Happy Halloween!



Charlotte and her friend Jeffrey H. begging to go now. We got them to wait 10 more minutes



Sean - Called to him, "Hey, let me get a picture of you and show how hard you're working." Thus the look.



This time he posed for the shot, but he still has that "look".







Charlotte said she had to take a picture of mom.



Noami as an 80s girl.





Message from Charlotte

Charlotte was playing on my ipad on the long drive up to the clinic on Thursday. Here’s what she wrote:

"my mom and i are going to the clinic today we are not there yet so I'm on the iPad . I like my mom and she love's me to . i gave out candy to them ."

Finishing Interim Maintenance and What Comes Next

Yesterday, Sean and Naomi left to fly to Virginia and attend Sean's sister's, Darcy, wedding. Charlotte and I stayed home. The doctors didn't think it would be a good idea to fly with Charlotte. Rather than make her feel bummed at staying home and missing out on being a flower girl, we spent a day running around having fun. We started out by driving down to my work. I had a final catalog press proof to get signed off by Dr. Christensen. Once he put in his changes (his nose looked too red... get that fixed), Charlotte and I drove the proofs to the printing house. I asked if Charlotte and I could see the machines going. They took us out back, and we got to watch as they printed some Breast Cancer fundraiser fliers. They showed Charlotte where the paper went into the press, then walked us down about 30 feet to the end of the press to watch the finished fliers shoot out. Charlotte found the whole thing interesting.

While at work, a co-worker asked Charlotte if we had gotten any pumpkins yet. Charlotte immediately fixated on the fact that we HAD NO PUMPKINS. On the way home, we saw a huge display of pumpkins at a local grocery. Charlotte demanded we stop and pick up pumpkins. She spied a white one, and was out of the car before I could grab my purse, "running" to make sure it would be hers. I say "running" because Charlotte has yet to get herself to a full run yet. It's sweet and heartbreaking to see her struggle to run. We grabbed three pumpkins and quickly purchased them.

After we returned home, we invited our pre-school neighbor, Lilli, to come play. Charlotte and Lilli happily played until Charlotte's home health nurse came to draw blood for her doctor's visit the next day. Then the Fed-Ex truck came with our Monkey in my Chair. She and Lilli played with the monkey until Charlotte's teacher, Ms. Smith, came to have an hour of school with Charlotte. Charlotte is thankfully on par with her classmates in math and writing, and at the top end of the class, reading at a level 18. Ms. Smith explained that the kids that needed help in her class were reading at a level 4. She has a few kids reading at a level 18, and the bulk of the class is averaging at level 8.

For dinner, we invited the McDaniel clan over for walking tacos. It was noisy and great. When we said goodbye to the McDaniels, Charlotte collapsed on the couch, exhausted.

Today we returned to Primary's oncology clinic for another round of Chemo. It snowed this morning, so our drive up was a little nerve-wracking. The first snow of the season always seems to freak out everyone, and they forget how to drive. Some people drive like maniacs, and others drive like morons. We were 15 minutes late to our appointment, even though we left with enough time to arrive 15 minutes early.

Charlotte shared some chocolates with the nurses and doctors that I brought back from my London trip. Everyone asked what her Halloween costume would be, and loved her super-cool Sketcher boots with the light-up toes. Her oncologist said she is doing great! Her red blood cell levels were lower, but not enough that they would require a transfusion. Her immunity levels are looking good. When Charlotte asked if she could go to her soccer team's Halloween party, the oncologist said he felt it should be fine, if mom agrees. Charlotte was thrilled. We talked more about what will be coming up. In ten days, Charlotte gets another lumbar puncture. Ten days after that, we finish the "Interim Maintenance's" last dose of chemo.

