When I returned home from London Sunday night, Charlotte was excited to show me all her goodies from the light the night walk. I'm bummed to miss it, but hopefully we can do it again next year.
Charlotte had another clinic visit yesterday, where they stepped up her chemo dosage again. As promised from our last visit, they warned us they will keep increasing it as much as she can handle for this run through. Last night, Charly complained of her stomach hurting. I dosed her with the anti-nausea medicine. She didn't eat much for dinner. Around midnight, she came into our room, saying her tummy hurt. I got her a Sprite and laid down with her in her room for an hour, rubbing her back. She fell back asleep, and hopefully her stomachache will disappear in the next day or so. The oncologist told me they would pre-dose her with anti-nausea meds when she was in the clinic, and usually they suggest parents give their kids another dose before bed on the day the patient receives chemo. It sounded like the worst of it would be the day of her chemo dose. Otherwise, she is progressing well, and we take her in again in 10 days.
Tuesday, October 16, 2012
Saturday, October 13, 2012
Light The Night Walk
Charlotte is feeling good today and says she definitely wants to go to the Light the Night Walk later this afternoon. Looking forward to seeing everyone there and thank you for your support and donations to this worthwhile cause.
- Sean
- Sean
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| Charly and cousin Kaycee, one of the many Charly's Angels who showed up to walk and support Charlotte. They are both 6 years old. |
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| Naomi and cousins Abby, Sam & Luke. |
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| Naomi with cousins Brooke, Luke and Abby. |
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| Starting the Walk. Here we are with Alycia's cousins Brianne, Nate & Zac (and his GF Hailey). Red balloons were for those walking in support of someone with Cancer and white is for surviors. We had some carrying gold balloons in rememberance of those we've lost to Cancer (Alyica's Dad and his mom). |
Friday, October 12, 2012
Charly's Angels
In August, my 6-year old sister, Charlotte, was diagnosed with pre-b cell Acute Lymphoblastic Leukemia. My great-Aunt Barb contacted me and proposed that our extended family join in the the Leukemia & Lymphoma Society's (LLS) annual fundraising walk, Light the Night, this year.
There could not be a better fit for our family. My grandpa Doug passed away April 2011 after an 18-month battle with Myeloma, a blood cancer just like leukemia. His mother, my great-grandmother, was also diagnosed with myeloma when I was very little. Our family and friends will be walking tomorrow night under the team name "Charly's Angels" in honor of Charlotte. I know she will be a survivor.
-Naomi
There could not be a better fit for our family. My grandpa Doug passed away April 2011 after an 18-month battle with Myeloma, a blood cancer just like leukemia. His mother, my great-grandmother, was also diagnosed with myeloma when I was very little. Our family and friends will be walking tomorrow night under the team name "Charly's Angels" in honor of Charlotte. I know she will be a survivor.
-Naomi
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| This is the logo on the tee shirts my Uncle Eric designed for us to wear.
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2nd Most Asked Question
Next to the question about how did I know that I should bring Charlotte into the doctor, the next most-asked question is how are you going to handle this financially?
My third thought... after will Charlotte be able to go to school or if she could have kids one day... was how are we going to handle this financially?
When Sean was let go, we decided that rather than use my employer's insurance, which would be 25% of my paycheck, we'd use an independent plan to cover Sean and the kids while he was looking for work elsewhere. After her diagnosis, I texted work and asked when was the soonest we could get Charly on our group plan. I knew that when the independent plan was up in November, we would not be able to re-up her independent plan coverage at the same price, and they would deny coverage for anything with the leukemia due to "pre-existing condition". If she was on a group plan, they cannot deny coverage due to pre-existing conditions. Not only that, but I knew the current plan we were on did not cover prescriptions. Chemo is a prescription. Honestly, when we were discharged from the hospital, I was sent down to the pharmacy to fill a half-dozen prescriptions. When the pharmacist heard that my insurance wouldn't cover prescriptions, she wouldn't let me check-out. She sent me to the financial aid office, even though I assured her I could pay for the medications. After talking with the financial aid guy (yes, I cried - it was still that time when anytime I had to say Charly's diagnosis I would cry.) He handed me a card and told me to give it to the pharmacist. I went back to the pharmacy, and what was $1000 worth of medicine was sent home with me for $50.
