Tuesday, April 26, 2016

Pictures & Ellie-isms

I have (finally) updated the majority of the posts with pictures. Feel free to go back and look at Ellie's hospital adventure. While going through all of the pictures that I have taken over the last three weeks, I realized that I have not taken many of Ellie since she has been home. I will work on taking more to share with you.

Since this blog is our documentation of everything Ellie at this point in her life, I thought I would share some phrases that we hear her say. A lot.

"Mommy hold you." (whenever she wants me to hold her)

"I wanna have some cuddles."

"I wanna have Diddy, paci." (Diddy = thread bare lamb you see in every picture; paci = pacifier. Note: Before this, since she was three months old, she only got her paci when sleeping. It's a little more frequent now.)


"What was it?" (whenever she wants to know about anything)


"I can't." (all. the. time.)

"Nasty poo again."


"It's 14 o'clock." (no idea how this started)

"Little too heavy." (go to expression when she cannot do something, often used with "I can't")  

"No please."

(but sadly, in the past few days she has learned the correct way) "No thanks."

"Have toots in my mouth." (anytime she has a burp or really does anything funny with her mouth...her sisters encourage this one)

"I've no idea." (a favorite among the doctors, nurse practitioners and nurses...they think it's a hoot!)

(and finally, she says her prayers like this) "Heavenly Father. Prayers. Amen"







Can't See the Forest for the Trees

Ellie had an appointment this morning to get her blood counts. Everything looks great! Her numbers were high...so high! 

White Blood Cells: 2.5 (this was the only low number)
Hemoglobin: 10.5
Platelets: 82,000 (this is by far the highest it's been yet!)
And, her ANC, which determines how at risk she is for infection: 620!!

This number blew my mind. Anything under 500 is considered to be extremely high risk for infection. Last two appointments she went from 230 down to 80. To see a number this high, especially over 500, is such a sigh of relief.


Munching on Chick-fil-A after a great report at the doctor's office!


Since I am with Ellie every day (obviously), it is difficult for me to see her progress. I keep comparing her to pre-cancer Ellie, and since everything falls short of that, I have a hard time seeing the strides that she is making. If I compare her to how she was on April 2nd when she was diagnosed, well then, she is a different child! 

I have been too focused on the details, and have forgotten to look at the big picture.

Ellie is regaining her strength. She manipulates her body on her own, crawls, stands up on her knees, and even walks a few steps while assisted. Earlier today I got her to walk nine steps with me holding her hands! Her color has returned and seems to have stabilized. She is gaining weight, and is only 1-2 pounds from her original weight. She is eating food, and she is eating it mostly unassisted. She is having regular bowel movements. SHE IS SLEEPING THROUGH THE NIGHT! (Yes, that deserves shouting.) She is talking, laughing and acting goofy. She wants to do even more!



Ellie watching a movie on Sunday.


These are all wonderful improvements! I've been focusing too much on the negative.

Instead of thinking, "She is sick because of her cancer," I should dwell on that fact that "She is well in spite of her cancer."

Her body is being healed, and her labs today confirm that. Thank you for your prayers for Ellie. Everything is helping her get better. 


At home, playing.




Saturday, April 23, 2016

How are we doing?

Chemo days at the hospital are rough. They are physically exhausting for Ellie, and mentally and emotionally exhausting for me. Actually, every day is exhausting for Mike and I. Ellie has been sleeping through the night, but we are both still exhausted. The mental and emotional tiredness is definitely taking it's toll. This is not unexpected. We are only three weeks in to this very long process. I'm just letting you know where we are at right now. We are sleeping, but we are tired.

When we first came home from the hospital, it oddly felt like nothing had happened. But really, this massive, life changing event happened during those twelve days. While coming home was wonderful, and obviously the best thing for Ellie and our family, it immediately gave the false sense that everything was ok. Sure, we knew that cancer was still there, but we were able to settle into a new, quarantined normal.

And then Ellie went back on Wednesday for her next chemo treatment. 

