Wednesday, April 20, 2016

Induction - Day 15

Yes, I know. Two posts in one day!

Ellie is at the hospital right now receiving her next chemo treatment, so I have some time on my hands.

In the waiting room.

We are officially half way through the induction phase, her first month of treatment. Only 14 more days of steroids, and then (hopefully) she will never be on them this intensely again.

Ellie has regressed slightly; her numbers were very low today. To be honest, this wasn't a huge surprise. She has been looking pale and ran a low grade fever for about an hour on Monday. In addition to the chemo drug (Vincristine) she will also receive platelets today. Her platelet type is a bit rarer, so the hospital does not always have them on hand. (We learned this during our hospital stay.) So, now we are waiting on them to come from St. Petersburg before they can be administered. I'm not sure how long we will be here today, but we are both happy and content. I have nothing else to do that is more important than this, so I am happy to wait. 

Now that we've been through the process, I thought I would explain how a day like this goes. (For now, anyway. Maybe it will change in the future.)

Ellie wakes up and has a normal morning. Snack, antacid, steroid, play, breakfast, get dressed, play. Right before we leave, I put a numbing cream over Ellie's bump (her port under her skin), with cling wrap on top to help it soak in. We then leave for the cancer clinic at St. Joseph's Children's Hospital.

Once we arrive at the office, they take her vitals, and then a blood prick. This gives the doctors and nurse practitioners her "counts". The ever important numbers that at this point basically let us know how she's improving and how fragile she still is. They can go up, they can go down, just as long as overall they are trending up. 

We will usually meet with the nurse practitioner (there are two, and both are wonderful) and go over in depth everything that has happened with Ellie since the last time she was seen. Pain, bruising, medicine tolerance, strength, sleeping, attitude...everything. At that point, we have Ellie's CBC (complete blood count) results. This lets us know if she is in need of any additional blood or platelets. 

After that, we move from the "office" to the "clinic". This is where drugs are given. We are basically in a very small hospital room, and she is treated as such. This is good. Anything she needs, she can get! Her port is now accessed. With the numbing cream doing it's job, the needle is placed into her port with only a little bit of crying from Ellie. A few minutes after, she has forgotten all about it. Then she gets her chemo drug and if needed, blood and/or platelets. Once her infusions are done, she can go home!

As mentioned, today Ellie's counts were very low so she needs platelets. Chemo is finished and she is currently sleeping. We are still waiting on the platelets. Her checkup also revealed that she has an ear infection, so she will be put on an antibiotic. Her gums are a bit red, which could be an indication of mouth sores to come, so we have been given a mouth wash to help with pain should that problem arise.

Ellie has done great today! She is happy to sit and play with play doh for as long as I'll let her. Each time we come to the hospital, she is given a slew of things to occupy her. 

Getting ready for a nap.

And....she's out.

Everyone we have met is so helpful, and it really has made this process easier. I never feel rushed and always feel welcome to ask as many questions as I need to. And to make it even easier, the hospital is only 15 minutes from our house. In the midst of a truly terrible time, there are so many things to be thankful for. This is just a few of them.

However, in the interest of complete honesty, it saddens me to say that it's happening...

Ellie is losing her hair.

It's a very small amount, just strands at a time, but it's happening. This morning while sitting on the couch with her, I stroked her hair and when I pulled my hand away, I pulled four strands with it. Every time since, the same thing happens. It's not unusual for it to happen this quickly, but of course, we hoped that we would have more time. The nurses said that the finer the hair, the quicker is goes. Ellie's hair is very fine, and there's not much of it to begin with anyway. So, I'm not sure how quickly this will all play out, but I will keep you updated. 

It's not uncommon for hair to come back completely different after chemo treatment. What was once straight blond hair could turn into curly brunette hair. With that said (and being the picture nut that I am), should I get pictures of Ellie before she loses her hair? I fully intend on getting pictures once it's gone, because let's face it, that's going to be her "look" for a long time. But, do I need them now? Am I being crazy? (In addition to various other things, this is one thought that's been running through my head since she was diagnosed.) 

Anyhow, this is where Ellie is at right now. A very tiny bump in the road, but overall she is doing well. 

Please continue to pray for Ellie's complete and permanent healing.

Pray that she gains the positive side effects of the steroids (strength and weight gain), and looses the negative ones (mood swings and insomnia).

Pray for Eva and Nora. Overall they are well, but still have emotional moments. 

Pray for strength and restful sleep for Mike and myself. 

Update: Ellie and I were at the hospital for 9 hours today. Much longer than expected, yes, but also a blessing in disguise. Through a series of events, which stemmed from us staying all day, it was discovered that Ellie had been sent home from the hospital with the incorrect steroid. The doctor and nurse practitioner assured me that she is fine, it was simply a "milder" steroid than what she needed. The good news is that the problem has been corrected and Ellie will be fine. The bad news is that she is now on a stronger steroid and her side effects could worsen. 

Please pray that the negative ones DO NOT return, and that the positive ones DO begin. Ellie has lost some weight, especially fat and muscle mass in her legs. I don't know how else to say it...but even though she is regaining strength, her legs looks sickly thin right now. 


  1. Hmm as a girl, I usually prefer photos when I'm cute and healthy. ..probably don't stress on getting hair photos. have solved great photos of her from right before all this happened. =)

  2. Oh Jaclyn. I'm praying so hard for your Ellie and for your family. You've been on my mind and in my heart since Katie told me the news. I say get pics of Ellie. Some sweet sister shots. :)

    1. Thank you so much for your prayers Melissa. And yes, I think there are going to be many pictures in the future!