Tues October 13, 2009 10:34 PM
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Layla’s 1st day of radiation is 2moro. Never did I think my baby would need radiation to rid her little body of cancer http://laylagrace.org
Tues October 13 – Radiation Day 1
Radiation starts tomorrow. I was so eager to move on to this stage of treatment, but now that it’s here, I’m nervous. With chemo, I knew what to expect. This is something totally new and different. Layla has to be at Methodist Hospital every morning at 8am, for the next 14 days. She will be sedated, then zapped with a high dose of radiation for about 1 minute. After that, she’ll be taken to recovery. 30 minutes after she wakes up, we’re free to leave.
She will also be going to Texas Children’s a few times a week to check her blood counts. Her blood level has to stay above 10, and since I’ve only seen it at 10 ONCE since May, there’s a good chance she’ll need several transfusions per week. That is a lengthy process – she has blood work done then we wait about 45 minutes for the results. If she needs blood, they have to order it from the blood bank which takes about 2 hours. Once she finally starts getting the blood, it is infused over 3 hours. If she also needs platelets, they are infused over an additional hour. On days she needs blood, we usually get home well after dark. Makes for an extremely long day for both of us.
Layla has been in such a great mood the past few weeks, I’m really hoping the radiation doesn’t make her feel too crappy. I’m extremely anxious about the stem cell transplant because there are so many risks and things that can go wrong. I want her to really enjoy the next 3 weeks before we’re both stuck in an isolated hospital room for 6 weeks.
Please pray for minimal side effects from radiation, that her blood counts will stabilize over 10 and she will need minimal transfusions, and that Layla’s sisters, Claire and Jenna, will adjust well to this phase of treatment.
Also, I’d like to ask for prayer for a few very special people who have been such a blessing to us. Two women who I have never met face to face are currently hosting an eBay benefit for Layla. I’m so completely overwhelmed at the kindness of strangers. Also, there is a group of 5 women who are planning a large fall festival/fundraiser for Layla. They have jobs and families of their own, but they are taking the time to help us ease the financial burden of having a child with cancer. Two of them – S and J, have poured their heart and soul into planning this festival and it consumes most of their days. I feel SO blessed to have such amazing and supportive friends.
Wed October 14, 2009 7:48 AM
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Taking Layla to Methodist for day 1 of radiation. Please say a quick prayer for her.
Wed October 14, 2009 12:56 PM
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Radiation is over. We went to TCH and had blood work done. Her counts have to stay higher than 10 during radiation so she will need…
Wed October 14, 2009 12:58 PM
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…frequent transfusions. Instead of doing the transfusion today and keeping her until 10pm, we can do it tomorrow after radiation.
Wed October 14, 2009 6:43 PM
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Layla and her sister, Claire, in their matching pj's
Thurs October 15, 2009 8:16 AM
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At Methodist 4 radiation, then over 2 TCH for an appt with Dr. R & blood transfusion. I hope I get home in time 2 see Layla’s sisters 2nite!
Thurs October 15, 2009 12:21 PM
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Radiation over & blood transfusion is beginning. Discovered a double ear infection during her dr appt. The dr asked me if she had been…
Thurs October 15, 2009 12:23 PM
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… irritable lately. I gave her a look & she said “ok, yeah, dumb question” lol. She will take meds for the infection and can’t go on…
Thurs October 15, 2009 2:24 PM
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…to transplant until it is completely cleared up. Other than that, she looks great and her weight is stable.
Thurs October 15, 2009 10:01 PM
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I had Layla’s pictures taken the other day. The photographer, Melissa, sent me this today. LOVE IT!! Made me cry! http://tinyurl.com/yzwbf9z
Thurs October 15 – In My Daughter’s Eyes
Radiation is going well so far. Layla had a blood transfusion today and will probably need another one Tuesday or Wednesday. She is still in great spirits and has tons of energy. I feel so blessed to have a HAPPY child with cancer.
Layla’s pictures were taken earlier this week for her eBay charity benefit. Melissa, the photographer, sent me this slide show today. I cry every time I watch it. If I turn off the sound, it’s a little easier to watch.
Fri October 16, 2009 9:26 AM
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Radiation is over for the day, Layla is in a great mood and the weather is fabulous. It’s going to be a great day!
Sun October 18, 2009 4:13 PM
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Layla spent all afternoon at the pumpkin patch with her sisters. She loved it and saw one of her favorite nurses! Pictures coming soon…
Sun October 18, 2009
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Layla’s ebay auction. Thank you Judith for an amazing Eloise outfit, & Melissa Lively for amazing pictures! http://tinyurl.com/yllll5u
Sun October 18, 2009
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Pictures from Layla’s day at the pumpkin patch!!http://tinyurl.com/ygzd29t
Sun October 18 – Pumpkin Patch!!
Layla goes back to radiation tomorrow. She felt great all weekend, with the exception of a bout of throw up last night after dinner. Her energy level has been great and she’s still eating fairly well. Her weight is stable at 21 pounds and she is getting stronger every day. I can’t wait for the day when she can walk by herself! She loves to walk but has to be holding our hands. It’s partly fear and partly because her core isn’t very strong. Those abdominal muscles were encased with tumor then cut before she learned how to use them. She has the desire to walk, just not the strength yet. She has been through so much, I know it will all happen in due time. She is progressing fabulously!
It is very difficult to get her to take her Amoxicillin for the double ear infection. After taking chemo orally, any medicine I try to give her is met with a HUGE fight! I don’t blame her, but it sure does make it hard on me!
We went to Dewberry Farms today. I wasn’t too impressed with the pumpkin patch, but the kids loved it!! There are more pictures in Layla’s Flickr account.
Tues October 20, 2009 5:57 PM
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Layla had a full day of radiation, lab work (blood counts look GREAT), Dr visit, & visiting Miss Campbell who left the PICU today.
Tues October 20, 2009 5:58 PM
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We made a stop by Fox News 26 and might get news coverage at Layla’s Fall Festival. Praise God for allowing us to raise awareness!!