Thank goodness for monkeys

My amazing coworkers have been working like little elves to help us out. Inspired by Victor, Victoria's sock monkey companion, they have been making sock monkeys, and selling them to help fund raise for us. You should see these monkeys. They are adorable and I can't believe how great they look. Such a wonderful idea. A patient at the clinic even made monkey hats for Jake and Victoria (hopefully I'll have a picture soon). Here is the picture they sent me and the crummy one I took on my phone.

This monkey project really helped cheer me up!

Victoria hasn't been doing that well. They have determined that she has a bacterial infection in her blood but they are still trying to figure out what kind so that they can best treat it. They mentioned today that they will probably have to remove the port that they had inserted. We likely won't have the chicken pox issue ruled out until Monday. Her vitals have been a little wonky too. All the fluids that go along with the new medications are backing up in her lungs, but the diuretics are making her blood pressure drop to much. She still has a fever on and off. On the bright side, she finally seems to be getting some real sleep this afternoon. I don't think she has actually slept in like a week. She just constantly naps, ever so lightly with her eyes half shut. Being the stubborn Victoria that we all know so well, she refuses to wear an oxygen mask or nasal prongs. Thankfully, she will allow Victor to prop the mask up beside her face and this is doing the trick. Thank goodness for monkeys :) 

And so it begins

We have been told that planning will no longer be a part of our near future and today we got our first glimpse. Today was Victoria's first visit at the MDU. It's the Medical Day Unit where she will be having most of her out patient treatments. Our appointment was at 8 am and we were supposed to be there for at least a few hours. Plans for today included: blood tests, chemo, Q&A with the doctors and any transfusions, if needed. Plans did not include: spiking a fever, spots popping up on her tummy and visits from the infectious disease team of doctors. Plans did not include being admitted back into the hospital for about 5 days!!!
She had a small pimple-like bump on her thigh last week, but over the past few days this turned into a cluster of little red bumps. They don't know what it is. It doesn't look like the normal presentation of anything they are suspecting, but they said that people who are immunocompromised don't present like textbook cases of these sorts of things.The are treating her as if she has the worst case scenario. Worst case scenario being the chicken pox. They did swabs and blood cultures and we are crossing our fingers that it is something else :)
When were were on the oncology floor we learnt that chicken pox were a big deal. So much so, that when they admitted us, we weren't allowed back on the oncology floor. 4 North had been our home for almost 2 weeks. We knew the staff, it was recently renovated and really catered to kids with cancer. Now we are living on 4 East. It's kinda dingy compared to what we were used to. The nurses are still great but they aren't really used to patients like us everyday and it shows. They are trying, but everything takes a little longer. They looked at me like I was a little crazy when I insisted on ordering food  for her right before the kitchen closes, so that she can have her feast throughout the night. They have problems programming the IV pumps for her higher doses of medication, they had to go looking for the special gloves we need to change her diapers after she has received chemo etc.
Tonight Victoria is getting some melatonin before bed and some Tylenol for her fever- hopefully there's some decent rest in her (and our) future.
I feel the need to be living with a hospital bag packed at all times and a full tank of gas more so now than when I was expecting. We never know where we will be sleeping.

We're Home!!!!!!!!!!!!!

Sorry for the lack of posts. The past few days hadn't been great. Our highlight was a few visitors last Friday. Auntie Lisa kept her well entertained and even gave he a little mani/pedi with some kids friendly nail polish we got in the gift shop. Then the steroids kicked in and we were left with a nocturnal, starving monster. She spent her nights awake screaming for eggs, cheese or bread and butter. The hospital only serves eggs until 10:30 am so we were ordering multiple orders of several servings to stock pile for the night! Weird cravings and increased appetite are side affects of her transfusion.

Last Friday the doctors said that on Monday we could start talking about discharging Victoria. We were thinking that meant maybe Wednesday, Tuesday if we were lucky. We were shocked at rounds today when they asked if we wanted to take her home today! She needed a platelet transfusions and as long as she didn't have a reaction to it we were free. We had our visits from pharmacy, the dietitian, the social worker and our nurse case manager. After all of that, we packed up our bags, said goodbye the the room that had been home for almost 2 weeks and off we went. We know we will be back. There will be times where she will be admitted for planned procedures and then likely unplanned trips in.

