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Tuesday…..the new Monday!

There have been lots of sweet comments regarding the Easter pictures, and thank you so much! The kids really did look pretty spiffy that day, and I was busting with pride. However, I have to give you the full story on one particular photo. The full body shot of Peyton with her toe pointed and her head bowed is so angelic, she just looks like a little ballerina. And that’s so not how she was acting when the picture was taken. As I sat in the yard, Rachael was standing behind me yelling “You have to point your toe!! Your toe!! Hold your hands out….your toe, Peyton! Look at me, point your toe!!” Peyton looked at her toe and responded “I’m pointing it, see! You’re freaking me out!”

Click! Beautiful moment captured forever

Monday we went to the clinic again but only got a finger poke. The two older kids were out of school that day so I dragged them along with me, but they are champs and were great at the clinic. Peyton’s counts came back decent, nothing to dance about, but enough to get through the rest of the week without transfusion. Her ANC dropped from 600 to 300 and that was a surprise, but everything else rose minimally. They held her chemo on Friday because her counts were high enough, so I don’t know if she’s actually getting her spinal tap tomorrow or not.

Now that I think back on it, Peyton started acting unusually clumsy a couple of months ago, falling down a lot. I attributed it to a new pair of flip flops she’d gotten and her inability to walk in them. We replaced the flip flops with traditional sandals and it seemed to improve somewhat. Then with the news of the peripheral neuropathy and her slight limp, I’ve become hyper-aware of her falling tendencies. In fact, on Monday at the clinic alone, she took three floor dives! I was watching her very closely and when she walks she favors her right side, and when she falls her knees buckle. It’s not that she’s tripping or losing her balance, it’s as if her legs just give way. This is very scary for me to watch, but from everything I’ve read it is a side effect that is temporary and it might require physical therapy, but hopefully will recede when they decide to hold or lessen her Vincristine doses.

With them holding her Methotrexate due to low counts and potentially holding her Vincristine due to the neuropathy, it puts me in a strange frame of mind because I don’t mind the lack of chemo, but I hate to think that not having it could open her to potential relapse. I know that a few missed doses aren’t immediately going to cause leukemia cells to come flooding back in, and honestly, her body harbors enough chemo in it to probably hold it over for a while. It’s just lousy options either way.

With the falling down is the pain. Her legs hurt, and I have codeine to give her. I hate that. When we were first diagnosed and she had a morphine pump, I hated it. They told us that she would get a steady dose of morphine but we could push the button and she’d get a small extra burst available every 15 minutes. I had a notebook sitting on the table, where I wrote down every time I pushed the button. It took us a couple of days to start hitting that button every 15 minutes, not because we wanted her in pain, but we didn’t realize she truly needed that extra burst. When we did start giving it to her the change was lightning fast. So, I don’t want her to suffer at all, if I can keep her pain-free, then I’ll give her the medicine. I don’t want to give her too much, but I don’t want to not give it to her because of a hang up I have. However, I have the hardest time figuring out when her pain is genuine, when she’s just in a crappy mood….or is her crappy mood because she’s in pain? I give it to her when it’s obvious she doesn’t feel well, and she stops complaining and she perks up. Please just pray that the pain that she feels will be relieved, whether through her treatment or if I just get this pain medication figured out.

Jesse Kennedy is a 3rd grader and asked the fifty thousand dollar question “Why did Peyton get cancer?” I drew him pictures and explained the how, the basics of what happened in her body that caused cancer to grow in her blood. But when it came down to it, I told him the truth “No one knows why some kids get it and some kids don’t.” I told him that the question he asked me was one reason why we’re walking the Relay for Life, because if we can figure out why kids get cancer, we can find a cure….it’s our hope. He was very grown up about it, he understood that and was even more motivated to walk. “I want to help figure out how to cure cancer.” If that was a priority in more lives, I believe we’d have a cure by now.

I’m up to 30+ magazine cover kids ready to go for Relay. The parents have all been so supportive of this labor of love and are always willing to help in some way to raise the awareness bar. It’s been a hard job to hit the CaringBridge website each day and read up on kids, introduce myself to new families and come to care for each individual one. Their stories are all so familiar, some with much harder struggles, some with tragic endings and all with a common desire….cure….cure….cure. These kids have the beauty of courage and determination in their eyes. Bald, pale, bruised, tired, scarred, wheelchair-bound, growth-stunted, hooked up to monitors and tubes, they are all gorgeous.

This morning Peyton and I dropped off Nathaniel and Rachael and took off to the Children’s Cancer Center for Lil’ Tales, the preschool play date. It’s ok with Rachael if Peyton and mom are going to the clinic because she knows the fun is equaled out by the not-fun. But now she knows the CCC is a pain-free, all fun all the time kind of place and was kind of miffed that we were going without her. But, Adelaine and Peyton and all their sweet friends were having a blast today, the laughs and squeals were loud and raucous. Each time we go Peyton gets more and more comfortable and willing to play with the other kids, which is awesome because she used to be really friendly with kids her own age and that sort of went away in the past 9 months. She needs this time to have age-appropriate interaction and to remember “hey, little people like me are cool too”.

My initial worries that I would find the group depressing have totally been alleviated. We were laughing so hard today, while sharing our kids’ diagnosis stories, that we were in tears….seriously….in a good way! We laugh at our kids, our families, ourselves, the weirdness of it all, and it’s such a relief to find that special friendship with people.

It all comes with a bittersweet humor. For example, today I found out that one of the directors of the CCC (who lives next door to the pediatrician who diagnosed Peyton…small world, huh?) had worked in adult oncology, then pediatric oncology, and worked with the CCC the entire time. But it wasn’t until after the CCC expanded and she went to work there full time that her son was diagnosed with Lymphoma and later died. I knew that several employees and lots of the volunteers are parents or siblings of cancer patients, but figured that most of them started after the cancer had touched them personally. It turns out that there are several who were already involved when their children got diagnosed. Ok…now, I know you’re thinking that that is really not a laugh-worthy story, but it all comes to this. We, the cancer moms, have decided that with this theory in mind, we’re all going to go apply for jobs with the Florida Lottery and see what happens! Maybe we’re a little off our collective rocker, but man, we were just cracking up!

After Lil Tales, Peyton and I drove up to the Pediatric Cancer Foundation. I am getting flyers from the CCC and the PCF to display at our Relay site. I want information to be available, even if we touch one person to volunteer and get involved, it will be worth it. They are another fantastic organization here in Tampa. While the CCC is dedicated to helping the families of pediatric cancer patients on a personal level, the PCF is dedicated to much the same, but with a high priority in raising funds towards pediatric cancer research. They are involved in research programs for cancers that drug companies and our government don’t feel are a priority. Money goes to research where money will be made, and pediatric cancer isn’t the money maker adult cancers are because they aren’t as common. It’s a stinky system, but the PCF is working to fund that research, to reach that goal. I’m looking forward to getting more involved with them as time allows.

My friend Chris was supposed to walk with us at Relay with her two daughters. Unfortunately, her father has not recovered from a liver transplant he had back in the early fall. He has been in a coma for many months and from an email I received, his condition has taken a turn for the worse. My prayers and heart are with Chris and her family as they wait and pray that God will heal her father, either by letting him improve or by taking him to Heaven.

Keep Peyton’s ever-changing blood count status in prayers. I know they are supposed to go up and down a lot, but at least if they could go up when they’re supposed to and drop when they’re supposed to, it would ease my mind a little. I’m praying for her doctors and nurses to have wisdom, for God to guide them as they guide us through this cancer journey.

f.r.o.G…fully relying on God

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