That really threw me for a loop. I was in a funk all day Thursday and Friday. Mike says that a better term is melancholy. I wasn't crying, I wasn't in a bad mood, but I did feel kind of numb to everything around me. I don't say all of this for sympathy, but rather to honestly document how it is affecting our family. And to be honest, Ellie mostly acted the same way I did those two days. I am grateful that I recognized this so early on in her treatment, because now I can be proactive about my attitude after those draining chemo days.

How are Mike and I doing? Overall, I think we are handling everything pretty well. We have our good and bad days, but those happen regardless. We have made a pact with one another that if either of us are invited out somewhere, we are allowed to go. (To be honest, this has always been our unspoken pact. Now, we have just verbalized it and are more intentional about it.) We know that this is going to be a long two and a half years, and anything to help take our minds off of the leukemia is welcome.

How are Eva and Nora doing? Again, I honestly think that both of them are handling it all extremely well. There are times where we need more patience than a 7 and 4 year old can give, and those moments can be difficult. As long as we take the time to explain all of the changes to them, then they seem to be able to adjust easily.

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

Pray that Ellie starts eating more and gains weight. Pray that she builds strength to walk.

Pray for patience for Mike and myself..

Pray for patience for Eva, Nora and Ellie.

Pray for strength for all of us...physically, mentally, emotionally, spiritually and financially.

Wednesday, April 20, 2016

Induction - Day 15

Yes, I know. Two posts in one day!

Ellie is at the hospital right now receiving her next chemo treatment, so I have some time on my hands.


In the waiting room.



We are officially half way through the induction phase, her first month of treatment. Only 14 more days of steroids, and then (hopefully) she will never be on them this intensely again.

Ellie has regressed slightly; her numbers were very low today. To be honest, this wasn't a huge surprise. She has been looking pale and ran a low grade fever for about an hour on Monday. In addition to the chemo drug (Vincristine) she will also receive platelets today. Her platelet type is a bit rarer, so the hospital does not always have them on hand. (We learned this during our hospital stay.) So, now we are waiting on them to come from St. Petersburg before they can be administered. I'm not sure how long we will be here today, but we are both happy and content. I have nothing else to do that is more important than this, so I am happy to wait. 

Now that we've been through the process, I thought I would explain how a day like this goes. (For now, anyway. Maybe it will change in the future.)

Ellie wakes up and has a normal morning. Snack, antacid, steroid, play, breakfast, get dressed, play. Right before we leave, I put a numbing cream over Ellie's bump (her port under her skin), with cling wrap on top to help it soak in. We then leave for the cancer clinic at St. Joseph's Children's Hospital.

Once we arrive at the office, they take her vitals, and then a blood prick. This gives the doctors and nurse practitioners her "counts". The ever important numbers that at this point basically let us know how she's improving and how fragile she still is. They can go up, they can go down, just as long as overall they are trending up. 

We will usually meet with the nurse practitioner (there are two, and both are wonderful) and go over in depth everything that has happened with Ellie since the last time she was seen. Pain, bruising, medicine tolerance, strength, sleeping, attitude...everything. At that point, we have Ellie's CBC (complete blood count) results. This lets us know if she is in need of any additional blood or platelets. 

After that, we move from the "office" to the "clinic". This is where drugs are given. We are basically in a very small hospital room, and she is treated as such. This is good. Anything she needs, she can get! Her port is now accessed. With the numbing cream doing it's job, the needle is placed into her port with only a little bit of crying from Ellie. A few minutes after, she has forgotten all about it. Then she gets her chemo drug and if needed, blood and/or platelets. Once her infusions are done, she can go home!

As mentioned, today Ellie's counts were very low so she needs platelets. Chemo is finished and she is currently sleeping. We are still waiting on the platelets. Her checkup also revealed that she has an ear infection, so she will be put on an antibiotic. Her gums are a bit red, which could be an indication of mouth sores to come, so we have been given a mouth wash to help with pain should that problem arise.

