Saturday, July 1, 2017

How Did This Happen?

Ellie's leukemia diagnosis happened extremely quick. Looking back though, I can honestly say that we were preparing for it for a while. But not exactly how you may think. If you don't mind reading a long post, I will share how Ellie was diagnosed with leukemia and how our family has been protected before and since.

In October 2015, Mike and I made the decision to move from our current home. We had spent the previous two years completely renovating that home, and while we loved it we always knew that we would not stay there forever. After a lot of thought and prayer, we made the decision to look for a new home and downsize. While this did not make a lot of sense to most people, even us, we felt it was the right thing to do for our family. Honestly, who purposefully chooses to move into a smaller home when they have three young children? Still, we felt it was the right thing to do. In hindsight, we can honestly say that it was our Heavenly Father providing for us. 

We live in a painful world. Cancer is not something God sent to Ellie. I really think that it is just a natural product of living on this earth. Along with the good, there is bad, and unfortunately sometimes that is cancer. Still, Mike and I do believe that our Father in Heaven knew was coming. "Hey. Leukemia is coming your way. I'm not going to stop it, but I am going to prepare you now so that you can better handle it when it does arrive." At least, that's what we think God was trying to say to us. 

At the end of 2015, we sold our home (in less than 24 hours after hitting the MLS!), found a new home to buy, and lived with Mike's parents for 6 weeks while the house was renovated. We finally moved in to our new home on January 9, 2016, but had to move out 6 weeks later because of a plumbing issue. We were back in the house 10 days later with entirely new plumbing everywhere. 

During those six months, October through March, somebody was always sick. It was exhausting. Life was already stressful enough with a move and renovation, but on top of that it seemed liked 2 out of 5 people in our family were always sick. I was tired of sickness. Tired of living with current and future renovations. Tired of living with boxes and not knowing where to put stuff in our house that was now 30% smaller. 

What I understand now is that God was preparing us. Although this move was stressful, it was a blessing to us in so many ways. We are now in a home that is smaller, but I like to say cozier. We are with each other more. Eva and Nora share a bedroom. Ellie's bedroom is right next to ours. Which, once you have a sick child, you realize how important it is to be able to hear your child at night and have the ability to respond quickly. We have a pool and a huge yard where our girls can play, climb and run. 

"You are going to be visiting the hospital a lot...I'll make sure you are no more than 20 minutes away.

"You are going to have a lot of medical bills coming your way...I'll make it so you have a smaller mortgage."

"You're daughter is going to need you a lot during the night...I'm going to put your bedrooms right across the hall from each other."

"You are going to be stuck at home for most of the summer...I'm going to make sure your new home has a pool."

Again, more of the things that we felt God was telling us. These are just a few of that ways that we have been blessed during Ellie's cancer. But, in the interest of keeping it real, this is all 20/20 hindsight. At the time...I. Was. Done. 

I was so exhausted by all of the aspects of moving and renovating, and I was certainly tired of all of the sickness. I even told Mike one day in late March, "I am so tired. I cannot even imagine what it would be like to have a chronically sick child."

Oh, the irony. 

Let's move onto the Leukemia...

March came around and Nora got a cold. A nasty cold that lasted for two weeks with a lingering couch and constant low grade fever. I took her to the doctor, and it was confirmed that it was a just a virus that had to run its course. No ear infection, no bronchitis, no pneumonia. So, once Nora was almost done with this cold and it moved on to Ellie, I didn't even think twice about the cold.

Coughing, congestion, low grade fever...Ellie had all of it. She would complain about something, but it was so easy to brush off. When she complained about being tired at 9:30 in the morning, I knew it was because of her poor night sleep from coughing all night. When she complained about her tummy hurting, I knew it was because she hadn't been eating for several days and was probably hungry. This lasted for a week, and I have no regrets about how we handled everything. At that point, there was no reason to suspect anything else might be wrong.

