Day +203: All Is Well

It's day +203 for Max and things continue to go well for him, health-wise. We have not needed to make any additional trips down to the hospital for any concerns since our last regularly scheduled appointment 10 days ago, which is always a good thing. Overall, Max seems to feel pretty good most of the time. He does still tire much more easily than he would have before, tends to be pale with dark circles under his eyes, and gets stomach and head aches occasionally. Other than those things, his central line and the 5 medicines that he still takes three times a day, you would almost not even know what he went through just 203 days ago! He is doing well and we are extremely grateful for that!

We have settled into a pretty good routine around here too. Max's tutor comes to the house Monday through Thursday mornings and spends between an hour and hour and a half each time with him (5 hours per week). Max really likes her and is progressing very well with the home schooling. He is staying right on track with his second grade class so far. We have also begun a really cool thing with his class - on Monday morning we Skype (video chat through the computer) with them for their "morning meeting" and on Thursday afternoons, we Skype with them for "writing workshop" where Max gets paired with a partner to write together for an hour or so. It's been an awesome way for him to stay a little bit connected with his class and he seems to really be enjoying it. He has several buddies from last year in his classroom so, they have all been excited to see each other and get a little chance to catch up. We plan to do even more Skyping with them and work up to having Max in a reading group with fellow class members. Isn't technology amazing?!?

Alex is also progressing well through his last year of pre-school, even though it is currently happening here at home! His teacher and I have worked out a great system. She sends work and activities home on Monday for the week and I work through them with Alex and then send them back to her at the end of the week. So far Alex has learned lots about the letters A thru E and the numbers 1 thru 4. He really enjoys learning and works hard on his little assignments. I can just tell how badly he wants to keep up with his older brother. He's a great worker.

Ellee loves to color or play with Playdoh while the boys do their school work. She is famous for looking at me while she is doing this and saying, "I'm makin' a mess!" We end up with about 100 markers, crayons and chunks of Playdoh all over the floor but, it keeps her busy for a bit so that I can work with the boys. She got a new kitchen from my Aunt Laurie's company, Little Tikes, for her birthday and she absolutely loves playing with it. It's in the basement so, several times a day she says, "I wanna go see my kitchen!" and we venture into the basement to have her bake us some cookies and cupcakes. Speaking of her birthday, it is officially this Saturday and she is very excited about it. She keeps saying to people, "My birthdays coming up." and when you ask her how old she is going to be, she replies, "two and terrible." I couldn't believe my ears when she said it the first time, I don't know where she picked it up! So cute!

Besides all that, we spend LOTS of time playing and walking our little buddy, Spud. He is shaping up to be a pretty good little dog so far, although he still has plenty of crazy puppy moments that drive us all a bit nuts! They are all worth it though, as he really motivates us to get up and out of the house, even when it's cold or rainy. I know that is super valuable because we all can tend to get a bit depressed if we sit around inside here too much. Having him to keep us moving and getting fresh air everyday is really important...I think it helps us keep our spirits up.

We have also been able to keep seeing our cousins, Will and Ben (Monica's kids), at least once a week generally and our cousins, Andrew and Jacob every other week or so. The boys LOVE being able to play with them and would be happy to see them everyday but, they are busy with school and sports activities and we are also being extra careful about germs all the time. The darn H1N1 is circulating around both of their schools like crazy so we feel like we are all continuously dodging bullets! We hear regularly about more cases of it with friends and fellow classmates and it's freaking us all out, to say the least. We have all been hoping that the vaccine would make it here in time to spare all of us from the virus and give us some protection and it sounds like it is coming to their schools very soon but, in the meantime, we are having to hold our breath everyday that none of them come down with it. It has definitely added an element of extra challenge to this already tough situation with Max. I ask myself all the time, "why did this have to happen this year?!?"

I know I have no control over that and that we just have to be extra careful and get through this, at least until we can all get vaccinated. But, that has been the other part of the problem that has been so frustrating. I cannot get the vaccine for us (Matt, Max, Alex, Ellee and I) anywhere! It's somewhat unbelieveable but, the hospital does not yet have it, nor does our normal pediatrician. The schools seems to be getting it first, if you can believe that. So, I tried getting us all vaccinated through the school and that was not possible either, due to the restrictions the government has put in place for the school vaccination programs. I can't tell you how frustrating this has been. The hospital does not know when they are going to get them and basically can't tell me much at all. I was absolutely distraught last Friday after watching the local news and seeing seemingly healthy high school kids getting the H1N1 shots in one of the first rounds of school vaccinations around here. I realize that everyone has some level of risk in this situation but, no one can tell me that my son Max, having a bone marrow transplant 203 days ago is in better shape to fight that virus than a high school kid!!!!! I was extremely upset and angry and wanted to get this point across to the government that has put the priority list for dissemination of this vaccine into place so, I wrote a letter to Obama and his administration and sent it to him through his website last Friday. Everyday Max asks me if I have heard back from him - he knew I was upset about the situation and wrote to him. I have yet to hear from him. If anyone has any other ideas about how I can get this message out to the folks in charge of this vaccine, please let me know. Obviously, I am passionate about this and want the government to realize the mistake they have made here. I am hopeful that they care more about lives than economic impact and that is not what drove their priority list!

Now that I'm done venting...the H1N1 situation has made things much more difficult for us and it gets somewhat depressing at times. We were told at our last visit that we could go to the Zoo, just staying outside and away from other visitors, especially school groups. But, I am hesitant to go there right now with this new flu flying around town. I just keep thinking that once we get that vaccine, we will be so much more protected so we should wait. I am also waiting for that vaccine, as well as the regular seasonal flu which I also have not been able to find anywhere for Alex, to send him back to school. I want him to have that level of protection that those two vaccines can provide our family before he is around all those other kids again. These are just two examples of things that are "on hold" while we wait for this protection which hopefully show you how it can get you down. Our lives have already been so turned upside down. Not being able to get these vaccines is just making that worse right now and not allowing us the opportunity to even have a tiny bit more normalcy.

The outlook for Max's future remains promising. We feel that if we can get through this "viral season" well, as Dr. Davies called it, he may be on his way to a return to "normalcy". What continues to weigh heavy on my mind is what "normalcy" will be for us going forward. I think that with time, the concerns over Max's health will hopefully become less and less a part of our lives but, I know that they will never go away. This is not a process that "normal" people go through - I don't know anyone that is my age or my parents age, for that matter, and has had a bone marrow transplant, although I'm sure they're out there. We just can't be sure what the future holds for Max as a result of what he has gone through and I think that is the scary part. I tell myself that no one ever knows what the future holds but that reality is different for us now than it was before. As I've said before, our confidence has now been shaken like it never was prior to this experience. We now really know how fragile life is and how quickly it can all change and that definitely changes your perspective on things.

The other day, as I was taking a shower (usually one of the rare moments of quiet that I have in a day), I thought about Max's future wife for some reason. It's thoughts like this that I totally took for granted before that now make me freeze for a moment and pray that it will happen for him. I imagined the discussion that we will all have to have one day about the fact that he may not be able to have children of his own as a result of this BMT process. Then I imagined this beautiful young woman who is disappointed, yet accepting of that possibility and loves him despite it and how happy that Matt and I were that he had found her. These are the images that I continue to cling to...a future of happiness and endless potential, with all of this nothing but a distant miraculous memory!

More soon...

Peace and love,

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