Wednesday, September 16, 2009

Day +167: Keeping Things Interesting

Today is day +167 and I can truly say that Max has been keeping things interesting for us throughout this process. Yesterday we headed down to the hospital again because Max began coming down with some unusual spots on his legs as of last Saturday night. They were about dime-sized, clear, raised, fluid filled bumps, for lack of a better explanation and he went from having one on Saturday night to four by yesterday. Dr. Joshi (one of the other BMT docs that has been our primary outpatient doctor, along with Dr. Davies) and our nurse practitioner, Paula, had to break the bumps open and culture them, including using a little needle on one of them so, that was lots of fun for Max! He made it through like a champ, as usual. They are unsure what we are dealing with now but are suspecting some kind of bacterial skin infection - they mentioned the possibility of Impetigo, potentially caused by either a regular staff that lives on the skin or MRSA (methicillin-resistant staph other words, medication resistant staff...common in hospitals). we go again! As the doctor and nurse said, Max is keeping things interesting. While this hopefully will become another relatively minor bump in the marathon-long road of the BMT process, it is once again concerning and worrisome. We have already started a new oral antibiotic, Keflax, that should help clear the bumps up if they are Impetigo caused by a non-medication resistant bacteria but, if the Impetigo has been caused by MRSA, we will need a stronger antibiotic that can wreak havoc on the digestive system...ugh! We are also applying antibiotic cream to the bumps at least three times a day. Keeping me busy! We are hoping to have some results from the cultures that they collected yesterday by tomorrow and I'll let you all know as soon as I know. Of course, Impetigo is contagious too so, I am doing my best to protect the rest of us around here by washing my hands even more and wiping down everything even more often. It's a constant battle of one sort or another! Max's weakened immune system makes it much more likely that he could have this problem but it doesn't preclude the rest of us from getting it too. The biggest concern with Impetigo is that it could migrate into the blood stream and cause much larger problems. My hope is that, if this is what it is, we have caught it very early and that things will be stopped long before that could happen but, we'd appreciate any prayers you can provide for that outcome too.

We were down at the hospital last Friday as well for our scheduled Day Hospital visit and got all good news while we were there. Max's blood levels all look relatively good, although his red and white cells continue to be below normal. My brother, Patrick, went with us for our visit, as did Alex. Uncle Patrick was in the Bahamas while Max was hospitalized and wasn't able to get home to visit him during that time so this was an opportunity for him to experience a bit of what BMT Unit hospital life is like. He got a small taste of it (we were only there 3 1/2 hours) and got to meet a few of the doctors and nurses that we have come to know so well. The pictures are from our visit last Friday too...Alex was tired so he snuggled up with Max in the tiny little bed-chair for a bit...pretty cute!

The best news that we received recently came yesterday from our Nurse Practitioner. As of last Friday when the blood sample was drawn, Max was 99% engrafted with Ellee's marrow! This is such wonderful and relieving news to all of us. It means that Ellee is winning the little tug-of-war that was waging inside Max over the past few months between his remaining cells and hers! And, it proves that Dr. Davies was right...not that we doubted her. She had said all along that we just had to find the right balance with his Cyclosporine (immune suppressant) level so that Ellee's marrow could grow and take over without allowing Max's remaining cells to gain any strength. It appears we have found that right balance and things are progressing well within Max's body. Now we just need to find a way to stop him from encountering any more germs so that we don't have to deal with these other little challenges either!

Besides this excitement, things have been fairly quiet around here. Spud is settling in nicely and we are all enjoying him. He seems to be a pretty smart little guy and is getting the hang of the housebreaking more each day. He learned how to go in and out of our dog door the other night and has been letting himself in and out as needed to go potty...although not every time, unfortunately! He is a very sweet little pup and is bringing lots of joy to all of us. He is accomplishing just what I hoped for with the boys too...he is getting them up and off the couch and playing outside lots as well. The video games have hardly been on this past week and a half!

