Day +140: Heading in the Right Direction & Trying to Beat the Boredom!

Today is day +140 and, like most days lately, we are having an uneventful day. We are definitely in another transition period. Max finished up his summer tutoring Monday and probably will not begin his home schooling for the year for a few weeks yet. Without tutoring on Mondays, Wednesdays and usually one other time a week, things are pretty quiet around here.

Our visit down to the Day Hospital last Friday was filled was great news. Dr. Davies was there and we had not been able to see her for about three weeks so, we had lots to catch up on with her and many questions to ask her. Both Max and I were on cloud nine with her updates and responses. Essentially, she said that although Max still has quite a way to go in re-building his immune system, he is doing well at this point. His labs that are taken weekly to measure the level of several viruses in his body (the Cytolomegalovirus (CMV) that we had been fighting for several weeks post transplant in particular), look great and as a result, we are going to be able to discontinue the infusion of the Cytogam medication that Max has been getting every other week to fight the CMV. This means that we are now down to once every other week visits to the hospital! Incredible news! In addition, we asked her about the possibility of attending the NBA All Star game on February 14th in Dallas, TX (Max's Wish) and she does not think that will be a problem! Finally, we have been considering taking the plunge back into dog ownership so, I asked Dr. Davies if it would be ok if we got a puppy...and she said it would be fine! So, we have been searching petfinder.com ever since and have found a little guy that we are planning to adopt on September 9th! He is a border collie/australian shepherd mix and is currently only a month and 4 days old. He was taken to the shelter with 10 brothers and sisters and his mom on the day he was born and, thankfully, this organization called Rescue Our Shelter Animals, swooped in and took them all in to a foster home so that they would make it. A typical shelter can’t handle that many puppies so, they likely would not have made it. We are beyond excited to add a new member to our family and are anxiously anticipating being able to bring him home at 8 weeks old! I know that it will be a lot of work for me, in particular but, I also know how much joy he is going to bring to the kids and to all of us. Max has been asking for a dog for some time now but, with everything going on, we were definitely not ready. However, I can’t think of a better time to do this than now. We still miss our Curbie who we sadly had to put down two weeks after Ellee was born because of lymphoma but, I think we are now ready to take on dog ownership again. The fact that we are home here 99% of the time will be a huge help in getting him trained and I am excited that he will keep the kids getting up and out for walks, etc as the weather starts to turn yuckier this fall and winter. Max and Alex can’t wait to teach him how to fetch and play Frisbee, etc. It’s going to be such a “pick me up” for all of us.

That is our big news for the week and there‘s lots of it! Some exciting things going on around here…and yet, we are struggling to find ways to beat the boredom more and more. As we get close to 8 months of isolation for Max, the same old, same old around here is starting to set in. Yesterday while I was taking a quick shower, the kids decided to cuddle up in our bed together, build a pillow fort and then try on Matt and I’s shoes (as you can see from the pictures). They are definitely getting creative all on their own! We have also tried to get creative in finding ways to get out a bit but, it is tough. We still have to be extremely careful about sun exposure for Max and, of course, germ exposure. Obviously, that is very limiting and makes it challenging to find things we can do. We have spent lots of time with Aunt Molly and Aunt Monica and the kid’s cousins at their houses which has been wonderful but, they will all be back in school as of next week so we won’t be able to do much of that, unfortunately. We are all going to miss seeing all of them so much. We have been taking some wooded hikes here and there and have gone to hit golf balls late in the afternoon when the sun isn’t so intense. We went fishing with Matt’s dad, Aunt Molly and cousins Andrew and Jacob last Thursday which was fun (see picture). We stayed in a shady area and it was a bit cooler so Max could take part as well. However, we do struggle with Max’s comfort level with getting out. When I finally come up with something we can do and we get there, Max lasts about 15 to 20 minutes and then he is typically ready to go home. I can’t blame him…when we are outside he has to wear his mask which can be hot and definitely awards him some strange glances from people. And, as a result of my paranoia, I think I have made him worried about the sun and germs. So, generally, he is just ready to go home and relax shortly after getting out somewhere. He just wants to be comfortable again. I’m just going to keep pushing him a little bit so that hopefully, before long, he will again be fine with getting out.

