Day +104: A Weekend to Remember!

It's day +104 for Maxer and I'm just now getting to writing about the full weekend that we just had. Our day +100 celebration on Sunday was a huge hit! Max told me that it was the best party ever! We had the entire Cincy based Sherwin-Meyer clan, as you can see in the photo (minus me taking the pic) and we had a ball. The highlight of the day was Max throwing 100 water balloons at two of his uncles and his dad which soon turned into a melee of water balloons and hose squirting for all! Just about no one escaped being drenched and all of our bellies hurt from the laughter. I have a hilarious 17 minute video of the whole event but I can't seem to find a free place to upload it to share it with you all. If anyone knows of such a place, please let me know. We followed up the water fun with a dive into the 5 pound Hershey bar that one of the companies that Matt works with sent us a while back. The kids have been looking forward to eating it since it arrived and day +100 seemed like the perfect excuse! They loved topping it with marshmellow, strawberries, caramel, sprinkles, whipped cream and peanut butter and digging in. They were all on an extra chocolate induced high after dessert!

The Aplastic Anemia conference that I attended was well worth the trip, although I have to admit that I could not wait to get back home from the minute that I left the driveway. My comfort zone is definitely here with the kids and it was very difficult for me to be away, even for just 24 hours! Overall, I felt that the Aplastic Anemia & MDS International Foundation (AAMDSIF) organization did an excellent job planning and facilitating the conference but, I couldn't help feeling "out of place" the whole time. The conference was aimed at those people who are living with chronic Aplastic Anemia, in other words, they do not have a bone marrow match or do not want to undergo a bone marrow transplant for some reason (usually that they do not have a sibling match and therefore the process is much riskier) and thus are pursuing putting the disease into remission with the use of immune suppression therapy (a combination of drugs that helps the body to rebuild the bone marrow with healthy stem cells). The immune suppression therapy does work for some of them but many of them have to undergo multiple rounds before it works and then still live with the possibility that the disease will return. It's a tough way to go, to say the least and made us all the more thankful, once again, for the blessing of Ellee as a match. In summary, the following three things were my biggest take-aways from the conference:
1. We were extremely blessed to have a sibling bone marrow match and did the best possible thing for Max's future by going forward with the bone marrow transplant from Ellee, especially as quickly as we did.
2. Although Max did have the best case scenario for treatment of his disease and we are certain that this bone marrow transplant will ultimately be successful, this experience has changed him forever and we will forever be monitoring his health and keeping an extra close eye on him (ie worrying about his health) as a result.
3. Max's diagnosis is Aplastic Anemia but, now that he has had a bone marrow transplant, the support and information provided by AAMDSIF is no longer what we need. We now can find more useful information and support through the National Bone Marrow Registry's Patient Advocacy group. I had a great talk with a woman at the conference from this group and found them to be extremely helpful and brought home a ton of educational material already.

Matt and I enjoyed a wonderful time at his cousin Megan's wedding on Saturday night as well. It was great to see so many of his extended family members and everyone had such wonderful, caring words of continued support for all of us. We were especially touched when Megan and Todd offerred a special prayer for Max during their ceremony. As Megan's dad and Matt's Uncle Jim said, "it was a very happy moment but, we didn't want to forget about Max." We were both in tears that they would think of him like that and so touched that they honored him in that way and made him a part of their special day.




As you can see, we had another wonderful weekend. We also got great news last Friday at our weekly Day Hospital visit. Max is doing well enough that we no longer have to go down to the hospital on Tuesdays...only once a week visits on Fridays! We were thrilled and a bit shocked all at once! We were grateful to have today "off" and enjoyed spending some time with my sister and Audrey this morning instead of sitting in the clinic room at the hospital!




Things are continuing to progress for Max and all of us. We know that we still have quite a road ahead as Max will continue to be under close medical supervision for an entire year post his transplant and will still experience many restrictions, etc. However, when we realize how far we have come already, we know that a year from now, we will be enjoying life as a family again and looking back in astonishment at how much things have changed, once again, within such a relatively short amount of time. As always, thank you so much for your continued thoughts, prayers and support.


More soon...


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