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April
5
2021

We made it!

Hey everyone!

Let me start off by saying, we made it! All four of us are officially residents of Washington, DC! 

But before we get into that, I need to rewind a bit...

The movers were at our house on March 23&24 packing everything up. While that was going on at home, Evelyn and I were in the hospital on the 24th for a second bone marrow biopsy and a CT scan of her chest/pelvis/abdomen.

Wednesday was an emotional rollercoaster. The movers completely packed out our house in two days(which was a miracle!) leaving us with nothing but our luggage and air mattresses.

Then at 2:12pm I was able to facetime Chris with the most amazing news!

I didn't want to share any of this until it was official, but the scan showed that there is no tumor to be seen in Evelyn's lymph node. The tumor under her diaphragm, wrapping around her spine and aorta, has decreased in size and is practically gone. The large mass in her abdomen has shrunk more than half of its original size and is pulling itself out of her liver. There is also no new lesions to report.
All of this is only after two rounds of chemotherapy, which she is definitely responding well to! WE ARE ECSTATIC to say the least!

From the very beginning our doctors were upfront and honest with us. We went into it not expecting much to come out of those first two rounds. It's pretty incredible. Even looking at the images from her scans you can clearly see the difference. Especially the mass in her abdomen. 

After all this great news we then had to turn around and say goodbye to our doctors and nurses. This part was harder on Chris and I, especially since these people were with us during the darkest moments of our lives. We could never repay them for everything they have done for us. (and if you are reading this, Thank you! I could make this part sappy but I won't. You all are amazing and what you do is extraordinary! Each of you have become a part of our family and you will always hold a special place in our heart.) 

Now on to the move...

The kids and I left Hawaii on the March 26th. Chris' 30th Birthday!! What a great gift! Putting your wife and kids on a plane and sending them 4,826 miles away.😉 He owes me.
I say he owes me, but in all honesty, he busted his butt getting our house ready for our move out inspection, shipped our car, and dealt with paperwork on top of more paperwork. 

The kids and I arrived on March 27th. I wish I could say we made it in one piece, but I'm pretty sure bits and pieces of my sanity are scattered across the country. Thankfully, I had my mom to help me out. Getting over here was not easy. Our plane got a flat tire somewhere across the pacific, which made us take a pit stop to LA, which then caused us to miss our connection in Chicago. Once we got to Chicago we ended up sitting in the airport for 10 hours until our next flight. It was okay though. Nubs got to sleep, Ev got glows sticks from Jawas(Star Wars), she got to see Storm Troopers, and the Easter Bunny! Then her brother gave her a lesson on how to roll through the airport on her luggage. All in all, it was a pretty easy layover. We finally landed in DC sometime after 10pm, got a car and a hotel for the night, finally had a real stromboli, and then called it a day!

We moved into our new house on Sunday. Nubs went to PA that afternoon with his Gammy & Gpa.
On Monday, Ev went into the hospital for her third cycle of chemotherapy.

This time we spent four days in the hospital for chemo. I went into this round pretty anxious since everything for this cycle was new. New chemo drugs, new side effects, new hospital, doctors, nurses...all the things--
all new to us. So far the doctors have been great and the side effects have been minimal. If anything she has had nausea. Her hearing seems to be fine so far (hearing loss is a common side effect that could happen now or later down the line. This is something we will be monitoring). She even gained a little weight this round, which for her is always a good thing, but man, she has the perfect pinching cheeks now! 

If you ordered a t-shirt to support Ev be on the lookout, it's coming!
I've posted pictures from the last couple weeks in the album on here.


Thank you all for the prayers, positive thoughts, and good vibes. Please keep them coming!!
Ev isn't out of the woods yet, but she is definitely on the right path!

Your love and support mean absolutely everything to us!

-The Carr O'hana

 

 

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March
24
2021

We're moving!

Hello everyone! 

We haven't updated in a couple weeks. This will be a short update though.
Things here have been crazy. Not necessarily with Evelyn but just trying to get things in order for our move to DC.

