Many of you know I am competing in Ironman Arizona next week. This will be my fourth Ironman and in each of my previous events, I have raised money for a charity. This year it is a charity called Beads of Courage. Beads of Courage is a program developed to support children facing life threatening illness. We are in 150 hospitals across the country, Canada, Japan, England and Australia serving over 30,000 children. We start new programs in hospitals every week. You can learn more about Beads of Courage at beadsofcourage.org or just call me and I will answer any question you have. The program is in many of your cities as well so while it is a national charity, the benefits are local as well. This is a link to an eight minute CBS Sunday Morning segment on Beads of Courage from 2010 youtube/watch?v=nqfboMNNMWQ. While raising money for the charity and all of our members, I will be specifically racing in honor of two specific kids (pictures are attached), Tucker and Olivia. Tucker is a rambunctious young man who loves tigers and proudly carries a battle scar on his chest due to his battles. I would also like to tell you about Olivia however, her mom does a much better job in the section below. --------------------------------------------------------------------------------------------------------------------------------------------------- Friday, October 19, 2012 I took Olivia to the ER at Childrens in Plano. She had not felt well for the past week and had gotten worse as the week progressed. I had taken her to the doctor earlier in the week and they said it was a virus. When I took her the second time they sent us to the ER. At the ER they ran tests and informed us she would need to be transferred to Childrens Medical Center in Dallas as she was in kidney failure and the would be requesting an oncologist see her as well. By ambulance we traveled to Dallas. She spent 2 nights in ICU and the following Tuesday she had a kidney biopsy as well as a bone marrow biopsy. Wednesday, October 24, 2012 we were told she had Acute Lymphoblastic Leukemia. The next day she had a port put in and began chemo treatments. We were there until the following Friday, spending Halloween in the hospital, as she had more chemo treatments as well as a high calcium level that she was given shots for. Olivia began regular clinic visits the following week as well as needing to be under the care of a kidney specialist as she has high blood pressure. She also had a continuous cough as calcium had gone to her lungs, which would be discovered later. she got her hair cut off as it began to fall out quickly. Ironically, she had cut her hair the summer before for Locks of Love. At the end of November she had another bone marrow check and we were told there was still 10% of the leukemia left. Not a good thing but We could only move forward. The first part of December she was back in the hospital for 10 days and then home. 3 days before Christmas she was admitted again. The good news was that the leukemia was down to .01%, the bad news was that she would be there for Christmas as she had a fever that didnt go away. She ended up being there 5 weeks, through Christmas, New Years and her 11th birthday. I decorated her room for every holiday and event, but it still wasnt home. While there this time she endured a lung biopsy with 2 chest tubes, pancreatitis, encephalitis, an MRI, an EEG, and a sonogram. Her bead collection was growing. She was on a pain pump for 4 weeks as well as TPN. When we went home, she had to walk with a walker as she was physically so weak. In February she began weekly physical therapy sessions when she wasnt in the hospital. The next few months she was in the hospital more than home. Olivia would have in hospital chemo treatment and then go home for a few days or not at all, due to the mouth sores caused from the chemo. In April she finished the last round of the those treatments. April and May she got stronger and enjoyed the spring, even though treatments continued. She had had another bone marrow check and the leukemia had jumped a tiny bit but the treatment continued. Memorial Day weekend she spent and couple of days in the hospital due to a fever but home quickly. In June she was back in for 17 days due to a fever and her immune system counts staying at 0 for several days. Not until they started coming back, could she go home. At that point she had been in the hospital over a 100 nights. July was a good month. She had another bone marrow check and the leukemia was back down to .01%, although we were hoping it would be completely gone. Olivia went to Camp John Marc for a week and had a fabulous time. She had wanted to go to public school this year, as she was so isolated last year and had been homeschooled until now. She was looking forward to that for a long time. We spent the next few weeks after camp going to musicals, the rodeo, the circus, out for tea and getting ready for school. Olivia completed the last round of her treatment on August 23rd, school began on the 26th. She went to school that first week and two days of the following. September 5th there was another bone marrow check and her doctor called to tell us that the leukemia had gotten worse, significantly worse. We had a family meeting with her to discuss the next step in the Treatment plan. Olivia would need to do extreme chemo in the hospital and be there until her counts came back and then have a bone marrow transplant. Olivia was to go on her Make A Wish trip the last week of October to Disney World as she loved Halloween and wanted to spend it there. Her doctor said we could go before she started the chemo treatment but the week of the trip (which had been rescheduled), she just didnt think she would have as much fun as if she waited until she was stonger. September 16th we went to the ER and Olivia was admitted to the hospital for the last time. She began the 5 day intensive treatment on Wednesday and Sunday afternoon, almost at the end of the last chemo treatment, she was taken to the ICU as she had fluid on her lungs. She had a breathing mask on to help her breath more easily. She said I Love You to me that night and that was the last time she spoke to me. Monday, her blood pressure was low, her lungs still filled with fluid, and other complications had arisen. That afternoon, the doctors worked on her for almost 8 hours before we saw her. That night was her last night with us. She danced her way into Heaven on Tuesday morning, September 24, 2013. She was now in the ultimate Disney World. Olivia was a Princess Warrior and fought the Leukemia battle with optimism and strength, as well as anyone could. We loved her so much and will miss her everyday going forward. ---------------------------------------------------------------------------------------------------------------------------------- As you can see we don’t win every battle or war, that is why research funding is critical and many organizations exist for that purpose, I have chosen to serve on the board of Beads of Courage to support those fighting a daily battle. Thanks for listening and sharing in the story of Tucker, Olivia and Beads of Courage. If you would like, please consider joining in that support by donating at bit.ly/BOCIMAZ - any amount helps and thanks for your support. If you have problems with the bit.ly link, here is the full donation link address: https://z2systems/np/clients/beadsofcourage/campaign.jsp?campaign=2&team=40&fundraiser=1866& Feel free to share this with anyone you feel would be interested.
Posted on: Fri, 08 Nov 2013 22:48:13 +0000
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