The Prince & The Princess

Spent the day at TCH Clinic yesterday and were blessed to be with friends.  The day started off really rocky with Jake throwing up most of the way into the med center.  We live a good hour away so this made for a very upset little guy.  Of all days for me to forget his extra clothes… ugh!  Once we got there we were able to get changed with a new shirt from the Candlelighter’s stash and clean him up.  He did end up with two sticks – his arm and his port… one for blood work, the other to access for transfusions.  It made for a teary morning for Jake and mommy. Thankfully, Jake recovered and re-directed better than he has been with the help of Dana, our Child Life Specialist (and the help of her iPad and his friend Pearl).  And mommy did the same with the company of my friend, Pearl’s mommy, Crissy.  It was nice to be able to catch up and have a mommy friend there to spend the day with.  Jake’s counts barely moved since last week so it’s unlikely they will jump enough to make admission for chemo this Thursday, and his platelets had dropped which gave him the green light for an afternoon of transfusions.  They are watching his lungs again as they sound “wet” and he’s still harboring that same cough. We’re still in limbo as to how the next couple of weeks will play out with his “road map” but hope to have the plan in place this Thursday when we head back in for blood work just in case his counts magically sky-rocket, and we can be admitted for his 5th round of chemo. I included some pictures of Jake and Pearl playing and there is one where they both tuckered out – it’s the sweetest thing ever!  This gives you an idea of a day in the infusion room.  Kids playing, sleeping, some transfusing, some taking chemo, some of them in the sick bay area.  It’s a world that I never knew existed.  Now it’s our “couple-a-times-a-week” hang out.  Jake is scheduled for a CT scan on Monday morning which will give us an updated reading of the size of the mass in his abdomen.  The last scan measured the mass as the size of a small grapefruit… here’s to praying for something tiny!  This should be a short scan and recently, he’s decided that he likes the “big picture machines”.  We had a good weekend at home BUT, as I was moving some things around, Jake was zooming around the house on his scooter and hit a mirror that was leaning against the wall.  It was only there a couple of minutes… truly!  I win “Mom of the Year” for that one… I KNOW BETTER!   Of all the kids in the house, a mirror falls on the one that doesn’t clot normally.  Thankfully, and by the grace of God, he wasn’t cut up too badly.  It took us a while to get him cleaned up and we were all a little freaked out with all the blood but he’s OK.  His sweet, little, bald head has a few cuts and bruises but it’s just “super hero” bang ups. We also went to Daddy’s soccer game on Sunday – they won!  Jake and I sat in the car and watched from a distance, except for a few minutes, and it was nice to get out.  As you keep Jake in your prayers, please also pray for his little friend Pearl.  One day, they will be very special friends, sharing a connection, an experience that few others will understand.  Our two special warriors… a very pretty princess and a very handsome prince!  Who knows, maybe one day, far away, they’ll go to the royal ball together!