Ellie has done great today! She is happy to sit and play with play doh for as long as I'll let her. Each time we come to the hospital, she is given a slew of things to occupy her. 






Getting ready for a nap.


And....she's out.


Everyone we have met is so helpful, and it really has made this process easier. I never feel rushed and always feel welcome to ask as many questions as I need to. And to make it even easier, the hospital is only 15 minutes from our house. In the midst of a truly terrible time, there are so many things to be thankful for. This is just a few of them.

However, in the interest of complete honesty, it saddens me to say that it's happening...

Ellie is losing her hair.

It's a very small amount, just strands at a time, but it's happening. This morning while sitting on the couch with her, I stroked her hair and when I pulled my hand away, I pulled four strands with it. Every time since, the same thing happens. It's not unusual for it to happen this quickly, but of course, we hoped that we would have more time. The nurses said that the finer the hair, the quicker is goes. Ellie's hair is very fine, and there's not much of it to begin with anyway. So, I'm not sure how quickly this will all play out, but I will keep you updated. 

It's not uncommon for hair to come back completely different after chemo treatment. What was once straight blond hair could turn into curly brunette hair. With that said (and being the picture nut that I am), should I get pictures of Ellie before she loses her hair? I fully intend on getting pictures once it's gone, because let's face it, that's going to be her "look" for a long time. But, do I need them now? Am I being crazy? (In addition to various other things, this is one thought that's been running through my head since she was diagnosed.) 


Anyhow, this is where Ellie is at right now. A very tiny bump in the road, but overall she is doing well. 


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


Pray that she gains the positive side effects of the steroids (strength and weight gain), and looses the negative ones (mood swings and insomnia).


Pray for Eva and Nora. Overall they are well, but still have emotional moments. 


Pray for strength and restful sleep for Mike and myself. 



Update: Ellie and I were at the hospital for 9 hours today. Much longer than expected, yes, but also a blessing in disguise. Through a series of events, which stemmed from us staying all day, it was discovered that Ellie had been sent home from the hospital with the incorrect steroid. The doctor and nurse practitioner assured me that she is fine, it was simply a "milder" steroid than what she needed. The good news is that the problem has been corrected and Ellie will be fine. The bad news is that she is now on a stronger steroid and her side effects could worsen. 


Please pray that the negative ones DO NOT return, and that the positive ones DO begin. Ellie has lost some weight, especially fat and muscle mass in her legs. I don't know how else to say it...but even though she is regaining strength, her legs looks sickly thin right now. 

The Roller Coaster Ride of Sleep

Our Ellie has cancer, and it is terrible. 

This is our reality right now.

Some days are bad, and some days are ok. When it's ok, we try to take it with as much joy as we can muster. (After posting this, I realized that this wording makes it sound far more depressing than it really is. Let me try again.) When it's ok, it often seems like this isn't happening to Ellie, and we go about our "regular" life as best as we can. When it's bad, well, it's just bad. 

Ellie had two really bad nights in the hospital. Then, her last night in the hospital and her first two nights at home were wonderful, with her sleeping entirely through the night. The two nights after that (Saturday and Sunday) were awful. Nothing we did would make her go to sleep. Because of the insomnia, she simply did not need to sleep, and us trying to make her sleep just made her upset. 

There is little we can do to adjust her schedule, medicine, eating, etc, to avoid this. Worse case scenario for us seems to be that she goes through cycles of good sleep and no sleep. Two bad, three good, two bad, two good. This is what we have experienced so far. For the last two nights, she has slept completely through the night without issue. 

I said that there was little we could do to help the problem, but there was something that we did do. Ellie gets her steroid twice a day, but it has to be given 10-12 hours apart. This meant that she was getting her steroid sometime in the morning and right before bed, which was winding her up. For the past couple of days, we have given her the steroid almost immediately after waking up (around 7am), so that way we can give it to her again around 5pm, which is still two hours before her bedtime. Then at 7pm when she goes down for bed, we give her a dose of Benadryl. This has worked well for the past two nights. We are really hoping that it is making a difference, and not just a fluke that she has been sleeping well.

