Sunday, November 8, 2009
Day +221: A Blob Invasion!
Today was day +221 for Max and all remains well. We have had a busy past few days so I thought I'd do an update tonight and let you all in on what's been going on.
We had a LOT of excitement on Wednesday afternoon when the Xavier University Blue Blob showed up in our front yard! The kids were quite surprised. Matt's Aunt Mary Ann brought them all new XU t-shirts so we had tricked them into putting them on before the Blob arrived, just telling them we wanted to take some pictures of them all together with their XU shirts on. They had looks of real shock on their faces as they came out the front door to see the Blob standing there! They all got to meet "it" individually and "it" presented Max with a special gift - a mini stuffed Blob. The kids then proceeded to play a great game of keep away with the Blob for about a half an hour. "It" has a really long tongue which Ellee got a big kick out of especially. She also did a couple of other really funny things. At one point, she went up to the Blob and touched "its" shoes, looked up at "it" and said, "I like your shoes." A few minutes later, she said, "I love the Blue Blob...Go Bengals!" We all got a good kick out of that! Overall, the kids had a wonderful visit with the Blob and it really brightened our day. About an hour after "it" left, Max said to me, "that was really cool having the Blob come here to visit!" Thanks, Mary Ann and the Blue Blob!
On Thursday afternoon, a reporter and photographer from the Cincinnati Enquirer came to the house to get info for their article on Max and the Skyping with his class. To my surprise, they were here for about an hour and a half! They observed Max on Skype with a classmate and then asked us lots of questions. We are hoping the article will show up in the paper soon. I'll be sure to post a link to it if I can, once it's published.
Friday was our scheduled visit to the Day Hospital for Max's bi-weekly medication infusion. It went well. Ellee's little marrow garden is blooming some good cells for Max and continues to grow and flourish within his little bones. His counts (white, red and platelets) have remained very stable for over two months now. While his white and red cells are still just below normal levels, his platelets have been outstanding at a higher than normal count! This has continued to be great news because Dr. Davies reminds me constantly that the platelets are the true indication of the engraftment. They are the last cells to come from the new marrow and the first to go if something is wrong so the fact that they have remained strong and steady has been continually comforting for Matt and I. Conversely, Max's engraftment percentage (the percent of cells being produced by Ellee's marrow vs. the small bit of his that remains) has waivered a bit over the past several weeks. He is currently at 92.8% again, where about 6 weeks ago he had been back up at 99%. The level of immune suppression medication in his body definitely seems to be linked with these fluctuations so, our Nurse Practitioner was going to follow up with Dr. Davies (who was stuck in an airport on Friday and unable to see us) to see if she wants to adjust anything as a result of his current decrease.
Other than that on Friday, we did discuss Alex's potential return to school with Dr. Joshi (one of the BMT outpatient docs that we have seen regularly) and our Nurse Practitioner, Paula. They had some reservations about Alex returning anytime soon, primarily due to the swine flu and some of the other germs that we have heard have been circulating at the preschool (ie chicken pox, strep, etc). They are going to talk about it with Dr. Davies and let me know her thoughts soon. We are trying to decide whether we should pay tuition again for Alex next semester or not. We would definitely like to send him for some part of this year as he will start Kindergarten in the fall and that will be a big change for him if he doesn't get to go to preschool at all this year. I am not at all concerned about him academically and really not even socially. It's more that I need him to be comfortable with being away from me and home again. I know it is going to be a rather large re-adjustment for him.
Saturday morning was busy too with shots all around! Spud had a trip to the vet for his last set of doggy vaccinations and then Matt, Alex, Ellee and I headed over to Norwood for our H1N1 shots. It went off without a hitch and we all got our stick. I must say that the Norwood Health Department deserves a round of applause for the way they handled the clinic. We were in and out of there within 10 minutes and the majority of the time was spent filling out the required release form. I don't know why every clinic in this country couldn't be run this way! They just took appointments for the number of vaccines they had and then we all showed up at our designated time, got them and went on our way. On the shot note, the hospital still does not have any doses for patients! They were barely able to offer the vaccine to all their employees last week. They don't know when they will get it for the patients yet and we are still anxious for it so that Max will have some level of protection within his own body...although we are extremely relieved that the four of us closest to him are on our way to being protected now. Alex and Ellee will need another shot in about a month (hopefully it will be easier to find by them) to round out their immunity to the virus but Matt and I should be all set in about a week to 10 days.
