29th Day Appointment



Ice cream and a blood transfusion

 Today was the 29th day appointment, which included another lumbar puncture and a bone marrow aspirate. We will hear the results next week - probably Wednesday. Today also marks the end of the steroids. Hooray! The steriods have so many bad side effects. The bone pain, the acid reflux, water retention, high blood pressure, and the constant craving for food. It was my guess that Charly gained about 10 pounds, today's appointment showed she has gained 7 pounds since last week. It will be nice to see Charlotte not be so desperate for food. She has been constantly ravenous.

Since she was having surgery today, we were told she couldn't eat after midnight. After some discussion, Sean decided to wake Charlotte up to eat before the cut off time, in order to soften the blow. Charly has been getting up 2-3 times a night for snacks. Usually a slice of toast and a glass of milk. Thankfully, she is old enough to understand it was very important she NOT eat without mom and dad saying it would be okay. If she wasn't so good about obeying, I would have had to sleep on the kitchen floor to stop any midnight snacking.

Our clinic time was at 10:30. They took her blood and ran some tests, but no chemo today. Then Charly and I went downstairs at 12:30 for her surgery. The entire procedure took less time than it took me to run to the pharmacy at the other end of the hospital and order a refill on her antibiotics. Since they said it would take 20 minutes to fill, I decided to go back rather than wait. I stepped outside to call Sean to warn him we would be late because they wanted to give Charly a blood transfusion (I have no cell coverage in the hospital). I detoured for 2 minutes for an apple and a Dr. Pepper at the cafeteria.

By the time I was back, Charlotte was awake again and chowing down on a bag of Doritos like her life depended on it. Being refused food had already resulted in tears multiple times this morning. Thank goodness for the book of mazes and dot to dot puzzles that the McCune's dropped off. She spent time puzzling them out to take her mind off her hunger. Doritos were followed by a snack pack of Oreos. Then a walk back to the oncology unit for more blood. Thankfully, Charlotte was allowed to order a tray from room service. She snapped at everybody who tried to talk to her. Recent history assured me that once she got something to eat, she'd be her pleasant self again. After Kraft Mac 'n' Cheese, broccoli, and mashed potatoes, her equilibrium was almost restored. Hearing the boy next to us order an ice cream cone, she also asked for a cone as well as cheese and crackers. Then she wanted a soft pretzel, but the nurse apologetically told her that they could only ask for 2 trays from the kitchen per patient. The nurse went to get her a bag of crunchy pretzels from their snack station, Charlotte started to cry quietly and vehemently whispered, "why didn't you warn me that was my last tray?"

Usually, the doctor explained to me, they wait a few weeks after the patient has successfully finished the induction phase of chemo before they start on the consolidation phase. To know if we are ready for consolidation, Charlotte's lumbar puncture and bone marrow aspirate figures have to be where they want them to be. If they aren't, we may continue the induction phase of chemo for a few more weeks. Also, the doctor warned, if her counts ARE where they want them, usually the patients need some time to recoup and get their immune system back up before they can start consolidation. That's when the nurse brought in the most recent blood counts. The doctor's eyebrows raised to see her ANC levels at 3400. "Wow, if she continues to be this good, we may start consolidation without any recouperation time!"

Her hemoglobin was low again, so they ordered another blood transfusion and gave her a drug called Lasik because her salt levels were low. With the water rentention from the steriods, they said that was normal, but the Lasik will help her get rid of the extra water. The clinic staff warned me that she would be needing to use the bathroom frequently the next few days. Heeding the warning, we made sure to take a potty stop right before we left. Of course, half-way home Charlotte whimpers that she needs to go right NOW! At the same moment, I pass the last exit on 215 until I get onto I15 and the traffic is all red lights. I start pleading with Charly to hold it for just a few more minutes, and yelling at traffic to MOVE!! We were moving nowhere. I told Charly if she couldn't hold it, I wouldn't tell anyone. There really was nowhere safe to pull off and let her go on the road side. I finally get to a gas station, pick up my girl and run through the front doors "BATHROOM!!!!" The teenager behind the counter points the direction, and the ladies room is occupied. I head for the men's room and the door is locked! I had to run back, juggling my baby to grap the nasty key from the previously mentioned dimwit behind the counter. We made it. All I can think was how nasty it was we were in a gas station restroom with my immunocompromised daughter. YUCK!