On an extremely positive note, Ellie is moving around! She crawled around a bit yesterday, and even stood up on her own while holding onto something. Yay! We couldn't be happier that she appears to be regaining her strength.




Here's a funny moment from the past few days...

(some background)  Sunday night was rough. It culminated at 4am with Mike moving to the couch to try and get some sleep and Ellie coming into bed with me. After fidgeting for while, she decided that she wanted to just sit up in bed. Eventually I caved and let her watch Daniel Tiger on my phone. That didn't last for more than one episode because I kept falling asleep, thus dropping the phone. I put her in her crib, screaming, and after a few minutes Mike came and got her, and went outside to the car with her so no one inside could hear her screaming. By 7am, we were done. 

It was just after 7, and Nora was now awake watching a show with Ellie on the couch. They had a few "snacks", but no breakfast yet. Mike and I are another room on the couch, exhausted. 

By 7:15, Eva comes out, chipper after a full night of sleep, and asks "What's for breakfast?"

I just sort of waved toward the kitchen and replied, "Anything you want."

Her face lights up. "Really?!"

"Yes." 

Now, most children would probably use this as an excellent excuse to cram all the junk food they could into their mouth. Not Eva. She goes to the fridge, and grabs lunch meant. "Mmmm...yummy meat."

She then goes into the family room where her sisters are, and we hear her announce:
"We haven't had breakfast yet, so apparently we are going to have roast beef!"

Bless that little girl.

She made sure that each one of her sisters ate, and it was a protein too!





Ellie standing!

Tuesday, April 19, 2016

(I'm too tired to think of a title)

A toddler, on steroids, with insomnia is one of the most difficult things we have had to deal with so far.

I do not wish it on anyone.

Sunday, April 17, 2016

Two Steps Forward, One Step Back

Good News: Ellie has been trying, and succeeding, at "standing up" on her knees while in her crib.

Bad News: It's repeatedly in the middle of the night when she should be sleeping.

Ellis is improving. That is very evident to us. She is happier, slowly eating better, and her color is improving. (She looked pale yesterday, but a call to her doctor calmed us. She has her color back today.) And, she is slowly trying to move around. Early last night, she went from a laying down position to sitting all by herself, and I almost cried. I have mentioned that she does not want to walk, but really, she does not want to move at all. So, the fact that she is repositioning her body on her own is a huge improvement!

She is even pulling up on to her knees, which was extremely exciting at first, but lost it's thrill sometime around 2am last night. She woke up every two hours, 10, 12, 2, 4 and 6, and remained awake for at least 30 minutes. (Thank you Mike for getting up with her every. single. time.) The time in between, her sleep was fit full at best. So far, tonight is shaping up to be like last night. If you are reading this, please pray that she sleeps well tonight.

Somehow I missed it, but after further research, in addition to vicious mood swings, the steroids can cause insomnia. It has been suggested to try giving her evening dose earlier in the afternoon to avoid this disruption. We will try it tomorrow night and pray for a better outcome.

As always, please pray for Ellie's complete and permanent healing.

Pray that all of the nasty side effects from the steroids go away. (Insomnia is the big one now!)

Pray that her numbers continue to go up in anticipation of her next chemo treatment this Wednesday.

____________________________________

As you may have noticed, I am slowly trying to make this blog "pretty". It's quite the learning curve for me, so if you have any helpful tutorials for me to watch or links to send me, I would be very grateful. (I built a web page in college, with some HTML coding too, but somehow this is a little different than the Geo Cities platform I used then. Oh, and it's 13 years later, and I'm three kids in. #mommybrainisreal) Fun fact, that website still exists! So, see if you can find it and have a good laugh!


____________________________________


"I think I'm gonna catch up on my correspondence." (Name the show!) I am slowly working on responding back to everyone that has reached out to us. If you have texted me, I believe I am caught up! If you have emailed me, well, I'm about 50/50 on that. I hope to respond to all of those soon. 


