Wednesday, November 23, 2016

Thankful, but not for ulcers

Oh so close to Maintenance, yet still so far. 

Picking up from where my last post left off...Sunday night. Ellie was in such pain that night. After I posted, she threw up again, still just mucous. By the time Mike and I went to bed, it was clear that Ellie was not going to sleep well. So, Mike slept on the couch to attempt a restful night of sleep, and Ellie came into the bed with me. She moaned and fidgeted almost the entire night, only wanting to sleep like this:

Around 3:45am I patted Ellie to calm her, only to realize that she was wet. And so was the bed. And so was I. She had moved around so much, that her diaper was dislodged and so she had peed everywhere. We both got up, I changed her, threw down a blanket on the wet spot and stayed in the same pajamas. Because that's what you do at 4am. She had finally calmed down enough that she was willing to sleep next to me instead of on top of me. So for the next 2 1/2 hours, we both slept soundly next to each other.

I was up early for two reasons. One, Nora needed a chest x-ray, so I had a mission to get her to the clinic at 7am when it opened. Two, I wanted to get Ellie to the cancer clinic as soon as possible that morning and have her counts checked. Yes, that morning was a bit crazy, but it's what had to happen that day.

After the chest x-ray with Nora, I picked up Eva and Ellie and took everyone to the hospital. They were able to get Ellie in that morning for a check up and treatment, if needed. Ellie had been in such misery that we were hoping for something to give her comfort. She had a very low grade fever all weekend, but never high enough to warrant a trip to the ER. She was tired and in pain, but never started bruising indicating low platelets. It felt like she was just barely "good" enough to stay out of the hospital.

Playing at the hospital.
It was a Christmas-jammies kind of day for Ellie.

She had her counts checked, and our thoughts were confirmed. On paper she was fine, but if you looked at her, she looked terrible. It was determined that she had mucositis, basically ulcers all throughout her digestive tract. This explained why when she vomited it was just mucous. Those ulcers were breaking up, releasing the mucous. Gross, I know. And obviously causing Ellie an immense amount of pain. 

There's nothing really that can be done to treat the ulcers, they just need time to heal. In the meantime though, she needed something to manage her pain. Ellie had all but stopped eating. It obviously hurt to chew with the sores in her mouth, but it also hurt to even open her mouth for a spoon or straw. Her pain options were Tylenol with codeine or oxycodone. The first option was easy to come by, but not ideal. If you recall, Ellie cannot normally have Tylenol because we never want to mask a fever. The second option was ideal, but harder to come by. 

So, what did we do? We got both prescriptions and went to work figuring out which one we could get filled the quickest. Our pharmacist was out of both, but was able to find a pharmacy that had the Tylenol with codeine immediately, and promised us that he would have the liquid oxycodone the next day. I was able to drop off the girls with my mom before venturing out for the prescriptions. It was a good thing I did, because I was not at my best that day. When I arrived at the Publix pharmacy to drop off the Tylenol prescription, I was a borderline mess. When the pharmacist told me it would take at least 30 minutes to fill, I lost it. Tears. Messy tears. "It's for my daughter. She's going through chemotherapy. She is in so much pain." More tears.

It was filled much quicker than 30 minutes.

And then I picked up the medication. The pharmacist (different from the one that had witnessed the tears) looked at me extremely concerned and asked, "Did your doctor go over the side effects with you? She JUST turned three, right? This is a narcotic. This is not normally prescribed for a child this young."

Right then, I was brought back to the seriousness of all of this. Yes, she is three. And yes, she needs this severe drug, her first narcotic. This is not right. You see, when you are at the hospital, surrounded by cancer, everything seems ok. "Codeine or oxycodone? How about both!" Then, you escape that world and realize over and over again how not normal all of this is.

"Yes, my daughter had leukemia. She is going through chemotherapy. This is to relieve her pain from the ulcers."

"Oh, ok. I'm so sorry. Your daughter is fine to take this. Just watch out for these side effects..."

So, this is the world that we live in for now. I'm grateful that Ellie had the option of this drug though because it has eased her pain. Today, for the first time in almost a week, she ate more than one bite of solid food.

Half of an English muffin with peanut butter!

When Ellie woke up this morning I heard, "Blood, mamma, blood." She held up finger, blood. I looked at her lips and mouth...covered in blood. She has started picking at all of her sores and scabs. It was quite the scene. There's no picture of that, but just imagine that her lips are some of the worst chapped lips you've ever seen.

Oh, that reminds me. Bad cancer mom confession here. When I get Ellie dressed for hospital appointments, it is all about what she wants to wear. It is never about what is convenient as far as accessing her port. I want her to feel as comfortable as possible, so I let her pick out her clothes every time. This morning she was having trouble deciding on a top, so I offered her some options. She grabbed one shirt and said to me, "Oh no mama, this one isn't good for my port." It amazes me what she picks up on and how much of her life revolves around thinking about that sort of stuff.

Ellie was scheduled for more chemo today. Her last treatment before Maintenance. But alas, it was not meant to be. Her counts were good, but it was those pesky ulcers holding her back today. If she were to receive more Methotrexate, the ulcers would just get worse. We let her heal some more, and then go back on Tuesday and try again. 

Ellie in her "kites".

This is a blessing. Tomorrow is Thanksgiving and we so desperately wanted Ellie to be as strong as possible. She will be dealing with her ulcers, yes, but at least it won't be ulcers AND chemo. We are hosting Thanksgiving at our house this year, and while it may sound crazy, it will be easier on our family. We are really looking forward to spending the day with lots of family and love.

If you don't hear from us again tomorrow, have a very happy Thanksgiving!

Much love from the Yorks.

This just happened as I was editing.
"Snuggle up."
Oh, and yes, her lips are SO much better this evening.


  1. I went searching for your blog after seeing you won Courtney Vickers Photography session....and reading you have a blog. I'm praying for your precious baby girl and your entire family! I'm so happy you won the photo session, Courtney takes amazing pictures!! I hope your daughter is feeling better from her ulcers.

  2. Hi! Thank you so much for taking the time to comment. I don't ever recall "winning" anything...ever. So this is incredibly exciting! I've seen Courtney's work and am so excited to meet her. Ellie is so much better now. The ulcers are healing!