Wednesday, November 23, 2016

Thankful, but not for ulcers

Oh so close to Maintenance, yet still so far. 

Picking up from where my last post left off...Sunday night. Ellie was in such pain that night. After I posted, she threw up again, still just mucous. By the time Mike and I went to bed, it was clear that Ellie was not going to sleep well. So, Mike slept on the couch to attempt a restful night of sleep, and Ellie came into the bed with me. She moaned and fidgeted almost the entire night, only wanting to sleep like this:

Around 3:45am I patted Ellie to calm her, only to realize that she was wet. And so was the bed. And so was I. She had moved around so much, that her diaper was dislodged and so she had peed everywhere. We both got up, I changed her, threw down a blanket on the wet spot and stayed in the same pajamas. Because that's what you do at 4am. She had finally calmed down enough that she was willing to sleep next to me instead of on top of me. So for the next 2 1/2 hours, we both slept soundly next to each other.

I was up early for two reasons. One, Nora needed a chest x-ray, so I had a mission to get her to the clinic at 7am when it opened. Two, I wanted to get Ellie to the cancer clinic as soon as possible that morning and have her counts checked. Yes, that morning was a bit crazy, but it's what had to happen that day.

After the chest x-ray with Nora, I picked up Eva and Ellie and took everyone to the hospital. They were able to get Ellie in that morning for a check up and treatment, if needed. Ellie had been in such misery that we were hoping for something to give her comfort. She had a very low grade fever all weekend, but never high enough to warrant a trip to the ER. She was tired and in pain, but never started bruising indicating low platelets. It felt like she was just barely "good" enough to stay out of the hospital.

Playing at the hospital.
It was a Christmas-jammies kind of day for Ellie.

She had her counts checked, and our thoughts were confirmed. On paper she was fine, but if you looked at her, she looked terrible. It was determined that she had mucositis, basically ulcers all throughout her digestive tract. This explained why when she vomited it was just mucous. Those ulcers were breaking up, releasing the mucous. Gross, I know. And obviously causing Ellie an immense amount of pain. 

There's nothing really that can be done to treat the ulcers, they just need time to heal. In the meantime though, she needed something to manage her pain. Ellie had all but stopped eating. It obviously hurt to chew with the sores in her mouth, but it also hurt to even open her mouth for a spoon or straw. Her pain options were Tylenol with codeine or oxycodone. The first option was easy to come by, but not ideal. If you recall, Ellie cannot normally have Tylenol because we never want to mask a fever. The second option was ideal, but harder to come by. 

So, what did we do? We got both prescriptions and went to work figuring out which one we could get filled the quickest. Our pharmacist was out of both, but was able to find a pharmacy that had the Tylenol with codeine immediately, and promised us that he would have the liquid oxycodone the next day. I was able to drop off the girls with my mom before venturing out for the prescriptions. It was a good thing I did, because I was not at my best that day. When I arrived at the Publix pharmacy to drop off the Tylenol prescription, I was a borderline mess. When the pharmacist told me it would take at least 30 minutes to fill, I lost it. Tears. Messy tears. "It's for my daughter. She's going through chemotherapy. She is in so much pain." More tears.

It was filled much quicker than 30 minutes.

And then I picked up the medication. The pharmacist (different from the one that had witnessed the tears) looked at me extremely concerned and asked, "Did your doctor go over the side effects with you? She JUST turned three, right? This is a narcotic. This is not normally prescribed for a child this young."

Right then, I was brought back to the seriousness of all of this. Yes, she is three. And yes, she needs this severe drug, her first narcotic. This is not right. You see, when you are at the hospital, surrounded by cancer, everything seems ok. "Codeine or oxycodone? How about both!" Then, you escape that world and realize over and over again how not normal all of this is.

"Yes, my daughter had leukemia. She is going through chemotherapy. This is to relieve her pain from the ulcers."

"Oh, ok. I'm so sorry. Your daughter is fine to take this. Just watch out for these side effects..."

So, this is the world that we live in for now. I'm grateful that Ellie had the option of this drug though because it has eased her pain. Today, for the first time in almost a week, she ate more than one bite of solid food.

Half of an English muffin with peanut butter!

When Ellie woke up this morning I heard, "Blood, mamma, blood." She held up finger, blood. I looked at her lips and mouth...covered in blood. She has started picking at all of her sores and scabs. It was quite the scene. There's no picture of that, but just imagine that her lips are some of the worst chapped lips you've ever seen.

