Wednesday, November 25, 2009
Wednesday, November 18, 2009
Max has begun ramping again with his bike and scooter, as you can see in the picture. As my neighbors can attest, this is a favorite activity for Max so, seeing him back out there flying over that ramp is fantastic!
The article about Skype was a hit with everyone. The reporter did an excellent job of writing it (I still have been unable to find a link for everybody that is out of town.) We are Skyping more and more all the time. We are now up to almost everyday. The only time we aren't doing it right now is on Friday since Max spends every other week down at the hospital still. He is enjoying it and definitely getting to know the kids in his class, as well as his teacher. My hat goes off to her - she has been teaching for 20+ years and had never used Skype before the first time with Max! Now she is finding ways to include him in lessons every day. It's wonderful!
I wanted to include a quick update on Matt too for everybody. He has gone through a couple of different tests and so far the doctor has not been able to determine what is causing his stomach discomfort. At this point, he was told to see a GI specialist if the pain returns. He has been eating very carefully and so far, he hasn't had another issue so, we are in "wait and see mode" for now. We'll keep you posted if anything changes. Thanks for your thoughts and caring words for Matt too!
A cool thing has happened a couple of times lately with Max and I wanted to share it with all of you. Just over a week ago, Matt was telling Max and Alex about the fact that Kareem Abdul-Jabbar (the famous basketball player) was diagnosed with Leukemia. Max knows that Leukemia is very similar to Aplastic Anemia so he immediately said, "Wow, kind of like me." It's amazing to see him light up when he realizes that other people, especially strong, successful athletes, can get really sick too. While he was upset for Kareem, he definitely finds some comfort in knowing that he is not alone in his struggle and that even people that are so tough can also be struck by life-threatening illness. The boys went on to discuss Kareem's situation and Max asked if he was going to need a bone marrow transplant. Matt said that he didn't think he was at this point and Max replied, "Good thing. I don't know how he'd fit in one of those beds!"
This conversation and Max's reaction reminded me of a time a few months ago when the boys learned that one of their idols, Lebron James, was being tested for cancer because of a growth in his cheek. Ultimately, Lebron was cleared but I must have heard Max talk about that situation a hundred times. He told his cousins, his grandparents, his aunts and uncles, the neighborhood kids as they passed on their bikes...everybody. I realize now what an impact that had on him to know that one of his sports idols might be seriously ill like he was.
Finally, just yesterday, Matt's cousin Drew found the following article on a kid at Princeton named Jordan Culbreath: http://sports.espn.go.com/espn/columns/story?columnist=forde_pat&id=4660411&sportCat=ncf Wow...this really hit home for all of us! To hear that he has been diagnosed with Aplastic Anemia, just like Max and how it has tremendously impacted his life was something for all of us to read about. It's an excellent article. I thought you would all enjoy it. Again, Max's eyes lit up when I told him about Jordan. Yet another idol to add to his list. He and Alex have talked about Jordan all day, even calling each other by his name as they played football with Spud today.
As difficult as this journey has been for us, I am absolutely humbled by the experiences that our fellow BMT families and friends are continuing to have. Essentially, nearly all of the families that we met while we were inpatient in the BMT unit are having significant struggles with their children's recoveries. They have been hospitalized post-BMT numerous times, some of them for weeks or even months at a time; they have undergone untold surgical procedures and other tests; they have suffered large setbacks including infections and broken bones from long-term steroid use; and, as I've told you before, some of them have endured the untimely deaths of their children. I continue to follow all of their stories, praying for them daily. It goes without saying that knowing these families and their struggles absolutely makes us appreciate the amazing blessings that have been bestowed upon us throughout this process and that continue to unfold themselves for us on a daily basis. I can't explain why we have been blessed in these ways. I can only be eternally grateful for them and offer my prayers and advocacy for those that are suffering. Thus, I'd like to ask you to include the following children and their families in your prayers: Matthew Akin, Ethan Alfred, Natalie Bradley, Brayton Martin, Preston Snead and Mitch Stone.
I find myself day dreaming about the future quite a bit lately. It is hard to imagine a day when this experience is just a part of our lives, something in the distant past, but that's what we live for every single day. We hope and pray that Max will fully recover and be cured of his disease, going on to live a long and wonderful life. I know that we will need to baby step back to reality, as we are far removed from it at the moment. And, I also know that being removed from reality has had its advantages. As tough as things can be around here on a daily basis, trying to keep everyone happy and entertained while essentially being stuck here at home, I try to take time everyday to realize how precious this time is...how precious every day is. This is the greatest lesson we have learned - live in the moment, appreciating those you love and making sure they know it.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Sunday, November 15, 2009
Sunday, November 8, 2009
Wednesday, November 4, 2009
Monday, November 2, 2009
You've all heard me say that the swine flu has made things extra challenging for us before and that has not changed a bit. If anything, things have gotten more challenging lately, primarily as a result of H1N1 circulating around Cincinnati and Anderson Township. We have still been unable to obtain the vaccine for any of us. The hospital, as unbelieveable as this seems to everyone, still has only a very small amount and all of what they have is the live mist. They are still waiting on vaccine for the doctors and nurses, as many of them, including all of them that work on the Hematology/Oncology floor (the 5th floor where Max is treated) cannot take the live mist because they work with patients with compromised immune systems (like Max). They do not have any yet available for patients or their families. It's quite depressing and completely unbelieveable. Sorry to say it but, the government has really screwed this vaccine distribution up! They totally missed one of the highest risk populations around - kids in or being treated by hospitals!
