November 3, 2019

by | Nov 3, 2019 | 0 comments

After a grueling week of pain and nausea followed by more pain and nausea, Will has decided it’s just as easy to have pain and nausea at home as it is to have it in the hospital.  In truth, Sponge Bob Square Pants and a Halloween party were the real motivators behind our departure from Children’s Hospital but whatever it takes to have a break from being inpatient is good by me!
Will had spiked a big fever on Wednesday morning which threatened to mess up his plans so his team gave him a list of what it would take to make his party.  By Thursday morning he was 24-hours fever free, had not grown any weird bacteria in his blood cultures and he had rousted himself out of bed to walk laps to prove he was good to go.  His nurse, Ashley, rallied and got all the meds done early, changed his dressing and pulled his discharge info together in warp speed. I packed up the room, loaded up the car and we bolted before anyone had a chance to come to their senses!  Of course I cried 72 times from sheer exhaustion but also gratitude for the entire team pushing to make this happen.  They have come to appreciate Will for his mental stamina (and stubborn ways) and pushed us out of the nest with confidence to spare.
Fast forward a few hours and a Sponge Bob costume change later (complete with a hat transformed into official Krusty Krab uniform status by Will with Sharpie markers) I could tell this kid was hurting, a lot, and trying to fend off some big-time nausea.  My inquires were met with grunts that I interpreted as teenager for “I’m fine, Mom” and I reminded myself when Will sets his mind to something its just about carved in stone so I gathered up the rest of his accoutrement and dropped him at his friend’s party.  Needless to say the evening had a fairly swift and unpleasant ending and, just like that, we were reminded that cancer likes to keep the upper hand and whether it’s the disease or the treatment, it’s going to do it’s best to put you in your place.

Today was a trip back to Children’s for a clinic visit with Will’s oncologist and another lumbar puncture with chemo to treat his CNS disease.  We have a new plan for pain management which seems to be making a small difference and he even pecked at a little food today.  My reaction to him eating, our new normal, is as if he’s a toddler who just put down a pound of kale and I feel a little more reassured we may be on to something sustainable at home, at least for the time being.  Coming home a tale of two cities; on the one hand it’s wonderful to be together but on the other it adds layers of caregiver duties that can overwhelm the days and nights.  But, just like any one would do, we rise to the occasion and ultimately the extra responsibilities just become part of the pace of each day.  In the meantime we pray the pain is the leukemia being broken up, that the marrow is clearing and that Will’s body and mind can withstand another round sturdy and strong.

In other news, and the reason this post is so delayed being put up (along with every other life thing) – Jack Maniatis took part of his middle finger off in the parking lot of the Epic store at Park Meadows Mall.  Jack and I had been in getting him geared up with some ski boots; we had driven separately, he put the boots in the back seat of his car, we were casually saying “goodbye, see you at home!” and he shut the door.  Next thing you know we were both staring at his hand, blood and a chunk of finger still in the door.  We ran back towards the store, he stayed outside (he’s a considerate guy even during a trauma) and I ran in and got paper towel.  We went back to look for the finger, now couldn’t find it and realized we needed to make a move to an ER quickly.  On the way to the ER Jack called the store and asked whomever he spoke with if they could look for the finger (I’m guessing probably not a request they get often) and a few minutes later we arrived at ER and were taken straight back.  The good news?  They don’t make you wait very long when you cut your finger off.
Long story short, they cleaned it up, did an X-ray to see if bone was involved (it was), administered IV antibiotics and consulted with a hand surgeon about next steps. Meantime, Stuva did a drive by with the finger (it had been located, by whom I’m not sure but I look forward to hearing all about it) but shortly thereafter we learned that the surgeon did not think it smart to try and reattach it.  Typically in cases like this surgeons don’t recommend reattaching because the impact of what he’s lost isn’t going to effect him long term and the rate of failure of reattachment is very high and brings more risk of infection and complications.   We’ll be going on Monday to a hand surgeon where they’ll shave the bone down a bit and cover it with skin and Jack seemed ok with that.  Like a typical teenager, he was more concerned with the fact that he was hungry and when could he eat, lol.  And in case you’re wondering, it was on his left hand and, yes, Jack is a leftie….thank god it wasn’t a thumb, though, as texting would be much harder.
I have spent a little time pondering “why” as in why is all this trouble raining down on us as well as “how much” as in how much more can we take.  Oddly enough I don’t spend much more than a few moments on this.  Not sure why but I guess I have become truly immersed in the idea of being stoic and keeping perspective.  So this morning as I wrap this up, I am just thankful that Jack still will have decent use of the finger (I literally cannot wait to have him flip me the bird!) and that I have Will here with me, in his special “chair”, cozy in his new down jacket he bought with some gift cards he’s been saving up and looking forward to watching some football today.
If you want to help, we will take your prayers today for keeping Jack infection free and for less pain today for Mister Will:). Peace out😀


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Will’s Stuff

While in treatment Will was often confined to his hospital room. In order to satisfy his creative and entrepreneurial nature he opened up a little online clothing business featuring his own designs. Soon after he began donating portions of his own proceeds to childhood cancer charities and in in this spirit we have kept the store open and ALL proceeds now go directly to WillStrong Foundation. Shop with purpose and help us help others!