Oh, that reminds me. Bad cancer mom confession here. When I get Ellie dressed for hospital appointments, it is all about what she wants to wear. It is never about what is convenient as far as accessing her port. I want her to feel as comfortable as possible, so I let her pick out her clothes every time. This morning she was having trouble deciding on a top, so I offered her some options. She grabbed one shirt and said to me, "Oh no mama, this one isn't good for my port." It amazes me what she picks up on and how much of her life revolves around thinking about that sort of stuff.

Ellie was scheduled for more chemo today. Her last treatment before Maintenance. But alas, it was not meant to be. Her counts were good, but it was those pesky ulcers holding her back today. If she were to receive more Methotrexate, the ulcers would just get worse. We let her heal some more, and then go back on Tuesday and try again. 

Ellie in her "kites".

This is a blessing. Tomorrow is Thanksgiving and we so desperately wanted Ellie to be as strong as possible. She will be dealing with her ulcers, yes, but at least it won't be ulcers AND chemo. We are hosting Thanksgiving at our house this year, and while it may sound crazy, it will be easier on our family. We are really looking forward to spending the day with lots of family and love.

If you don't hear from us again tomorrow, have a very happy Thanksgiving!

Much love from the Yorks.

This just happened as I was editing.
"Snuggle up."
Oh, and yes, her lips are SO much better this evening.

Sunday, November 20, 2016

Mood Swings...and I'm not talking about Ellie

The last four days have been hard. I hesitate to even write this, especially in light of my post yesterday. It is so easy to compare our family's struggles with others and think, "It's ok. It's not THAT hard." But, the primary purpose of this blog is to document Ellie's treatment. Our journey. (Ugh...can someone give me a better word to use than that?) And in light of that, these four days have been very difficult for Ellie, and therefore hard on the rest of the family.

Ellie is not feeling well right now. Her platelets have not dropped enough to produce bruises and bleeding, and she hasn't had a high enough fever to warrant taking her to the hospital. But she looks terrible with pale skin and sunken eyes, she has had a constant low grade fever, she has pain all over her body, she is not sleeping well, she has mouth sores, and I can hold in my hand the amount of food she has eaten in the past four days. She vomited once yesterday and twice today, but since she's not eating, only mucous comes up. Her taste buds are done. She wants to eat, constantly asks to eat, but nothing tastes good to her and everything causes her pain.

She's back on medicine to try and alleviate these symptoms. 
Bactrim: that's a standard treatment antibiotic to prevent a lung infection
Periactin: help stimulate appetite
Pepcid: for ulcers that are forming in her digestive tract
Zofran:'s not really working right now
Ativan: to calm her down and help her sleep
Tylenol: body aches and pains

We feel done.

But, we are only 8 months into this. Ellie still has 19 more months to go. So, we keep going.

When Ellie was first diagnosed, Maintenance felt like an impossible dream. But if we reached it, life would be so much better! Ellie would be so much better! Maintenance is now less than a month away and we are realizing that this is not the case. Yes, Maintenance is a big deal, because it's a big milestone. It means that the most intense period of treatment is over. But that does not mean it is any less harsh. I was confusing intense with harsh. 

Will Ellie have to go to the hospital, on average, every week? No, she will only have to go once a month. But that's because she will be receiving oral chemo daily at home. Did you get that? We will have to give our daughter chemotherapy every day for 18 months. And that's in addition to the other medications that she will receive, both at home and at her hospital visits. 

So yeah, it gets easier, but only if easier means less hospital visits. It will still be incredibly hard for Ellie. Chemo drugs will be wrecking her body daily, and steroids get their turn monthly. 

We are tired. All of us. Both Eva and Nora struggle and fight for our attention. I know it will get better, but right now it is hard. I really want to convey the good with the bad. Cancer sucks, no matter the diagnosis. Most of the pictures you may see only show the good, or perceived good. But please know, this is hard. If you know of any parent fighting along with their child during cancer treatment, please give them a hug, send them a funny text or drop off a coffee. Trust me, they need it. 

In the interest of ending this post on a lighter note, this is what the majority of my day consisted of. You know, in between all of the other stuff that I mentioned above.

For giving me a joyful pause within these past few days, thank you Nahal for sending me this book. It was the most wonderful surprise!

And finally, last night for about an hour, Ellie felt well enough to celebrate Uncle Casey's birthday.

