Saturday, May 6, 2017

Ellie is One Year Cancer Free!



















One year ago today we got the call that Ellie was cancer free! Induction was successful and removed all traces of leukemia from her body. The process since then has been overwhelmingly difficult, but we are happy to say that a year later there are still no signs of cancer in her body. We are so thankful to our Heavenly Father for carrying our entire family through this time. So many things have been orchestrated by Him, and for that we are grateful.
Ellie is exactly half way done with her treatment. She was diagnosed on April 2, 2016 and will finish treatment on June 9, 2018. Today is May 6, 2017. If you do the math, today marks the beginning of the second half of treatment. Ellie is still on daily chemo, visits the hospital every four weeks and gets a lumbar puncture every third visit. Her treatment is intense, but we are hopeful that the second half is better than the first.
Thank you for your continued love, support and prayers for Ellie and our family. We are so excited to celebrate this milestone today, but are also acutely aware of the families that we have met along the way that did not have the same outcome. Although we never met Emmi Grace, Zion or Nolan, we grieve the loss of these children. I can assure you that we will never forget them.
This experience has changed our family. Some ways are obvious, others we cannot quite yet verbalize. We are still trying to navigate this world of pediatric cancer and find our place in it. As I have previously stated, we will never un-know pediatric cancer. It is a part of us now. Although I would never wish this upon anyone, I am grateful for the lessons that I continue to learn. My hope is that all of our girls learn how to be empathetic, caring and proactive in an increasingly unfair world. More often than not, I feel like I'm not doing enough to enact change. I suppose awareness is the first step.
So, to wrap up this surprisingly long post...we are hopeful. From this day forward, the treatment that is behind Ellie will greatly outweigh the treatment that still lies before her. She is loving, silly and funny. She annoys her sisters exactly how a three year old should. She thinks she is bigger than she is and wants to do everything Eva and Nora do. She is thriving. She is alive.
We do not take that for granted. Not even for a second.

Tuesday, May 2, 2017

Pet Therapy with Parker

Pet Therapy at St. Joseph's Children's Hospital of Tampa is something that Ellie loves to experience while receiving chemo at the Infusion Center. We are so grateful to all of the volunteers that make these visits easier. A special thank you to Cindy for bringing Parker for Ellie to play with, and to FOX 13's Linda Hurtado for sharing this story.
Here is a link to the news segment aired this evening.
http://www.fox13news.com/news/local-news/252185532-story#








Give Day Tampa Bay




The past several months have been difficult to explain. A year later, our entire family is still processing Ellie's diagnosis, each in our own way. Our emotions vary daily, sometimes hourly.
There has been wellness but also a lot of sickness. Ellie is well. She has not had to be admitted to the hospital in over six months. The leukemia shows no sign of returning. Ellie is sick. She has had the flu, almost consistently, for over two months now. Due to a spiked fever, last night was spent at the ER. Again. For the third time in 8 weeks.
I haven't written in a long time because I don't know what to say. I still don't know, but I figured it was a good time to check in. In this case, no news is good news. Ellie is fine, but we are all weary.
Perhaps you've seen on your social media feed that today is Give Day Tampa Bay 2017.
If you feel so inclined, please donate to one of the many organizations that are right here in Tampa Bay. There are so many wonderful ones to choose from, and a couple that have even helped our family during this difficult year. But, if I had to narrow it down to one, I would ask you to donate to Beat NB. They are funding trials for neuroblastoma, and although this was not Ellie's diagnosis, this is a form of cancer that does not have a clear cure. They need funding for these trials to help other children that aren't as fortunate as Ellie.
Every little bit helps. Even $5. Seriously. The organization that has the most support of unique donors will receive an extra $10,000 bonus.
It really is a simple way to help. Thank you for supporting our family and for helping other families that are going through something far worse.

Sunday, April 2, 2017

One year ago

Today marks one year. There are so many mixed emotions, and I have struggled with what to say. All I can think is...Our family will never un-know pediatric cancer.

Thursday, February 9, 2017

Maintenance

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.