Wednesday, May 4, 2016

Induction - Day 29

Today is Ellie's first big milestone. Her Induction period is over!

She was sitting on our bed so sweetly this morning, until I tried to take a picture.

This ended up being the best she could give me.

I have been both looking forward to and dreading this day for quite some time. First, let me explain why I was dreading it. 

Three little letters...NPO.

These are these are the letters that no parent with a child on steroids wants to hear. It means that their child is not allowed to eat. For a child on steroids, well, that's pretty much the worst news ever. Ellie had her lumbar puncture scheduled for 11 am this morning, so she could not eat anything after midnight last night. With the amount of food that she's been eating on an hourly basis, I knew that this morning was going to be rough. 

No matter how seemingly trite, our Father in Heaven hears our prayers. Because, Ellie did incredibly well. Really, it was the complete opposite of what I expected. As soon as she woke up, and subsequently asked to eat, I told her that she could not eat or drink anything until later. She was going to the hospital to see the doctor and then go to sleep. I explained that once she woke up, then she could have something to eat. 

Ellie understood everything that I was telling her. I know this because the entire morning she repeatedly said, "I'm tired. I want to go to sleep." And then, she started switching it up by asking, "Where's my bed?" She knew the end result was food! She specifically asked for: hamburger, hot dog, chips and french fries. When she woke up, Mike got her the hamburger, hot dog and chips. Ellie then asked where her french fries were. So, yeah, we had to stop at McDonald's on the way home to get french fries.

At one point she was double fisting with a hot dog in one hand and a cheeseburger in the other. Notice the bag of chips that is next to her too. She is lying down because this was taken so soon after the procedure, that she still had to remain in a flat position. The food could not wait.

She did well with not being able to eat anything this morning, but that doesn't mean she did not have her "spicy" moments. Ellie was the poster child for mood swings today. Literally, one minute she would be giggling with the nurse, and then the next she would be growling at me for having my arm in the wrong spot. Now that there steroids are coming to an end, all of these less desirable side effects should go away.

Which brings me to the reason why I was looking forward to today.

NO MORE STEROIDS! Yes, that is such wonderful news. Unless something were to go tragically wrong, Ellie will not need to be on steroids for that length of time again. She will be on steroids again for smaller "spurts", maybe a week at a time, but certainly not an entire month. Ellie's treatment or "road map" is broken up into different phases, and today was the end of her Induction. She has a little break from heavy medicine for a few days, and she will begin the next phase, Consolidation, next week.

Once Ellie woke up and was deemed ok, she was able to leave the hospital. I think we left around 1:30 pm, so overall, it was not a long day. Mentally and emotionally long, yes. But physically long, no. Since anesthesia gives her a nice nap, she did not want to nap again when at home. So, it was a bit of a cranky day, but nothing Daniel Tiger couldn't fix. (I think Daniel Tiger is the official television sponsor of Ellie's leukemia treatments.) She watched so much today, we got the (embarrassing) "are you still here?" notification from Netflix.

Yes. Yes, we are still watching Daniel Tiger after 6 episodes straight.
Don't judge us, Netflix.

By Friday, we should know how many Leukemia cells, if any, still remain in her body. The goal at the end of Induction is for there to be zero or trace amounts of cancer cells. From there, she will go through different phases of treatment, all to make sure that there is absolutely no way the leukemia will come back. From my understanding, this is pretty intense for the first 5-6 months, with at home medication and clinic treatments every 7-10 days. After that point, her treatments stretch out to once a month in the Maintenance phase, and she stays there for almost two years until complete remission is confidently achieved. 

Everyone tells us that the worst is behind us, but that does not mean that what is to come will be easy on Ellie. This next phase, Consolidation, is 29 days, involves 3 lumbar punctures and daily orally administered chemo. Bye, bye what's left of Ellie's hair.

Now that we are settling into a new normal, we are thinking clearer and our focus is not as tunnel-visioned. We are realizing more of everything that is involved with treating Ellie's leukemia, and one very ugly side of that is the cost. Cancer treatment is extremely expensive. While we are extremely grateful to have health insurance, it does not cover all of our costs. Without going into too much detail, we are discovering that there are no additional government or supplemental insurance programs that we qualify for at this time. Simply put, we will owe out of pocket tens of thousands of dollars for each year Ellie is treated.  

All of this to say, we need help. We know that there are programs out there to help families in our situation. We just need to find them. We are working hard to find these organizations and fill out the necessary paperwork. But if you happen to know of anything that could help, please let us know. We know that any amount, no matter how big or small will help our family with the cost of Ellie's treatments. Thank you.

For everyone that has thought of Ellie at some point this past month and said a prayer, said a kind word, or shared her story, we thank you. 

Family, friends old and new, near and far, strangers, strangers that have already become friends...thank you.

To everyone that has sent us a text, voicemail or email just saying, "Hey, we are thinking of you and praying for Ellie"...thank you.

To everyone that has brought our family a meal or donated money...thank you.

Our family has felt such love over this past month and we are deeply grateful. 

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