When she originally received my text, Wendy told me that she was thinking, "Oh No! Enrollment was in July!" Because that's when she had to fill out all the forms for all the employees. However, when she called our insurance reps, they told her open enrollment was in August. They just needed the paperwork the month before. They told her to have me fill out the paperwork right away, and they could still include my application with the others and it would be approved. The coverage would be back-dated to the first August. I started to cry. The first doctor appointment was August 1st.
This is one example of how The Lord offers His tender mercies in our times of trial. I think back to all the weird things that had me feeling anxious about Charlotte. Little things that could have been brushed off again and again, maybe delaying another month before I took her into the doctor. Instead, I kept feeling something was wrong. I know that it was probably the Spirit whispering to me to pay attention. I took her in, she was diagnosed within 24 hours, I texted work, and August was the month of open enrollment.
As a medical practitioner, my boss is very particular about what plan he will purchase for us at work. It has been referred to as the "Cadillac of insurance" plan. That, and the fact that our office is so small, makes the plan pretty pricy. The original price I was quoted to cover our family was if I covered Sean and the girls. Wendy, our payroll/accounting lady, looked at what it would be to cover a child, and it was much lower. She also let me know I could cover both girls for the same price, so now Naomi is covered under my group plan as well. .. just in case.
Now, Charlotte is covered by 2 insurance plans until November. That means after the first plan pays a bill, it is then submitted to the 2nd insurance. I'm still spending much time unraveling the bills, EOB statements from the insurance companies, and figuring out what is covered and not covered, but I think we will be out our deductible and max co-insurance annually. In the meantime, we are working on re-financing the mortgage. The savings almost cover the price of adding the girls on my insurance. We will see if I am being naive. I promise if we are having any issues financially, I will speak up. However, I am at peace. I have a testimony of tithing, miracles have always occurred exactly when I most needed them. I wish I could be more eloquent about the strong conviction I feel that The Lord cares for His children. But you will just have to take my word for it.
Love,
Alycia
My third thought... after will Charlotte be able to go to school or if she could have kids one day... was how are we going to handle this financially?
When Sean was let go, we decided that rather than use my employer's insurance, which would be 25% of my paycheck, we'd use an independent plan to cover Sean and the kids while he was looking for work elsewhere. After her diagnosis, I texted work and asked when was the soonest we could get Charly on our group plan. I knew that when the independent plan was up in November, we would not be able to re-up her independent plan coverage at the same price, and they would deny coverage for anything with the leukemia due to "pre-existing condition". If she was on a group plan, they cannot deny coverage due to pre-existing conditions. Not only that, but I knew the current plan we were on did not cover prescriptions. Chemo is a prescription. Honestly, when we were discharged from the hospital, I was sent down to the pharmacy to fill a half-dozen prescriptions. When the pharmacist heard that my insurance wouldn't cover prescriptions, she wouldn't let me check-out. She sent me to the financial aid office, even though I assured her I could pay for the medications. After talking with the financial aid guy (yes, I cried - it was still that time when anytime I had to say Charly's diagnosis I would cry.) He handed me a card and told me to give it to the pharmacist. I went back to the pharmacy, and what was $1000 worth of medicine was sent home with me for $50.
When she originally received my text, Wendy told me that she was thinking, "Oh No! Enrollment was in July!" Because that's when she had to fill out all the forms for all the employees. However, when she called our insurance reps, they told her open enrollment was in August. They just needed the paperwork the month before. They told her to have me fill out the paperwork right away, and they could still include my application with the others and it would be approved. The coverage would be back-dated to the first August. I started to cry. The first doctor appointment was August 1st.
This is one example of how The Lord offers His tender mercies in our times of trial. I think back to all the weird things that had me feeling anxious about Charlotte. Little things that could have been brushed off again and again, maybe delaying another month before I took her into the doctor. Instead, I kept feeling something was wrong. I know that it was probably the Spirit whispering to me to pay attention. I took her in, she was diagnosed within 24 hours, I texted work, and August was the month of open enrollment.
