Thursday, September 8, 2016

Second Half of Delayed Intensification

Ellie made her counts on Tuesday! This was such a huge relief, as now she can move forward with her treatment and get through the rest of this difficult period. I just want this part to be over. Each day that we are able to move forward gets us closer. 

One high point to this week so far is that Ellie was able to avoid the overnight hospital visit. We worked with her doctors, got her there early on Tuesday, and after her blood counts were confirmed to be high enough for treatment, Ellie began an IV to get hydrated. One of the new chemo drugs that she received can cause kidney problems. To avoid any complications, she had to be extremely well hydrated before getting the drug, and monitored for 3 hours after where her urine was also checked. It can be a very long process, hence the reason why it is usually an overnight trip. Ellie pushed the limit with each milestone along in the day, but we were able to go home that same night. 

An example of her stubbornness that day... Ellie received a lot of fluids for her size, in a very short amount of time. Her nurse told me to check her diaper in 15 minutes, because that's how fast she was expected to output urine. Dry. Checking her urine was the only way to determine if she was hydrated enough to receive the chemo, so we had to wait for her to pee to get a sample. Five hours later, she FINALLY peed! By the time that happened, she was writhing in pain and yelling "the pee hurts!" I bet it does, little girl. She then immediately soaked 3 diapers over the course of 45 minutes.

Side note: It is so hard to not treat Ellie like a baby. Not only is she our "baby", but she is also small for her size and mostly bald. So, yes, she still wears diapers and uses a pacifier. She looks like an extremely capable one and a half year old.

That stubbornness made the day last about four hours longer than it should have. Even though Ellie ended up being at the hospital for 11 hours that day, we are still grateful that everyone was able to sleep at home that night. Ellie had her first bit of vomiting due to the chemo in the middle of the night, but fortunately it didn't last that long. She hardly ate anything during the day, so there was not much to come up. 

Picking at my salad, which was all she ate the entire day.

So, to sum up, Tuesday was a very long, hard day for Ellie. Not only was she at the hospital all day, but she received four different chemotherapy drugs that day. Four! That is crazy. This will never feel normal, no matter how far along we get in the process. And, I think that is ok. 

We were back at the hospital the next day for further treatment. We went back again this morning, and will go again tomorrow morning. Next week, we repeat: Tuesday-Friday. One thing that makes this week easier is that we have decided to keep Ellie's port accessed for the four days each week that she receives treatment. It makes the hospital visits much smoother and quicker, but I'm sure that it is causing some discomfort for Ellie while at home. 

Ellie was not happy to go back to the hospital on Wednesday morning.

"This is My Fight Song"
While at the hospital on Thursday, Ellie was videotaped for a local school project.

This long week is almost over. I am so grateful. Next week will be another long week. Ellie will likely become neutropenic again, but this time it is probable that she will also need a blood transfusion. 

Please continue to pray for Ellie's complete and permanent healing. Her prognosis is SO GOOD! It brings us such comfort and relief knowing that at the end of this process, she will be ok. But, it is still so hard to go through it. 

Now, on a lighter note...

Fall Stampede is this Saturday! To everyone that has donated money to the Children's Cancer Center or has signed up to run, THANK YOU! We are humbled by your support for Ellie and the CCC. 

It's not too late to donate. We are less than $200 away from our fundraising goal! Thank you for your continued love and support for our family.

Oh, and somebody, please remind me to take a group picture on Saturday.

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