We finally made it home just before 5:30. Charlotte and I are wiped. I sat down and ate the apple I never had a chance to eat earlier. I was so GRATEFUL when the doorbell rang and our sweet neighbor brought us dinner. Charlotte ate and is now passed out in bed.

Love to all. I will let you know when we hear the results.

Four Weeks

Tomorrow we bring Charlotte in for her 2nd bone marrow aspirate and her 3rd lumbar puncture. This will mark the 4th week of her induction cycle and hopefully show positive results in how the cancer has reacted to the chemo/steriods.

Charlotte's Photoshoot

Here are a few shots from Charlotte's pre-hair loss photoshoot we had done after her diagnosis and start of chemo.

She looks so grown up!



August 15 - We took these before her haircut. Her hair started falling out the day before.



You can tell she's starting to peter out after 20 minutes at the photo place.





Taken 2 weeks from our professional photos exactly. Don't know if you can see the weight gain. I'm guessing it's over 10 lbs, which would be a 20% weight gain. Those steroids!!

 

Naomi Cheering At Her First Game

I’m tired. But I enjoyed sitting on a hard bleacher for an hour and a half and watching Naomi cheer. She keeps pulling faces…that’s how I know she’s my girl.

You can watch Naomi cheer too... just click on the videos below.

Friends

Charlotte and her buddy Cooper playing the Wii

Charlotte and her buddy Cooper werew playing the Wii. The steroids make Charlotte gassy, and she lets one rip while they are playing. Naomi looked at me, horrified. Cooper calmly says, "I sometimes toot like that too" and they continue on.  I LOVE that little boy.

Another Chemo Update

The word from today's chemo session: Charlotte's red blood cells went up on their own, so she didn't need a transfusion this week. Must be all that meat she's been eating. Her blood pressure has also increased, unhappily, so they have increased her blood pressure medication. Just one more week on steroids, then hopefully the moodiness and the high blood pressure will disappear. Just learned 7th Graders are called "Sevvies" by the older classmen. Tried calling Naomi a Sevvie today, and was told not to do that. Hmm, I'll think about it.





These are our science guys that work at our non-profit dental research organization, CR Foundation. They are a group of college age guys who are finishing their bachelor's with plans to go on to dental school or other master's programs. They all decided to visit Charlotte and bring her some gifts. Most notable, they decided to shave their heads in support of Charly. Makes me all sniffily.

  

A Little Humor...

I really can't go on without sharing the funny side effect of steroids...hunger.

It began about Naomi's birthday. Charlotte would begin to list what she wanted to eat at the next meal while she was still eating her current meal. The nurses warned us that some children wake their parents at 2am, wanting to eat. More than a few suggested we pack a snack next to the bed. Charlotte returned home excited to pack a snack at her bedside. She chose a granola bar and fruit snacks. The next morning, she mournfully says to me, "I did not wake up to eat my snack!"

Most of the hunger/cravings seemed to be in her head. Once presented with the food, she would eat a few bites and then she would stop and rest. Monday, we had a few neighbors stop by with treats and presents for Charlotte. As she munched on a Rice Krispy Treat, she looks me in the eye and says, "You want to know why I was sad when I looked at the present, mom?"

"Why were you sad?"

"Because I was hoping that somebody was going to bring me meat."

"Meat!?!"

"Yes" huge sigh and big doe eyes "I really want a Big Mac."

"A Big Mac?"

"or a taco... from Del Taco"

Charlotte's been on a fast food ban. The dietician stressed that while her immune system is low, fast food and eating out should be avoided. By Charlotte's reaction, you would think she hadn't been fed in years. Where she had just had a portion of chili and spaghetti.

