Tuesday, August 30, 2016

Speed Bump


Sometimes things do not go as planned. We have hit a small speed bump.

I have been feeling a lot of anxiety about these next two weeks. In order to not carry this burden alone, I have been praying for strength and asking others to do the same. It worked. Yesterday I felt at peace with everything to come. I spoke with several friends and commented that the prayers were definitely working because I was actually feeling good about the week ahead. 

Ellie and I got up this morning and headed to the hospital. There may have been a little grumbling. Ellie because she was NPO (no food allowed this morning), and me because I was experiencing a massive headache due to caffeine withdrawals (this was not the best time to quit coffee). But, overall we were both feeling good about the day ahead.

(Enter the speed bump)

Ellie did not make counts. Her ANC is 480. It needed to be above 750. So, nothing can be done this week. Everything is delayed until next week. And, she is neutropenic again. Ugh.

Ellie was very happy to hear that she was able to go home.

I'm not gonna lie, this felt like a big hit. It's really not, but it just feels like it. Her doctor assured us that this is a perfectly normal thing to have happen, especially at this point in treatment. Some children get delayed a week, some 2-3 weeks. Everything is just so hard on their bodies, and every child can respond differently.

So, what do we do? We wait until next Tuesday and try again. If she does not make counts again, then we keep waiting until her little body is strong enough to handle these drugs.

What is the blessing in all of this? Well, I firmly believe that our Heavenly Father is watching over Ellie and He knew that this was not the day for her. A friend reminded me that everything happens for a reason, and we do not know know the reasons why it was probably best for her not to be admitted today. 

For the next 24 hours, I only have one little girl to take care of and we get to be at home together. 

Finally...sitting here, cuddling with her...you know that wonderful smell that newborns have? (Moms, you know what I'm talking about.) I just discovered that Ellie, once again, has that smell. I will continue to cuddle her for as long as she will let me.

Thank you for your continued prayer over Ellie. Please pray that her body gets stronger and her counts go up.

Please pray for Eva and Nora as they adjust to school, and understanding and comfort for them as Ellie continues with her treatment.

Sunday, August 28, 2016

Delayed Intensification Progess

We are almost half way through Delayed Intensification, and a lot has happened, with more still to come. Ellie made it through her second week of steroids, and we are now going through the withdrawal period. Overall, it's not too bad. Some days she refuses to nap, while other days she naps for 3 hours straight. There has been a lot of moodiness, but a lot of joyfulness! Some days, she cannot stand for anyone to touch her, and others all she wants to do is cuddle. Sometimes she wants all of the food, and other times she will eat nothing. It's a lot extremes, yet without being too extreme. 

Last Sunday, after taking a 3 hour nap, she woke up to
cuddle with me on the couch, then fell asleep again.

Her hair...it's almost all gone. She had a lot of new growth over the past 3 months, but even that is starting to fall out now. 
This started up again last Friday.
There was so much hair after leaning against my chest for a few minutes. 

This past week was Ellie's week off, but we still had to go to the clinic to check her counts and to the infusion center to get her 3rd round of the IVIG. I am pleased to say that Ellie's counts are up! Over 800! Praise God! She still has a cold, but she has not developed another ear infection like she did in the past, so I think that the IVIG is slowly making her stronger. 

Holding on to her lollipop while walking down the hallway from the clinic to the infusion center.
She likes to take her time strolling that hallway, frequently gathering an audience. 

That day was long. We were there for 7 hours. Eva and Nora started school on Tuesday, so this past week was filled with some unique struggles. Since they only go to school two days a week (Tuesday and Thursday), I am now juggling homeschooling on the other days, fitting it in where I can around Ellie's hospital and doctor visits. This means a lot of planning ahead for me and working ahead for the girls. I am not worried about it. Rather, I am so grateful that we have the schooling situation that we do. It is the perfect fit for our family in so many ways, but especially now as we continue with Ellie's treatment. 

Onto this week. It's going to be a doozy.

