Tuesday, August 11, 2009

Day +132: Friends, Fun and Philanthropy

Today is day +132 or, as Max put it this morning, "+30 days since the day +100 party". Amazing how kids think. He had such a wonderful time at that day +100 party (even though it was on day +102) that he is now keeping his time based on that day. :) Cute. That sums Max up right now...he is living for the fun days and making the most of them! At the moment, he is enjoying a very fun day with his two cousins, Will and Ben and his two neighborhood buddies, Raad and Giana, along with his best buddy, his brother, Alex. They have been running around here, building forts, playing basement basketball, building Legos, playing Rock Band 2 and just generally having a ball. Max is so full of life and, suprisingly, energy! More than I have most of the time!

We have had another good week overall. Last Friday's visit to the Day Hospital was pretty uneventful. We did have a nice discussion with Dr. Joshi since Dr. Davies was not there and Max shared all of his pictures from the Reds game with her and our Nurse Practitioner, Paula. They both asked for some copies of them to put at their desks, along with one of Max with Alex and Ellee. They have treated our family so kindly and always make us feel special. We have some prints ready to take with us for them on Friday.

The major issue that we continue to watch with Max is his engraftment level. It has been fairly stable around 85 - 90% for the last few weeks and we are hoping and praying that it stays stable around that mark. We have also been working with our Nurse Practitioner and the doctors to keep the level of the immune suppression medication, Cyclosporine, in Max's blood at just the right point. Finding the right balance with this med has proven difficult. We want it to be at a place where it is preventing the original t-cells in Max's body (those that originally attacked his marrow) from doing it again while at the same time, not being too high that it will damage Ellee's marrow and hurt his engraftment. Thus, we are continually monitoring this level and had to make a quick trip down to the hospital again this morning to check it and make a minor adjustment to his dose as a result. Dr. Joshi told me last Friday that if his engraftment level does not begin to stablilize over a period of several weeks, the doctors will need to "regroup" to come up with a plan for Max. Made me a bit nervous, to say the least. Sometimes just when you start to settle in to things in the BMT world and get comfortable, your seat is pulled out from underneath you. Thus, we are praying for a stabilized engraftment percentage and no need for an action plan for Max.

On a positive note, we did discuss the schedule for hospital visits briefly with Dr. Joshi on Friday and the hope is that we will be able to go down to every other week visits at about the 5 months post-transplant mark (September 1st) and will revisit going down to once a month visits at the 6 months post-transplant mark. As you may remember, it is when we are down to once a month visits that we will think about removing Max's central line, something which we will all be extremely excited about! That will be another huge cause for celebration!

We had another full weekend of fun activities around here. A step-cousin of Matt's was married on Saturday night and Matt and I enjoyed another relaxing evening with the Meyer side of the family (that's where the suckers came from in the picture above). Sunday we celebrated cousin Andrew's 10th birthday with the Meyer's and the kids had a ball, as usual.

We are absolutely settling in to our "new normal" although there are parts of it that we hate and are anxious to have over. We have not seen my neice and the kid's cousin, Audrey (my sister's daughter) in over a month. She is 2 and, as all 2 year olds do, has picked up a few germs lately and had a rough couple of weeks with a stomach virus, fever and rash, etc. As a result of these germs, I asked the doctors about how they felt about us visiting with her at this point, once she is well. They recommended that we not see her until Max is 6 months post transplant, or possibly after October 1st. Obviously, that is difficult to hear and to imagine. My sister and I have been able to see each other and we are going to try to at least get Ellee and Audrey together to play outside when Audrey is well as they LOVE to play together. Thankfully, my sister understands our situation completely and knows that we just have to practice patience until we can all be together again like a "normal" family.

As a whole, we are all happy and enjoying life although, as I've shared many times, we all have our moments here and there. I had another one of my moments at the wedding this past weekend. The band was playing one of my favorite songs, "I Hope You Dance", which can be a tear jerker as a mom under normal circumstances. I was doing completely fine, enjoying the evening, when all of a sudden about half way through the song, I thought, "I hope Maxer dances...I hope I see him dancing at his wedding..." and I had to run out of the room and hide for a minute. I know that everyone would have understood "my moment" and that I could have cried in front of everyone but, I just don't want to do that. I want to KNOW that I will see him dance at his wedding and I don't want to let myself think any other way, especially considering how well he is doing at this point. That darn worry and insecurity always finds a way to sneak its way in...and I think it's good, in some ways. It makes sure that you don't take one minute for granted and that you appreciate the time you have with your loved ones...every second.

Many positives are coming out of this situation, too. Last night, my mom arranged for a group of us to go down to the Ronald McDonald house to bake goodies for the families staying there. Although in some ways it was a bit tough for me, emotionally, it was such a powerful feeling to know that, by participating, I was turning a difficult time in our lives into something positive for other people struggling through similar situations. I got to witness first hand the joy that a simple chocolate covered strawberry or a cupcake can bring to someone's day. I did run into a couple of families that I met while we were in the BMT unit and there are mixed stories. Some are doing well, others are not. It's a tough place to be, as I know, and I want to do everything I can to make it as easy as possible for these families to get through. As one of our friends from the BMT world recently put it, "A negative by-product of this experience has been coping with the deaths and serious health issues of children. Ignorance to this was nice. However, when we were ignorant to these issues, we were not doing anything to help. With this awareness, we are now in a position to do something to help." (Thanks, Rick and Lynne) I have seen SO MUCH need for help...it's overwhelming at times. I have a to do list that I am beginning to work on. At the top of it are registering to be a bone marrow donor and regularly donating blood, along with regularly volunteering as we did last night at the Ronald McDonald house and getting involved with the Champion's program at Children's which helps families to give back to the hospital...among other things. We know that many of you have already been moved to join us in these causes and we are honored. It is the most tangible way that we see the positive impact of Max's situation.

More to come soon...

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

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.