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