We are now entering the second phase of Delayed Intensification which brings new challenges for Ellie. There is a new chemotherapy drug that she gets, but she has to be highly hydrated before receiving it. Since it's basically impossible for a 2 1/2 year to drink as much liquid as needed, she will be admitted into the hospital overnight and given fluids. This will happen on Tuesday. That morning, Ellie will go in for a lumbar puncture, and once that's over, she will move up to the oncology floor where she will stay overnight. We will return home sometime on Wednesday. On both of those days she receives another new chemo drug, and will have to return to the hospital on Thursday and Friday to get another dose of that drug. Fortunately, those should be very short visits. Her port will remain accessed throughout those four days, which will also speed up the process. 

So, yeah, we will be living at the hospital on Tuesday and Wednesday, and visiting on Thursday and Friday. And then next week, we get to do (most of) it again. We will return each day, Tuesday through Friday, but there will be no overnight stay.

What we are currently facing is the most difficult part of Ellie's treatment, aside from the initial Induction month where the leukemia was eradicated. Once we are through this phase, we still have two more tough months, but hopefully not quite as hard on Ellie as what she is dealing with right now. From there, around the end of the year, things should get a bit easier for Ellie and our family. 

Oh, and I almost forgot, the hospital stay this week, and everything that follows thereafter, will only happen if Ellie's ANC is above 750. If she does not make this count, then everything gets delayed a week. As of last Thursday, she was just above 800, so we are hoping her numbers continue to go up. We do not want to have the treatment delayed a week if at all possible.

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

Pray that her counts continue to go up, and that every single treatment she receives this upcoming week goes smoothly.

Pray for peace and patience for our entire family.

Due to the busy couple of weeks, we have started the meal train back up. You can sign up for a meal here. We love all food!

And finally, because I am not on social media and have no way of promoting this blog, I have added a section at the top right where you can sign up for these posts via email. Hopefully it works! 

Thank you for your continued love and support.

Update: Whoever just donated $50 to the CCC made me smile REALLY big! Thank you!
You can read all about that in my previous post here

Wednesday, August 24, 2016

Fall Stampede

When you are thrown into the world of pediatric cancer, there are so many things that you have to face. But, there are also so many wonderful people and organizations out there to help you along your way and try to make it all a bit more manageable. One of those organizations that we have found is the Children's Cancer Center.

The Children's Cancer Center is local to the Tampa Bay area, and focused on solely helping families cope with life threatening childhood illnesses. You can learn so much more about their commitment on their website. They host a variety of fundraisers throughout the year, and one of their largest is just a few weeks away: Fall Stampede.

If you are anything like me, you already know about this race. In our family, we lovingly refer to it as the "Chick-fil-A race". It's a race that we have run several times, pretty much just to get the Chick-fil-A calendar that comes in the race goody bag. That calendar comes with great coupons that our family uses throughout the year. So yeah, we would go just for the food. Somewhere along the way I figured we were helping someone else, but I didn't really know who. And honestly, I didn't bother to find out.

<big gulp>

Well, we are now "someone else". Since Ellie's diagnosis, the CCC has been a resource for our family to use. I had no idea that this fun race was going to directly concern our family one day. But, here we are. And now that I know exactly who this race helps, I want to run again and help raise awareness for this wonderful organization. 

If you would, please consider joining our family on Saturday, September 10, 2016 for the Fall Stampede. All five of us will be out there for the mile fun run; I am also signed up to run the 5k. Please join us! I am not a fast runner! I will walk with you! 

If running or walking are not your jam, well, you still get a "free" Chick-fil-A calendar for signing up. (Gosh, now that I'm amping it up so much, I hope that it does not change this year...) But, if you cannot sign up for the race, you can still support our team. We would like to raise $500 for the CCC in Ellie's name.

If you decide to run, you can sign up under our team: yorksALLin. Please let me know if you do. We are so excited for this event! It was always a fun time for our family in past years, but this year it definitely has a more personal, special meaning. 

