Sunday, June 21, 2009
Day +81: LeBron, Bengals, Birthdays and Blood Cells!
Day +81 and we're looking back on another great week overall. We got a huge surprise from my Aunt Laurie early in the week when my mom returned from a trip to Cleveland with a basketball signed by Max's favorite NBA player, LeBron James! You can see him with it in the first picture. He was thrilled, to say the least. Max and Alex have become HUGE NBA fans. They watched all the playoff games and have gotten into the habit of turning on ESPN first thing in the morning to get their "download" of the latest sports news each day. They think LeBron is amazing and Max dreams of some day attending a Cavs game and getting to see him playing in person. We have promised to make that happen once he is cleared by the doctors and allowed to go into public places. We have a growing list of wishes like this that we hope to be able to all enjoy together before long.
Matt and I also got out together again...absolutely amazing! Friday evening some friends from church invited us to attend the Taste of the NFL with them. It's a fundraiser for the Free Store Food Bank here in Cincinnati with the Bengals and about 25 of the areas finest restaurants. We took a football and a pennant for the boys and were able to gather tons of autographs from the players for them. I've included a couple of shots of Matt and I with some of them just for the fun of it. We had a nice time and had two extremely happy boys when we got home and showed them the autographed items that we were able to get for them. They were especially excited to see Ocho Cinco and Marvin Lewis's signatures!
After we got home Friday night, we had a very funny experience. About 2:45 am our power went out because some bad thunderstorms were in the area. Of course, the pitch darkness and the noise from the storms eventually woke up all three of the kids and we all huddled in our bed together with some candles burning in the room so that we could see a bit. Ellee thought it was a party! She was hysterical. When I told my mom the story she said, "you've gotta put this on the blog." Ellee has been learning about birthdays so, she thought the candles were birthday candles and just kept saying, over and over again, "candles...pretty...happy birthday" and huffing and puffing as if to blow them out! At one point she was singing "happy birthday" for all of us and, of course, the boys couldn't stop laughing. Needless to say, we were all up for about two hours enjoying our make-shift birthday party in bed in the middle of the night! We were so tired yesterday but, the memory of that night will last with us forever.
We took Max down to the hospital on Friday for his regular weekly Day Hospital visit. Overall, things remain good and he is progressing through the marathon transplant process very well. We do continue to have an issue with his white cells and ANC (his neutrafil count or count of real infection fighting white cells). The doctors do not seem too concerned and give me the impression that this is fairly normal in the course of the BMT recovery process and that, given time, it will work itself out. Essentially, they are beginning to believe that Max has some antibodies from the tiny bit of his immune system that remains (less than 3% of his blood cells are being produced by his marrow by measurement) that are killing Ellee's white cells right now. Over time, as Ellee's white cells mature into B and T-cells (the infection killers), they will overcome these antibodies and the problem will be solved. But, the question is, how long do you wait. It means that right now, Max's white cells are at extremely low levels again and thus, his ability to fight off germs is not good. There are other things that they can do to try to solve this issue more quickly, although they are "less conservative" in the terms of our Nurse Practitioner. They could reduce the amount of immune suppression medicine that they are giving Max (ie Cyclosporine) to try to allow Ellee's system to get stronger more quickly but, this would almost for sure cause Graft vs. Host for Max which can be an extremely dangerous complication of the BMT. There is also another medicine that they can use to essentially wipe out the antibodies that exist and are killing the white cells but, this would basically reset his immunity building again and we'd be starting from scratch. So, we are in a waiting game with this situation. The team is looking to Dr. Davies to make the call as to what to do and she was on vacation last week, something which she is very entitled to, considering that we know she works 10 - 12 hour days, day after day, in an effort to help as many kids as one person possibly can. So, we are practicing patience and not worrying while we wait to see what they will decide to do. In addition, we are re-energizing our commitment to keeping Max and his surroundings as clean and germ free as they possibly can be! We don't want to end up back in the hospital because of some little germ!
Matt's sister, Monica and her husband, Mark asked a good question last night that we thought might be on other people's minds. They asked how Max would build an immune system without being exposed to germs. The answer is that right now, Max doesn't have the basics that are required to have an immune system yet. He isn't even producing the necessary cells to be able to fight germs and create antibodies (ie immunities) yet. That's why we have to be so extremely careful and isolating right now for him. He probably would have a huge struggle still just to fight off the common cold. Once these cells begin to be produced and mature enough, then he will need to rebuild all of the immunities that he previously had. It will probably be about a year from the transplant (so April 1, 2010) before Max's system is functioning well enough (ie producing the right cells that are mature enough) to be exposed to germs and start rebuilding his prior immunities. Thus, why he may not return to school at all next year and why he won't be able to return to stores, restaurants, church, etc for some time yet. Once he is able to "return to normal life", he will likely catch a lot of germs and be sick often while he develops the antibodies against these viruses, etc. again. He will also spend that next year (roughly April 2010 to April 2011) being re-immunized as all of his former immunizations are also gone now.
Despite these ongoing challenges, life is good. Max is very happy and feeling great. He got to see both sets of his cousins (Andrew and Jacob and Will and Ben) this week as well as his good buddy, Raad. He is doing very well with his home schooling and making great progress in catching up on what he missed in first grade. We are beginning to work with the school district on plans to continue the home schooling next year. We received a packet of information from the Make a Wish foundation last week and they should be coming out soon to interview Max and start putting a fabulous wish granting together for him. We'll keep you all posted on that excitement also!
Ellee and Alex are doing well too. Alex definitely struggles with the lower key lifestyle that we have right now. Any four year old with an abundance of energy would! We are trying to help him out by keeping him involved in some activities that lessen the chance for germ catching. He started t-ball yesterday morning and really enjoyed that. Our families are helping also by trying to "get him out" here and there for playdates, etc. Ellee and I went shopping together for the first time in probably six months yesterday! I took her to Target and the grocery with me on my errands and we had a nice, girly time. I have figured out ways to keep her safe in the stores...I either use a stroller or a cart cover and don't let her touch anything. We kept our distance from any kids too, just in case they were coughing or sneezing! It's so fun to be a germ-a-phobe!
Life post-bone marrow transplant is good, although tough. We are savoring every minute as much as we can and doing our best to "live in the moment." A fellow BMT mom sent me the following quote and we try to remember this all the time: One day at a time is enough. Don't look back and grieve the past; it's gone. Don't be troubled with the future, it has not yet come. Live in the present and make it so beautiful it will be worth remembering.
More from the Meyer homestead soon...for now, thanks for your continued prayers, love and support. Happy Fathers Day to all you dad's and grandpa's out there!
Kristi (and Matt, Max, Alex and Ellee)