Now here's where is gets a little awkward...


If you have reached out to me, either directly, or through a mutual acquaintance, thank you! You have no idea how much it means to our family to have help and support from people that do not even know us. From the bottom of my heart, thank you. I have kept every single contact that has been sent my way, and I promise to do my best to follow up. It may just take a while. 


I was struggling with this feeling for a while, and could not figure out why. I want help, someone to talk to, someone that knows exactly what we are going through. But at the same time, I don't want to talk to anyone that is associated with "cancer". Silly right? Completely opposing thoughts. But then, my friend Catie summed it up best for me, "You need to have your story first."


So, here I am, going through my story. And, I feel I can say that because I know that all five of us will have different takes on how this affects our family. But, I also know for certain, this will not break us. We are ALL in! 


Beware, what you are getting here is Ellie's story. but it's also my perspective of her story. To be honest, this blog is:

1. a cathartic means for me to sort out whats going on in my head
2. a way to update family and friends on Ellie's diagnosis and treatment
3. anything else God wants it to be

Here we are, at the end of a longer than expected post that went a lot of different directions. Thank you for your patience with our family as we adjust to this new normal. Thank you for your patience with me as I adjust to putting our family "out there". (Social media and I do not mix. Both Mike and I have been off Facebook for several years. The idea of this blog is a little scary.) 


And, as always, thank you for your continued love, kind words and prayers.

Friday, April 15, 2016

#fightElliefight

To everyone that has said a prayer for our Ellie, thank you.

Your prayers are helping to speed along her progress.

Ellie had an appointment today to get blood work done, and as promised by her doctor when she was discharged, also get blood and/or platelets. I am thrilled to say that she needed neither! Her numbers are trending up so well, that we do not need to go back on Monday either. As long as Ellie shows no signs of regression (fever, bleeding, paleness) she does not need to go back to the clinic until Wednesday for her next chemo treatment. 

As of this morning, her numbers are as follows:

Hemoglobin: 10.0 (normal 11.5-14.5)
Platelets: 36,000 (normal 140,000-450,000)
WBC: 2.0 (normal 4.5-13.5)
ANC (Absolute neutrophil count): 230 (normal is 1400-8500)

If you were to look at when I first posted these number over a week ago, it wouldn't seem like much overall improvement. However, since then, all of these numbers became extremely low while the leukemia was being killed off. Now, they are slowly trending up, which is exactly what we want to see. Her ANC, which is the number used to determine how well the body can fight off infection (<500 is considered high risk), is one of the highest it's been yet, the furthest from a chemo treatment. The numbers tend to inflate drastically after a chemo treatment. So the fact that it's this high a few days out is really good. (I hope I'm making sense!)


All of this is a very detailed way of saying that Ellie is doing great!


She is so much happier being at home. Her attitude has improved dramatically, as has her eating and sleeping. She still is not wanting to move on her own, but does not mind doing her physical therapy exercises. She can be very fussy when she is picked up, and I just realized today that it's probably due to all of the lumbar punctures she received while in the hospital. I cannot believe I did not think about that pain earlier. Of course, we have been careful with her all along, but now I am more aware about that area of pain on her body.


How are we all doing? Considering everything that our family has gone through, the five of us are doing really well. I'm hoping that as the next few days slow down, I can write a more detailed post about our family experience, as well as other things that have been on my mind. But, for now, we are good and so happy to be back together. 


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


Pray that she regains strength in her legs and wants to move around. 


Pray that her numbers continue to trend upward and that she does not regress at all. Ever.


(Jill, even though I am not on any form of social media, I will still use the mess out of that hashtag. Thank you! Everyone else, feel free to use it too!)

#fightElliefight


Thursday, April 14, 2016

And She's Back!

Wow! What a difference being at home makes. We have our sweet Ellie back!