Ellie needs healing brought to her body. Mike and I need strength. Eva and Nora need understanding. Please pray specifically for these things for our family.  

I am likely taking Ellie to the hospital tomorrow. Please pray it does not become an extended hospital visit. Pray that we can all be together for Thanksgiving.

Saturday, November 19, 2016


This is one of those posts where I do not know exactly what to say. More than likely, I will say it all wrong. But if I try to make it perfect, then I won't say it, and that would be terrible. This needs to be shared.

I went to a memorial service today for Everett James Nowlin. He is a little boy that was born with a bad heart. So bad that he should have never been born. But he was, and he lived. For almost 10 months he lived, and his life defied all odds. His life was a blessing and his story touched so many people. 

I never met Everett. As a matter of fact, I only ever met his mom once about a month ago. I know Everett's Aunt Laura, but really only within the past few months. We're new friends. 

So, why did I go to this service? How could I not? Now please, do not think I am trying to pat myself on the back here. That is exactly the opposite of what I am meaning to do. I want to pat everyone else on the back. There have been people that did not know me or Ellie, yet went above and beyond for our family. There have been people that have shared their love and support for our family, yet have never met us. So, again, why did I go? I had to. I had to support and love on this family in their time of grief, because so many people have done that for us. 

And you know what? Those people I just mentioned, that we don't know, but they still pray for Ellie...they were there today. And not just abstractly, but there in the flesh. While waiting in line, I met people. As soon as they heard my name, they hugged me and told me they were praying for Ellie. When I was greeting the family, they put aside their grief for a moment to ask me ab0ut my daughter. Still, in this moment, trying to type the words...I don't know exactly what to say.

This is the church. This is the body of Christ. 

I went into this morning intending to support and love another family. But, I ended up getting support and love in return. We are not alone. Our family isn't alone. Ellie isn't alone. 

Now, please....don't let the Nowlin family be alone. I know that they have had immense love and support over this past year. Their friends and family have helped ours. Now I am asking for our family and friends to help them.

When your child has cancer, they get a wish, a trip....something. Good happens along the way to help the family heal together. When your child dies, the family that they leave behind doesn't get a wish. They don't get a trip. 

Except, when they do.

Please, if you are able to, donate here to the Nowlin family. Help them heal and love together.

Thank you. 

Thursday, November 17, 2016


The last couple of weeks have brought more highs than lows, and for that, we are thankful.

Perhaps the only convenient thing about Ellie's treatment is that it is flexible. For the most part, her scheduled treatment can be moved a day or two if needed. Of course, we never purposefully do this (it typically only happens when treatment falls on the weekend), but at the beginning of this month we did.

Ellie was scheduled to go in for chemo the first Friday of November, but we were able to bump it up a day and a half to late Wednesday afternoon. I knew this was going to be a quick visit (quick = less than 3 hours), so I brought along Eva and Nora. Eva has been asking to come back to watch Ellie's treatment, so this seems like the best opportunity to include them again.

We love animals!

Ellie loved showing her sisters everything, especially calling in to the Infusion Center.
I am sure it makes her feel very big and important that she knows exactly what to do.

Eva and Nora both did great, despite the "short" visit. It's all exciting at first, but then the novelty wears off. Honestly, it's very boring for them. But, this is good for them to see for several reasons. They are becoming a part of Ellie's care and can better understand exactly what she is going through. Also, they see that even though going to the hospital sounds fun and exciting, it's really not. This way they hopefully will not feel like they are missing out.

So, why did we push up Ellie's visit? 

Mike and I were able to get away together for FOUR GLORIOUS NIGHTS! It was amazing! For those that know us, traveling has always been our vice. We forgo a lot of other things so that we can travel together. We had a trip planned this past May, but once Ellie was diagnosed we had to cancel. At the time her doctors assured us that we would be able to get away sometime this year, "perhaps November". So we planned a trip for the first weekend in November, with all appropriate reservations made. As the time drew close, neither one of us felt excited about it. We were nervous and stressed, and knew that we would likely be nervous and stressed if we took the trip. Always ask yourself, "What's the worst that could happen?" (Thank you, Dale Carnegie.) Well, in this scenario, the worst was Ellie ending up in the hospital for 18 hours without us. Not fair. Not fair to Ellie, to us, or to the grandparents watching her. Once we came to that conclusion, it was an easy decision to cancel our plans and make new ones. 

