The days have slowed down and almost become ‘normal’ in a way. We now do her daily Med’s once in the AM and once in the PM. She has gotten very good at her crushed pills in chocolate pudding and the liquid Med’s at the moment have went away. We typically will see her doctor, Dr. Mitchell early mid-day to get the daily update. Besides the visit with Dr. Mitchell, throughout the days we have nurses (2-3 nurses per shift), the fun committee (Madelyn has finally warmed up to them), social workers, volunteers, teachers, a music person… I can’t lie, the support is A+ for both Madelyn and mom and dad but every now and then having someone stop in your room every 5 minutes is overwhelming.

On Tuesday, Madelyn decided to give Glass TV a try. This is a 20 minute ‘game show’ where the kids call in and get to answer questions and is broadcast to anyone on channel 12. Typical Madelyn, she started with not thinking it would be fun and not wanting to do it. By about question #3, she wanted to call in every question and mom definitely wasn’t fast enough on the dial up phone. The smile on her face each time was priceless. Madelyn was also very quick to get mad at mom and dad when we didn’t know the answer. Who knew it’s not just a caterpillar but it’s actually a ‘whoollybear’ caterpillar. Dad claims his only failed class in college was Entomology and it seems to officially be true 😊

Rhys is who is over the fun committee and he’s truly one of those people who is great at their job and loves what they do. Madelyn didn’t warm up to him too quick, but Tuesday was her day that he finally won her over. Rhys convinced Madelyn to take a walk down to the 9th floor play area (with mom and dad) and learn the game ‘sleeping queens’. We’re not even letting her win anymore but somehow she won both games we played. Its amazing to mom and dad, with all she’s got going on, hooked to an IV, people poking at her non-stop, she still has that smile that lights up a room and it’s still contagious as ever.

One of the other games that we have been playing a decent amount of is Farkle.  For any of you that have played this, you know that rolling 6 of a kind doesn’t happen often.  Well it just so happens Madelyn is the exception to that rule and rolled one here today.  When she saw the excitement of dad after he figured it out, she had the biggest smile ever.

Madelyn during the day goes from her jolly ol self to being very tired.  Typically 2-3 hours in the middle of the day she either takes a nap or gets in her funk where she doesn’t really talk to anyone.  Will just kind of zone mom, dad and the help staff out.  We’re still not sure if its more to do with the Med’s or the her sleep schedule is all out of whack.  Dad likes to push her to take at least a few walks per day.  Typically around attempt #20, dad gets her to say yes and we all walk hand in hand 1 or 2 laps around the floor.  When your isolated in a place like this its ‘the small things’ you realize are what get you through.  Be it the 3 nurses that will comment on her unicorn slippers, or the fact she doesn’t’ have to fight with her brother to scan the badges and push the open door buttons, or maybe its that she knows the lady in the last office before her room has mints.  In our normal world, I know we don’t notice those things nearly as much.  Both Brad and I have admitted though that being here, we have noticed so many ‘small’ things that just truly bring joy to Madelyn which in return melts both of our hearts.   

Madelyn today did have to get 2 chemo shots today.  We found this out yesterday but decided not to break this to her until today and they came in to put the numbing cream on her thighs.  Last year for her flu shot, she cried for probably 2 hours after.  Needless to say I was dreading the simultaneous shots in her thighs not going overly well.  Madelyn proved us wrong and took them like a champ.  5 minutes after and a few tears later (and a bowl of ice-cream from dad), we had more or less moved on and the shots were a things of the past.  I guess were starting to learn this little princess of ours is tougher than we thought 😊