Fight Song

Good News & Bad News

Before Ellie went into the hospital earlier this week, she already had an appointment scheduled for this morning for her next round of chemo. With the platelet complications though, it was going to be a check up, with the small chance of chemo treatment. 

The visit was going to go one of three ways:

1. Platelet infusion

2. Chemotherapy

3. Nothing

Number one was what everybody expected to happen. But, it ended up being number three. The good news was that Ellie's platelet count was 46! Improving on its own, and no need for a transfusion. The bad news was that it was not high enough to receive her next round of treatment. So we wait again, and go back to the clinic on Tuesday. No matter her counts, Ellie will receive Vincristine, but she may or may not receive the Methotrexate. The Methotrexate was what wiped out her platelets before. She received it intrathecally (into her spine via a LP) and in her port. That double dose hit her hard, so she will have to constantly be evaluated to see if and how much of it she can receive.

Even though Ellie did not receive any treatment, we still went to the infusion center. Ellie's birthday is on Sunday, and we knew that they had something planned for her. 

Presents....

...and singing Happy Birthday!

Ellie loved it! She is loved by so many people, and we are so blessed that she is receiving such wonderful care. Thank you to everyone that helped to make her day so happy!

Hospital Visit Recap

Ellie is home again! Here is the recap of the past two days...

On Monday, it was clear that Ellie's body was not accepting the platelets. Early that morning around 5am, she woke up coughing. She had some really hard coughs before finally coughing up mucous and blood. In the moment, that was a little scary, but it ended up not actually being that worrisome. Her platelet count had gone back down to 11, so that little bit of coughing was enough up burst some blood vessels and have it come up.

Just like last time, Ellie did not respond to the regular platelets. The doctors are not exactly sure why, but think that perhaps there is something in the plasma that is mixed with the platelets that her body is rejecting. Last time Ellie was in the hospital, she finally responded to matched or typed platelets (at the time we thought that they were volume reduced or washed, but we were incorrect). So this time, we started looking again for the matched platelets, but in the meantime opted for the volume reduced platelets. They are stripped of everything in the blood that is not a platelet. This worked! Ellie received the transfusion on Monday afternoon and her counts jumped to 41! Now, they just needed to hold. Ellie had no fever, a high ANC and was eating well, so the only concern was her platelet count. 

Sleeping after getting the platelets.
Since her allergic reaction several weeks ago, she is now pre-medicated with every transfusion.
This includes Benadryl, which naturally makes her sleepy.

One good thing about this hospital visit was that Ellie was overall feeling much better than previous visits. Since she was not on contact restriction, she was able to leave her room which made the visit a lot more bearable. 

Miss Sabine came up from the infusion center to see Ellie.

Playing with her dolls from home.

Playing with play-doh downstairs with the volunteers.

Chillin' on the couch, watching a movie and being hand fed dinner.

The next morning Ellie's platelets were at 37! They were holding enough to go home. This was such great news! We don't know why Ellie's platelets dropped while nothing else did, but we are grateful that it was a quick turnaround for her. Praise be to our Heavenly Father!

Her port has been de-accessed and she is ready to go home!

Ellie will return to the hospital on Friday. She is supposed to receive another round of chemo at that time, but it is unlikely that she will be strong enough to continue with treatment so soon. So, we will go, have her blood counts checked and decide what to do then. Worst case scenario is that this one is skipped, and she picks back up with treatment when her body has recovered.

Strangely enough, any delays do not affect her end date for treatment. We were under the impression that a week delay now meant a week added to the end of treatment. That's not how it works. I do not understand it, but I trust her doctors and the care she is receiving. With that said, we know when Ellie will be done with her treatment.

June 9, 2018

It seems so weird knowing this date. I started crying when the nurse told me. Knowing a concrete day when she will be done with all of this...well, I don't know how to explain it. It's such an odd feeling. A good feeling, but strange nonetheless.

Please continue to pray for Ellie's complete and permanent healing. 

Pray for no long term or short term side effects from her treatment.

Pray for comfort, peace and understanding for Eva and Nora.

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



By the way, today was Nora's 5th birthday. All of us were so happy to be home together to celebrate! 

Opening gifts from her sisters this morning.

IM2, we did not expect this

Well....this treatment isn't being so kind to Ellie. On top of making her not want to eat, she has had some mild insomnia, has developed mouth sores, spiked a fever and dropped her platelets. 

Ay yi yi. These past few days have been a blur, but I will do my best to recount them.

