Tuesday, May 31, 2011
Day +790: Major Milestones
It's day +790 for our Max-Man and life is good...really good! I apologize for not updating in nearly two months but, we have just been too busy having fun to take the time!!! Max continues to feel and look great, although we remain in close contact with the hospital and continue to monitor things on the inside.
I have been wanting to update for some time but, felt highly compelled to do so after the amazing weekend that we just had. It was opening weekend at our swim club here in Cincinnati and we were all looking forward to it! We hadn't been there in three years since Max was not allowed to swim in public pools until fairly recently. It was wonderful to be back and to let all three of the kids enjoy this summer tradition of childhood. Best of all was seeing Max there. He was unstoppable!!! Matt and I could barely keep track of him as he cruised around the pool with his cousin Will and some of their best buddies. Multiple times throughout the weekend, Matt and I would be swimming with Alex and Ellee, only to look across the pool to see our Max jumping off of the high dive!!!!! This is a 10 foot board so, it is no laughing matter!! I have not tried jumping off of it in some time but, the last time I did, I nearly climbed back down! It is intimidating! But, not for Max. He would jump off the low dive or the high dive and go right back into the line to do it again, and again, and again!!! He had the greatest grin on his little face that I have ever seen! He even did a front flip off of the low dive a few times over the weekend. In all that we have been through, watching him jump off those boards felt like one of the most major milestones that we have reached with Max. Here we were in a super crowded pool, with many strangers all around him, watching our Max just loving life, enjoyring himself as much as possible, all from across the place!! It was awesome. I kept thinking, "if you didn't know what that kid has been through, you would NEVER know!!!" Just what we have dreamed of and prayed for for so long.
The icing on the cake for all of it too was what Max said to me a couple of times. We spent a few hours on Sunday and Monday at the pool and both days Max commented, "Mom, this is so much fun!" On Sunday when we got home, he said to me, "Mom, I can't believe how many kids I know go to our pool." and went on to list the different people that he knows that he was excited to see there. Then yesterday, Monday, when we got home was my favorite comment, "Well, Mom, another 11 board day for me!" (meaning he had jumped off of the boards 11 times both Sunday and Monday). Just awesome!
We also enjoyed some great time with our families this holiday weekend. We had a cook-out at Aunt Sarah and Uncle Ryan's on Saturday with the whole Meyer clan. The kids enjoyed some yummy smores which you can see all over my messy Max's face in the picture included here. We are all getting very, very excited for the arrival of baby girl McGough (Sarah & Ryan's first) in early July. It will sure be a blessing to have a new life around again! We also got to hang out with my family last night and enjoyed watching the kids have a scavenger hunt, courtesy of Papi (my dad) and play various games outside.
Despite all of this "normalcy" and wonderfulness, Max's health situation remains at the forefront of our thoughts, as it probably will for the rest of our lives. We have to watch his sun exposure, as you all know, so we are going to have to figure out a new routine this summer so that we can enjoy the pool as much as possible without putting him at any risk. We are hoping that gobs of sunblock every two hours will do the trick, keeping him safe while letting him enjoy the heck out of the boards and everything else at the pool.
At Max's last monthly appointment the first week of May, we were thrilled to learn that Dr. Davies was ready to let us go to an every other month schedule! Unfortunately, however, Max's Nurse Care Manager, Kathy, called two days later to say that we would have to come in for labs (a blood draw) in two weeks because his kidney levels were elevated! Dr. Davies and her team are always monitoring multiple different body systems through Max's blood, including his kidneys. The cyclosporine (immune suppressant) that he remains on is difficult on the kidneys thus, they keep an eye on their function, as well as the level of cyclosporine in his body, to be sure that they are striking the right balance. It's a delicate balancing act as we need the cyclosporine level to be high enough to protect Ellee's marrow and give it time to mature, while not allowing Max's old marrow to gain any strength and/or cause him any damage to his kidneys, etc. Thus, as a result of this slightly elevated kidney level, Dr. Davies took the cyclosporine dosage down just a tick and asked us to come back in for labs to check his kidney levels again in two weeks. We were just there last Thursday to do that and haven't heard yet what the results are. We are pushing fluids as much as possible at the same time, of course, as always, to try to help his kidneys flush through the medicine as well. I never realized how hard it can be to get a 9 year old to drink!!! Anyway, besides the kidney level elevations, Max's blood results look awesome! He continues to have an essentially normal CBC (complete blood count - the three cell lines of his blood) and good immune function. We just maintain the close relationship with Children's to be sure we are protecting his graft from Ellee, while at the same time protecting all of his body systems.
So, as you can probably surmise from reading this, although Max is doing great and back into doing just about everything he did prior to his diagnosis, his health situation remains complicated. When people ask me, "so, how is your son doing?", I usually respond that he is doing fabulously, that he is back to being a 9 year-old boy but, that he still has a road ahead of him. We are not done with his bone marrow transplant process yet...we still need to "tie the bow on the top of the package", I say. But, we are worlds from where we were in the winter of 2009!!!
This week is a big week here in the Meyer house! It's the last week of school for Max and Alex and they are beyond excited for the festivities that accompany that! Today is Field Day at their school so, I will be up there helping the kids enjoy different games and fun activities and will join them both for lunch on the lawn. Ellee will be hanging out with my mom so that I can do what I need to help and she can relax at home. Thursday is the last day of school and our neighborhood always makes it super fun. We will greet the kids with cupcakes and water balloons at the bus stop and then they will all jump into a neighbors pool in their clothes and swim the evening away! It is always a highlight of the year that all of the kids look forward to and a great way to start the summer.
We have been very busy around here the past few months. I was swamped with the Clubs & Clowns event that we had for Max's Meals the first weekend in May and really have spent the rest of the month recovering and writing thank you notes to all of the amazing supporters that we had for the event. It was highly successful and fun and well worth all the effort that we put into it as we raised nearly $7,000!!! We also received our first grant from the Cincinnati Golfers for Charity last week so, we are off and running on our next big step with Max's Meals which is to offer the inpatient families birthday meals. You can learn lots more about what is going on with Max's Meals by visiting our website at http://www.maxsmeals.org/ anytime! We also spent lots of time on different sports over the past few months. Alex played baseball, soccer and basketball this spring and Max played flag football so, we have been busy running between practices and games, just like most families with kids our ages.
As the school year wraps up for us around here, we are again reflecting on everything that has happened in our lives the past few years. It is absolutely amazing...miraculous, in fact...to see how far Max has come. Our life perspective is so changed for the better. We do not take a single moment for granted. We realize what a gift it is to take part in everyday activities, like swimming, jumping off a diving board, having a cook-out with people you love. Not a moment goes by that we aren't grateful for our many, many blessings. We are all on cloud 9 with life right now and won't be down from it anytime soon!
Thanks for checking in on us!
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)