So, we’re sitting at the clinic, waiting for a room to open up so Peyton can get her port accessed and her medication, and she’s having a great time doing crafts with Diane and Sarah from the Children’s Cancer Center.
In storms 1000 Nazis bearing machine guns and rabid boa constrictors, oozing acid from their pores and blazing fire from their nostrils, they are screaming threats to steal all the kids’ toys and run over their favorite teddy bears with tanks!!
Not really.
It was just an Easter Bunny.
Before the BUNNY
But from the expression on Peyton’s face and the way she scrambled up my body like a monkey and held on for dear life, you would have thought it was totally the Nazi scenario. Her mind shut down and went into complete panic mode in a way saved for airplane crashes, it was quite amusing.
This was just nanoseconds before she attempted to crawl back into the womb as a safety measure from that mean old bunny!
“I don’t love that Easter Bunny!”
It got so bad that when she saw that the BUNNY, and in her mind that word was truly said in all caps, she wouldn’t even leave the treatment room to walk down the hallway to the playroom.
Forget the needle in her chest. Forget the toxic medications they put in her body. That bunny was the worst part of her day!
I did get some disturbing news from the doc today. Peyton normally skips a lot, she just flounces around and I didn’t notice a change in the way she walks. She’s been complaining of leg pain, of which we’d made sure that the clinic was aware. It is a complaint that she sometimes uses to stay up late or to get attention, but it’s also something that seriously causes her to be unable to sleep well. It’s usually at night when she’s trying to sleep that we hear the most complaint, or she tosses and turns from the pain. The doctor today noticed that Peyton has a limp!
A limp! I didn’t see that until she made Peyton walk slowly in front of us and I watched her closely. It’s not a pronounced limp, but I definitely saw it. She favors her right side, and she is sort of walking on the outside of her feet.
Unfortunately, one of the medications that Peyton has gotten since the start of treatment and on a regular basis through each phase of her treatment is called Vincristine. Up until this point, the worst side effects of the Vincristine have been hair loss, constipation, she can’t sleep well and…this is a weird one…she smells funny. But a rarer side effect and one that is caused by either large doses or sustained use, which she has both, is that it causes peripheral neuropathy….again with the new vocabulary words, there will be a test!
This means that she could have some sort of nerve damage, and because she’s 3 she can’t really tell us much about it. It manifests with tingling in the fingers and toes and causes weakness, pain and clumsiness. The doctor tested her reflexes in the office and we were concerned to see that when they banged on her knees…both knees, tops and bottoms of the knees….there was no response. She didn’t flinch, her feet showed no movement at all.
Sooooo, if she is still limping and complaining of leg pain, the doctor is planning to stop her Vincristine treatment indefinitely. We already had to hold her Methotrexate treatment today because her counts were too low. We’ve had a pretty easy trip through Chemotherapy-land, she’s done well and handled medications like a trooper. This last 6 weeks with bad counts and now this new leg thing, we’re really getting a dose of the crappy side of cancer treatment. I’m just praying that stopping her Vincristine will allow her body to heal the damage done from the Vincristine, everything I’ve read on it says that after stopping the treatment the side effects will go away and the doctor told me that it shouldn’t be a permanent problem.
Sarah, our Children's Cancer Center friend
Cindy, one of our all time favorite nurses!
Kyleen, the most amazing child life specialist ever
Shawn, one of our sweetest clinic friends
My personal Relay project of making pictures of cancer kids into magazine covers in the style of Child magazine is going really well. I’m getting such an overwhelming positive response from parents in getting me pictures and information on their children and how happy they are that we are working to raise awareness about pediatric cancer. The finished projects themselves are beautiful because of the outstanding bravery and courage of the faces shown. Check them out at the new link “Relay Magazine Covers”, I’m updating it as I finish new projects, so peek in on it often. It’s such an honor to work with these families in getting their stories out there in the little way I can.
Keep Adelaine in your prayers, she will be having surgery soon to have tubes put in her ears to relieve her reoccurring ear infections. She’s been admitted to All Children’s frequently due to these ear infections, she’s had a lot of pain and it’s caused a severe bacterial infection at one point. We are praying that this procedure will relieve all that for her.
Tomorrow our family is going to the Children’s Cancer Center for their family oncology support group. They will have a dinner and then the parents have grown up time (can we all say YEAHHH!!!) and the kids have an Easter party with crafts and games. It should be a fun time for us all and I’m so looking forward to seeing all the great people of the CCC.
f.r.o.G…fully relying on God
—Anissa