Eva and Nora have had colds all week. Nothing serious, for them. But, everything can be serious for Ellie. On Thursday, Ellie was driving me bananas! And then that night, she had a low grade fever, around 99. Nothing to call the hospital about, but definitely needed to be watched. This explained why she was in a bad mood earlier in the day. She was not feeling well.

It seems like "fever watch" is my new hobby. Anytime Ellie feels remotely warm, I take her temperature and obsess over the results. My minimum is two checks in each ear and the head. Anything above 99.0 makes me start worrying, because if it gets to 100.4, stuff gets real. Ellie is not allowed to receive any Tylenol, unless she is on antibiotics. So it's always a wait to see how high her fever will go, and therefore how long it will be before we have to call the doctor.

Nothing happened with the fever that night, but Ellie did start having a runny nose and watery eyes. So even if the fever did return, there was a good chance it was just a cold, and not something worse. The next morning Ellie seemed fine until about lunch time. She started driving me nuts again! I went to pick her up and then I felt that the fever had returned. I forget the number now, but it was high enough to send us to the ER. 

Tests and cultures were run, and everything came back ok. Ellie was not neutropenic and showed no signs of infection, so she was given an antibiotic and sent home. The one unusual thing to note was that her platelet count was low: 24. On Tuesday, it had to be over 75 to receive treatment, and I'm pretty sure that it was actually >100. So the drop to 24 was very unusual. Something that we definitely needed to watch. 

Feeling so crummy and tired.

On Saturday, I was like a hawk on Ellie looking for bruises on her body. I found one, around about noon, on her knee. We spoke with her doctor and all decided to keep an eye on things, calling if anything worse happened. As we put Ellie to bed that night she felt warm. Checked her temperature and it was slightly elevated. We set the plan to check it again in two hours, but also planning to go into the hospital that night. We prayed for God to take away the fever, and when we went back in, Ellie was cool and clammy. The fever had broken. She was safe at home for the night. 

This morning, Ellie was in a great mood! No fever and very happy. But then, Mike and I started noticing more bruising. We felt ok with waiting it out until tomorrow, until we noticed the blood on her lip. A very well timed follow up call from her doctor confirmed that we should go ahead and bring Ellie into the hospital. It was very likely that she would need a platelet transfusion. The ER does not do transfusions, so we decided to be admitted straight to the oncology floor. 

She never napped, but was able to rest for a bit.

Watching the helicopters land

Ellie's platelets were 11. Transfusion time! 

Ellie's bruising and bleeding that brought us in tho the hospital.

Ellie received her new platelets, and unfortunately like last time, her body did not respond the way that it should. She only jumped to 20. So now, we stay the night and most likely the next day or two until her body recovers. The good news is that all of her other numbers are high, including her ANC at about 4000.

If her ANC stays high, then hopefully she can leave her room tomorrow.
We were unsure today, so most of the playtime was on the couch.
I hate hospital room floors and won't let Ellie stand on them.

She just cannot get enough of playing with the tubes.
Don't kick the blood.

She turned part of her tubes into a ring.

Please specifically pray that Ellie's blood counts recover quickly. The second half of October is a crazy amount of fun for us, and selfishly, I do not want any of the girls to miss out. Nora's birthday is in a few days, Ellie's is in a week, and Eva's is at the end of the month. Plus, we've got a small party thrown in there for all three of them. I really want all of us to be able to be together to celebrate. 

Thank you so much for your continued love and prayers. Even with these bumps in the road, Ellie is doing so well! We know that our prayers and yours are being answered, so thank you. 

Sleeping so peacefully.

Interim Maintenance 2

This past Tuesday, Ellie made her counts! All of her levels were more than high enough to begin her last phase of "intense" treatment until she reaches Maintenance. Maintenance isn't the end, but it gets her closer. It will definitely have its bumps too. It's no Promised Land. That's complete remission. Maintenance....maybe it's the wandering in the wilderness for 40 years? It IS a long time. That would make our present situation....slavery? That all sounds about right. Currently, I feel like a slave to the hospital, blood counts, chemo...the list goes on. But, I hear a rumor that relief is coming. Maintenance is arriving soon. But first, Interim Maintenance 2.

OK, that got a little weird.

Much like what Ellie went through a few months ago, this course of treatment is very similar. The medicine she received is escalating, meaning she receives a higher dose every ten days, pushing her body to its limit. Whatever her highest does was in Interim Maintenance 1, she starts at 2/3 of that and then just goes up. It was rough before. I have no doubt it will be rough now. Still, hopefully not as rough as Delayed Intensification.