Chris finally received orders to Washington, DC last week. Since then we have hit the ground running. In between trying to pre-pack for our pack out which is happening today thru Thursday(March 23-25) we have made a couple trips to the hospital. Mostly for blood work but also transfusions, platelets, and because I accidently pulled out her feeding tube. It got stuck on her IV pole wheel when I went to pick her up. Then 3 days after getting a new feeding tube placed we went back in for another one. I'll spare you all on the details of that one. Lets just say-- it was gross. 

Tomorrow(March 24) Evelyn will be having another bone marrow biopsy done and a CT scan. They will be putting her under anesthesia for these procedures so please if you could, keep her in your thoughts and prayers. I'm praying this will go smoothly and our plan stays on track. 

Our flight from Hawaii to DC is on Friday. We will land in DC on Saturday, Nubs will be going to Pennsylvania on Saturday night, Evelyn will start her 3rd cycle on chemotherapy Monday (March 29th), and Chris will be joining us in DC on Wednesday or Thursday. 

Its been crazy. We're going with the motions and getting through it.

I'll post a second update soon. 

 

Thank you all for the love and support!!

Be brave in the waves Ev. 

-Hailey

March
10
2021

back and forth

March 7-9, 2021 Day 33-35
Chemo Cycle Two: Day 5

Evelyn finished her second cycle of chemotherapy on Sunday. She did amazing. Nothing major happened during this chemo cycle! Shortly after chemo finished we were discharged and we went home! The things I didn’t want to jinx myself on were fevers, puking, infections, trips to the PICU, and extra procedures. We almost made it without anything extra. I’ll get to that...

The excitement she gets when she walks through the front door always makes us smile. She doesn’t acknowledge anyone until she squeals for Zeus(who  is already at the door waiting for her)! 
Everything was going as great as it could. We napped and played until dinner time. Ended up ordering Teddys (burger joint out here) and watched the new Disney movie, Raya and the Last Dragon(if you haven’t seen it I highly recommend it! It’s cute!)  
Ev didn’t eat dinner. Not a single bite. [Red flag #1🚩especially since it was Teddys!] Then when we were watching the movie she was extra cuddley [Red flag #2🚩] Chris felt her forehead and gave me one look. I knew exactly what he was going to say. She was warm. To our surprise though, she was only 99.8° which is warmer than usual but still under our threshold of 100.4°F.  It quickly crept up to 101.7°and then we had to call our doctor at 9:45pm. Back to the hospital we went. When we got there Ev ended up getting sick in the parking lot. Once again, we were admitted. Labs were done blood cultures, a chest x-ray, and antibiotics were started as a precaution(just incase she had an infection—she didn’t!) 
At least this time we were able to get our room back and not put in the dreaded Room 8 again. 
So like I said, we ALMOST made it through this chemo cycle without anything extra but—we made it home before she started feeling crappy
! Small victory! 

Ev was only admitted for 22 hours and we were allowed to go home once again late Monday night! 

So far so good! No fever or sickness all night or today. 

The only event that happened today was Zeus got on a plane for Pennsylvania. He is our 2nd child (Ev is technically our 3rd “baby”—just kidding) Honestly though, I treat Zeus like a child.
Those big brown puppy dog eyes starting at me through the crate door, unsure of what is going on, as a total stranger drives him away. ::I’m bawling::
I personally hate flying, but flying for 12+ hours in cargo, in a crate...ugh, breaks my heart!! 
I keep telling myself we’d be more distraught if we had to leave him behind. (Not even an option!)