The next morning, she caught me getting ready for work around 5:45am. She wanted to order breakfast. "I would like 5 pieces of bacon and a toaster waffle, mom." I told her I would give her 3 pieces of bacon. I came out from putting on my jewelry and grabbing my purse to go, and she informed me I overcooked the bacon, making it too crunchy. I did notice that it had not stopped her from finishing 2.5 slices of bacon.

This morning was the first 2am hunger call. The granola bar still sat on her bedside table, but Charlotte decided she didn't want that. "Mom, I want the ham or turkey that goes on sandwiches, but not a sandwich."

"You mean cold cuts?"

"Yes, and I want a toaster waffle."

"Charly, you ate the last toaster waffle yesterday. There's more in the garage, but don't make me go out there. Can I get you something else?" "Yes, you don't have to go in the cold garage right now. I want Triscuits with cream cheese on top...and a piece of toast... and don't forget the ham."

Charlotte gets her snack, and starts heading to my room to watch cartoons while she ate. I told her no way and took her back in her room, and stayed with her while she ate and talked about what she wanted to eat next. "Mom, can you find out if I can get a Costco Chicken? You know that chicken and broccoli casserole you make, that is my favorite." I promised to try and remember to call the dietician and see if Costco chicken was risky, and when she was finished, tucked her back in and kissed her forehead. As I left, she whispered, "mom, just one more thing I got to tell you" "What's that?" "Tomorrow, after dinner, I want brownies."

Another Round of Chemo Update

Charlotte finished another round of chemo Friday. Her immune system is still extremely low. Her red blood cells are low, and the doctors told Sean that she would probably need a blood transfusion next week. From what we were told, eventually they know Charlotte will start having allergic reactions to blood products. They said it won't be a major deal, they will simple pre-dose her with Benadryl before transfusions once this occurs.


All things considering, things are going well. The worst part is her belly aches in the evening. Usually, a warm beanbag laid on her tummy helps. It's amazing how quickly she is losing her hair. It started Tuesday. Thankfully, I had made an appointment with photographer and we took photos Wednesday. Afterwards, she had her hair cut into a short bob by my mom. Mom warned me that we will have to shave it when it starts to get patchy. I expect it will be sometime next week at the rate it's going. Charlotte brushed her hair behind her ear yesterday and held out a small clump of hair to me - "my hair is like a Truffula tree". (Charlotte has been watching the Lorax movie a lot this week)


Dandellion fluff for hair, three weeks exactly from diagnosis.

Naomi starts 7th grade Monday. I took her in for a manicure and a much-begged for an eyebrow wax (I told her she would have to wait until Jr. High). Thankfully, she didn't scream. By the way she timidly asked the beautician if it would hurt, you would think she hadn't been incessantly bugging me all summer to get her brows shaped. I took Naomi to her open house Thursday evening, and her teachers seem very nice. She will be taking Drama; Art; something called CTE, which seems to be Home Ec; and creative writing. Her creative writing teacher is also her English teacher. 6 of her teachers are guys, and she is a little curious how that will be, as she has only had women teachers.

Thanks again for all the love and concern coming our way. We wouldn't be able to do this half as well as we are without everyone supporting us. I expect there won't be any signifiant news until the end of the month, when they review Charly's second bone marrow test and tell us the next stage in her treatment.

Hats

Online hat shopping with Charly this evening. Considering how fast her hair is coming out, we ordered a couple so she can decide if she will enjoy wearing hats, or if she will decide bald is beautiful.

Trying out one of Naomi's old hats, this one fits.

Naomi hat

Trying on some of Mom's fun hats.

I think it's too small. NO MOM! It fits!

Mom found this last year. "It's nice and soft, and my ears are warm!"

Seventh Grader

At 7th Grade open house with Naomi. Picture quality is due to a stinkin 12 y.o. Trying to shove my camera phone away. Sigh. My little girl is all grown up.

Charlotte's Haircut

Hair started falling out yesterday, so we are at Grandma's to get a short haircut.

Snip, snip

All done. It kept coming out as we trimmed.