Alex and Ellee have been quite the opposite when we do venture out. They are obviously thrilled to be doing something and to be outside the walls of our house! I took all three of them to the park on Sunday evening with some ice cream after dinner because Matt had a meeting up at church and Alex and Ellee had a ball. They held hands and walked together down a little path and were singing and laughing. It made me realize how patient and wonderful the two of them have been through all of this too. Not once has any of them complained about the situation. They have all endured the isolation like champs. I know they are all relatively young and that, given their ages, it probably isn’t a surprise how well they have all done. I agree that their age is a factor that has definitely made things easier but, I’m here to tell you that it is not easy and not normal for a child to be kept from exploring the world and all it has to offer…at any age! I am so proud of my kids for handling this whole situation the way that they have and for supporting each other like they have. I know that it is going to have a long lasting effect on their relationships with each other and their passion for what the world does have to offer. I can’t wait for the day when we can get up in the morning and say, “what do you want to do today guys?”…and then go do it! Whatever it is, without hesitation or worry! I know that they will LOVE that new found freedom again and that we will all experience so much joy in just doing the “normal” things.

As the fall approaches and school starts around here again, we are working on pulling some plans together to keep everybody occupied. Max will be getting 5 hours of home schooling from the district but it has not been finalized yet so, we aren’t sure when that will be taking place. I am also setting up some guitar lessons for him and have taken a church friend up on an offer to come and work on art with him once or twice a month. I am hoping that all of these activities, along with the new puppy, will keep him somewhat busy and help him beat the boredom. Alex will be starting pre-school in about a month and will be there on Monday, Tuesday and Wednesday afternoons. He seems to be fine with returning although I think when it comes down to it, he will be a bit apprehensive and need to re-adjust for sure. It’s been a while again since he was there and we have spent LOTS of time together so, he will probably have a bit of separation anxiety to deal with again. All to be expected given this situation. I am sure that we will work through it and he will enjoy his time at school. I remain nervous about the idea of him being exposed to so many germs there but, I am going to take things as they come and deal with them as it happens…and try not to worry! I am hoping to get some special times lined up with Ellee each week as well. She has shown us that she loves socializing and is definitely missing it right now. I am going to try to take her to story time at our favorite book store in town or the library each week and let her get out a bit and see some other kids her age.

I have been told by several people lately that they find my blog to be inspirational. I am so flattered by this as it was not at all my intention when I began writing it. I just wanted to be able to get information about what was going on with Max to lots of loving people that wanted to know. However, the blog has become so much more to me as time has gone on. It is like a live journal for me…something that lets me reflect on our situation and pour out my thoughts so that I can capture them forever. It helps me to sort through everything that has been going on and to get the jumbled thoughts in my head down into something coherent and comprehensible. I read it back to myself several times - usually once or twice before I send it and then a few times in the days that follow. I think it really helps me to let it all sink in. Sometimes it is very hard to believe that this is our life these days, that this has really happened to Max and to our family. Like people say, you never think it will happen to you. In addition to all this, the blog has given us a gift that I know we will treasure forever. It has allowed us to document this entire experience and all the emotions and thoughts that have gone along with it. I look forward to days in the future when we will sit down and read through it together and share it with the kids friends, spouses and children. I know it will be an everlasting family treasure. Finally, when people tell me that they have been inspired by the blog, I am just elated. That is a complete gift - to know that people are being affected in a positive way by Max’s story. Going through all this has taught us things that I’m not sure we would ever have learned in any other way, at least not as quickly and profoundly. If I can translate those learnings to others without having them have to endure what Max has, that would be amazing. And if we can inspire just 10% of you to take action in some way as a result of Max’s story, we WILL save lives and make changes in the world. That is inspiring to me!

Thank you all for your continued support, thoughts, prayers and love. We look forward to the day when we can all celebrate life and this beautiful story of rebirth together.

More soon….

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