Thursday, February 9, 2017


Ellie made it.....Maintenance!

So, what exactly does that mean? Ellie is now in a less intense phase of treatment, and she will remain in this phase until she is done in June of 2018. Maintenance for Ellie will last about 18 months, but it can be different for other children. The best way Maintenance was described to me was this: 

Everything leading up until now has been killing. Killing good cells, but most importantly killing bad leukemia cells that may be trying to come back into her body. This is why Ellie was so weak. Her body was constantly being attacked. The drugs were targeting so many things in her body, particularly rapid growth cells, like hair. But now, the drugs have a different task. They are to re-program her cells. Her treatment is now focused on making sure that the leukemia never returns to her body. That her cells never create this cancer again. So yes, she is still being  treated constantly, but it is not quite as brutal as it has been. Her hair will grow back and she should not lose it again. This is typically the stage where children are able to go back to school. Her immune system is not so compromised, but we still have to be careful. Life officially returns to the new normal.

This is what we were told. I was in denial about how good it would really be.

After Ellie finished her last stage of treatment before beginning Maintenance, I had a lot of anxiety. It was wonderful that Ellie was finally starting to feel well again, but I did not know if it would be short lived. Everyone that knew what was coming told us how much better Maintenance would be, but I didn't believe it. What if Ellie had a difficult time with this phase of treatment? That was going to be a long 18 months. 

She was scheduled to begin right before Christmas, and that brought worry too. What if things didn't go well? On top of it being a bad year, what if it was a bad Christmas too? December was a hard month. On top of all of the worry that came with Ellie's treatment, there were some other minor health problems that needed to be dealt with concerning other members of our immediate family. 

Now, many weeks later, I am finally able to write about everything that has happened. And I am thrilled to say that Ellie is doing so well! Our new normal is here, and it is not as bad as I feared. Ellie is 2/3 of the way through her first cycle (more in that in a moment) and she has handled it all so well. We are so happy! 

Here is the breakdown of Ellie's treatment for Maintenance.
Day 1: Intrathecal Methotrexate (lumbar puncture), Vincristine via port
Days 1-5: Dexamethasone (steroid) given orally
Day 8: Methotrexate given orally
Day 15: Methotrexate given orally
Day 22: Methotrexate given orally
(This basically now repeats itself twice, but without the LP)
Day 29: Vincristine via port, Methotrexate given orally
Days 29-33: Dexamethasone (steroid) given orally
Day 36: Methotrexate given orally
Day 43: Methotrexate given orally
Day 50: Methotrexate given orally
Day 57: Vincristine via port, Methotrexate given orally
Days 57-61: Dexamethasone (steroid) given orally
Day 64: Methotrexate given orally
Day 71: Methotrexate given orally
Day 78: Methotrexate given orally
Days 1-84: Mercaptopurine given orally
Day 85 starts the cycle over and becomes Day 1 again.

Then, this entire (almost) 3 month cycle will repeat itself until Ellie is done with treatment on June 9, 2018.

I know that seems complicated. But, we've now settled into a groove, and it is not so bad. Basically, she goes into the hospital once a month, and every third visit she gets a lumbar puncture. The rest of her chemo is given at home. 

One huge source of anxiety for us was just that: the daily chemo at home. This seemed so daunting, and still is to some degree. Basically the majority of her treatment has now been shifted to us. We must be on the ball. Ellie's success directly depends on it. I am happy to report that so far it is going extremely well. Mike is amazing, and takes care of it every single day. The daily chemo Mercaptopurine or 6mp is rather fickle and difficult to digest. Because of this, it must be taken either 1 hour before eating or 2 hours after eating. Nearly impossible for a 3 year old, right? Every child is different, but we have found what works best for Ellie. This chemo drug can be a liquid or a pill. Almost everyone we spoke with said how much easier the pill is. Get her to pill swallow! Life will be so much easier! However, we have chosen the liquid route. Due to the food restrictions, we have found that we can give the medicine to Ellie after she goes to bed. Her stomach is then empty and any nausea she might experience isn't realized because she is asleep. The first couple of nights were tricky, but now we can give her the medicine in a syringe and she never even wakes up!

Needless to say, all of my worry and stress has been for nought. Now, I am not ignorant enough to think that it will all be this easy. I know that there will continue to be bumps in the road. But I will say that everything seems much more manageable. WE still have to be diligent with her care, but everything isn't so....sensitive as it was previously.

Now that you know exactly what her treatment looks like, I thought I would share about that first visit in Maintenance. Ellie went into the hospital on the Tuesday before Christmas for her LP and chemo. As usual, it was a very long day, but there was a huge bright spot at the end!

Before Ellie went to the Day Hospital for her LP, she had her clinic visit to check blood counts. She was strong enough to begin Maintenance! We spent some time handing out Christmas cards and homemade biscotti to everyone in the clinic and infusion center. Ellie also had a special gift for one of the Nurse Practitioners who is expecting her first child. Her very own, brand new Diddy! 

The two Diddys had to kiss each other.
Also in the picture, Lamby. A now permanent fixture along with Diddy.

After gifts, it was time to head to the Day Hospital to wait for Ellie's procedure.

The procedure went without a hitch. I knew she needed to nap, but I was so anxious for her to wake up for her surprise!

About a week prior I signed up Ellie for a program called Apple A Day. This is a wonderful, local organization that provides children with life threatening illnesses a brand new iPad. Ellie was a little groggy at first, but quickly warmed up to the idea of her own "pink iPad".

Two wonderful women that volunteer for this organization came to meet Ellie and present her with the iPad. I was so impressed with the time and care that they took with Ellie, really trying to understand her situation and get to know her. It was a wonderful blessing for Ellie in so many ways! We are so thankful for organizations like this to help make Ellie's treatment a little bit easier. 

This is Ellie's iPad. Not her sisters' and not ours. They have to ask permission to Ellie to play with it, and of course Ellie has to ask us permission to play too! (Which is a constant question.) I completely understand that there may be a little bit of an eye roll when it comes to a three year old having their own iPad. Trust me, I get it. But here's the thing...when the situation warrants it, this device is absolutely necessary. Not only does it keep her occupied during long hospital visits, but it keeps her from touching things! If we have to go out anywhere, I take this with us for Ellie to use. Playing on the iPad keeps her from doing other things that could potentially get her sick. So yeah, our three year old has her own iPad, but we're ok with it. 

That day went well, and so did the days that followed. Ellie did great with her new treatment, and so far the steroid pulses aren't so bad. We had a wonderful Christmas together at home as a family. 

Your prayers are definitely welcomed. We know that they are helping Ellie ease into this course of treatment. Thank you for the continued love and support that you have shown our family.

1 comment:

  1. So proud of Ellie - What a huge milestone! You are all in our thoughts and prayers.