Professor Charlotte explains cancer

After coming home from work, I decided to convince Charlotte to join me in the front yard on top of a picnic blanket with some coloring books. It took unveiling a can of Pringles, but she finally agreed to go outside - something she hasn't done for weeks.

Mady, Cooper, and Lily joined us as we colored, and Charlotte decided to explain her cancer to the McDaniels.

Professor Charlotte: "First there is the platelets. They are like Spiderman. They shoot webs to heal cuts. I don't have a lot of platelets, so they gave me some in a tube into my body. Then there are White Blood Cells. They are like PacMans, eating germs in your body. My White Blood Cells are being couch potatoes. Then there is Red Blood Cells, they carry oxygen so you have energy. I had to get some of that put in me too."

Cooper: "Can I have some of your Pringles?"

Charlotte: "No! Mom says I can't share food anymore!"

Naomi's 12th Birthday and Charly's 2nd Chemo

Today was our first return to Primary Children's since our discharge Monday. It was also Naomi's 12th birthday. It is only because of our friends and family we were able to pull of both.

Naomi already had planned a party where a Mary Kay lady showed the girls how to take care of their skin and properly apply makeup. Naomi was accommodating about reducing her guest list slightly. Kristen, our Mary Kay specialist, and Ashly helped Grandma Moore juggle 6 tweenage girls. By all accounts, the party was a great success.





Charly and Grandma work on crafts in mom's room while Naomi's birthday party goes on in the family room.

Meanwhile, Sean and I took Charlotte for an appointment at 8:30am at PCMC for chemo and another spinal tap (also called a lumbar puncture or "LP"). Chemo went relatively quickly. We were done by 10. Then we brought her downstairs to the Rapid Treatment Unit. They put her out for her LP with general anesthesia, and they were done within 15 minutes. Charlotte quickly regained consciousness and woke up happy and high as a kite. She chattered on and on, making the nurses giggle. Since she once again skipped breakfast, she chowed down a bag of Cheetos in 2 minutes flat. Then she got a bag of Goldfish. Her platlettes were low, so the clinic doctor decided it would be best if she received a transfusion before going home. We went back upstairs to the Oncology clinic for the transfusion. Since it was now going on 11:30, they allowed her to order a tray from the hospital kitchen.



The past few days Charlotte hasn't been eating much. Her jaw has been very painful for her, and she has been reluctant to eat. They said the jaw pain is a known side affect of the chemo. However, they also said that the steroids she is on was going to affect her appetite, and she would be eating more than a grown man. Today was the first we have seen the promised "carb craving". When ordering her lunch, she requested a taco, a baked potato, and rice. Mom thought that was a little much, so we just got a taco. After she finished the taco, she was still hungry and ate a bag of Doritos.

We arrived home only a half-hour late for the party. Grandma Moore gratefully left the tweens to spend time with Charlotte. Mitch and Deb stopped back here on their way home from California to Virginia. They came at the perfect time. Sadly, they head home tomorrow morning.

Chemo will continue every Friday this month, ending with another spinal tap and bone marrow sample taken at the end of the month. How her numbers look at this point will tell us where we go next.

For those who are inquiring about school, it definitely looks as if Charlotte will be home schooled for the entire 1st grade year. Her ability to fight off infection is compromised by the cancer, and the chemo makes it worse. Until her body has a fighting chance, she will stay home. I am hoping everything goes great, and she will be ready to go back in time for 2nd grade. We'll just play it by ear.

Now, I must go. Charlotte is demanding green beans to go with her Chicken Alfredo.



Our first chemo appointment after leaving the hospital. I dressed her bear to match her. 2 minutes later, the outfit was removed. Charlotte was disgusted because "Happy is a boy, MOM!"





Heading Home

SEAN: Update on Charlotte: Great news! It looks like she may be discharged today around 4pmish! Once home she will continue on her medications and we'll be watching her closely. So thankful for everyone and your support!

SEAN: Charlotte is back at her home sweet home. She didn't eat much, but we did manage to get her two evening meds down. Since Charly has a compromised immune system, we have to keep our home stocked with Lysol, bleach, hand sanitizer, etc. Infection control is just one of the many things we'll become experts at to keep her safe and healing. Additionally, we're going to become very familiar with all types of chemo drugs and weird medical jargon.