Then, on around day nine, a Monday, Ellie started taking a turn for the worse. Only I didn't notice it right away. That day I took all 3 girls to the Glazer Children's Museum. After we got home that afternoon I noticed that Ellie was walking funny. She seemed to be holding on to things, furniture or the wall, as she walked. She was two and a half at this point, so the fact that she was walking differently was noticeable. I pushed it out of my mind until the next morning. She was starting to complain and still acting funny. Knowing that she had taken several precarious leaps into the ball pit the day before, I figured that she had just sprained her ankle. I began paying closer attention, but still was not concerned. 

On Wednesday my mother in law saw her and commented that her color was off. When you are constantly around someone it's difficult to notice the subtle changes. I took an objective look at Ellie. Yeah, she looked a little yellow/green. I made an appointment to see the nurse practitioner at her pediatrician's office for the next morning. 


Waiting to see the NP. We didn't know it at the time, but Ellie's body
was exhausted from fighting the rapidly multiplying leukemia cells.

Knowing what we know now, this next part is where some may get upset. The nurse practitioner never suspected that anything was seriously wrong with Ellie. Now mind you, I was guiding the conversation...."her sister had a cold...she has a cold...we want to make sure it's not anything worse...oh yeah, she hasn't been wanting to walk a lot." I was there to make sure that there wasn't anything more serious going on with Ellie than just her cold. I was even comforted when she told me that the pain in her legs was likely due to inflammation caused by the virus. Drawing blood and running some simple tests were not even a part of our conversation. I do not put one ounce of blame on that NP for "missing it". Cancer was not even a blip on our radar. 

Funny enough, just a few hours later when I was picking Eva and Nora up from school, I had two separate conversations with other parents, one who is an ER physician and the other who is a nurse. Several months later they both told me that, after hearing me mention Ellie's symptoms, they thought it could be leukemia. But of course nobody wants to say that because 99 times out of 100 it's not leukemia. So why cause unnecessary worry?

Friday was much of the same, with no change in Ellie for better or worse. On Friday evening we went over to a friend's house for a small get together. We ate, the kids swam, and I held Ellie. By this point she just wanted to be in my arms all of the time. I caught everyone up on the progress on the house and our family, yet again mentioning Ellie's symptoms. If I'm going to be honest, I was complaining. I was done with sickness in our family.

The next moment I'm pretty sure I'll remember for the rest of my life. Jen, a friend who had recently moved out of state, looked at me and said, "This is not right. Ellie should not be acting this way. You really should take her to see the doctor again." The conversation evolved and it dawned on me that perhaps Ellie fractured something in her leg. Eva and Nora had both had fractures previously, and neither instance was a traumatic accident. We felt horrible thinking that perhaps Ellie had suffered through a fracture the entire week. Cancer was still no where on our radar. 

It was decided that Mike would take Ellie to the walk in clinic when it opened the following morning at 9am. Eva and Nora had a birthday party that day, so I was going to continue to take them while Mike took Ellie to get an x-ray if her legs.

Or so we thought.

I was not at the walk in clinic that morning, but based on what Mike knew in the moment and what we found out afterward, I will piece it together as best as I can. Ellie was the first patient in and Mike quickly explained Ellie's symptoms to the nurse and asked for an x-ray. Before they could get to the x-ray, the physician's assistant came in to check Ellie. She took one look at Ellie and immediately knew that she had leukemia. She immediately ordered some quick blood tests to confirm her strong suspicion (they did), and very calmly told Mike, "Ellie is very sick and appears to be very anemic. Take her to the emergency room now and show them these blood test results."


The last picture of Ellie before her cancer diagnosis.


We will be forever grateful to Jennifer Moore at Fast Track Urgent Care. Without a doubt, our Heavenly Father made sure Ellie saw the right person immediately. Jennifer saved us many days of frustration, and she did it all in such a calm, yet not overly alarming way. Mentioning leukemia wasn't her place, but she made sure that we got Ellie into the hands of the right doctors that could make that call. 

I'm jumping ahead a bit, but it's worth mentioning. Later on that evening, while we were in the hospital dealing with the news of Ellie's diagnosis, Jennifer called Mike's cell phone. We found out that she had a background in Pediatric Oncology and that was how she knew to run the blood tests rather than the x-rays. It was so touching to us that she thought enough to take time out of her evening to check on Ellie. A year later we returned the favor. I tracked down Jennifer at a new Fast Track and Ellie and I stopped in for a visit. I was so pleased to finally meet her and she was thrilled to see that Ellie was well and thriving! 

