Spinal taps? I’ll take 2!!!

Peter received a phone call from his alma mater yesterday. A “please donate so that we can build a new wing of something for the university and we will send you a t-shirt!” call. And Peter gave them the “Our kid has cancer, want to donate to pediatric cancer research?” response? His comment was that nothing gets people off the phone faster than pulling that old cancer card out. Gotta find that special silver lining on every cloud, I guess.

Peyton and I went to “go to the new hospital and play games with our feet!” today… otherwise known as a physical therapy evaluation. I will tell you that the techniques that they use to get a 3 year old through PT are very fun and the therapist is a charm with kids. Peyton and she had a ball together and it was neat to watch her get Peyton to perform each task. The basic report is that Peyton has noticeable weakness on her left leg and foot, due to the medications that she’s taken she has damaged nerves and it causes her to walk on the insides of her feet, she is overcompensating for the left side weakness by using her hands to get up and down and using her right side at odd times, her endurance and strength is low for a child her age and her motor skills are on the low side because of the weakness. All that said, she wasn’t too worried about it. She didn’t even think that Peyton’s problem required a regular PT schedule. She sent me home with a strengthening tool and some exercises to help strengthen her ankle and calf muscles, and we are now proud owners of a prescription to get her fitted for…and I know I’m going to say this wrong…an orthotic…which is a brace that will be molded to her foot and ankle. It will help correct the way she is walking and adjust her limp and the duck walk she has. When I asked about Peyton’s tendency to hop or skip she explained that with her left side weakness, she would compensate for actual balance or strength with speed. That’s why she has this crazy Forrest Gump looking walk. Run Peyton Run!! So, she’ll get her braces in the next couple of months and that should help her walking problem until the side effects of the medications wear off (hopefully).

After our playtime with PT, we headed up to our clinic for a fun day of spinal taps and chemo. We saw our new friend Zach who is a shining example of the fallacy that all cancer kids are lethargic and sickly. This kid is a whirling dynamo of energy and life, he cracked me up because he was just like a little human pinball! It was awesome to see that even with as much chemo as he has pumped into his body, he was still going strong as ever. This is the fighting spirit he’ll need to conquer the world.

After Peyton got her port accessed she was pretty sleepy. We are usually in for the 8 AM spinal appointment, but we had to juggle because of the PT appointment so we were in at the 1 PM appointment. Right in the middle of her naptime, and she’d already played with the foot lady, so it had been a full day! She passed out. Hard. Like snoring, drooling, wheezing hard. She got her pre-meds, she got her happy meds and we decided not to wake her just so we could put goggles on her during her procedure. She didn’t even budge or notice we were giving her the spinal tap until about ¾ of the way through the procedure. It was great! Until she realized we were done, and she hadn’t had a chance to wear her virtual reality goggles to watch her new Dora movie we’d rented just for the occasion.

So picture this…Peyton is naked, has the goggles on and is watching her movie, bawling because she didn’t get to watch her movie during the spinal tap that she didn’t know she was having and is seriously throwing a fit because we refuse to do a second spinal. Yes, I have the only child on the face of the planet that screamed “do it again” when I told her the spinal was over. Have I mentioned that she was still under the effects of a lot of drugs? She remained miffed for quite a while about our uncooperativeness in administering a second spinal tap. Go figure.

I did finally get her out of the clinic in a good mood, with the promise that we’ll do it all again in 3 months….whoo hoo, I guess.

We got home at 4 pm, after a long day of doctors and got an invite to have dinner with Penny Hawkins and her crew. Nikki does music lessons near our house on Mondays, so we enjoyed a fun meal with them tonight….6 kids…a pizza buffet…unlimited soda….good times!

I talked very briefly with Lisa Deal tonight, Hannah’s mother. It was a very short and devastating conversation. Hannah had taken a real turn for the worse and she felt that it was very possible that she was passing tonight. I haven’t heard a confirmation on that yet, but my heart is so broken and aching for them as they watch her slip further and further away. Part of me prays for as much time as possible but the other part of me wants her to go before she gets to a point where she lingers and suffers. Please just pray that Hannah’s time is easy and that her family is surrounded by love and that knowing that Hannah goes to a perfect Heavenly reward gives them some peace and comfort in this time.

f.r.o.G….fully relying on God
–Anissa