Day +117: Celebrating Life, Gardening and The Reds

Today is day +117 and we are looking forward to a fun week ahead! It’s Matt’s birthday today so we are planning a lunchtime celebration with him at a park somewhere in town. We are making the most of every opportunity to celebrate life together as a family! This will be our third celebration of Matt’s birthday so far! Last night we celebrated with Matt’s family at his mom’s house and the boys had a ball playing with their cousins, Will and Ben. Max was exhausted from a full day of playing. He had his buddy Jack from down the street over yesterday for the first time in 7 months and they were busy playing everything around here and catching up! He woke up twice during the night with super sore ankles…poor buddy. His legs are still trying to adjust back to the activity level of a 7 year-old! It takes some time after what he has been through.

Tomorrow we have to run down to the hospital for a brief clinic visit so that the doctors can check the level of Cyclosporine in Max’s blood. Our Nurse Practitioner, Paula, called me on Friday afternoon after our visit to the Day Hospital to tell me that Max’s Cyclosporine level had dropped substantially and that Dr. Davies wanted to increase his dose as a result. In talking to her, I realized that I had made a little mistake last week. In an effort to save some dishwasher space, I had started putting Max’s Cyclosporine, which he drinks in apple juice, in a paper cup. Unfortunately, the paper absorbed some of the medicine, thus leading to the low level in Max’s blood. So, we agreed to up the dose a bit and go back to the glass cups. Poor Maxer had a headache and a bit of high blood pressure on Saturday from the sudden re-increase in dosage. Luckily, he adjusted again by Sunday and has been feeling fine since, except for the sore ankles! This situation reminded me what a fine balance this whole process is and how easily it can be knocked off course.

After our quick visit to the hospital tomorrow, we are planning to head up to West Chester to spend the day playing with Aunt Molly and cousins Andrew and Jacob. The boys haven’t seen each other in a couple of weeks now so, they are looking forward to playing. We are going to spend our Thursday at the Day Hospital this week instead of Friday because Max is scheduled for two infusions of medication, which makes for a long day, and Friday is a HUGE day for us! As I mentioned in the blog last week, we were called by Make A Wish to attend batting practice with the Reds on Friday and are really looking forward to it. We were not sure whether we were going to be able to attend the game after the batting practice, however, because the seats are in the general seating area and we were figuring that Dr. Davies would not approve of exposing Max to that many people yet. Thanks to the wonderful company that I have been working for the last 13 years, we are going to be able to attend the game! A friend of mine at GE that manages the GE box at the Reds games and has been following the blog, called last week to see if I thought we would be able to attend the game if we had box seats. I had tears in my eyes and chills as I listened to her message and was so touched at the generosity and thoughtfulness of the offer. I have always known that GE was a great company to work for, filled with amazing people, but throughout this ordeal with Max it has been proven again and again. They have been so supportive of our family and have been rooting us on endlessly throughout this marathon. This is just another example of that support. When I told Max about the offer, he said, “GE would do that for us?” Then on Friday as we were leaving the hospital after clearing the whole event with Dr. Davies, he said, “Mom, Friday is going to be the best day of my life!” We are all anticipating a wonderful, fun time. Thanks to the box seats, some of our family and friends are going to be able to join us for the game too. Look for tons of pictures next week!

Max’s appointment at the Day Hospital on Friday was filled with mixed news. While his blood counts look good for this point in the BMT process (although they are extremely low due to the immaturity of Ellee’s marrow in his body and the immune suppression medication), his engraftment has been falling the last few weeks and is at its lowest level yet of 84.4%. Matt and I were definitely concerned about this latest development and had lots of questions prepared for Dr. Davies. She reassured me that she believes the graft of Ellee’s marrow in Max’s body is strong and that things are where she would like them to be at this point. She told me that she was not worried if Max ends up with a mixed chimerism (ie the make-up of his bone marrow) between that of his old marrow and Ellee’s. This was news to us, as was the fact that she will likely keep Max on the Cyclosporine for a full year. I learned a lot about Aplastic Anemia at the recent conference I attended and I understand her reasoning for continuing the Cyclosporine. She is trying to prevent the t-cells that remain from Max’s old immune system from attacking Ellee’s new marrow and causing the same auto-immune system issue that Max started with. The longer that she keeps those t-cells suppressed, the stronger Ellee’s new marrow will be and the better chance it will have of fighting off their attack. It’s all so complicated and not an exact process! We just take things as they come and hope and pray for the best for Max. We were reminded of Dr. Davies’ analogy of the BMT process to gardening. At this point, we have planted the seeds and they are growing but, there is an attack of yucky beetles on the horizon so we want to keep them away with some kind of pesticide. We just have to wait it out and be patient…just as gardeners are. We know that with time, Max and Ellee’s little garden is going to take root permanently and blossom into a fully functioning, beautiful garden full of healthy blood cells!

We still take things one day at a time in this marathon journey and we definitely still have our ups and downs. But, as we continue on, we see the beauty and the positives that have come out of this and continue to come out of it more and more. I thought you would all enjoy the video I have uploaded of Max and Ellee at the following link: http://www.youtube.com/watch?v=MFF3aMYZMp8. She just couldn’t stop kissing him. Although I don’t have it on tape yet, Alex is equally enthralled and passionate about his love for Max. He hates to be separated from him and has slept with him every night since this journey began. There is no doubt that this experience has taught us all so much about life and bonded us in a way that nothing else ever could. For that, I am eternally grateful.

As always, thank you for your continued thoughts, prayers and support. More to come soon…especially pictures and fun from the Reds outing on Friday!

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