Allergic Reaction

After Jace's bout with an allergic reaction to the platelets, I considered for one brief moment, walking away from this blog.:) I wondered how I could post such a painful experience today, and keep doing it in the days to come. There we were on a little high about favorable cancer (How is that possible?? Students, did you catch the oxymoron?), and wham. His eyes started itching, his tongue started swelling, and before I knew it, my morale was knocked lower than it has been since last Saturday. Of course the nurses were immediately there medicating him to reverse the effects, and it eventually subsided. It's just so frustrating, because the reaction wasn't due to the Leukemia or the chemo. It was simply his body rejecting the donor's platelets. But, there is nothing like seeing your child cry and thrash and beg for relief. It also prolonged the dreaded hunger he felt, and we've never seen him more mad. For all of you who know the Grovers and the Leathams, picture this: A Grover at his maddest-- then a Leatham at his maddest. Combine the two and you will see how Jace was this afternoon. He instantly had hives covering his body, and although I handled it well at the time, when they took him for the LP and Biopsy, I broke down again.

Matt is helping me see, now while I'm writing that maybe the reason today was so hard on me was because I didn't know how to help Jace. Luckily, Matt reacted well once again, and Jace knew his dad understood that sometimes fighting back just helps. Jace wasn't sad. He wasn't scared; he was just plain ticked.

Although the allergic reaction set us back a few hours for the Lumbar Puncture and Bone Marrow Biopsy, they still accomplished these tasks this afternoon, and felt like everything else was looking ok. Although his immune system is also as low as it has been at 200 (they prefer it to be a thousand), we don't have to return to Salt Lake again until Monday.

Today, Jace "Took the bull by the horns," (and his mom was trampled!):) At 4 PM he finally received his reward of Mac & Cheese, Cream Soda, and a comfy ride home.

Back at PCMC

I'm going to post some new results we just heard, in order to save a dozen phone calls. The majority of you may want to skip this technical stuff, but everyone can rejoice with us when I tell you that things are looking great! We just visited with our attending physician, and he was excited when he looked over the results from the biopsy last week. One intimidating thing we learned is that 95% of the cells in Jace's marrow last Monday were cancerous. With that said, we don't really understand this yet, but maybe some of you will. The Dr. said he found some "SIGNIFICANT" good news: a (12;21) favorable chromosome swap. They call this Tel-Aml 1. Apparently in the smart people world, this is good news. We also think we will be able to come home today.:)!!!!

Jace just received some of his chemo meds, and now we are waiting for platelets (yes, his were too low to go for the other procedures). Jace has been crying because he is sooooo hungry, and he's a little mad that we didn't bring our own Mac n' Cheese. The nurses side-tracked him with a squishy ball to throw at the wall and with an X-box. He's playing now.

I'm on the verge of tears, and I'm not sure why. I'm actually feeling really relieved about so many things. I guess maybe that's it. The nurse, Amy, (-- great name hu?) just asked if anyone has told me this gets easier. I think a few of you have, but you may need to remind me. Last week is a blur, and if is all the same to you, I'm not looking back.:)

"Look Up"

Matt had the pick-up pulled out of the garage and neatly packed for the trip today as I scurried out the door with last minute items I forgot to pack: mug of ice water (check), Nerf gun (check), hand sanitizer (check)...and Jace was cuddled into the back seat waiting for me. As I approached the door, he rolled down his window and excitedly said, "Mom, look up." I tilted my head to view a star filled sky, and I had to catch my breath. "Look at all the stars!"

We had an amazing weekend, with Jace perking up Sunday to almost his usual self. The food of the day was spaghetti-- in large quantities I may add. We had a quiet morning, and we took shifts to attend church. The few visitors we greeted in our home made Jace smile and play: Uno, Apples to Apples for kids, and more Uno. I was quite emotional packing for this trip, because I don't know what to expect. What to pack? How long will we stay? Is Hayden ok staying behind? Plus, while Jace was watching us prepare we went through his questions of: Is it going to hurt when they access my port? Why can't I eat after midnight? Can we take some macaroni and cheese and fix it at the hospital after my surgery? (Today he will have another Lumbar Puncture and a Bone Marrow Biopsy.)

When most of the guests were gone and the house settled, Jace needed Matt to hold him on the couch. Even though he had a good weekend, Jace was nervous for what the morning would bring. At 4 AM our house started to stir, and we were out the door by 4:30.

It's peculiar to me how Jace always says the right thing at the right time, and this morning was no exception. With his sweet spirit he calmed my nerves and gave me simple but powerful advice...and just when I felt my anxiety level reach new heights from boarding the vehicle that was taking him back to a hospital, he reminded me to, "Look up." I breathed another prayer, looked up, and we were on our way.