It kind of feels like that this small experience has come full circle. To take it one step further though, we participated in this race when I was exactly 8 months pregnant with Ellie. Talk about having no idea what the future would have in store...

Thank you for supporting our family and the Children's Cancer Center!

Saturday, August 20, 2016


It has been exactly one week since Ellie spiked her fever resulting in a trip to the ER. I am thrilled to say, that by the grace of God, once we returned home, Ellie never had another fever! This week has not been without its challenges, but the fact that she has not had another fever is a small victory.

The return of a cold has led to much discomfort for her and trouble sleeping. For three nights she slept in bed with me, simply so I could keep her propped up during the night. For the past two nights though, she has been able to sleep in her crib without waking up during the night.

Even though Ellie was off of steroids this past week, it was clear from her attitude that their effects were just starting to take place. She has been very moody and sensitive all week. But, she is starting to eat a bit more food which is very necessary for her tiny body. 

On Thursday, Ellie went back to the clinic for her check up, counts and chemo. (More on her counts in a moment.) The entire process was much harder this time, thanks to the steroids. We got through the day, but not without a lot of struggle and tears from Ellie. But honestly, can you blame her? 

While in the infusion center getting chemo, Ellie is able to order anything she wants for lunch. That particular day her request was: "I want hot dog and chicken nuggets and french fries and pickle. I want all those things." So, yeah...she is definitely getting her appetite back, but slowly. She ended up not eating much of it. 

"Where's my pickles?"

That same day Ellie went back on steroids for a week. If my memory serves me correctly, this is the last time she will have to be on them for about 3 1/2 months. Once she's in the Maintenance stage of treatment (December/January), she will have to go on steroids once a month for 5 days. This will continue until she is completely done with treatment (August 2018?).

Now, back to her counts.

Currently, Ellie is neutropenic. This means that she does not have enough white blood cells to fight off infection. Every time we visit the clinic, there is a very specific number checked that is used to judge her "state of wellness" It's her ANC or absolute neutrophil count. It's a function of several different blood levels, but helps to give a good indication as to what's going on with her blood. For children in the "healthy" world, neutropenic means an ANC of <1500. For children in the "cancer" world, it means an ANC of <500. When Ellie was first diagnosed, her ANC was <100. Recently she has been rocking numbers in the 4000-6000 range. I know! So strong! So good!

Her current ANC is 440. Neutropenic.

We expected this. We knew that this could happen. This is partly why this stage is such a hard one. But still, it feels a bit defeating. There are many bumps along this road, and we are smack dab in couple of big ones. So, until these numbers go up, Ellie is being isolated. Well, as much as we can isolate her while still reasonably living our lives.  

Here is what that looks like right now for Ellie and our family. Ellie stays at home, goes to the hospital and rides in the car. The rest of us try to avoid sick people and germ-filled places as best as we can. When any of us arrive home after being out, we immediately take off our shoes and clothes. Depending on where we were, we will take a shower. But always, we change our clothes. Obviously, lots of hand washing. We still take Eva and Nora out places, simply because we don't want them to miss out. So, I'll take them to dance, but they are not allowed to play in the playroom there. This is the best balance we can find for right now until Ellie's numbers go up.

Honestly, it all makes sense. Leukemia is a cancer that will repeatedly try to come back. This is why treatment is so long and harsh. If by chance Leukemia cells had returned in Ellie's blood, this intense period will eliminate those bad cells. 

The upside is that even though Ellie is very immunocompromised right now, it is not a red flag. So far she has been right on par with her treatment, and this is no different. The most important thing is overall trend, and Ellie's trend is very positive. (That last line is straight out of Dr. Mogul's mouth. And, I must admit, it is comforting to hear.)

Please continue to pray for Ellie, especially during this fragile time. Eva and Nora start school next week, and that brings a lot of worries. Pray that Ellie's counts go back up, and that her body is able to remain strong for the next 6 weeks. 

Saturday, August 13, 2016

Our 1st Unexpected Hospital Visit

(This is probably the most "real time" post I have ever written.)