After the "Interim Maintenance" cycle, we will start "Delayed Intensification". They will bring back the steroids (yuck!!). I say yuck because it causes her to be very emotional. She also ends up taking a half dozen other medications to off-set the side effects of the steroids. If I'm understanding them correctly, she'll be on them for 7 days, off them for 7 days for two months. Charly will also be given 3 different chemo drugs through her IV for weekly appointments. As her oncologist explained it, usually patients see their immunity levels drop significantly at the third week of this treatment. We may have to have a transfusion or two at this stage. If I'm counting right, it sounds like Thanksgiving and Christmas will be low immunity times. However, she keeps doing great! No mouth sores, no rash on her hands or feet, no stopping the clock to allow her to recover yet... knock on wood. I know it is from all those prayers everyone offers on her behalf.

I mentioned that it seemed like she is doing great, with little problems from her chemo. I keep getting people who ask me when she will be able to go back to school. The doctor said, "don't worry, even though she seems to not be having a hard time, the medicine is working". I assured him I wasn't anxious about it, but I do admit to being curious about it. He said with most kids, that along with their low immune system the main negative factor is how exhausting a full day of school is. Remembering how exhausted Charlotte was after our full day yesterday. I'm sure that was nowhere near the normal pace of a first grader. I have no promises from our doctors, they don't like to do that, but I'm confident Charly will be ready to start 2nd grade when the time comes. Who knows! Maybe she will be feeling up to a day or two of 1st grade before school breaks for summer.

Monkey In My Chair

After 6 weeks on a waiting list, Charly received her "Monkey in my Chair" kit. The monkey will reside in her chair at school in her place. The classmates will take "Charlotte" to recess, to field trips, to PE, etc. They include a book explaining to the class why there is a monkey in her chair, a journal to pass letters back and forth with, a mini monkey that can stay home with Charlotte to keep her company, and a backpack to carry everything in.

The child life specialist at the PCMC oncology clinic highly recommended the program, in order for Charlotte to keep a presence in school, even if she can't be present. Reading through the kit had me bawling this afternoon. Good thing Charly was distracted with her friend Lilli and the monkey.


If you are looking for a worthy organization to donate to this season, check out http://www.monkeyinmychair.org. Thanks to the Trinity United Methodist Church in Salina, KS for their donation!

Random Pix



Making up their own rules for chess. Honestly, I have no clue how to play either.



Sunny day and sunny smiles!

Current Chemo Plan

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.

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

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.



Naomi and cousins Abby, Sam & Luke.



Naomi with cousins Brooke, Luke and Abby.

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).



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

This is the logo on the tee shirts my Uncle Eric designed for us to wear.

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

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?”

Gardner Village Visit

Here are some photos of Charly at Gardner Village with her cousins yesterday.  Please note her festive outfit...

Luke, Charly & Brooke



Charly & Brooke



Charly and Luke checking out the giant Koi fish and tadpoles

Keeping Ender from making a splash...

Sit by me dearie.

Sitting with a witchy friend... and my cousins.

Beginning Stage 3 - Interim Maintenance

Yesterday, a home health nurse came to our house and took a blood sample for CBC (Complete Blood Count). They take the blood, analyze it to see where Charlotte is, and then decide if she's ready to go forward or not. Once again, she passed with flying colors. She was cleared to begin the next stage of chemo. If her counts were not acceptable, she would have received a respite from chemo to allow her body time to build its defenses.

This third stage is called Interim Maintenance. Charly will go in every 10 days for the next 4 appointments. At these appointments she will be given more Vincristine - the chemo that causes jaw pain and constipation - and Methotrexate. She had Vincristine given to her weekly the first month during her induction phase. Thus far, Methotrexate has only been given in a very small dose in her spinal fluid. Now it will be administered via her port in a larger dose. Before each appointment, the doctors will analyze her CBC and up her dosage of Methotrexate depending on her tolerance. Their goal is to give her the most she can tolerate. This Methotrexate will cause mouth sores. How severe they will be differs kid to kid, so we don't know if Charly will luck out and have a few canker sores or if it will be worse. She will also experience nausea and some kids get a rash or blisters on their hands and feet. We just keep an eye on her and see what will happen. If she is nauseous, we have Zofran, a drug they give pregnant mothers who are having a tough time with morning sickness. The oncologist says she should hopefully only be nauseous the day of chemo.

