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Questions and answers

There was an believably heart-wrenching moment when I sat down to write this post that I considered that Mary Kay, Taylor’s mother, won’t be doing this anymore. There will be no more updates on Taylor’s progress, no more sweet stories of things she said or did, no more uplifting stories of her continued strength in fighting cancer. She made the final post of Taylor’s life on Sunday. She may make more posts about their family, how life goes on for them. But Taylor’s posts have ended. I was just frozen at the thought that there is a very real possibility that I could be sitting at this keyboard forced to make that same sort of post about Peyton. How I ache for this family, for their loss, for their struggle to move past this. I think about the added sorrow that when Mary Kay and Cary look at their beautiful daughter Jordan, Taylor’s twin, they are going to see the mirror image of the daughter that they lost every day. The special bond between twins that goes beyond a mere sibling love, what must that be like for Jordan to lose? I hope that the many prayers being whispered in their behalf are bringing some peace and comfort into their hearts.

Today was a clinic day for Peyton. I think she’s getting into prep mode for her upcoming round of steroids because she woke me up at 5 AM with the announcement that she was really hungry for some green beans. And this couldn’t wait until 6:30? Apparently not! So, we got up, I made green beans in the dark with my eyes closed and laid back down on the couch while she ate. Boy am I really looking forward to those all night feedings in my near future.

Peter went with us to the clinic today. We had lots of questions about the ongoing pain issues, the next phase of treatment and the upcoming radiation. I’ve noticed that the past couple of nights, even with the pain medication before bed, she’s started tossing and turning again and even crying in her sleep. This tells me that the pain is getting worse and I brought that to the doctor’s attention. This with the falling problems she’s had recently brought her to the decision to hold the Vincristine for yet another dose.

We talked for a long time about the upcoming radiation treatment. It’s a scary thing because the radiation to her head and spine raise her chances for secondary cancers or tumors, it is very likely to drop a few points off her IQ, it is likely that she will have issues with memory and cognitive skills as she gets older. But the truth of the matter is, if we can’t control and get rid of THIS cancer, there won’t be any second cancer to worry about. As I told Pete, the options really stink, there are no great “yeah, I like that one!” choices to choose from. They all have their very bad side effects to deal with, and there is no easy way out.

We also made the tough choice to go ahead with an unscheduled bone marrow aspiration today. With all the issues of leg pain, I was just in a lot of worry about the possibilities of what it could mean. The procedure itself went easily with the use of the virtual reality goggles and happy meds, and the results were clear, meaning that there are no signs of relapse. This is a huge relief and answer to prayers!! It puts my heart at ease in a lot of ways!

We go back on Wednesday to see if Peyton is going to need blood. Her ANC was good at 900, her platelet count was good, but her hemoglobin was borderline at 8.2. We aren’t back at the clinic for chemo until the 14th of May!!! Wooo hooooo…that’s over two full weeks of chemo free living! But when we start back up it’s a doozy. Unfortunately, it also means that during a portion of the time when we have to be there almost daily, the kids will be home from school and I will be doing a lot of juggling. But I know that we’ll make it work, the clinic staff is great about working with that. On the 14 we’ll start up with the steroids and a series of chemo that makes her counts plummet, her energy level drop to nothing, she needs blood often and she’s going to loose all her peach fuzz. But on the bright side, it’s the last phase before maintenance! Then life is supposed to ease up and we can look forward to an easier schedule of chemo.

We also were asked today if our family would participate in a short video that will be a part of the All Children’s Hospital telethon. I don’t know exactly what it will entail, but they asked if we would do a little spot about Peyton, her story and treatment. We’re excited to help out however we can and are honored that they asked us. She’s a phenomenal little girl and we’ve developed wonderful relationships with the people at our clinic. They are so good to us and we cannot imagine going through all this without them. The funny thing is, they often read this site, so when we go in, they already know the issues that Peyton’s been having! Talk about a time saver. So, thank you to Kathy, Kyleen, Cindy, Teri, Louise, Nancy, Diana, Shawn, Margie, Judy, Dr. Kerr and Dr. Ayala.

On the home front, we’re easing into the final weeks of school. I haven’t got a clue what I’m going to do with the kids this summer, but I’m hoping it will be fun. The kids have exactly 4 weeks of school left. I think we’re all counting down for different reasons. We still have lots of stuff on our plates, however. We have a major history project, a teddy bear parade, a music program, a dance recital, a kindergarten graduation, teacher appreciation week, and numerous end of the year parties. I continue to be so thankful that this year has been such an amazing one of support and encouragement and that our children have been blessed to be at their school. They have been constantly loved and given the extra boost they need to cope with all the changes forced upon them. Thank you to the CBCS family for all you’ve done to help us through this challenge.

Thank you to all who’ve come to this site and left your encouragement, love and support. You truly do not know what an impact you have on our lives. What a lift to our spirits you are, what blessings you share.

f.r.o.G…fully relying on God

4 Comments on “Questions and answers”

  1. #1 Lori Aul
    on Apr 23rd, 2007 at 7:12 pm

    I just want you to know that I received an e-mail in regards to your daughter Peyton today by Gail Weston, who I know through Mary Kay.

    I will be including your daughter in my prayers and will pass her name onto my prayer group. Prayers are instrumental in creating God's miracles. Keep the faith, and turn your pain, sadness, & tiredness over to the one who can renew you in spirit and rejuvenate you at the same time!

    God Bless you and your family,
    Lori Aul
    St. Louis, MO

  2. #2 Basi Perkins
    on Apr 23rd, 2007 at 8:46 pm

    Hi Anissa,
    I'm so sorry about the loss of Taylor. I promise to pray for her parents and sister. It's very scary when our kids are going through these things. The options are few in terms of picking a treatment; they all have something negative associated with them. But what do you do? Thank God that we have people in our lives that help us through and that we can lean on God's strength and his heart. And that we know that God is always for us, even when we have more questions than answers.

    I'll be thinking and praying for you as you head into that next round of chemo.

    love, basi
    kate's mom

  3. #3 Alyssa
    on Apr 24th, 2007 at 8:56 am

    Hi Anissa,

    I have been reading about Peyton and your family for several months now and send all of you positive thoughts daily though this is the first time I have written. I have also been checking on Taylor for the last several months and have her family in my prayers as they struggle through this difficult time. I have noticed your comments on the depth of twin connection and specifically Jordan's loss. While I am not a twin, my mom (age 56) and cousin (age 9) are both twinless twins who have dealt with the pain and depression related to losing their twin for many years and have both found a great deal of help from an organization called Twinless Twins. It seems intrusive to provide the name of this organization in Taylor's guestbook and I am not sure if the Taylor's family will continue to post regularly. I hope given your personal relationship with the family, that you might file this away in your memory to let Mary Kay and Cary know about when the time is right and if Jordan might need this special organization to connect with twins like her.

    Anissa, each time I read your latest post I cannot help but feel a connection to your family. You are an amazing mom (one who could certainly be an author and/or comedian as well) and I look forward to reading your tales of Peyton, Pete, Nathaniel, Rachael for many, many years to come.

    Sending you warm wishes and positive energy from NJ,

  4. #4 doug
    on Apr 26th, 2007 at 8:57 am

    I found this pdf on the Childrens Oncology Site [url=http://survivorshipguidelines.org/pdf/DietandPhysicalActivity.pdf]http://survivorshipguidelines.org/pdf/DietandPhysicalActivity.pdf[/url]
    It refers to things to focus on to help children with cancer and help reduce the effects later in life. You can have the fruit part covered extremly easily, you know how.