Day +42: Counting Down the Days

Today is day +42 and Max continues to do well, thank God! His blood counts are great (approaching normal for all three major cell lines - white, red and platelets), his CMV level (the virus he has been positive for) is decreasing and his energy seems to be growing every day. Overall, he is physically doing quite well at the moment and we hope and pray everyday that this will continue until he is fully recovered. The toughest part of things now is the mental portion of this journey. Max is definitely enjoying being home but he is really missing being his normal self. He can only go outside with a mask on to filter out any mold spores or other potentially harmful airborne items and he has to be extremely careful about sun exposure as it could trigger graft vs. host disease. So, he has chosen to stay inside at this point which, as my neighbors can vouch for, is not typically Max's choice, by any means. He is an outside boy who LOVES to ride his scooter and bike and practice his tricks on his ramp out in our street. In addition, he can't have any friends his age over at this point and he is a very social fellow so, he is bumming from that as well.

However, we did get some good news from Dr. Davies last Friday at our Day Hospital visit. She told Max that he can likely have a friend over around day +60 (just 20 days away) and that he can probably go outside without a mask on around day +100! Those both perked him up! We immediately called our cousin and best buddy, Will to be sure that he has May 31st reserved for playing with Max! He was thrilled to hear about that possibility as well and the two of them are counting down the days (as well as Alex and cousin Ben, Will's brother)!

We are continuing to stay busy around the homestead. Legos and video games are a HUGE help! We do LOTS of those everyday. In addition, we continue to play at least three games of basketball in the basement each day and the boys always beat me! They are getting really good at shooting three pointers and dunking! They have really enjoyed watching the NBA playoffs and are giant fans of Lebron James and the Cavaliers. I asked them to help me make another video for the blog and of course, they wanted to make it shooting hoops (thus the attached)!

Last week Max looked in the mirror and noticed that his eyebrows were becoming a "unibrow". This is common with the steroids that he has been taking as are other forms of facial hair, in addition to the puffy cheeks and belly. After he noticed his eyebrows, he said, "I have a mustache! AWESOME! I have a mustache!" I thought I would share this story and give you all a little view into his amazing attitude. He really lifts Matt and I all the time. He has continually approached all of this as an adventure and accepted all the changes with such an open mind. He even thinks having a mustache at 7 is cool! :)

We have lots of funny and touching stories like this from our journey. I thought I'd share a couple more to give you a good laugh and to get them documented in the blog for the future.

One morning in the hospital, the doctors were talking to us about Max getting Ellee's marrow and how it would work. Suddenly, Max threw his hands up to his head and said, "am I gonna be a woman?!?" He really thought that after getting Ellee's marrow, he was going to turn into a girl.

On Easter Sunday at about 2 am, Max and I were sleeping in the hospital and I was disturbed by the toilet flushing. This was a very common occurrence and usually didn't bother me at that point but, I heard it and noticed a man coming out of the bathroom. I was a little startled because the PCAs who measure the "output" (pee and poo) from the patients as well as other things, usually introduce themselves before you go to bed and we hadn't met this guy. Anyway, he went over to the sink in the room and started washing his hands. At that point, Max got disturbed and sat up in bed, looking at the man. Then he quickly laid back down. After the man left the room, Max sat up again and said, "mommy, mommy...I just saw the Easter bunny! He has glasses and a mustache!"

I was tucking the boys into bed recently and Max said to me, "mom, we owe God big time." I responded that I knew we did but, why did he think so. With that he said, "because I haven't had any fevers!" So true....someone is watching out for us. A fever would send Max back into the hospital for at least three days.

One more quick one...two Sundays ago after Max got sick to his stomach from the potassium adjustment, I told him that I needed to call the doctor on call down at the hospital to let them know what was going on. He responded, "mom, if they say that we need to come down there and sleep there tonight, I'm ok with that. Even if we have to stay for 5 days, I'm ok with that. But, I AM NOT staying for 2 weeks!"

Hope you enjoyed these little quips. Life is good right now, despite the massive changes in it! We had quite a busy Mothers Day and I actually said to Matt, "I am really starting to enjoy our simpler life!" It is going to be a tough transition back to full reality in the future. But, we've got lots of time to work our way toward that. In the meantime, we'll enjoy the simple pleasures that just living in the moment and hanging out at home has brought to our lives. More soon.

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