Ellie had to go to the hospital this afternoon. The bad news is that it was a completely unexpected visit to the ER. The good news is that it ended up only lasting about three hours, and Ellie is now at home with us. 

Yesterday, Ellie went in for her regularly scheduled visit. Check up, counts and chemo. Everything went great, and I even bragged about how her congestion was finally gone!

This morning when she woke up, she was moody and had a constant runny nose. Our niece's birthday party was this morning which, despite Ellie's condition, we attended. My first clue that she really wasn't feeling well was when she complained about being tired and wanting to take a nap at 11am. Then she felt warm, but that seemed to subside after a short time. We stayed at the party for a bit, with Ellie becoming more and more miserable. 

Licking icing off of her cookie during the party.

To be honest, I was not in a good mood either. A mother's intuition is very strong. I knew that something wasn't right with Ellie, and could not shake that feeling all morning. Finally, I decided to take her home for a nap. As I prepared to put her down for her nap, I changed her diaper and she felt warm again. So, I took her temperature.


I immediately knew this was not good. Anything over 100.4 is an immediate call to her doctor. Well, as it turns out, a temperature of 101.2 is an immediate trip to the hospital ER. After talking with her doctor, we packed a bag and headed for the hospital, anticipating an overnight stay. They ran her blood counts (which were so high!) and other series of tests. The culprit: rhino virus. Basically, a simple cold. Thank you Jesus! That, we can deal with. Since the tests confirmed rhino virus AND her counts were so high, she was given an antibiotic we were sent home after just three hours. 

Trying so hard to fall asleep in daddy's lap.

And, she's out.

Home again, home again. Jiggety-jig.

Her fever will likely continue to spike over the next few days. If it goes too high though, then we will have to make a return trip to the hospital. 

Thankfully, she will be ok. But, this was a reminder about how fragile she is. I knew that this phase was going to be hard on her. For the past 10 days Ellie has been sequestered at home, except for hospital visits. However, we are still leaving the house and bringing germs home to her. Even if none of us get sick, Ellie can still get sick. Talking with Mike just this moment, and thinking over the past week, there were a couple of days where Nora had an itchy nose and he sneezed. Neither of them were "sick", but likely still passed something along to Ellie. Any seemingly little thing can turn into a big problem for Ellie.

So...what do we do now? Well, definitely for the remainder of this treatment period, we will be much more intentional with germs and cleanliness in our home, and what we expose Ellie to. Unfortunately, Eva and Nora start school in a week and a half. I am sure that will come with it's own struggles regarding germ exposure. 

If you can, please cover our entire family in prayer now. Pray that Ellie's immune system remains strong during this heavy course of treatment. Pray that we do not expose her to any sick germs along the way.

As always, please pray for Ellie's complete and permanent healing, and for no short term or long term side effects from the medication.

Pray for a strengthened bond for our family. With our Heavenly Father and with one another. 

Thursday, August 11, 2016

First Week....DONE!

If you have said a prayer on Ellie's behalf at any point this past week, thank you! Her first week back on steroids is over, and she did amazing. It was not with out it's rough moments, but it was so much better than we were anticipating, and significantly better than her first week on steroids four months ago. 

Ellie started the week with a lumbar puncture in the day hospital and chemo in the infusion center.

Waiting to check in to the day hospital.

She usually sleeps for about 2 hours after the procedure. 

Her request for when she woke up?
Pizza and a doughnut.
She ended up eating honeydew instead.

Ellie loves to help push her medicine.
Don't worry, it's just saline.

Then, the following Monday, Ellie went back for her peg drug. Oh, let me back up for a moment...

The previous Monday, when Ellie had physical therapy Eva and Nora came with us. They think PT is great fun and love to come. Since that is always a short visit, I figured that it would give me a good opportunity to give Eva and Nora a tour of Ellie's hospital. I took them to the cancer clinic and the infusion center. Everyone was more than welcoming, and so Eva and Nora were able to see all of the places Ellie visits with an explanation of what she goes through. 