ALYCIA: Finally, after 4 hours, Charly's discharge was finalized and we came home from the hospital. This will ultimately be a 2-3 year fight, with hopefully the most difficult being these next 6-9 months. Everything is dependent on how she responds to the chemo and the meds. She has already started chemo - right now it's 2-3 different meds that are classified as "Chemo". Then we have another half dozen to go along. Steroids (or "Scare-oids" as some of the nurses call them) are taken these next 30 days to increase the effectiveness of the chemo - vincristin (I'm spelling it wrong, but I don't want to get up and dig through the 300-page information booklet to get the right spelling). The steroids have caused Charlotte to have high blood pressure, so she's taking a med to get that back down. The steroids also cause acid reflex, so she has another med for that. We have Tylenol and something else for pain. Mostly she is complaining of headaches - a side affect of the steroids and high blood pressure - and jaw pain - that is a side affect of the chemo. We have Miralax - because the chemo will make her backed up. Another med for upset stomach from chemo. We also have to give her antibiotics every Monday and Tuesday, since she is so susceptible to infection.

I see our biggest daily battle will be to get Charly to eat, drink, and poop. Our biggest weekly battle will be to endure chemo up at the PCMC oncology clinic. Friday we go back up for a lumbar puncture, on top of Naomi's birthday party. My mom and Ashly, our neighbor, are going to back us up to help keep the party on if there is a time conflict. Then the rest of this month has weekly chemo treatments on Friday mornings. At the end of this month, there will be another lumbar puncture and bone marrow sample. What follows will depend on the test results. If her cancer cells are proving resistant, they'll step up the meds. But we hope we will see everything move in the direction we want it to.

Thanks again for the sincere offerings to help. I promise to use you all if something comes up. Today's funny/sad quote was Charlotte's response to dinner, "mom, the smell of that pasta is making my ears hurt!"

xoxo to all. Alycia

“Thanks Jana and the Mills crew! Our new addition is now named Cheeto.”

Our Primary leaders decorated our house for Charlotte's return.

Classification

So far so good, still waiting to hear how her labs were from Fridays surgery, but Charly has been classified at pre-b cell ALL.

Still waiting to hear when we can take Charlotte home. We have been given guesstimates, but it is dependent on lab results from the blood work they keep taking. As soon as her results make the docs happy, Sean and I will get more orientation about the clinic here at PCMC, and we will be allowed to go home.

“Watching Spongebob and finishing up her blood transfusion.”



Full Update on Charly

Just an update on Charly, yesterday she went in for surgery - a second day she was denied breakfast, which she heartily disliked. She hates skipping meals. It doesn't matter if breakfast is eaten at 11 and lunch at noon - there should always be breakfast!

In surgery, they took bone marrow sample/biopsy; a spinal tap to see if the cancer cells where in her spinal fluid, and inserted a central port. Sean and I decided to have them place a power port that rests under her skin. After it heals, she can go swimming and bathe. The central line will stay in for the next 2-3 years, until they deem treatment is done. They require a central line for various reasons: certain drugs cannot be given through a regular IV, they don't have to worry about moving an IV every few days, and the nurses can draw blood from the central port, instead of having a lab person come and draw blood from the opposite arm. Charlotte's biggest fear is these needles, and we can already see how much less fear she has experienced with the central port.

The port is on her chest, and when in use has a small tube coming out from it, taped with a clear dressing. It sticks out about 3/4 of an inch from her chest. The tube has attachments hanging from it that allows the nurses access for blood draws and to give her medicine.

They have been concerned with her uric acid levels and her phosphate levels, they have been higher than they should. If remain high, these factors could lead to kidney damage. They are giving her meds to pull them down, and the uric acid is now normal, but the phosphates are still high. She is limited to 1/2 serving of dairy, which has been hard for her, as she loves her yogurt and cheese and milk and smoothies and ice cream...luckily it doesn't affect this morning's breakfast order - bacon!

