Day +215: Skate Parks, Halloween Fun and Still No Shots!

It's day +215 for Max and he continues to progress well through the lengthy BMT recovery process. I apologize for the lack of an update for almost two weeks now! As I'm sure you can imagine, things are crazy around here and I find myself unable to accomplish much of anything these days! I sit down to type up an update and get interrupted by some little person at least 5 times in the first 5 minutes so, it just becomes impossible! Anyhow, I'm glad to be finally getting around to it. This blog is a HUGE help for me and I have missed pouring out my thoughts in it for all of you to read. It is somewhat of a lifeline for me right now. Things have definitely gotten tougher again lately, just in a different way than they were before.

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.

More soon…

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