After that busy morning of shots (which no one liked, of course), we had a nice evening last night. Matt and Alex had seats on the floor for XU's exhibition game from a nice friend of ours at church that works for XU (thanks, Greg!). Of course they enjoyed the game and the wonderful view of the players. I didn't want Max to be disappointed that he wasn't able to go so, my mom and I planned a fun night for Max, as well as Ellee. My dad rented Indiana Jones for he and Max to have a special one-on-one movie night together. Since they are both high energy people and not much into sitting and watching entire movies, they fast forwarded to all the good parts and then played basketball in the basement which watching the UC football game. My mom and I took Ellee out to dinner and then to a local children's book store. She LOVED it! It was so cute to see her in the bookstore, enjoying just being somewhere different and all the new things to see. She was pulling books and toys off of shelves left and right. We came home with the Fancy Nancy Splendiferous Christmas book which she has enjoyed immensely today, as well as a few other books for the boys and some for all of us to read together. It was really nice to get out a bit and have a "girls night" of a different sort.
As you can see, the past few days have been busy and filled with fun and mainly good news. Unfortunately, we do have a couple of things causing us a bit of stress right now. Over the past three weeks, Matt has experienced some serious stomach pain three different times which has kept him up half the night, unable to sleep or get comfortable at all. After the second time it happened, I convinced him to go to the doctor and get it checked out. About a week ago, he had a cat scan as the doctor was concerned that maybe something was up with his appendix. However, his cat scan came back normal. Then, last Thursday night he experienced the same pain again with his stomach so, he went back to see the doctor on Friday. The doc now suspects that it may be gallbladder attacks so, he did some bloodwork on Friday and Matt is having an ultrasound tomorrow. We are actually hoping that they find some gallstones as we have learned that they will quickly remove the gallbladder then, which should stop the pain. If they don't, Matt may have to go through some additional testing to determine what is going on. We are hoping to know more tomorrow and promise to keep you all posted. We haven't put anything out on the blog about this yet because we don't want anyone to be alarmed or concerned. We are hoping and praying that it will all turn out to be relatively minor and be able to be rectified quickly and easily.
To add to the fun around here, our garage door opener broke on Friday so it won't go up and down at all without significant intervention (we can see that the spring is broken)! So, I am going to spend tomorrow morning on the phone getting quotes to have someone come out and replace/fix it. Fun! Just what I want to do right now.
Despite these issues, we are doing well overall. We have heard over and over again lately from people about how great Max is looking. People can see, just by looking at pictures of him on the blog, what we see everyday. He is getting better! His eyes have a sparkle and clarity in them again that was missing for some time. They are a beautiful shade of green and they just look gorgeous these days. His hair is adorable. The little curls and wave that came with it when it came back is so cute. We don't know if it will stay as Dr. Davies calls it "Cyclosporine hair" (the immune suppression med he's on) but, we'll take it while it's here...it's great! To add to his cute hair and sparkly eyes, his two top front teeth fell out about a month ago. His toothless grin is darling. We are so proud of him, it's unexplainable. Everytime I look at him, I feel pride for how he has handled himself in this very difficult time. I can hardly think of a time throughout this process when he wasn't smiling, laughing and making the best of things. He is an amazing kid. I often think that I cannot wait to see the kind of adult that he is going to be, given what an incredible person he is at 7 years old! Suffice it to say that I am proud of my little boy.
Of course, we couldn't be prouder of our other two as well. Matt and I have commented several times recently on how awesome the bond between Max and Alex has become. I don't know what they would have done without each other throughout this experience. Alex is absolutely devoted to his brother and the two of them have become inseperable. They sleep together, eat together, get dressed together, play everything together, even go to the bathroom together! Yesterday, Max wanted to play basketball in the morning and Alex had gone down with him to play. I overheard their conversation and heard Max remind Alex that he had to go get his shot soon. After a few minutes, Alex came upstairs and was moping around quite a bit. I quickly realized that he was very apprehensive, understandably, about the shot. Max would not play basketball without him and came upstairs to sit next to him and try to allay his fears. It was a parents dream to see the two of them interacting. Max was doing everything he could to try to make Alex feel better. He had even prayed the night before that the shots wouldn't hurt for all of us. Alex has been there every second for Max throughout this ordeal and Max knows it. He knows that Alex would do anything for him...anything. That's exactly the kind of brother that Alex is. The bond that has now formed between the two of them is priceless.
Ellee is our little miracle, as you all know. We felt very blessed just to have her in our lives before we even knew that she would save Max. She keeps all of us laughing and loving around here everyday. She is a big cuddler and kisser and is regularly heard saying, "come and snuggle me on the couch" to one of us. The boys love her and watch over her already. They treat her with a special sweetness.
Spud is really fitting right in around here now too. He still has his wild puppy moments, of course, but overall he is finding his place here and bringing us lots of joy. The kids love to play ball with him and to pet him and cuddle with him when he gets a bit tired. One day last week, all three of them were petting him and Max said, "We love you Spuddy. You're the best dog ever."
Things are good around the Meyer house. Challenging, but good. The love is flowing. The bonds are deepening. Lots of good things are coming from this experience.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)