Day +75 (WOW!) and all is well. I guess when things are going well, I tend to go a long time without updating the blog...sorry! We've had a relatively busy and fun week. A few ups and downs along the way but overall a good week again. We are really starting to figure out some things that we can do and are enjoying being outside a lot in the shade and on overcast days. It certainly helps that it is summer and that we can be outdoors. I don't worry so much about the germs that way. The pictures are from some of this creative outdoor fun...first one is of the kids all in some basketball jerseys getting ready to go swinging and the second two are of a little popsicle party we had in the garage one afternoon.
Max has played quite a bit with one of his best buddies, Raad, our neighbor from down the street. Raad is 12 and is such a darling and cool kid. He, Max and Alex have a ball together. Raad's mom has been super about being sure that Raad is healthy and he is wonderful about washing his hands the second he gets here and taking his shoes off at the door (those are our two rules for entry into the house). Because Raad is a bit older too, we don't have to worry quite as much about germs since older kids tend not to pick everything up. So, Max and Alex have really enjoyed having Raad over a couple of times lately and are looking forward to spending more time with him soon.
Max started tutoring with his teacher last Wednesday and has been enjoying it so far. I can't tell you how great it has felt to have him working on school work again. The tiny bit of "normalcy" that it has brought into the house is really refreshing. It gives us all some time away from the tv and video games and allows us to think about the future a little bit. It makes me feel like Max is getting back on track and taking steps toward his future life with all this behind him and that feels amazing!
We had another small milestone this week...believe it or not, Matt and I got out on Saturday night together, just the two of us! It's been a long time! We went to church together (which hadn't happened since Ash Wednesday) and then went out to dinner! It was quite a treat. Gaga (Matt's mom) took the kids while we were out and they enjoyed their evening going through the Wendy's drive thru and swinging in the backyard. Sunday morning Aunt Sarah and "Uncle" Ryan came over for a visit and the kids had a ball playing with them. "Uncle" Ryan can hang quite well with the boys on Playstation 3 and they both give them a run for their money on the basement basketball court. Ellee loves playing with Aunt Sarah too. We also visited with my mom and dad this weekend and saw Aunt Kimmy and cousin Audrey today. So, we are keeping busy with our families and it really helps to have the company!
Although things overall are going well, we all continue to have our share of challenges and ups and downs along this journey. Our nurse practitioner called me last Tuesday after our visit to the hospital that morning to say that Max's ANC was down to 1300 again. This wasn't terrible but, was quite a bit lower than it had been again and caused me some concern. In addition, his CMV (the virus we have been battling post transplant) level was rising again. I spent Tuesday, Wednesday and Thursday worrying about those two levels and even losing some sleep! Then on Thursday morning, she called again to say that his engraftment level had fallen a bit to 96.8%. This is a measure of the percentage of blood cells that are being produced by Ellee's marrow in Max's body. His levels had been in the 98 and 99% range since the transplant so, again, I was concerned and lost more sleep over things Thursday night...even though I told myself not to worry! Of course, when we went to the hospital on Friday morning for our Day Hospital visit and actually got to talk to Dr. Davies, none of it was an issue! His ANC had risen back up to 1500 all on its own, his CMV had fallen back down and Dr. Davies looked me right in the eyes and said "an engraftment level of 96.8% is great!" All that worry for naught!!!! And I just knew it would be. But, Dr. Davies again proved how wonderful she is. I told her that I had been worrying over all this and she responded that it is my job as Max's mom to worry about him, especially in this situation. So, despite the fact that it has happened over and over again, I am going to continue to worry about him for no good reason...that is just what we mothers do! :)
Obviously, Max is doing very well overall. His numbers are good, he looks good, he feels good, his energy is increasing daily, his medicines are decreasing slowly, his hair is coming in on the top of his head (as well as many other places, thanks to the cyclosporine) and he is acting more and more like his old self all the time. It does Matt and I's hearts so good to see him act goofy at the dinner table or to hear him giggling about someone tuting or something like that. It's our Max coming back again more and more all the time and it is amazing to witness his transformation along this journey. The main challenge for Max now remains the more psychological and social aspect. He is dying to play with friends everyday! That's what he loves. He totally understands why he can't but, he still wants to do it...right now. We are doing our best to manage this with a small group. Essentially, we are only letting him play with his cousins (Andrew, Jacob, Will and Ben and Audrey, but she is really more of Ellee's playmate at only 2) and Raad. He loves all of these kids so, he is fine with narrowing things down like this but, he would like them to be here everyday, all day long or whenever he snaps his fingers and wants to play with someone. Obviously, that can't happen. They all have busy lives and full summers, like most 7, 8, 9 and 12 year olds. So, we are working with Aunt Molly, Aunt Monica and Raad's family to plan playdates whenever possible. He just loves it and everytime someone comes over he tells me, "mom, that just made my day!"
We are anxiously awaiting the homecoming of my brother, Patrick too. Max and Alex are absolute fans of fun, crazy, spontaneous Uncle Patrick so they can't wait to see him. He has been in the Bahamas for almost two years now and we haven't seen him in probably almost a year, at least! I can't remember right now how long it's been...a long time anyway. He is due home sometime later this month and that will be a real treat for the boys, as well as Uncle Patrick who has really been missing seeing them, especially given all that's gone on the last few months.
That's about it for things around the Meyer homestead. It's been a long journey to day +75 and we still have a long way to go but, things are going just about as well as they could be, I would say. We continue to thank all of you for your love, support and caring interest in Max and how all of us are doing in this marathon. We are beginning to sense the finish line ever so slightly and the taste of having this all behind us, however we know that we still have an enormous stretch of mileage before us. We still feel you all rooting us on and it really does make all the difference. Thanks.
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)