Fall Stampede Recap

Wow! Thank you so much to everyone that helped make Fall Stampede a huge success for our team, yorksALLin. In Ellie's name, we were able to meet our goal of raising $500 for the Children's Cancer Center here in Tampa. Actually, we exceeded it. What?! That is amazing! I honestly thought that it was an unrealistic goal. Thank you for proving me wrong. By giving to the CCC, you have shown our family a kindness and generosity that will not be forgotten.

To everyone that donated time and/or money, thank you so very much. To those that donated, who may not even know Ellie, thank you for giving to our cause anyway. While I know that there are so many other programs out there to help families, it is nice knowing that the CCC is local, and all of the donations stay here. 

To everyone that showed up for Ellie on Saturday...wow! We were blown away by the love from family and friends. Thank you for giving of your (early) Saturday morning to support such a wonderful cause. Excluding our family of five, we had 23 people there cheering on Ellie! 

Nobody was scared of the Chick-fil-A cows this year!

Uncle Stephen, Aunt Andrea and our friend Josiah walked with us.

GO BULLS!

Spoiler Alert: Ellie did not run/walk the entire mile, only about the last 50 yards.
Still, she looked cute doing it.

This is one of my favorite faces that Ellie makes. 

Crossing the Finish Line with Mommy and Uncle Jeffrey.

Uncle Stephen, Aunt Andrea, Mike & Diddy crossing the Finish Line.

ADPi sisters and lifelong friends.
These are six out of our collective nine children.
They are amazing because they got up early and drove very far to see us.  ;)

The Fabulous Ciampa Family

Diddy, her favorite lamb stuffed animal, was the official mascot of Fall Stampede.
You know, besides the cows.

Megan and I after running the 5k.
It was humid.
And I sweat like Josh on Bachelor in Paradise.

Thank you for helping our family support the Children's Cancer Center. It was a lot of fun and we cannot wait to do it again next year!

I apologize for the delay in posting this recap. That evening after the race, we discovered that we had a lice situation. I know. So, Saturday night, Sunday and Monday were spent de-lousing our heads and home. Since Tuesday, Ellie and I have been at the hospital every day. It has been a very long and emotionally tiring week. More on that later. But, the roughest part of Ellie's treatment ends tomorrow. Hallelujah! 

Second Half of Delayed Intensification

Ellie made her counts on Tuesday! This was such a huge relief, as now she can move forward with her treatment and get through the rest of this difficult period. I just want this part to be over. Each day that we are able to move forward gets us closer. 

One high point to this week so far is that Ellie was able to avoid the overnight hospital visit. We worked with her doctors, got her there early on Tuesday, and after her blood counts were confirmed to be high enough for treatment, Ellie began an IV to get hydrated. One of the new chemo drugs that she received can cause kidney problems. To avoid any complications, she had to be extremely well hydrated before getting the drug, and monitored for 3 hours after where her urine was also checked. It can be a very long process, hence the reason why it is usually an overnight trip. Ellie pushed the limit with each milestone along in the day, but we were able to go home that same night. 

An example of her stubbornness that day... Ellie received a lot of fluids for her size, in a very short amount of time. Her nurse told me to check her diaper in 15 minutes, because that's how fast she was expected to output urine. Dry. Checking her urine was the only way to determine if she was hydrated enough to receive the chemo, so we had to wait for her to pee to get a sample. Five hours later, she FINALLY peed! By the time that happened, she was writhing in pain and yelling "the pee hurts!" I bet it does, little girl. She then immediately soaked 3 diapers over the course of 45 minutes.

Side note: It is so hard to not treat Ellie like a baby. Not only is she our "baby", but she is also small for her size and mostly bald. So, yes, she still wears diapers and uses a pacifier. She looks like an extremely capable one and a half year old.

That stubbornness made the day last about four hours longer than it should have. Even though Ellie ended up being at the hospital for 11 hours that day, we are still grateful that everyone was able to sleep at home that night. Ellie had her first bit of vomiting due to the chemo in the middle of the night, but fortunately it didn't last that long. She hardly ate anything during the day, so there was not much to come up. 

Picking at my salad, which was all she ate the entire day.

So, to sum up, Tuesday was a very long, hard day for Ellie. Not only was she at the hospital all day, but she received four different chemotherapy drugs that day. Four! That is crazy. This will never feel normal, no matter how far along we get in the process. And, I think that is ok. 

We were back at the hospital the next day for further treatment. We went back again this morning, and will go again tomorrow morning. Next week, we repeat: Tuesday-Friday. One thing that makes this week easier is that we have decided to keep Ellie's port accessed for the four days each week that she receives treatment. It makes the hospital visits much smoother and quicker, but I'm sure that it is causing some discomfort for Ellie while at home. 

Ellie was not happy to go back to the hospital on Wednesday morning.

"This is My Fight Song"
While at the hospital on Thursday, Ellie was videotaped for a local school project.

This long week is almost over. I am so grateful. Next week will be another long week. Ellie will likely become neutropenic again, but this time it is probable that she will also need a blood transfusion. 

Please continue to pray for Ellie's complete and permanent healing. Her prognosis is SO GOOD! It brings us such comfort and relief knowing that at the end of this process, she will be ok. But, it is still so hard to go through it. 

Now, on a lighter note...

Fall Stampede is this Saturday! To everyone that has donated money to the Children's Cancer Center or has signed up to run, THANK YOU! We are humbled by your support for Ellie and the CCC. 

It's not too late to donate. We are less than $200 away from our fundraising goal! Thank you for your continued love and support for our family.

Oh, and somebody, please remind me to take a group picture on Saturday.

Enjoying the Break

While Ellie waits for the second phase of Delayed Intensification to begin, I thought I would share what she has been up to this past week.

When we all thought Ellie would be going into the hospital overnight last week, Eva made her a book to surprise her. The hospital stay did not happen, but Ellie still enjoyed her book.

To say our girls love animals would be an understatement. They love learning about all animals (thank you Wild Kratts), and the more exotic and difficult to pronounce, the better. Here is Ellie pretending to be a Peregrine Falcon. And yes, she really does run around the house, flapping her wings and yelling "I'm a Peregrine Falcon."

One of the side effects of the steroids she was on is insomnia. I have found that the side effects tend to kick in once Ellie is off of them and last for about a week. This particular day, she built a fort around herself in her crib. But, she did eventually cave and napped for a little bit. That's when I snapped this.

And, some cuddles on the couch after waking up.

Finally, we went to the beach the Sunday of Labor Day weekend. Even though Ellie is basically housebound, occasionally going to the beach seems less risky because we are outside. Maybe we are being naive. Still, Mike and I can't help but think that the sunshine and fresh air is good for her. It really boosted her spirits that day, so we were glad that we made the decision to go.

Tomorrow we head back to the hospital. We are hopeful that Ellie's counts will be up and she can resume treatment.

Speed Bump

Well....

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.

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. 

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! 

You can sign up here for the race. 

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.

You can donate to our team here.

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!

Neutropenic

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.