As a medical practitioner, my boss is very particular about what plan he will purchase for us at work. It has been referred to as the "Cadillac of insurance" plan. That, and the fact that our office is so small, makes the plan pretty pricy. The original price I was quoted to cover our family was if I covered Sean and the girls. Wendy, our payroll/accounting lady, looked at what it would be to cover a child, and it was much lower. She also let me know I could cover both girls for the same price, so now Naomi is covered under my group plan as well. .. just in case.
Now, Charlotte is covered by 2 insurance plans until November. That means after the first plan pays a bill, it is then submitted to the 2nd insurance. I'm still spending much time unraveling the bills, EOB statements from the insurance companies, and figuring out what is covered and not covered, but I think we will be out our deductible and max co-insurance annually. In the meantime, we are working on re-financing the mortgage. The savings almost cover the price of adding the girls on my insurance. We will see if I am being naive. I promise if we are having any issues financially, I will speak up. However, I am at peace. I have a testimony of tithing, miracles have always occurred exactly when I most needed them. I wish I could be more eloquent about the strong conviction I feel that The Lord cares for His children. But you will just have to take my word for it.
Love,
Alycia
Monday, October 8, 2012
Wishes
I feel that I’m coping well with our turmoil overall; although, I will admit I have my moments of crazy. While we were undergoing our 5-day stay at Primary Children’s Hospital, Sean started telling me about Make a Wish. “Did you know Charlotte qualifies for the program?” While he and Charlotte discussed what she should wish for, I could feel my tension levels increase. I hated their entire conversation. I couldn't care less about swimming with dolphins, or a trip to Disney World, or going on a cruise or whatever. I know I got snippy and short with them both.
Stepping back and trying to understand why that is so, the best answer I can come up with is that the “Make a Wish” is for kids that are dying, and Charlotte IS NOT going to die! I have calmed down since then. I know it is perfectly unreasonable, and I have stopped feeling tense and angry when the topic comes up. It helps that we have a lot more information about her prognosis. I have a greater certainty that Charly will progress through chemo with a positive outcome. I know that it won’t mean she’s terminal if a wish for swimming with the dolphins is granted. I can even enjoy hearing her “wishes”.
You can tell when Naomi has been suggesting ideas to her. "Mom, I want to go to Atlantis for my wish." "Mom, I want to go to Queen Anne Island in Canada!" (Naomi just watched my box set for Anne of Green Gables). Charlotte’s wishes are much simpler. “I wish we could see them make crayons. That would be a good wish.” Usually the biggest wish she thinks of is a trip to Disneyland, because a lot of the neighbor kids have recently gone. However, the other day we were driving to Grandma’s house, and passing the nearby arcade/go-kart track and Charlotte pipes up from the backseat, “Mom, what do you think if I wished we could go to Boondocks?”
Stepping back and trying to understand why that is so, the best answer I can come up with is that the “Make a Wish” is for kids that are dying, and Charlotte IS NOT going to die! I have calmed down since then. I know it is perfectly unreasonable, and I have stopped feeling tense and angry when the topic comes up. It helps that we have a lot more information about her prognosis. I have a greater certainty that Charly will progress through chemo with a positive outcome. I know that it won’t mean she’s terminal if a wish for swimming with the dolphins is granted. I can even enjoy hearing her “wishes”.
You can tell when Naomi has been suggesting ideas to her. "Mom, I want to go to Atlantis for my wish." "Mom, I want to go to Queen Anne Island in Canada!" (Naomi just watched my box set for Anne of Green Gables). Charlotte’s wishes are much simpler. “I wish we could see them make crayons. That would be a good wish.” Usually the biggest wish she thinks of is a trip to Disneyland, because a lot of the neighbor kids have recently gone. However, the other day we were driving to Grandma’s house, and passing the nearby arcade/go-kart track and Charlotte pipes up from the backseat, “Mom, what do you think if I wished we could go to Boondocks?”
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