Back to Saturday morning, April 2, 2016. As I was leaving the house to take the older girls to the birthday party two things happened: Mike called me with the news that he was taking Ellie to the ER and my brother in law and his then fiance witnessed my emotional breakdown. As soon as Mike said he was taking Ellie to the ER I began crying and couldn't stop, which is not like me. I have been to the hospital as a patient more times that I can count. I have been in the ER as both a patient and a parent more times than I can count. I know the routine and I know it well. When Mike said he was told to take Ellie to the ER, somehow within me, I knew that this visit was going to be different. He tried to tell me that it would be OK and go ahead and take the girls to the party. I couldn't do that. Stephen and Andrea came by to pick something up from our house immediately after I hung up the phone with Mike. They were thrown into the chaos, but ultimately I calmed down. It was decided that Eva and Nora would go to be with Mike's parents, Mimi and Papa, and I would go to the ER to meet up with Mike and Ellie. 

By the time I arrived, Ellie already had an IV, her blood drawn and it was being tested. To be quite honest, from this point forward I don't remember the day very well. The little I do remember is seared into my memory. Within an hour of me being there the doctor came in and said the very difficult words that no one else could say. "It looks like she has leukemia. It could be a cold or it could be leukemia, but it's probably leukemia." It was that blunt. He had to be the first person to say that to us. I cannot imagine how difficult that is, no matter how much training a person has. While his words hit us hard, we were grateful for his honesty. False hope would have made the process much more difficult. To give another follow-up, we have since visited Dr. Matthew Howell for an ER visit and have expressed our gratitude to him for helping us figure out what it was that was making Ellie so sick. His care helped Ellie immediately receive the treatment that she so desperately needed. 

While we were receiving this news, my mom was already on her way to bring us lunch. It was Wendy's. We found out Ellie had cancer. I remember sitting in bed with Ellie in my lap, looking at Mike sitting in the chair to my left. We held hands. We both cried. We said that we would get through this. My mom arrived. We told her Ellie had leukemia. I don't remember what happened next. 

In a time span that I cannot define, Ellie was transferred to the pediatric oncology floor. I remember holding her in my lap as we traveled through the hospital in a wheelchair. I still didn't think it was real. I kept looking for signs to determine where they were sending us. Oncology. This was real. 

I remember being wheeled into Ellie's room. I think we got there sometime between 1-2pm. That's fast. In a span of just a couple of hours, Ellie's life was drastically altered. Our family would be forever changed. 

I remember going to the bathroom. I knelt on the floor and sobbed. I never really knew the difference between simply crying and weeping until that moment. 

The rest of the day, and quite honestly, the rest of her hospital stay is a blur. I'm grateful I documented those moments in real time. That afternoon was the first time we met Dr. Erin Cockrell, one of Ellie's amazing oncology doctors. I remember the care and time that was taken with our family. Every question was answered. Even without the official results that would come from the bone marrow biopsy on Monday, on that day, we knew that Ellie had leukemia. Again, no false hope was given about her diagnosis, but hope was given about her care. We knew that Ellie would fight. We knew our family would fight. We knew that her doctors and nurses would fight. We knew that Ellie was in the right place to be treated. We knew that God was watching over our family.

It has taken me a long time to write this post. I have started and stopped more times that I can count. Despite Ellie's current state of wellness, it is very hard to go back to that day. That day was the hardest day I have ever been through, and just thinking about it now makes me cry all over again. 

There are more thoughts that I want to get out, but it still seems too soon. Simply sorting them in my mind is an ongoing process. This process has changed our family, but in all of the best ways possible. We still have bad days, but they seem to be fewer and farther apart. Ellie still has a year left of treatment, and I know that I still have a lot to learn. 

Thank you for your continued prayers for Ellie and our family, and thank you for reading this long post. I'm glad I finally got it out there. 


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.