Play-doh while waiting for her Lumbar Puncture

After waking up from the LP, she was so cold, shivering, but refused to put on the hospital blanket.
I have learned my lesson: ALWAYS bring her a blanket from home.

After the LP, it was back to the infusion center for more IV chemo. She was very happy and despite her lack of a real nap, did great for the rest of the day.

The bare walls needed something. Ellie took care of the problem.

Ellie often speaks through Diddy. That's what's going on here.
It's as fun and easy to understand as it sounds.

Ellie (& Diddy!) love to help de-access her port.

Ellie's hair my still be falling out some, but it seems to have turned the corner. It is now growing in more than it is falling out. There are mostly blond hairs, but some really dark brown ones too. It will be interesting to see what it looks like as it grows back in. If you look closely at Ellie's eyelashes in the picture below, you can see how they are growing back in.

Notice the couple of long ones, and all of the other short ones.

Overall, a successful beginning to this phase of treatment. We went home, and as per her request, Ellie got to make macaroni and cheese for a snack. Whatever to get her to eat!

So proud of herself!

Three bites into eating it, "Mommy, this tastes yucky. I don't like it."

And so it begins. Again. For the past few days, Ellie has taken not eating to a whole other level. She is not eating more than a handful of food a day and is not wanting to drink much either. She has to eventually turn a corner, so we keep trying to feed her until she does.

On Thursday, Ellie had an appointment with a pulmonologist. To be honest, it was mostly unnecessary. Everything sounded and looked great on Ellie, so there is no need for any further tests/treatments right now in that area. She had some trouble wheezing in the past, which is why this appointment came about, and we felt it was a good idea to go ahead and establish her as a patient, in the chance that she needs to visit in the future. 

Selfies while waiting for the doctor.
"I can do it Mommy."

Please continue to pray for Ellie's complete and permanent healing, and for no long term or short term side effects from the treatment. Like not eating! Please pray that she wants to and is able to eat and drink. 

Thank you so much for all of your love and support of our family.

Chemo Hold...Again

Yesterday, Ellie was scheduled to begin her last round of heavy treatment, Interim Maintenance II. As you may have guessed, she did not make counts. Her WBC, hemoglobin and platelets were all great, but her ANC is still weak. 250. It needed to be 750. So, no chemo this week and she is once again neutropenic. The side effects of Delayed Intensification are still rearing its ugly head. 

Now, we wait a week and try again next Tuesday. Of course we are bummed, but I know that it is probably for the best. Nora has had congestion off and on for the past few weeks, and this might possibly be the culprit. That tiny bit of germs could be enough to keep Ellie's fragile immune suppressed. Again, this is not uncommon, but unfortunate. The ANC is often the last number to bounce back, so we wait patiently until it does.

With Lauren, one of the Nurse Practitioners

Since that is all I have to update right now, I thought I would share a story from when Ellie was in the hospital. This blog is for our family more than anyone else, and this I do not want to forget. Especially since Eva and Nora have made me repeat it every day, several times a day.

On Friday while in the hospital, Ellie was receiving what ended up being her last blood transfusion. She was recovering, had new blood pumping through her veins, and was feeling good. Finally! I was sitting with her on the couch in her room. Odds are good that we were watching Daniel Tiger. 

Like most toddlers, she often thinks that her feet serve the same purpose as her hands: to touch and grab anything within her vicinity. With the IV tube snaking around on the couch, connecting her port to the blood bag, naturally she began playing with it with her toes. Before long, she was swatting at it with her foot. It was driving me nuts. 

"Ellie! Don't kick the blood!"

Oh, the things you end up saying as a parent that you would never say otherwise.

Immediately after saying it, I really heard what I had said. And so did Ellie. She immediately starting laughing, which made me start laughing. At that point, there was no turning back for her.

"MOMMY, DON'T KICK THE BLOOD!"

Ellie yelled that over and over and over until we had an audience, with nurses both in our room and in the hall laughing. Oh, and it should be mentioned, that as she was yelling/laughing at me to stop kicking the blood, she was still continuing to kick the blood. 

Not the funniest story out there, but still pretty entertaining I think. It helped to boost Ellie's spirits, and Eva and Nora love hearing the story. So next time you see one of them, please tell them not to kick the blood.

One last bit of Ellie humor. The other day I realized that she was quiet in her room. Any parent of a small child knows that this means they are up to no good. I slowly crept back to her room, and found Ellie like this:

Yup, she's using a grabber to try and get her pacifier.

We have been slowly trying to wean Ellie off of her pacifier. It got really bad during DI. So now, we make her keep it in her crib when she's not sleeping. She became upset about something, told me she wanted it, and I told her no. It looks like she knew better and decided to take matters into her own hands. 