On the plus side, Awpaw(my Dad) is all ready for his fur-grand-baby to visit and it is one step closer to finally getting back to the east coast. 
We still don’t have official orders, but the plan remains the same. We are hoping to leave Hawaii between March 25-28th. 
Evelyn is scheduled to have another CT scan and bone marrow biopsy(also another sedation) on March 24th. 
If everything goes smoothly, we are okay to travel in that little 3 day window!
If things don’t go as planned we do have a plan B(and a plan C). Those plans just keep myself, Evelyn, and Chris in Hawaii a bit longer. 
Nubs(little Chris) will be going to Pennsylvania regardless of Plan A or B(or C).
I’m aware it’s not ideal. Chris and I have been back and forth on this over and over. It’s hard even thinking about the fact that we won’t be all under one roof for a little. I’m use to Chris leaving, but not my baby! It’s just one more small heartbreak and it’s temporary. It saddens us, but he will have both sets of grandparents, all of his aunts/uncles, and cousins around, he will be well taken care of, and it will give him some stability in this chaos. Once we get to DC, get moved into our new home, and get some cancer stuff out of the way we will all be under the same roof again. It’ll only be a month or so—until he is calling me asking if he can stay for the summer🥴(he’s already mentioned it actually!) We’ll also only be 2 hours away, so really it’s a hop and a skip to get to him. 

Anyways—before I forget, the last day to order T-shirt’s to support Evelyn is March 15th! Here is the link:

The love and support you all have shown us is absolutely amazing and I’m not sure if we will ever be able to repay you for all of your kindness!
Once we get through this we will definitely be paying it forward in some way. 
The meals you all made, care packages and cards sent, donations made, T-shirt’s/stickers ordered... 

THANK YOU!
THANK YOU!
THANK YOU!

I wish Evelyn was a little bit older to fully understand how many amazing people she has standing behind her! One day she will know!
I recently opened Evelyn a savings account at our bank. Every penny that was given to support her is in there! I wish you all could have seen the tellers face when I gave her the amount that was being deposited into the account she had just set up for a two year old. I was definitely given a puzzled look but never asked any questions.(thank god, because I don’t think i’m there yet.) Typing is one thing, but verbally saying it out loud is another. 

Again, thank you all. 

🧜‍♀️Be brave in the waves Evelyn🧜‍♀️

-Hailey💜

#bebraveinthewavesevelyn
#splashysassySTRONG
#neuroblastomafighter
#teamevelyn
#pediatriccancerawareness





March
6
2021

...and we’re back!

March 3, 2021 to March 6, 2021: Day 29-32

Sunday to Wednesday flew by. 
We had the best time together as a family
It was the recharge/reset that we all needed. 
We didn’t do much of anything. We stayed at home, relaxed and felt somewhat “normal” again. A few friends & neighbors stopped by to say hi.  Chris made Evelyn her own IV pole since we couldn’t find one on island. 
Ev played a lot, went on plenty of bike rides/walks, and ate way to much junk food! (Mainly Reese’s cups)
 She definitely got her appetite back! This girl was putting her brother to shame. (Nubs never stops eating!) Thank god Grammy D forced me to the grocery store for the first time in a month. 
Ev gained a whole pound in 3 days at home. It doesn’t seem like much but trust me it is. She has cheeks again! 

Chemotherapy Cycle Two: Day One-
Wednesday, March 3, 2021
I will say this morning was a tough one.  
Physically getting out the door was easy for once. We were all ready to go—shoes on and everything.

 Mentally getting out the door was HARD!
I pretty much had a full on temper tantrum. Complete with meltdown🤪
The most relatable way to describe this is like...when you go on a nice long, amazing vacation. Then vacation ends — you realize you have to go back to work the next day. You sort of dread it and frankly, you just don’t want to go, but you also know you have to go.
 yeah—kinda like that. make sense? 

Regardless of my tantrum we made it back to the hospital shortly after 9:00am. The ward was full. The only room they had open was the same room we were in that very first night. The same night we found out our daughter had cancer. 
The flood of emotions we felt walking through that door was intense and did not make the morning any easier.  
Ev completed Cycle Two: Day One in that room. By dinner time they were moving us to a new (bigger) room! (Hallelujah!) 
Despite the wave of emotions Chris and I were on that morning, I don’t think Evelyn had the slightest clue. We try so hard to keep all the negative energy, bad attitudes, anger, stress, you name it...keep it at the door or leave it in the car. 

Cycle Two: Day 2 and 3 (day 30 and 31)
Evelyn is still kicking cancers stinky booty and doing an amazing job might I add! So far things have gone smoothly compared to the first cycle. Fingers crossed they stay that way and we get to bring her home once more before we move. 

