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Long day in a hard chair!

Today was the start of our next phase of treatment called "Intensified Consolidation". The basic schedule will be a series of 6 chemotherapy medications over the next 8 weeks given via IV, spinal tap, shot into the leg, and orally. The schedule is confusing, but we have two weeks of this and two weeks of that, sometimes shes getting it all at once, sometimes shes not
.its confusing and I have an in-depth calendar to keep EVERYTHING straight.

Great news! The results from the day 29 spinal and bone marrow showed that from the samples that they tested there was no leukemia and that means she is in remission. The note to that is that it is a limited remission, of sorts, the doctor explains that of the cell count that they took they found no blasts (leukemia cells), but if they were to do a much larger sample, there would still be leukemia in her system. BUT, the important thing is that for where she is in the treatment plan, shes exactly where they want and expect her to be. So we’re thankful for that news!

We were a little shocked to get her ANC count today. Her ANC count is the calculated blood count that tells us what her activity level can be due to her immune system. When her ANC goes below 1000 we have to start worrying about her exposure to large groups of people and germs, and eventually when the ANC bottoms out, we will have to keep her away from people as much as we can and try not to become hermits. When we left the clinic after our last treatment 9 days ago, she had just finished her steroids, which we knew was part of the reason her ANC count had stayed nice and high. Her ANC count was 11000. We knew it would start dropping, but today, after just one week off the steroids, it was down to 1800. It will get extremely low over the next few weeks, and one of her new medications especially affects her platelet counts and she will need a transfusion as early as the end of this week. Her new meds are going to make her feel irritable (nothing like steroids), extremely lethargic, and achy. So, we have an uphill battle with the new treatment, but she is strong and we are going to do our best to keep her fighting.

Todays treatment wasnt a bad treatment day, it was just long and she was so tired by the end of the day that she was in a terrible mood. She had her spinal tap with medication and two medications via her port. It was just a process of giving her a medication and then giving her a series of IV fluids to see if she would have a reaction to the medication. One of the medications can have an adverse reaction on the bladder, so they wanted to make sure she was able to pee ok and there wasnt any blood. They administer one med at a time, watch, then the next and watch, so we got started at 9 AM and didnt leave until 4:15, long day, but not too bad, as far as actual treatments. She enjoyed a few movies, painted and colored for a while and had some fun playing with bubbles.

The nurses were thrilled at the change in her personality, theyd only seen her on the steroids. It was fun for them to see her laughing and smiling and playing with them. She was talkative and just charmed everyone she saw today, so it was a nice change from the screaming, cranky hellion shed been for the past month. They got to see the real Peyton and she got to see them without the haze of steroids and see what nice people they really were. We joked that the only time theyd seen her this happy was on the feel-good drugs they give her just prior to her spinal tap, so if she felt this good to start AND got the drugs, it was going to be like Mardi Gras!

We continue to be thankful for how well shes responding to treatment, and for the return of her cheerful personality. Its been wonderful for the whole family to be able to spend time together and enjoy each other. Nathaniel and Rachael are doing well with school, they are already getting into the groove of things and we are so grateful for the challenging and nurturing environment they have at their school. God provides in a lot of ways and hes kept our kids in a school with friends who care and teachers and staff who pray and watch out for them every day, how can we not be thankful for that?

We are going to be organizing a Tupperware fundraiser over the next few weeks. I will be sending out emails to friends in different areas who might be willing to be a contact person and help us out with this endeavor. If you are willing to be a part of the fundraiser for Peyton or would like more information, let me know and I’ll email or call you as soon as I can with more info. The proceeds of this will go into Peyton’s Fund for her medical expenses.

Also, Im going through old VHS tapes and DVDs that we dont watch anymore to donate to the All Childrens Hospital Clinic in Tampa where we visit. They have a selection for the kids to watch while they’re having treatments and can always use new items to choose from. So, if anyone has some that theyd like to get rid of, any age group, let me know, I’ll get them from you (locally please!!!) and I’ll deliver them to the clinic on one of our visits. Please include a note from your family letting them know who’s donating, I know theyd love to know.

Thank you for your continued prayers and best wishes, they are appreciated, needed and working.


1 Comment on “Long day in a hard chair!”

  1. #1 Betty
    on Aug 23rd, 2006 at 9:42 pm

    Give Peyton a big hug from me.

    I pray for her every day and am hoping for a full recovery. Please tell her that I have a new Great-grandson and I can’t wait to see him. He lives in North Carolina and we are going to see him in October. His name is Landon. He weighed 10 pounds 12 ounces, a really big boy. When I get a picture of him I’ll send one to her. Tell Peyton that I love her and one day when ya’ll come to Mississippi maybe we can get together.

    Love Betty