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The art of coming back up

How do I possible put into words what this week has been? Roller coasters. Yo-yos. It has been a huge up and down emotionally that is draining, frustrating and overwhelming at best.

The week started off so well with the fashion show lighting up our week with hope and happiness. It was an amazing event and highlighted so much hard work towards the search for cures and treatments.

But it was made so much more poignant in the face of all the news that has fallen through the rest of the week.

Our sweet friend [url=http://www.caringbridge.org/visit/mathewjgliddon]Mathew[/url] has come to the end of treatment options. The fungal infection that invaded his nose has spread to his brain and his spinal cord is deteriorated. This means that bone marrow transplant is no longer an option, there are no more treatments available for him and now we just pray for his comfort and for strength and faith for his family. His parents want to take him home, make him as comfortable and happy as they can.

[url=http://www.caringbridge.org/fl/emilylester]Emily Lester [/url]is a warrior of incredible proportions. She was diagnosed at 12, relapsed after finishing her initial treatment and went to St. Jude's where she underwent Bone Marrow Transplant from a perfect match marrow donated by her sister. She was sailing through treatment, she’d just been accepted to Duke University and was the recipient of several scholarships when her cancer came back again this winter. She has been at St. Jude's awaiting a second bone marrow transplant, but the years of chemo and treatment have take their unmerciful toll on her young body. Her liver and kidneys are failing and her family is faithfully holding to the hope that Emily will be able to continue to fight.

Steven Rodriguez is a 16 year old boy that I’ve never even had the chance to get to know. I only have the friendship that I’ve been building with his mother Katherine. Steven has a horrible aggressive form of testicular cancer and he’d been doing so well, amazing the doctors with his ability to overcome each setback and making it through a successful stem cell transplant. His mom was preparing to take him back home to Vero Beach, their home before cancer brought them to Tampa for treatment at Moffit. But I got the news last night that Steven has relapsed and he will still be going home, but this time with no treatment options and only quality of life to think about, not quantity.

Kaylie Gunn remains in the ICU on a vent as her very sick body battles apergillis pneumonia. Last report on her was that she was stable, not improving but not getting any worse. I guess sometimes stable is the best we can expect, but we continue to pray for complete healing.

A very special friend [url=http://www.caringbridge.org/visit/sierrakesler]Sierra[/url] is also inpatient at the hospital battling a nasty case of pneumonia. She has had seriously depressed counts and that is alarming, but her body is fighting off a lot of infection and she just had large doses of chemo. The doctors are expecting her counts to come up, but if they have not improved by Monday they will be doing a bone marrow aspirate to see what might be going on. Although there have been no “unclassifieds” in any of her bloodwork, the dreaded R word is always a fear. Please pray for the Keslers as this fear, in the face of so much recent bad news, is nearly crippling.

But in the midst of fear and the pain is also joy and life. I just got off the phone with my wonderful friend Lisa Deal who lost her daughter Hannah this past year and she shared fantastic news. In November her family will be welcoming a new baby!!! They are so excited and this baby will be so loved.

I continue to stay positive and hopeful that Peyton will be one that overcomes cancer. That she will be a survivor and an example of the many children who do make it through this awful disease. But my heart is just broken for the many friends who don’t have choice, who have to face what life is going to be without the child they love so very much.

There is fear that if these children can relapse and undergo such a horrific trial to battle a disease that is going to win anyway, what will keep it from happening to Peyton?

There is guilt, what can I say to these friends when I have the comfort of going home to my child and they don’t. Anything I say feels stupid and pointless and really give no comfort. But I continue to give them my prayers, my love and encourage them in any way I can, because it’s all I got.

There is a feeling of defeat, that no matter how hard we continue to work in raising awareness and money for research, the kids that are dying in the meantime are a painful reminder of how slow the process is.

I can’t do any more than turn to God, to pray with all my heart for the strength to get up each day and face it with the knowledge that I’m part of the greater plan. I believe that even when the outcome isn’t what our heart desired, it’s God’s purpose and I have to strengthen my faith that THAT is what truly defines our lives.

Please take the time today and every day to be thankful for the blessings in your lives. They may be a family who loves you, a stranger that makes you smile, a quick cuddle with your pet, a happy moment that brightens your day. These are all gifts, they are to be treasured and too often we forget to thank God for them. Hug your child extra long tonight, give your spouse that extra kiss and live each moment so that you know for certain you always have quality of life, not just quantity.

f.r.o.G….fully relying on God

ps…One sweet thing to end this somewhat sad and depressing post, Tim Wilkins, Peyton's escort for the fashion show talked about the show and showed some of the pictures of her today on the Studio 10 show. You have to click on[url=http://www.studio10.tv/day/friday/segment.aspx/68245/The_Morning_Blather] "morning blather" for Friday the 14th[/url]. Nothing like knowing that your daughter's binky addiction is local news!

3 Comments on “The art of coming back up”

    on Mar 15th, 2008 at 9:36 pm

    Please know that I am praying for your friends. I read on Heather's blog something like there is more money raised in Florida for saving manatees than is raised in the ENTIRE WORLD for pediatric cancer research. That just makes me so sad. And so mad. And I am at a loss as to what to do to help. I continue with my prayers for Peyton and all of you.

  2. #2 Julie Endres
    on Mar 16th, 2008 at 8:42 am

    Peyton! So beautiful. You were gorgeous on the runway. Was introduced to you by Shelly Tucker and never comment, but have to this time. Dashing! We now live in Dalby, Australia and love the internet so that I can keep up with your healing.

    Gog bless,

    PS. Your Mom, the frog, is a great writer!

  3. #3 Penny Hawkins
    on Mar 16th, 2008 at 10:35 pm

    I can say that I am glad I did NOT hear from you this weekend. Since it seems the only time I hear from my CANCER mom friends on a weekend is when one of them takes a turn for the worse. ALL of these kids weight heavy on my mind. I meant to tell you Peyton was stunning in her dress at the fashion show…… Nik had fun but was TIRED by nights end… oh and mom was too! Tell Pete we said HELLO! Penny