I talked with Dr. Davies about this situation at our last visit with her (a week ago last Friday). She understands my frustration and appears equally as frustrated. She promised to let us know as soon as she knows that the vaccine is available at Children's. I explained that even though we are very isolated right now and have thus reduced our risk for contracting the virus, we are still no more than one layer removed from it. Matt has had it at his office; it has been in all of my nephew's classrooms; my neighbor’s kids have had it; I'm sure it's walking around in the grocery and other stores that I visit here and there; etc. I told her that I felt it was a matter of time before one of us caught it so the sooner we can get protected, the better. I asked that if we were able to get the vaccine somewhere else, would that be alright with her. She recommended that Matt, Alex, Ellee and I get it wherever we can but that Max wait to get it from them. She does not feel that Max is going to have a “perfect response” to the vaccine, due to his suppressed immune system and thus, it is more urgent that the rest of us get it as soon as we can and safer for Max to just go there to get it where they known how careful to be about germs and I know how to get him in and out safely.
I have heard about several vaccine clinics here in town but, they have been flooded with people and I have not wanted to venture out with Alex and Ellee to stand in line around numerous people and their germs! We are living every minute of our lives in germ-a-phobia…the last thing I want to do is go running around town, exposing them to countless people, trying to hunt down this darn shot! Not to mention that technically, none of us meet the “high priority” list for the vaccine anyway. We are not pregnant, between 6 and 24 years of age or caring for infants less than 6 months. In addition, I can’t get a hold of anyone on a phone at these clinics to find out if they have the inject able version of the vaccine either, since we can’t take the live virus mist version at all.
Alright - enough venting again! I’m not one to sit by and let situations like this get the best of me. Unfortunately, with the three little ones and Max’s compromised immune system, I just feel at a loss for how to solve this issue. Thus, I am just trying to remain patient and calm. I keep thinking that the hospital just has to get it soon…they just have to! It’s crazy.
So, you can probably see why things are a bit extra challenging again now, just in a different way, as I said earlier. Max’s health is really good at the moment, which is hugely wonderful…we just want to keep it that way! That’s what makes this time so much more difficult again. We have entered into “viral season”, as Dr. Davies calls it and without the swine flu vaccine, we are even more hostages in our own home. We are scared to venture out. I went out to run a quick errand yesterday and as I was standing in line to pay, the little girl and her mom behind me started coughing. I tried holding my breath as long as I could and just stared straight ahead, hoping that no germs would get into my mouth or nose! On Halloween night, a group of high school girls came to our front porch Trick or Treating and one of them coughed. As soon as they left, I went in and grabbed a mask and spent the rest of the night handing out candy with it on! I’m sure I scared many of the kids but, I really had no choice. I just can’t let this germ get us!
Speaking of Halloween, the kids had a great time. It was different than usual but they still enjoyed it. Max did not Trick or Treat. Dr. Davies requested that he only go to a couple of houses for a short amount of time but, he was not really interested this year anyhow so, he stayed in with me and watched through the glass door as I handed out the candy. He was very comfy, as you can see in the picture. Spud joined him on his comfy bean bag for a majority of the time and kept him company! Alex and Ellee went out with Matt for about 45 minutes and rounded up a big bunch of treats. Alex was the wild basketball player, Chris Anderson and Ellee was a bumblebee. On their return home, Ellee told me, “I went for a walk with my daddy and I hold his hand. I got lots of canny - lollipops, bubble gums and chocolates. I’m gonna eat it!” She had a ball and has not stopped talking about all the “canny” since! After Trick or Treating, all the Meyer clan came over for a little Halloween party. They definitely made our night. We enjoyed just hanging out and watching the kids have fun together.
Beyond all that, we did have another great adventure last week at Beech Acres Park. Last Wednesday we headed over to Beech Acres to check out Max’s favorite outdoor skate park and take Spud for a walk. We were lucky to hit it at a time when no one was in the skate park so, Max got out there on his scooter for the first time in probably almost a year! He LOVED it! He told me that it felt so good to him to be able to do that again. He just picked up right where he left off. It looked like he had never stopped. I was a little nervous, to say the least - watching him cruise up and down concrete ramps again was a little unnerving. But, I was thrilled to see him doing something that he loved again and enjoying it. I did pause for a minute to realize, again, what a miracle this has all been. How unexpected and yet, how amazing this journey has been this past 10 months. Knowing what he has been through and yet, seeing him out there in that skate park, on his little scooter, cruising up and down those ramps like nothing ever happened, as brave and fearless as ever, was something inspiring and incredible. We went back again on Friday and he had a great time…this time we took his bike too. He is hoping to go back again tomorrow!
Max is Skyping with his class regularly now and enjoying it. I just got a call from the Cincinnati Enquirer a bit ago and they are going to come out on Thursday while he is Skyping to talk to us and take some photos for an article they are going to do about Max and the class interaction through Skype. Pretty exciting! Max smiled ear to ear when I told him they were coming.
Life is definitely different than it was a year ago at this time. I’m not working; Max and Alex are not physically attending school; Ellee is walking and talking like crazy; Max has a central line and appointments at the Hem/Oc Day Hospital every other week; we have a crazy new puppy running around the house, tearing things up; we are not thinking of moving anymore, like we were last year; and our worries are totally different. Life is different - simpler, yet crazier and somehow, more stressful at times. I am here at home with my three little ones 95% of the time, trying to find ways to keep everybody happy and entertained. We are definitely getting creative and, at times, a bit lonely and down in the dumps. Whenever that happens, we do our best to focus on how different next year will be from right now. That makes me realize and remember that I need to cherish these moments and appreciate all this time we have to hang out together. Before we know it, everybody will be back to school and running around with their friends and I know I will somehow long for these days.
The most important thing we have learned from this experience is that all that really matters is the relationships you have in your life and the love that you share. Without a doubt, we are building incredibly strong relationships amongst our family through this time together. For that, we are forever grateful.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)