If you know Eva, this was not good enough. She wanted to actually see Ellie in action. The next Monday ending up being the perfect opportunity for me to bring both girls to Ellie's visit. 

So, back to where I was...

Ellie had to go back on Monday for a peg drug. She got this when she first began treatment, but has not had it since. Within 4 days, Ellie received four different chemotherapy drugs and was on steroids. See, intense. She has handled it so well though, and I think she enjoyed having her sisters there. But I don't plan on bringing them again unless I absolutely have to.

There was a little bit of moodiness from Ellie during the week, but really is probably better defined as sensitivity.

Here she is, telling everyone in the car that they are too loud and not allowed to talk.
And, here she is wanting "some cuddles".

There were two days that she refused to take a nap, so maybe that was some of the insomnia. I'll gladly take that. When it's your third child, and they are they only one that does not nap, it's less of a hit to your day, if you know what I mean. Ellie slept through the night, every night, without problem. And, her congestion is finally gone! Praise the Lord! She has no cough, no runny nose, no watery eyes...nothing. 

For everyone out there reading this, thank you. Your prayers are helping Ellie get through this. Every day we pray for Ellie's complete and permanent healing, and for no long or short term side effects from the medicine. We are witnessing this prayer being answered. Thank you for joining with us in faith. Please continue to cover Ellie and our family in prayer as we still have a long way to go.

Thursday, August 4, 2016

Delayed Intensification Road Map

Well, it's upon us. Delayed Intensification is here. This is what Ellie's treatment looks like for the next two months.

Here is what Ellie will be receiving for the next two months:
Days 1 & 29: Methotrexate via LP
Days 1-7 & 15-21: Dexamethasone given orally (steroid)
Days 1, 8, & 15: Vincristine & Doxorubicin via IV port
Day 4: Pegaspargase via IV port
Day 29: Cyclophosphamide via IV port
Days 29-42: Thioguanine given orally
Days 29-32 & 36-39: Cytarabine via IV port

So yeah, there's a lot going on these next two months. If Ellie is going to lose the rest of her hair, this is when it will happen. It will probably happen. But, the good news is that it will immediately start growing back and it probably will not fall out again. 

Here's to celebrating Delayed Intensification with a tea party!

Wednesday, August 3, 2016

Calm Before the (Steroids) Storm

We had a wonderful trip (differs from a vacation) to North Carolina, and were so grateful to be able to get away for a week in the midst of Ellie's treatment. Once we arrived home, the next Monday Ellie was back at the hospital to finish out her last round of chemo for this treatment period.

Technically, she has about 2 1/2 weeks off of chemo treatments before the next course of treatment begins, but we have still been back at the hospital. Last week Ellie received her 2nd dose of the IVIG (there will be 4 total). She handled everything perfectly fine, and we continue to see a slight improvement in her congestion. 

Earlier this week Ellie had physical therapy. She is so much stronger that she was, but she still seems so fragile. I really feel like she is probably recovered to 95% of where she was before her diagnosis, but she lost several months of further progress while sick. So while her gross motor skills are improving, I feel like for her, she is still a bit behind. Additionally, her chemo meds and steroids can cause joint pain and nerve ending sensitivity. This is why we are continuing with physical therapy once a month. 

Speaking of steroids, Ellie goes back on them tomorrow. This will be the first time she has been on them since the initial month of treatment. It's not quite as much as the first month where she was given them every single day, but it is still substantial. For the next 28 days, she will be a week on steroids, then a week off, then a week on, and finally a week off. 

To be honest, this next period of treatment....well, I'm not looking forward to it. It's called Delayed Intensification, and as one of her doctor's said "It is just like it sounds. It's intense." It lasts for 56 days, and Ellie will be undergoing a lot during that time. It all begins tomorrow, and I will update the blog with her road map for those next two months.

Please pray specifically for Ellie not to have any adverse side effects from the steroids. 

Pray for patience and peace for our entire family.

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