Thankfully, we were home yesterday (Friday) so it was a day to recover as Thursday was wicked for Jake.  It wasn’t really any different of TCH day… blood work, transfusions, the usual, but he just wasn’t in the frame of mind for it all.  First he took a poke to the arm for blood work and it didn’t pull blood right away so our nurse had to wiggle to find the vein – that had him upset.  Then when his counts came back low, we had to access through his port.  It just didn’t make for a good combination.  The morning actually started out well.  Big brother, Ryan came to hang out and be with Jake and he was bouncing around, making his Docs smile.  They were giggling over zombie brains and meatball sandwiches.  But it’s all about mindset and his changed fast as the morning drew on and turned into a very long, emotional, draining day for him.  At one point he just passed out on my chest with those unconsious, continuous, muffled, puffy, breaths from crying so hard. When he finally passed out, I was so thankful for his rest and was able to close my eyes and rest too.  We actually closed the place down.  Other than one other family who was waiting to be walked over to West Tower 9 for admission, we were it.  During our meeting with Dr. Zage and Dr. Foster, we finalized Jake’s newest game plan… to keep his surgery scheduled for February 13th.  His counts didn’t move much, in fact his ANC dipped a bit, which is unusual, but they said there is always a margin of error, so to speak, and lots of things can make it yo-yo.  Chemo 5 and 6 will be held till after he recovers from surgery.  We head back in Monday morning for his CT scan, then for blood work and transfusions.  We have a couple of specific prayer requests that we would be so grateful for you to pray over… first and the biggest, please pray that the mass has been responsive to all of the chemotherapy – that it has shrunk and calcified enough that it isn’t terribly veiny and can be easily removed.  Second, Jake is really struggling with accesses.  His terror leading up to his port access, and the recovery time for him to calm down afterward, is worsening. We will be working with a trauma psychologist soon but until then, we are doing the best we can to keep him controlled and calm so he doesn’t hurt himself or someone else.  Sometimes it takes 4-5 of us to handle him, which makes it even worse and more frightening for him. Please pray that Monday morning, we have a calm access to his chest port – no screaming, fighting, throwing up.  And last,  please pray that he is calm and still for the scan.  The plan is NO sedation.  It’s a quick scan of about 10 minutes and he can do this.  BUT if his access doesn’t go well, calming him down is almost impossible within a reasonable amount of time and they will push to sedate him.  We’d prefer to have him awake.  As with any sedation, there are always risks and the less we have to go this route, the better.   We are anxious about this scan and we are anticipating good things.  Dr. Foster always makes us feel so encouraged by what she sees with Jake and we are eager to see the images.  She will call Monday evening with the results and we will see them later this week when we meet with his surgeon.  As for now… we are home for the weekend, it’s beautiful and warm here, and he is running around happy, barefoot, in jammies… as it should be!  We’ve played Wii, watched movies and the kids are all outside playing as I sit here and write.  The girls are shooting their bows, Jake is on the driveway, Cam on his skate board, Ry – don’t know where he is actually, but he’s around here somewhere, and Meg just dropped by for a minute too. It’s a good day! Emma wrote a poem for her brother, and she’d like to share…. What I’m Here For by Emma Hickford Cancer is like a Dancer, it leaves foot prints everywhere. Jake won’t walk the plank, he won’t sit, and watch, and stare. Jake is a little warrior fighting cancer like a pro. Sisters are for hugs and kisses and that’s what I’m here for. Cancer pounces, you never know when it’s coming. Jake is always playing, jumping, and smiling. He’s innocent like children always are. And sisters are for hugs and kisses and that’s what I’m here for. Cancer finds a victim just like that dancer rat. Jake is like a nutcracker, because he will fight back. Jake is kind and caring he won’t leave you behind. Sisters are for hugs and kisses and that’s what I’m here for.  And that’s what I’m here for.

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!

So it’s Lucky #9… The neutrophil dance must have worked yesterday because NINE DAYS LATER, we are headed home!  As I sit and write, Jake is juicing up on platelets, yet again, so we can leave this afternoon and make it through the weekend.  His ANC is still really low at 170 but they are giving us our Freedom Card and we’ll take it!  That means the kids will strip and shower when they walk in the door from school!!  Usually they don’t let Jake leave until he hits 250 – 500 after a neutropenic fever hospitalization.  For you and me, this would signal something really bad going on, but for a cancer patient, they are considered out of the “severly dangerous neutropenic zone” and heading toward “normal”.  In no way is he free and clear to go into the big world of germs and crowds but he can go back to the isolation of his own home.  (In case, you were wondering, a healthy person has an ANC of between 2500 – 6000.)  We have a few days home and will be back here for the day on Monday so we will rest and enjoy.  The past couple of days, we were both hitting some low spots, the isolation and loneliness is hard and not seeing a discharge date in sight wears on you.  But as I like to quote my friend Scarlett… “tomorrow is another day”.  AND IT IS!  Jake is telling everyone that walks in our room that he’s going home, we’re all smiles!   Thank you all for praying… I know there were a couple of big prayer requests that circled yesterday among my church ladies and I’m so thankful.  Thank you to EVERYONE of you for lifting Jake up, my heart is full of joy today, I wish I could hug you all and you could see the happy dance going on in here this morning!