Since each appointment is "count dependent", if her counts don't look good, they will stop treatment and reschedule. Her ANC level must be at least 750 (ANC is how they measure her immunity levels), and her platelets need to be 75 or higher. As explained to me today, November and December will be hard for Charly. The chemo drugs seem to have a lot of side affects that don't sound nice. After we finish Interim Maintenance, they start the phase titled, "Delayed Intensification". That doesn't sound fun.

I had a discussion with the doctor about appropriate activities for Charlotte. Sean and I have been unsure about what is safe for Charly to do. Sean is certainly super cautious. I wanted to make sure I wasn't being too cavalier about having friends over to play Wii, or taking her to the park. Aunt Heather invited us to meet them at Gardner Village to see the witches, and there is the upcoming Light the Night Walk. The doctor says all those activities should be fine. If they tell us her counts are good, and she feels well, we are good to go.

Few questions I asked the oncologist today:


I know the goal is to get the leukemia kids to achieve remission by day 29. How many kids achieve remission by day 29? The answer is 85-90% of the kids starting chemo achieve remission.

We were warned that if Charly gets sick, she would be admitted to the hospital. Now that we experienced her cold last month, we know that isn't true. I asked what factors make them decide to admit her if she's sick, and on average, how many hospital admissions does a typical leukemia patient have during treatment. The answer is: it's all count dependent. If her ANC (her immunity levels) are higher, they may just give her IV antibiotics, and send her home for us to take care of her. If her ANC is low and she's running a fever, she will most likely be admitted. Typically, a leukemia patient has 2-3 hospital admissions during their chemo treatment. They keep the child there until they are sure the reason for the fever is viral and not bacterial (with blood tests and microscopes).

The oncologist warned me that while it is good to avoid known sick people and large crowds, they have found that the danger comes from the patient. They need clean behinds, clean bodies, and clean mouths. The most serious ailments occur from bacteria from the patient's body. That's why they want Charly bathing daily and brushing her teeth 3 times a day.

After her chemo, we met Aunt Heather and Aunt Elisa at Gardner Village. We spent an hour with them, then ran home to pick up Naomi after school. After meeting up with Naomi, Charlotte wanted to go outside and ride her bike. We spent the next hour circling the block with Cooper McDaniel and the Hurtado kids. To keep up with them, I had to pull out my bike and ride along. When I told her I needed her to stop so we could go in and make dinner, she refused. It took another 3 circles around the block before she agreed to get off the bike and play with Tasha Hurtado while I cooked dinner. It's now bed time, and so far no signs of jaw pain or nausea yet. Knock on wood.

Our Dancin' Queens

This song/dance apparently was played multiple times at the Jr. High Dance last week.  Naomi says it's because ALL the kids love to dance it.  Frankly, I couldn't stop laughing.

sorry, it's sideways.  I was paying more attention to being sneaky than thinking about what I was doing... and I'm not smart enough to figure out how to rotate it.  ANYHOW.  She's stinkin cute!

Holiday Hats

Modeling Aunt CoDele's Christmas creation. See the fun Santa button?

Another hat from Aunt CoDele, I love this one's nubby circles on the alternate strips.

Same hat, different funny face.



Aund CoDele sent a fun build your own halloween mansion. We had to put it together immediately!



Halloween hat needs to have a Halloween mansion included



See the ghost buttons around the hat band? Thanks Aunt CoDele!

 

We had to show off the ribbons on the top. It's fun to shake your head and make them flop around... I'm lucky this wasn't more blurry.

White Blood Cells Are Cute!

Thanks to my coworker Valinda for the super cute White Blood Cell! Amy and Valinda found this little guy while perusing a bookstore at University of North Carolina last week.

Charly with her new white blood cell.