Naomi has been at YW camp, and was greeted by Grandma upon her return yesterday morning and told the news. It was very upsetting to her. Mom drove Naomi up to Primary Children's, and I sent Sean with mom home after a night of "hospital sleep" (which means no sleep). Now we don't have to worry about walking one another to the parking garage to find the car. We can have a little more flexibility to work our care of Charlotte out.

After her surgery, Charlotte got a nice dose of oxy, and then sat with her very missed sister as they worked on some of the plethora of crafts dropped off by the Child Life department. "This place is fun mom!" she said after they gave her medicine cups filled with paints and a wooden cat and turtle to paint.

After having dinner together, Angie Drake, one of Charly's pre-school teachers and our dear neighbor, came up to visit for a short while and took Naomi home. Just before they left, our nurse came in and administered the first dose of chemo. A little after, Charly starting getting very lethargic, very understandably, because she hasn't been sleeping well, and I'm pretty sure general anesthetic doesn't replace a good nap. She started running a fever - 101. They informed me that with her compromised immune system, they take fevers very seriously now. If she starts running one, we are to bring her up immediately - even at 2 am if necessary. They took another blood draw for culture and started antibiotics immediately.

The weird fevers that would last a few hours and then break were one of the reasons I took her in. As of this morning, she is fever free, so I'm hoping it was another one of those quick fevers. They'll probably tell me blood test results later this AM.

With chemo, they want her to use the bathroom every 2 hours, as the drugs pass through her system and are released through her urine. They don't want her to hold it too long, because the chemo can start destroying her bladder. So every 2 hours we got to go potty with our IV behind us. Charly's being given fluids, so she is being very regular to request the potty every 2 hours. I didn't need to set an alarm. It's like being back on that newborn feeding schedule. I got right back on being able to jump up and get it done.

They came in every 3-4 hours to check vitals, and a few other times for their scheduled blood draws, etc. Charly drops back to sleep almost immediately.

They keep telling us we can expect to go home in 5 days, which would mean Monday or Tuesday, depending on when they consider the 1st day as starting. Then we will drive back and forth for the chemo treatments. I will be receiving a schedule later. It sounds like we start out twice a week for chemo, then it will go to once a week, depending on results of their blood tests, then monthly, then maintenance.

That's all I have, or can remember right now. For those of you asking, prayers are THE BEST you can give, and we appreciate them greatly. Charly's immunocompromised situation means she's very susceptible to infection. We would like to say no kids at this time, she will not be going to school or church until she can get her levels up to a place where docs say she is not so bad. She is loving her pictures from the Drakes and her friend Ashly Powell, they are currently decorating the wall across from her bed.

Thanks again for all your well wishes, love, and support!

Alycia

Chemo Starts

SEAN: Charlotte is in surgery right now. She was very nervous and somewhat frightened, but thankfully the anasthesiologist put her mind at ease and calmed her right down. Post surgery updates to come as soon as they're done.


ALYCIA: Charly is out of surgery and doing well. She ordered lunch and is asking for a slushee.

ALYCIA: First dose of chemo in!

SEAN: Update on Charlotte: Her surgery went well. She starts chemotherapy today. Naomi just got home from girls camp a few hours ago and just got the news about her baby sister.

Alycia is staying with Charly at the hospital tonight. This may be my last full night of sleep for awhile as Charly will have to be woken up about every two hours during chemo to use the bathroom. Goodnight everyone and thank you for your prayers.

Bad News

ALYCIA: For my friends, we waited to say that last night we were told to take Charlotte, our 6 year old, to primary children's hospital in salt lake. She hasn't been feeling well, so they took blood tests whose results were concerning. They have a prelim diagnosis of leukemia. Tomorrow they will be doing a spinal tap, bone marrow sample and insert a central line. We hope to know what type of leukemia later. I will try to keep info here as I get it. Stuff is flying fast and furious here, but they swear we will catch up soon.

“This was taken very early in the morning when Charlotte was still in the ER and we were all trying to figure out what was going on.”

“Charlie can have anything she wants, and she picks a broccoli lollipop.”