Things that are different this cycle:
• Smiling and interacting with nurses and doctors
• walking long distances without her stroller 
(like to visit friends who spoil miss Ev!😝)
• eating 3 meals a day and then some
• wanting out of bed

There are a couple other things, but I’m afraid to jinx myself so I’ll wait until this cycle is done to talk about those. 

Today is Day 4 of Cycle Two(Day 32). There is a possibility we might be able to head home again on Sunday. (Fingers crossed) 

The Move:
Hawaii to DC
All we know is we will be there sometime between March 25 and March 28. 
Chris is still waiting on “official” orders.  Until we get those we can’t pack up or ship our household goods/car, or book our flights. 
We’re at a stand still. 

I’m slightly stressing but I’m also not surprised. 
Our move from GA to CT was similar in ways.
Last minute fiasco. Controlled chaos.
The day the truck came we were still packing up our house, cleaning it, and moved out. THEN we drove from GA to PA with a 4 year old. 

WE GOT THIS! 

What really has me on edge is finding a school for Nubs. I hate that we are moving him with only 2 months left in the school year. 
We were able to conference with the DCPS head rep. and hopefully he will be able to get us into one of the two schools we requested. 
Fingers crossed. 

Day by day things are becoming more tolerable. 
We’ve all been doing okay. It’s okay to just be okay. 

As always, thank you!
Thank you for all of your support, not just for Evelyn, but for our family. 

Keep the prayers coming! 

🧜‍♀️Be brave in the waves Evelyn🧜‍♀️

💜Hailey





February
28
2021

Guess what...

Day 26

WE ARE HOME! 

Ev was discharged from the PICU this morning and we are officially home! 
(for a little bit at least...)

We have a follow-up appointment on Tuesday and then on Wednesday we head back into the hospital for cycle two of chemotherapy!

We are beyond excited to be out of the hospital and in the comfort of our own home! It’s the best feeling. 

Thank you for all the love and support!
💜💜💜 
-Hailey




February
26
2021

one step forward, two steps backwards

Day 23 - February 25, 2021
Cycle One: Day 15
18 Days in PICU
3 Days in the PEDS ward

...and we’re back in the PICU. 

So, on Wednesday (2/24) Ev was moved back to the PICU. 

A couple things went down Wednesday morning. Her pulse ox kept dropping into the 80s, her heart rate was too high, she had a 102° fever, got sick, levels dropped back to zero, and her right lung was crackling. 
A chest x-ray was done which ended up showing a hazy right lung. After that she was moved to the PICU for closer monitoring and to make sure she didn’t have pneumonia or fluid around her right lung again. 
We packed up her room and transported her down there. Ev got settled into her old room, in her old bed, with her favorite nurses near by. 
Once she was all hooked up SHE WAS BACK TO NORMAL!
Heart rate: normal. Pulse ox: normal. Fever: gone 
For a minute we were convinced she faked it just to get back to her favorite people. 
An ultrasound was done which showed us there wasn’t fluid around her lung and she didn’t have pneumonia. Thank god! She was clear. 

Since everything was a-okay, the Residents who work with Ev daily were able to learn a specific ultrasound scan on her. She got to be the teacher for a little and didn’t mind one bit. 

Now on to today(2/25)...
We are still in the PICU and will be here until  tomorrow(Friday) afternoon sometime. 

Ev is officially radioactive! 
The tracer for the MIBG scan was delivered this morning and was injected shortly after 11am.

Her scan will be done tomorrow at noon! Finally!
 It is a full body scan that she will be sedated for. This scan will show us where the cancer specifically is in her little body and if it is anywhere else that we don’t know about. 

Please keep Ev in your thoughts & prayers. I’m praying this scan won’t tell us anything we don’t already know. 

Last but not least—Ev got a new hair do ...or a new no-hair do?  She can pull it off! All I see are those big beautiful blue eyes😍

That’s all I got! I’ll update again after we get her scan results! 

As always, thank you all from the bottom of our hearts. Your love and support mean everything to us! 

