which the risk of death from the bone marrow transplant process decreases...always a good thing in our book. :) For patients from out of town, day +100 can be really huge because they can sometimes head home at this point and transition to doctor care in their own town.
Unfortunately, day +100 isn't going to be quite what we hoped it would be when this all began but, looking back on the path that we have been down already, we realize that Max has come a very LONG way. We were hopeful that day +100 would bring a few milestones for Max...removal of his central line and the ability for him to play outside without wearing his mask. But, we have learned a lot more as this process has gone on and we now know that removing the central line would not be a good idea at this point. Max is still going to the hospital twice a week for blood draws and on Friday's he is still receiving 3 different IV medications so, without the central line, these visits would be quite miserable for him! I spoke with Dr. Davies a few weeks ago about the central line removal and she is recommending that we do not take it out until we are down to once a month blood draws, at least. As she put it, "we need to keep him comfortable with the idea of coming down to the hospital regularly still at this point." If we added the needles back in, he would definitely not be comfortable! As for the mask, since Max is still on Cyclosporine (his immune suppression medication) the doctors recommend that he continue to wear his mask outside. I am going to revisit this with Dr. Davies when we see her tomorrow and keep asking until they say that he can go without it to play in our yard, etc. It's pretty tough to play in summer heat with your nose and mouth inside a mask so, it will be really nice when Max doesn't have to wear it anymore.
I'm writing today instead of tomorrow because we have quite a big weekend ahead of us, beginning tomorrow. Max and I will head down to the Day Hospital for our regular 8:30 am appointment in the morning tomorrow and plan to celebrate our day +100 with the nurses and doctors while we are there with some special donuts. Then, tomorrow afternoon, my mom and I are heading over to Indianapolis for a conference on aplastic anemia sponsored by the Aplastic Anemia and MDS International Foundation (AA&MDSIF - "Fighting Bone Marrow Diseases Through Patient Support and Research Since 1983"). I am really looking forward to learning a lot more about aplastic anemia and hopefully getting some answers to many questions that I still have about the disease. We'll be there until around noon on Saturday and then will head home. Matt and I are going to his cousin's wedding on Saturday night which will be the first time that we get to see much of his extended family since this all began. We are really looking forward to it. Sunday, we have a big celebration of day +100 planned with our immediate families. Max is ecstatic about his "Day +100 Party" and can't wait to play lots of fun "100" games with his cousins, aunts, uncles and grandparents. I'll be sure to post pictures and commentary about the celebration next week.
Although our road has continued to be a bit bumpy lately, we are so grateful for where Max is and how well he is progressing through this marathon journey. We did breath a sigh of relief on Tuesday when we found out that his engraftment as of last Friday's blood sample was back up to 94.2%! It appears at the moment that Ellee's marrow is winning the "tug of war". His ANC, however, was back down to 500 which is the point at which they consider intervening with a drug called Neupogen (aka GCSF) to stimulate the white counts. The doctors decided to hold off on doing this for now because they don't want to give his own cells the ability to strengthen at all and potentially win the "tug of war" against Ellee's marrow. Thus, we will be anxious tomorrow, as always, to see his counts and know where things stand.
Looking back last night on our journey to day +100 was pretty powerful for Matt and I. We realized how far we have come already. Just 100 days ago, Max was in the hospital, getting ready to undergo the transplant from Ellee and we were nervously anticipating the big day 0. Just over 100 days ago, Max could not support his own blood production. His red cells, white cells and platelets were all at critically low levels and he was being sustained through the continued administration of blood products from donors. He has not needed a blood product since the week after the transplant! With the help of Ellee's marrow, he has been able to sustain his own blood cell production and is well on his way to being healed. We can only hope and pray that the next +100 days lead to the same kind of progress down the healing path that Max has experienced already.
Max is looking and feeling wonderful. He is happy and full of life. Everyday we see him getting closer to the way he was before this all happened. It is an absolute medical miracle and we are so grateful for Cincinnati Children's Hospital and the amazing doctors and nurses and therapists that we have come to know through our journey. We are also continuously thankful for the thoughts, prayers and unending support of you all that have loyally followed our journey. We know that you are there, continuing to root us all on and it means more than you can imagine to all of us.
More soon with some fun pictures, etc from the "Day +100 Party"!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)