We are continually amazed at our Max's Mighty Mob team progress! At the moment, we are the leading fundraising team with Aunt Sarah Meyer topping the charts in individual fundraising for the entire walk! We have 46 people signed up to walk, including several of my family members that are coming down from Cleveland to join us in the walk...and many of you have told me that you plan to walk and just haven't signed up yet! What an awesome show of support for Max and for the fabulous hospital that has helped save his life. We cannot tell you all how thankful we are for this opportunity to show Dr. Davies and her entire team how much we appreciate them and what they have done for all of us. They are true heroes and deserve to be told that. Unfortunately, it looks like Max may not be able to join us for the walk. When we asked Dr. Davies on Friday, she didn't like the idea, saying that there were just too many people and thus, too much potential for germ exposure. But, I'm going to revisit it with her one more time at our next visit just to be sure it wouldn't work if he stayed in a stroller with a plastic cover over it and had his mask on. Either way, we will make the best of the situation and honor "Max the Magnificent" and his fantastic fight as the Mighty Mob takes to the sidewalks of Coney Island! If he can't be there, we'll take tons of pictures to be sure he knows how much people did for him. He already knows about the team and our current spot in the fundraising effort and he is quite impressed!

On another note, we are switching gears with regard to Max's Wish from the Make A Wish Foundation. We heard from them about two weeks ago as they had begun planning out Max's trip to the NBA All Star game and ran into some trouble. When they spoke to their national office about the game, they found out that the NBA can only accomodate 4 Wish Kids a year at the All Star game. Thus, Max would be unable to go for 3 years!!! He was very disappointed, to say the least, saying that his favorite players would be retired by that point! So, after talking everything through for about a week, he decided to ask to go to Disney instead. We are thrilled with this idea, of course, as we know it will be an incredible family experience and we feel that Alex and Ellee really deserved some special treatment as well. This has definitely been no picnic for the two of them either! We don't know yet when we will be able to make our trip but are hopeful that maybe we can go this spring. We are planning to talk to Dr. Davies about it more at our next appointment. It will definitely be a trip that we look forward to and I'm sure it will be one that we remember forever.

I went to a parent-teacher coffee today at Alex's school and before it started, his teacher asked me if I would briefly explain our situation to the other parents so that they would understand why Alex was not yet in school, in case their child came home talking about this "missing Alex." I have to say that it was weird. I didn't know one other person in this room and it felt like the most out-of-body experience I have had yet in this journey. I just spent about 30 seconds talking about it and I could see the somewhat shocked look on the other parent's faces. I could just imagine them wondering why it happened and thinking how awful it must have been, etc. I've reflected on these brief moments a little bit today and I just keep thinking that this is just our life now. It's just part of who we are and what we have to do. We receive lots of complements from people about how well Matt and I have handled this situation and how we have turned a crisis into a positive. Of course, we are honored to hear those kinds of things and appreciate those comments but, we both have somewhat of a hard time hearing them too. We have just done what we have had to do and have tried to make the best of it. We have been blessed to be surrounded by people in our lives that have taught us to handle things this way. Our belief is that Max is the real hero here. He has handled all of this with an incredible, upbeat attitude and a maturity well beyond his years. I was recently told by a cousin of Matt's who met one of the BMT residents that worked with Max that they call him "Amazing Max." She told Matt's cousin that every time that the doctors went in to see Max while he was in the BMT Unit, he had an amazing attitude and they would leave in awe of him. We like to think of him as Magnificent but, Amazing works too. :)

It's tough seeing your little boy endure something like this, to say the least, and we are tired. It's been a long road and we still have a ways to go before we reach the finish line. We're tired of worrying, of medicine, of hospital visits, of germs, of hand sanitizer, of being confined at home, of missing out on fun things, of not being able to go on vacations or to school or even to the grocery store or church together....but, we are so, so, so grateful. Every minute of every day we are grateful for our many blessings. Our three beautiful children, our adorable new puppy, our comfy house, our marriage, our families, our friends, our church, the constant support and love we have felt throughout this process and still feel now, the list goes on and on. Life is good...and we are making the very best of it and will continue to do so everyday for the rest of it!

Peace and love,

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


  1. Kristi, Matt and family:
    I continue to check the blog and pray for all of you. Hope Max enjoyed the cookies!
    Kristin (Clark) Berger

  2. "Is Max allowed to play with people, yet? When is he going to be cured? Will he be cured while I'm still in 2nd Grade? I really like him.

    "You are really nice Max. I'm glad you might be healthier." -Garrett


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