Day +315: Continued Good News

It's day +315 for Max and I have been meaning to do an update for some time now but, haven't been able to get to the computer until today! Last Friday we had a good visit with Dr. Davies down at the Day Hospital. We got continued good news along with a few surprises. Max's progress thus far remains positive and we are at a point where he can do a bit more, very cautiously. Dr. Davies indicated that Max's immune system is working now, although not in "top notch" fashion. Thus, he does have some ability to fight off germs and infection, coupled with his continued monthly infusions of IVIG (the IV immuno-globulins from donors which help bolster his immune system). With all this in mind, she told us that she thought it was safe for Max to cautiously venture out a bit more without his mask! For example, she said that he could accompany me to stores during the week as long as we avoided anyone that was coughing or appeared to be ill and practiced good hand washing. She recommended keeping his mask handy in my purse just in case and really just staying away from people as much as possible. Great news! Max and I were smiling ear to ear!


We have been putting Dr. Davies advice to the test the past few days and I have to tell you, it has been stressful. While Max has enjoyed getting out a bit more, it is so hard to know whether we are protecting him enough, especially during this cold and flu season. We all went to church together last Sunday, for example, as Max REALLY wanted to go (thus the picture above). It was wonderful to be able to be there together and, while we all enjoyed it, Matt and I have already been debating about trying it again. There were a few people coughing and, although we sat in the back row and had Max wear his mask in and out and during communion and really not touch anyone else, it was still worrisome for us. Even Max cast a few worried glances at me as we heard people cough during the service. We all SOOOOO want to be able to do these things again but, I think we are realizing that it's not worth the risk quite yet. We need to continue to be patient and find those things that we can do that are truly safe and will keep Max healthy.


On this note, I just got off the phone with one of the Nurse Practitioners we have been working with at Children's. Unfortunately, she was calling us to let us know that Max's engraftment percentage from last Friday has fallen to 87.8%. It has only been lower than this once this past year and, while she said that Dr. Davies is not too excited about the drop, she does want Max's level to be checked again in two weeks so that they can monitor it and decide if intervention is necessary. Of course, I called Matt as soon as I hung up and we are both concerned. We have been here before and everything had worked out just fine for Max but, I tell you, the worry never seems to end. Just when you think you are getting somewhere in this process, you are told that you aren't.


I also discussed Dr. Davies latest advice with our Nurse Practitioner and asked her to follow up with her for more clarification regarding what is safe for Max to do at this point. However, as the two of us discussed it and I heard her opinions, I was reminded to be patient and to take our time with getting Max out in the real world again...especially at this time of year. Her words that are sticking with me were, "I think I know you well enough to know that you don't want to have any regrets." EXACTLY!!!


So, we are searching for ways that we can safely get Max out a bit and keep him happy. He is SO ready for more and deserves a chance to celebrate a bit and have some 8-year old fun. With that said, I am planning to take he and Alex, along with cousin Ben to Max's favorite indoor skatepark tomorrow afternoon - Ollie's! Max and Alex have not been in well over a year and they are totally psyched about the trip! I think it should be safe there. Generally, it is an older crowd with most of the kids being in High School. In addition, we are going to go right when it opens, when it is typically pretty empty. Finally, Max really doesn't get near any of the other kids while riding his scooter. I'll be sure to take lots of pictures and share the excitement of this trip with all of you soon.


Along with everything I've shared with you so far, we did get two other pieces of somewhat surprising news at our visit last Friday. The first was that Max will have to avoid all public pools through the summer. Unfortunately, this means that we will miss-out again this summer on the fun times we typically enjoy at our swim club. However, we are adjusting, as usual, and already planning other fun water related things we can do around home here - potentially involving a new Banzai (for those of you that don't know what that is it's a GIANT inflatable water slide)! Max will also need to avoid the public pools in Florida when we go with Make A Wish however, he will be able to swim in my Grandma's pool while we visit her and can swim in neighbors pools this summer, as long as we know that no one sick has been in them.


The other surprise last Friday was that Max will remain on his Cyclosporine quite a bit longer than we had originally thought. At the start of the BMT process, Dr. Davies had told us that he would be on the immune suppression (Cyclosporine) for probably 6 months post transplant. At the 6 month mark, she told us a year post transplant. Now, as we near the year mark, she is saying that he may be on it until the end of 2010 or possibly even longer. Her reasoning for this is to protect Ellee's graft. She feels that Max's Cyclosporine level is safe at this point and that there is no rush to wean him from it. By keeping him somewhat immune suppressed, she is protecting his remaining marrow from gaining strength while buying Ellee's marrow time to grow and flourish so that when she does wean the Cyclosporine, Ellee's marrow will be sure to take over and "win" the tug-of-war. We have come to terms with this surprise and accept it for the most part, although it does cause us some continued worry. The insert that comes with every bottle of Cyclosporine warns that it can cause Lymphoma so, that tends to make you a little concerned. However, we are reminded that people who receive organ transplants remain on Cyclosporine for the rest of their lives to protect them from rejecting the transplanted organ.


You can probably sense from reading this post where we are...we continue to feel blessed that Max is doing as well as he is and yet, we continue to worry, worry, worry. This is a LONG process and we have again been reminded that we need to be patient. We do believe that remaining patient now and keeping Max healthy and protected will enable us to get to the end of this road more smoothly and will pay-off for him in the long run. It is just a struggle to continue to be patient. We would LOVE to just be able to do what we want as a family and not have the worries that we do.


When we begin to be overcome with worry, we try to remember where we have been and how far Max has come and we try to follow the same advice that we have lived by the past 13 months: live in the moment, making the most of each day with the ones we love and being sure that they know it. Max's time will come, the time will come for all of us to be out and about again without worry. We just have to trust and pray and take things one day at a time.


More soon...


Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)