A Bit of Great News

We've had a very busy time lately but, wanted to be sure to share our bit of great news that we received the last few days. We don't have official confirmation yet but, Ellee appears to be free of FA so, things are moving ahead for the bone marrow transplant from Ellee to Max later this month or early in March! As we have said before, this is definitely a best case scenario for Max, as tough as the next few months will be.

Max had a PICC line put in yesterday morning (a permanent IV line under his arm) which will help to minimize the number of sticks that he has to go through over the next few weeks. We met with our new doctor, Stella Davies, and her team over the last couple of days and they are wonderful! What a talented bunch! We feel so blessed to have them on our side and healing our Maxer. We learned a bit more of the details about what will go on during the bone marrow transplant. To summarize, Max will be in the hospital for approximately 6 weeks. He will be unable to leave his hospital room as it is specially air purified and he will be so extremely susceptible to infection. One of the initial things they will do is remove his PICC line and put a central line into his main artery in his chest. He will be under anesthesia for this procedure so, at the same time, they will take another biopsy of his bone marrow to see where things stand.
During the last phase of preparation for the transplant, he will undergo 8 to 10 days of chemotherapy. He will lose his hair and will probably be very "pukey" during this phase. The transplant will take place on what is known as day zero. On that day, Ellee will undergo a relatively minor surgery to harvest her bone marrow. She will be put under general anethesia and it will take about 2 hours for her to get entirely through the harvest procedure. She should feel pretty good later that day and may be able to go home that night. That same day, Max will receive Ellee’s bone marrow through his IV line. Quite amazing! The next three weeks time will be the most critical for Max as his immune system will essentially be non-existent and trying to rebuild with Ellee’s marrow. The doctor’s will be closely monitoring him, obviously, during this time and will be hoping to see Ellee’s white cells being created in Max’s body!

The final phase of the transplant is the growth and maturing of the bone marrow in Max’s body. It will have to completely rebuild his immune system and will take lots of time. They are telling us that it is typically at least a year before kids can return to public places (ie school, stores, restaurants, etc). It can be two years before their immune systems return to where they once were. He will need to be completely re-immunized, for example, after the transplant and once his immune system can handle it.

So, we have quite a road ahead of us. But, we know that it is a hopeful one and that as hard as the next few months/years may be at times, it will all pay off for all of us as Max will be healed and will go on to live a fruitful, productive and wonderful life. He is maturing immensely through this process already and will be ready for anything that life throws at him after this (as if he wasn’t already). We have been telling him about what is going to happen little by little and he has handled it all very well so far. We will be right by his side through all of this.

We still do not know about Alex and the FA. They rushed Ellee’s tests to find out first for Max’s sake and for the bone marrow transplant urgency. We hope to know about Alex next week and are doing our best to think positively about the outcome of his testing.
We have observed three ways in which you can help already, if you are interested. We plan to start doing all of these things once we get through this. First, donate blood and/or platelets. It has saved Max and sustained his body through this difficult time. Second, call the Ronald McDonald house to see how you can help them. We cannot imagine if we were not in our home town, on top of everything else! Finally, Children’s Hospital has a service called Child Life for the kids while they are at the hospital. People from Child Life visit the kids while they are there and offer them toys, video games, movies, books, etc. to help them be entertained and feel a bit more comfortable while they are there. It has been an enormous help with Max and all of our kids when we have been there for different tests, procedures, etc. We have observed that they are definitely in need of some upgraded toys, movies, video games, etc. You can donate either money or new toys to them and I have a wish list of items for the Hematology/Oncology unit if you are interested.

The next few weeks are going to be very busy with preparations for the transplant for both Max and Ellee. Max will have some kidney and heart testing done on Friday and some CT scans on Monday. Ellee will have blood drawn for various tests in preparation for things tomorrow and Tuesday, along with a physical by the transplant team on Tuesday. In addition, Max will have blood transfusions as needed along the way. We will provide more updates as we can as things go on.

Thank you all, once again, for all of your thoughts, prayers, gifts, cards, meals, cookies, etc…they have all brought smiles to Max’s face! We are going to get through this and knowing that we have such an amazing community of support around us is helping us every day.