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.”