Vacation qualifications: no more than a three hour drive from Ellie. So this is what we did. We stayed in Orlando for two nights, and Cedar Key for two nights. Constantly evaluating along the way if we needed to come home...and we never did. Nana and Grandpa, thank you for watching Ellie. Mimi and Papa, thank you for watching Eva and Nora. Those four nights away allowed us to rest and refresh in ways we didn't fully realize. Thank you for the quiet and peace you allowed us those days. 

Looks like Ellie also enjoyed the peace and quiet while we were away.

The days after we returned home were some of the best Ellie has had recently. Because of the early push for the prior chemo treatment, she was given a few extra days of rest before going back in for the next round.

Cutest doctor I've ever seen!

(I texted this picture to Mike.)
Me: Apparently licking the cheese is enough.
Mike: She's absorbing it.
(Then, after a few minutes of licking...)
Me: Ellie, take a bite.
Ellie: Oh, no, no, no. Let's don't do that.

This past Monday, Ellie was back at the hospital for more treatment. Harsh treatment. She's had this before, and it wasn't good to her. Last time she ended up being hospitalized for a couple of days, receiving transfusions while her little body recovered. And this dose was going to be more than the prior dose. Methotrexate into her spinal fluid via a lumbar puncture, plus Methotrexate and Vincristine administered into her port.

At the clinic before heading to the day hospital for her procedure.

With each of the recent treatments, she has had to make counts. I am happy to report that Ellie's numbers have been so high! This is a wonderful praise because it lessens her chances of needing a transfusion.

In the day hospital after waking up from her LP.
She wanted me to lie in bed with her. How could I refuse that?

Back at the Infusion Center for more chemo.
She wanted me close.

Ellie did great with the treatment, so now we wait. I'd be lying if I didn't say that we were waiting for her to need to go back for a transfusion. You might think we are being pessimistic, but I think we are being realistic. It's much easier to take if we know it's going to happen. Still, we pray for lessened side effects, and so far we have witnessed just that. Ellie has complained a little about pain in her legs, stomach, fingers, and she has barely eaten anything the past two days...but...that's it. Oh, there's been a little bit of insomnia. One night she woke up at 11:30, then again at 1:30am asking "Can I read books and you tell me when it's time to get up?" But these are really minor inconveniences. Her side effects could be so much worse. So if you have been praying for Ellie, thank you. Your prayers are being heard and answered. 

As we leave the hospital, Ellie always peeks into the offices to see if she can find anyone to talk to.
Today, Ellie woke up in a very different mood. She was irritable, clingy, fussy, and did not want to eat at all. As this chemo wrecks her body, she feels terrible. We are watching her closely, looking for bruising and elevated body temperature. Please pray that she feels better and does not need another transfusion. Ellie only has one more round of chemo until she begins the Maintenance phase of treatment. She still has a long way to go, but this will be a HUGE milestone for certain. We know that she can do it!

Having rainbow fingernails and toenails doesn't hurt. 

Thank you so much for your continued love, prayer and support for our family. This has been a very long process so far, and yet, we still have even more to go. Thank you for hanging in there with us.

Wednesday, November 9, 2016

The Good

There are so many worthwhile things to say about this circumstance and how it has affected our family. So many things have happened to Ellie, to us as a family, perspectives that have changed and others that have strengthened. So many thoughts go around and around in my head, and I have a difficult time grasping them and making sense of them all. 

I tend to be a perfectionist (shock!), but more often than not, this hurts me. Because, if I cannot do something perfectly, I don't do it at all. I very often do not even begin. 

So, in the context of this conversation... I have so many things that I have wanted to share. But I don't know how to say them perfectly. I feel that however I say them will not give accurate weight to what they mean to me, or to our family. What has ended up happening is that they have not been shared at all. 

Instead of continuing to do nothing, I'm going to do something. I am going to share a few stories about some of the good that has happened to our family as a result of this terrible cancer. The good of this awful situation needs to be known. Because it IS there.

* Countless meals have been prepared and given to our family.

* A stranger cleaned our entire home and never charged us.

* A donation site was set up by my brother almost immediately after Ellie's diagnosis, and numerous people, people we don't even know, have donated money to our family to pay for hospital bills.

* Speaking of that, a dear friend of Casey's, whom we have never met, did more than just donate money. As a photographer, she held mini sessions and her proceeds plus donations were sent to our family.

* Our pediatrician worked with our family to see our other daughters, even when our insurance situation was a nightmare.

* Our pharmacist did the same, working with us to afford Ellie's medication, and personally helping us find her oral chemo when they couldn't make it.