Honestly, she is a completely different child now that she is home. She is falling asleep and staying asleep beautifully. (This was a concern of mine because she had been sleeping in a bed with me for 11 nights.) She is talking and laughing, compared to crying and constantly wanting her pacifier while in the hospital. It is almost unbelievable how much she changed with just one good night of sleep at home. 


Now, this good attitude isn't without it's weak moments. She is still in pain, and has been complaining about her tummy, legs and knees hurting. She did not want to move at all today, BUT for the most part she sat happily wherever I placed her. The few strengthening exercises I did with her were reluctantly received, but it is still early on. 


Oh, and she ate food! A lot of it!


Please pray that she starts regaining her strength and actually wants to move on her own.


Pray for her complete and permanent healing. 

Wednesday, April 13, 2016

Induction - Day 8: Home Sweet Home

Today is our first big milestone...Ellie is home! 

Let me back up a bit though.


The past few days have been tough for Ellie and myself. I tend to think that the term "mood swing" is a joke. That implies that there is a "swing" to a good mood, and I even imagine a balance between the good and bad moods. For about 3 days, the good moods were almost nonexistent. She vacillated between a "I can tolerate this" mood to a "hysterical rage" type of mood. Life has not been fun for her, and rightly so. We can only imagine the type of pain that she is in, and while the steroids are helping her physically, they are wrecking havoc on her little mind. 


(Side note: I quickly realized that I was a large part of the problem. For whatever reason, she would scream the loudest when I was around. I suppose this is an instance where mom gets the worst of everything. With that in mind, I tried to keep her occupied with other guests/nurses/volunteers. But, when it's 10pm and we are going to bed, I'm the only one around. This led to her screaming hysterically one night for over three hours. I promptly texted my mom and dad and apologized for all of the ways I was mean to them when I was on steroids as a teenager. While I know that the steroids are absolutely necessary, I also know that they are absolutely terrible.)



Passed out in the morning after a long evening of crying.





Feeling a little bit better and finally eating some food!
Ellie is also sitting up on the edge of her bed which is a huge improvement.


Meeting Cleveland Indians Pitcher, Carlos Carrasco.
#Ellieisnotimpressed

We have made it through this tough time, and things are looking up. She received more platelets yesterday, and late this morning, Ellie received another lumbar puncture to administer more chemo into her spinal fluid. She was then sent back to her room and given another dose of an IV chemo drug. With both of those things accomplished, she was free to go home! After waiting for her prescriptions and discharge papers, we finally left the hospital around 5pm. Hallelujah!


Waiting to go in for her lumbar puncture.

Resting after her procedure.

After not being able to eat for 12 hours, Ellie was ravenous.
She requested a hot dog and fries.




After 12 days, Ellie is finally heading home!


Ellie goes back for blood work on Friday, and will likely receive more blood and platelets. This will all be done in a clinic at the hospital as a day patient. More than likely she will go back again on Monday to get more labs done on her blood. We will then go back next Wednesday for her next chemo treatment.


As hoped and expected, she hardly has any white blood cells (count of 0.9). As the bad stuff dies, so does the good. If her numbers were higher, it would mean that the leukemia isn't dying. Her numbers are low, so we know it's going away. But, with this comes a very compromised immune system. ANY virus could quickly send her to the hospital. With that in mind, she will be quarantined at home for this first month until we know that she is stable. Quarantining her at home also means severely limiting visitors that come into our home. So if you've offered to come over and help, thank you so much! But, for these first few weeks we have to politely decline, only to keep Ellie safe. 


We have strong hope that since she is now home, she will begin to recover more quickly. She happened to be asleep when I met with a Physical Therapist the other day, but she gave me ideas on how to help Ellie regain strength in her legs. We will begin working on that tomorrow. 




These past 12 days, it has taken a village.

To Mimi and Papa: Thank you for taking such good care of Eva and Nora. Never once did we have to worry about whether they were ok. Knowing that they were with you allowed Mike and I to be completely present for Ellie when she needed it most. You are such a blessing to our entire family.