When I walked in, I immediately laughed, raced out of the room to grab my phone for a picture, came back to the room and gave her the pacifier. I figured after all of that effort, it was the least I could do. 

6 Months

It's hard to believe, but it's been six months since Ellie received the hard diagnosis of Leukemia.

The past six months have been a blur. They have gone by...at a normal pace. I suppose. Honestly, looking back they kind of feel like an eternity, especially because I cannot really remember what our life was like before April 2, 2016. 

You often hear that cancer robs...in so many different ways. It's true. Even though Ellie's prognosis is great, and I realize what a huge blessing that is, I still feel robbed. Robbed of time, robbed of fun, joy, health (duh), blissful ignorance. So many things. 

A couple of weeks ago, one of Ellie's nurses asked me a very pointed question. "What has been the hardest part about all of this?" Two things have been far more difficult than we anticipated. 

1. Explaining and educating to ourselves and to others. This is one of the main reasons why I continue to write this blog. Before Ellie's diagnosis, I was ignorant about all cancers, but specifically the world of pediatric cancer and Leukemia. Everyone knows that October is Breast Cancer Awareness Month, but I had no idea that September is Childhood Cancer Awareness Month. I had no clue how common childhood cancer is, nor that it could arrive in so many different ways. I did not know how far "cure" advances had come, but even though the cancer may be gone, that is just the beginning of the battle. Ellie's nurse immediately got it. "Getting rid of the cancer is only 10% of the battle. Making sure it never comes back is the other 90%." (Please note, this is only specific to Ellie's cancer, ALL. There are a myriad of other pediatric cancers that have completely different courses and outcomes.)  Yes! That was it! She immediately put into words what I had been trying to formulate for so long. When Ellie was deemed cancer free in the beginning of May, that was great news! But, it was also expected news. We were, and still are, so grateful that the cancer was gone, but we also knew that there was still a very long road ahead of Ellie and our family. That brings me to...

2. Eva and Nora. Ellie's diagnosis has been so much harder on them than I could have ever anticipated. Cancer really does affect the entire family. I would guess that it has hit them the hardest, because they are the closest to it, but yet do not have a firm understanding of it. 

Eva lives in her mind where everything is black and white. Yet, for the past six months, everything concerning Ellie has been gray. 

"Ellie is sick and in the hospital.

Ellie has cancer. Leukemia is when your blood is really sick.

You can't "catch" anything from Ellie. You cannot get sick the way she is.

Ellis is home from the hospital. But, we have to be very careful around Ellie.

The cancer is gone! But, you still have to be careful around Ellie.

Ellie is getting stronger, but she is still at the hospital. Constantly.

She has to get more chemo. It is going to make her fragile.

Ellie got really sick again. She is in the hospital. The cancer is not back. 

She has to get a lot more blood. Her body is not working properly on its own.

The chemo is making her sick, but it is keeping the cancer from coming back."

Writing that is exhausting. I cannot imagine what it's like for Eva to try and process it.

All Nora really knows is that Ellie has been really sick and is slowly getting better. Also, that the chemo and steroids make her crabby. We have explained everything above to her too, and I am sure that it is extremely confusing for her to try to grasp. 

But through all of this, I am gone. A lot. They both have had a very difficult time with the separation and lack of schedule. And, when I'm gone, I am with Ellie. The balance of time is severely in Ellie's favor, and it has not gone unnoticed. 

There have been so many other difficult aspects to this process, but they were, for the most part, expected. These two issues were the biggest surprise.

 So, where does that leave us? Six months into this, how are we? 

We are ok. This sounds like such a bland, simple answer, but it seems the most appropriate. We are not doing great, but neither are we terrible. There are days where things seem normal, and others where we want to wallow. Most days, we are tired and we are overwhelmed. 

This too shall pass. That has been our mantra. We know that there is an end to all of this, even if right now it seems very far away. We are not alone. We have been so incredibly blessed to have so many people help us along the way. Family, friends, strangers...SO MANY of you have risen to the challenge. If you have said a prayer, sent an encouraging text, brought a meal, donated money, watched our children, visited in the hospital, or done one of many other creative things to help our family, THANK YOU! In spite of this difficult time, there have been so many cool things that have happened to our family. It is so easy to focus on the negatives, and honestly, some days we do. But, we are increasingly trying to focus on the positives. It seems to be balancing out, and hopefully one day, all of the blessings will outshine everything else. 

In the meantime, if you ask us how we are doing? We're ok. And I am ok with that answer for now.