* A dear friend gifted us Shipt, a grocery delivery service. This has been a huge relief, again and again.

* For all of April and May, every day that Eva was in school (two days a week), her teacher brought Eva a lunch, snack and drink. All so I had just one less thing to have to think about. Now that is being creative and doing what you can to help. I will never forget that. 

* Family, friends and strangers have offered us love and support in the form of cards, texts, kind words, babysitting...the list goes on. At times we may feel alone, but we KNOW that we are not.

(The next couple of things are a little more wordy. But there are pictures!)

* When searching for hair bows for the girls for their birthday party, the complete stranger from Etsy donated the girls bows and headbands, plus extra! I had to explain that Ellie could not have a clip bow, but rather needed a headband due to her no hair situation. From that point on, she did everything she could to make sure that part of their birthday was special. Her girls are Wild Kratts fans too! 

* Our family was able to see Olympic gymnasts perform at a recent tour visit, all thanks to the Children's Cancer Center. When Ashley, from the CCC, called me that Thursday evening, asking me if we wanted the tickets, I cried. After composing myself, I said yes and explained that this was something I wanted to do when tour was first announced. (We love the Olympics!) I looked into tickets then, but then quickly dismissed the idea, reconciling to myself that it would never happen. But, we were able to go! And all three of them enjoyed every minute of it. To make the experience better, Ellie's counts were strong, so for that time, we didn't need to worry about germs too much.

When Ellie wasn't trying to climb over the seats, she was clapping.

This was the best picture we could get of all of us.

* The families in Eva and Nora's classes gave our family enough money to buy a brand new vacuum cleaner. Seriously, you have no idea how simple, yet amazing, this was. As some of you may know, we moved into a very old, yet new to us home early this year. We were able to do a lot of renovations to it before Ellie's diagnosis, but still have much left to do. (This is why you may see things changing in the background of pictures.) After the move, we realized our vacuum didn't work. Well, it did, but not on carpet. It wasn't a huge deal to us, as only the bedrooms have carpet, so it wasn't important enough to replace. After Ellie got sick, we knew we had to get a new one...but never did. This is so embarrassing to admit, but it's the truth. Finally, I aired my grievances over our vacuum situation to my friend Megan, a fellow school mom. Within days, enough money had been sent to us to buy a very needed, very nice vacuum. Yeah, I totally ugly cried that day.

Right before another ugly cry in the car.
These were tears of happiness though!

* Here's a cool one....
A teacher at the girls' school was recently diagnosed with breast cancer. Once you have experienced cancer, your entire perception changes. To all cancers. I immediately knew the best way that I could help her in that moment was by gifting her Shipt. I loved it, and it made my life so much easier. I figured that even if she only used it one time, it would be worth it. Immediately, the doubt and self pity entered my head. "I don't need to give to her. We need things right now too. People should be giving to us." Wow, that's embarrassing. Seeing that in print, I feel ashamed. But, in that moment, that's where I was at. I am happy to say that I got over myself, cast those thoughts out of my head, and sent her the gift of Shipt. I'm not even kidding you, less than 2 hours later when I got the mail, there was a card from a friend with cash in it. The EXACT amount of what I had just spent earlier that afternoon. God is good! Love you Kaffie.

It should be said that I am probably forgetting something or someone. Additionally, there is no way that I can possibly name every single person that has given our family a happy, loving or bright moment throughout this process. To anyone out there that has helped our family so far, we thank you. From the bottom of our hearts. Thank you for making this process a little more hopeful. 

In no way will I do this justice. It won't be perfect, but I will try anyway...
To our parents, there is no possible way that we could have made it this far without ALL of you. For all of the countless things you have done for our family, we thank you. The ways that you have helped us...I honestly do not even know where to start. We love you more each day, and our girls are richly blessed to have you in their lives. 

If you are still reading, please continue to pray.

Pray for Ellie's complete and permanent healing, and for no long term or short term side effects from her medications.

Pray for Mike and I, spiritually, emotionally, mentally, physically and financially.

Pray for comfort and understanding for Eva and Nora.

Finally, here's a little something to make you smile and (hopefully) laugh. This is what happens when your sister and cousin put hair chalk on your hair...and you have no hair.

For those of you that may not know, the blog is on Facebook. Just search "Yorks ALL In". Feel free to like it (I know you lurk, so you may as well like it), and feel free to share it (others may want to lurk too).