To Nana and Grandpa: Thank you for coming to the hospital and helping us take care of Ellie. That extra support made all the difference. You helped take care of us, so we could take care of Ellie. Mom, thank you for taking the night shift that last night in the hospital.


There are so many people that we are deeply grateful for. The list feels never ending. For now though, please know that we have read every text, email, link, card, and they have all meant so much to us. Our Ellie is loved. Our family is loved. We are ever so appreciative.


Thank you.


I could go on, and maybe later I will. But at this moment, our family is finally under one roof together, and it is time to go to bed.

Monday, April 11, 2016

'Roid Rage

Thank you to everyone that is asking about and praying for our sweet Ellie.

Today was better than the previous days, but not without it's difficulties. She is still having intense mood swings from the steroids, which means she spends a lot of the day crying. Any little thing can set her off, especially when she does not get her way. There is a fine line that we are walking of being understanding about her circumstance, but also not letting her rule the roost so that when we go home she becomes a complete Baby B. (Yes, the 'B' means what you probably think it means. It's a nice way of saying that your child is being completely unreasonable without actually called them a crude name. Feel free to borrow it.) Needless to say, she is not the sweet, happy little girl that we checked in with last Saturday. It is completely understandable though, and I cannot imagine what her little body is going through.



Life is not good right now.

Distractions are welcome, and today she received plenty of them. Ellie enjoyed touch therapy, music therapy, and was even able to go outside for a wagon ride today! For her first week in the hospital she was on contact restrictions, which meant that she could not leave her room, and anyone that visited her had to be in a gown, mask and gloves. Now those restrictions are relaxed and she is enjoying the freedom.


Mike and Ellie's nurse trying to get her to stand up before going outside.

Life is about to get a little bit happier. 


Ellie's first time outside in over a week.
And her first time out of her room that was not for a procedure.


Fun with bubbles!



Ellie had several bowel movements today, which is a huge relief. (Ah, the things we get excited about as parents.) However, Ellie is now facing another, more serious problem. She hasn't really walked or stood in two weeks due to all of the pain in her legs. We have tried to get her to stand, but she just collapses in our arms. We are going to have someone from physical therapy come tomorrow to work with us and her to begin strengthening her legs.


Please pray that Ellie regains strength and mobility in her legs soon.


Pray that the mood swings end completely while she is on the steroids.


Continue to pray for Ellie's complete and permanent healing.


If you are reading this now, thank you for all of your love and support for our family. We are more than blessed.


Ellie will often grab my hand at night when falling asleep.

Sunday, April 10, 2016

Induction Road Map

Unlike other cancers, there are no "stages" with Leukemia. But there are risk factors, low, standard and high risk. Ellie is currently considered standard risk. (As test results come back from her bone marrow and spinal fluid, this could change, but is unlikely.) These things work very much in our favor because it means that her course of treatment is known and proven to be effective. ALL has extremely high success rates (somewhere around 90%, I believe), but that is not too concerning to us because we are believing in her complete and permanent healing.

We strongly feel that with faith, prayer and this course of treatment, not only will Ellie be healed, but she will thrive and be a testament to our Heavenly Father's love. 

Here is what Ellie's treatment looks like for the first month, or the Induction phase...

Diagnosis: Pre B Cell Acute Lymphoblastic Leukemia
Treatment Protocol Drugs: Cytarabine, Vincristine, Dexamethasone, Pegaspargase, Methotrexate

Day 0: Cytarabine via lumbar puncture into spinal fluid
Day 1: Vincristine via IV port
Day 4: Pegaspargase via IV port
Day 8: Vincristine via IV port and Methotrexate via lumbar puncture
Day 15: Vincristine via IV port
Day 22: Vincristine via IV port
Day 29: Methotrexate via lumbar puncture
Days 1-28: Dexamethasone (steroid) given orally

After this phase is complete, it is hoped that Ellie will be in complete remission from the leukemia. From that point forward, all of her treatments are to make sure that the leukemia does not return. If it all goes as it should, the entire process will be about 2 years and 3 months. For the first 5 months, Ellie will visit the hospital weekly as an outpatient to receive her chemotherapy. Once the 5 months are up, she will then switch to once a month treatments at the hospital. Throughout this entire process, she will also receive various medications at home, including an oral chemo drug and steroids.