-Hailey💜


February
26
2021

one step forward, two steps backwards

Day 23 - February 25, 2021
Cycle One: Day 15
18 Days in PICU
3 Days in the PEDS ward

...and we’re back in the PICU. 

So, on Wednesday (2/24) Ev was moved back to the PICU. 

A couple things went down Wednesday morning. Her pulse ox kept dropping into the 80s, her heart rate was too high, she had a 102° fever, got sick, levels dropped back to zero, and her right lung was crackling. 
A chest x-ray was done which ended up showing a hazy right lung. After that she was moved to the PICU for closer monitoring and to make sure she didn’t have pneumonia or fluid around her right lung again. 
We packed up her room and transported her down there. Ev got settled into her old room, in her old bed, with her favorite nurses near by. 
Once she was all hooked up SHE WAS BACK TO NORMAL!
Heart rate: normal. Pulse ox: normal. Fever: gone 
For a minute we were convinced she faked it just to get back to her favorite people. 
An ultrasound was done which showed us there wasn’t fluid around her lung and she didn’t have pneumonia. Thank god! She was clear. 

Since everything was a-okay, the Residents who work with Ev daily were able to learn a specific ultrasound scan on her. She got to be the teacher for a little and didn’t mind one bit. 

Now on to today(2/25)...
We are still in the PICU and will be here until  tomorrow(Friday) afternoon sometime. 

Ev is officially radioactive! 
The tracer for the MIBG scan was delivered this morning and was injected shortly after 11am.

Her scan will be done tomorrow at noon! Finally!
 It is a full body scan that she will be sedated for. This scan will show us where the cancer specifically is in her little body and if it is anywhere else that we don’t know about. 

Please keep Ev in your thoughts & prayers. I’m praying this scan won’t tell us anything we don’t already know. 

Last but not least—Ev got a new hair do ...or a new no-hair do?  She can pull it off! All I see are those big beautiful blue eyes😍

That’s all I got! I’ll update again after we get her scan results! 

As always, thank you all from the bottom of our hearts. Your love and support mean everything to us! 

-Hailey💜


February
26
2021

one step forward, two steps backwards

Day 23 - February 25, 2021
Cycle One: Day 15
18 Days in PICU
3 Days in the PEDS ward

...and we’re back in the PICU. 

So, on Wednesday (2/24) Ev was moved back to the PICU. 

A couple things went down Wednesday morning. Her pulse ox kept dropping into the 80s, her heart rate was too high, she had a 102° fever, got sick, levels dropped back to zero, and her right lung was crackling. 
A chest x-ray was done which ended up showing a hazy right lung. After that she was moved to the PICU for closer monitoring and to make sure she didn’t have pneumonia or fluid around her right lung again. 
We packed up her room and transported her down there. Ev got settled into her old room, in her old bed, with her favorite nurses near by. 
Once she was all hooked up SHE WAS BACK TO NORMAL!
Heart rate: normal. Pulse ox: normal. Fever: gone 
For a minute we were convinced she faked it just to get back to her favorite people. 
An ultrasound was done which showed us there wasn’t fluid around her lung and she didn’t have pneumonia. Thank god! She was clear. 

Since everything was a-okay, the Residents who work with Ev daily were able to learn a specific ultrasound scan on her. She got to be the teacher for a little and didn’t mind one bit. 

Now on to today(2/25)...
We are still in the PICU and will be here until  tomorrow(Friday) afternoon sometime. 

Ev is officially radioactive! 
The tracer for the MIBG scan was delivered this morning and was injected shortly after 11am.

Her scan will be done tomorrow at noon! Finally!
 It is a full body scan that she will be sedated for. This scan will show us where the cancer specifically is in her little body and if it is anywhere else that we don’t know about. 

Please keep Ev in your thoughts & prayers. I’m praying this scan won’t tell us anything we don’t already know. 

Last but not least—Ev got a new hair do ...or a new no-hair do?  She can pull it off! All I see are those big beautiful blue eyes😍

That’s all I got! I’ll update again after we get her scan results! 

As always, thank you all from the bottom of our hearts. Your love and support mean everything to us! 

-Hailey💜