The port that she received will stay in her body the entire duration of the treatment. It will be used to administer drugs as well as draw blood. When it is not being accessed, it looks just like her normal skin, with a large bump underneath. There is nothing protruding from her skin. When it needs to be used, a needle will be pushed through her numbed skin and into the port, thus accessing the tube inside her vein.


Ellie has been feeling better today. Her doctor and nurse practitioner that saw her today commented on well she looked, especially from yesterday. Dr. Mogul remarked that "she is exactly how we want a patient to look on day 5." She is still not acting quite like herself, but so far she is remarkably better from the two previous evenings. Ellie still has a lot of pain, specifically in her mouth (jaw pain, a side effect of the Vincristine), stomach (constipation from everything), and her legs (general leukemia side effect). She has not walked in almost two weeks due to the pain. We have tried to make her sit up unassisted in order to engage her core and legs. We have also tried to make her stand, but that was too painful for her, so it will be something that we will have to work towards.


Right now, we are scheduled to leave the hospital on Wednesday or Thursday. But, if Ellie does not reach certain mobility milestones, then her stay will likely be extended.


Please pray that she begins to respond positively to the steroids. She needs to regain her strength and her appetite needs to return.


Pray that her constipation goes away and does not return, as it causes her a lot of pain.


Pray for Ellie's complete and permanent healing.

Saturday, April 9, 2016

Induction - Day 4

I'm sure this comes as no surprise, but this is hard. 

The past 24 hours have been very difficult for Ellie.


Today is Day 4.


Today she received another chemo treatment. It is a peg drug. That means a lot of things that I do not quite understand yet, except that it was likely that she could have had an allergic reaction to it. She did not, and made it through beautifully, thank you Lord! 


What I am learning though, is that chemo is not necessarily the hardest part. (It very well may be down the road, but right now it seems to be easy.) Right now, her difficulties lie with the constant monitoring and sheer amount of medicines that she is taking. I counted how many medicines she has to take this morning. Seven. This little girl had to take seven different medicines, just this morning. And to be honest, she's been amazing. She will even do some of them all by herself. 



Ellie's morning cocktail of drugs.

But then, there's the steroid. It's throwing everything off. Not only does it taste disgusting, but she's already started showing side effects, particularly mood swings. The steroids are what will make this first month so hard on her. She does not receive chemo every day, but she does receive steroids every day. She seems to do great in the morning, but by the afternoon her mood completely shifts and she is miserable. Nothing calms her down until she falls asleep. And even then, it tends to be fitful sleep.

Her numbers have not improved too much, but that's to be expected. As the leukemia is being killed off, so are her good cells. She received platelets yesterday, and then blood today. Her doctors seem very happy with her progress so far. The one that I met with today said that "her trend is up," so she is doing well with the treatment. I read enough Lurlene McDaniel books as a child to know that it might get worse before it gets better. It is hard to see her in this pain and overall discomfort right now, but I know that it is all a part of the process. 


There is so much more that I want to say, but don't have the strength to write right now. If you have texted or emailed me but have not heard back from me, I'm sorry. Trust that I have read every single word of what you have written, but I just do not have the mental and emotional energy to respond right now. 


The response of love and kindness that we have received from family, friends, acquaintances and even strangers has been overwhelming. Thank you. Your prayers, thoughtfulness and love is felt and very much appreciated. 


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


Pray that she does not experience any more side effects and that the mood swings will subside. 


Pray for complete strength for Mike and myself.


Pray for Eva and Nora. 



(From previous day)
Sleeping peacefully after a couple of rough nights.


(From previous day)
This is her preferred way to sleep. Especially at night.



When I wasn't looking, she had fun coloring on her face, which scared the nurses!
She loved getting her own, real, stethoscope.