My mom and dad had come for a visit today. As soon as we heard we were going home, they were out the door. They cleaned the house and had a delicious meal waiting for us when we got home. It  is so so nice to be under one roof together. While it was nice to come and sleep in my own bed, our house is very lonely place when it's empty. Tomorrow we get a special delivery: Jake!!!!!!!!!!!!!!!

On Thursday we have our first planned visit at the medical day unit at the hospital. She will be having some blood work, any transfusions she needs and her chemo.

If I don't post every day please just assume that nothing terribly exciting is going on. I know I had a few people worried with my lack of posting. I was just catching up on sleep.

Fed up with her hospital bed she decided to nap on Mommy's bed.

Fresh Air!!!

So today was another great day! The doctors gave us permission to take Victoria outside :)
They even temporarily unhooked her central line so she was free from her IV pole.
She had to wear a little mask while in the halls of the hospital since she is still neutropenic (her neutrophil count is too low -a type of white blood cell that fights infection) but once out in the free air she was free.
She had another spinal tap and more chemo today. She also showed daddy how well she can walk around on our ward and show off how cute she is.

She was very happy to be outside but you could tell she was still very hesitant.

 

One week

Tonight marks the one week anniversary of Victoria's Leukemia diagnosis. Survivor had just finished, when the phone rang with our doctor telling us to take her to the hospital. In some ways, that day seemed like just yesterday and in others it seems like a very distant memory. I never would have imagined that Jeff would know what neutrophils were, or what intrathecal meant, but this is all just a part of our new life. I've come to realize that this is all of our new reality. It will affect Victoria, ourselves, and Jakey profoundly. It will affect a lot of you. Since this realization, I've decided to change the title of this blog from "Victoria's Leukemia Story" to "Our life with Leukemia". Don't worry, it will still be mainly about her - I know that's why you are all here. With that said, let's talk about my cutie pie!

The last couple of days have been hard. She wouldn't eat or drink a thing. She wouldn't play. The doctors or nurses couldn't crack her, she just kept staring at her IV pumps, barely even blinking. The dietician came in to have an ice cream picnic for lunch on her bed, still nothing.This morning she ate some breakfast. Today, clowns were blowing bubbles on her and it's like she didn't even know they were there :(
She wouldn't move, kept covering her eyes even though it was dark and then finally said her tummy hurt. I told the doctors I though she might be nauseous so they gave her more meds. It worked!
I forced her out of bed and made her walk. We checked out the newly opened play room on our wing but she wasn't interested. She just wanted to walk the halls. We walked and walked and walked. Its not a very big floor... everyone was laughing because she wouldn't stop. I think we walked for 45 min non stop. Her IV pump battery started beeping and we had to plug it in. She took a huge fit because she didn't want to go back to the room. We came back and had a visitor :) Tina stopped by with food, magazines and cookies. Then we had a Skype dinner date with Jake, Liam, Granny and Auntie Melissa and Auntie Jessica. Then we walked some more. She ventured into the playroom and didn't want to leave. She was practically running in the halls. Back in our room she finally had in interest her surroundings. We checked out the drawers, the cupboards and the bathroom. She played with her new toys. I read her stories, tucked her in for the night and watched this weeks episode of Survivor. Compared to how we all felt last Wednesday, we are in paradise!

She's back to being a silly pirate!

Rough Day

After having a pretty good day yesterday, Victoria had a rough one today.

She didn't get a great nights sleep and had to wake up early to have her central line put in. The operation was supposed to be about and hour. They had some trouble getting her to stop bleeding so the whole thing took over 2.5 hours. We came back upstairs, she slept, and then off we went to get her abdominal ultrasound done.

She had a new chemotherapy treatment this afternoon. So far, her reaction has been good -again she's mostly been sleeping.

Her arms are now both freed up. Yay, no more IVs! She's a bit traumatized from all the difficulty they had getting blood last night therefore is still not happy when she sees the nurses coming her way. She is still reluctant to move her arms and hands. Hopefully tomorrow she'll wake up and just start using them again.

Yesterday, we had a great visit from Kevin, Diana and Jakey :)

Jake was mostly interested in eating any snacks we had around. He seems to have doubled in size since we last saw him. We don't know what they are feeding him in Huntingdon? ;)

Since it was quiet on the weekend, the doctors suggested we get her up and about while there were less people around to come in contact with. She was reluctant, but being the physio that I am, I was determined to get her up and walking. We made it our mission to go find Jake (he was off exploring with daddy).

On our floor, they have this great interactive thing where a picture is projected onto the floor and a camera tracks your movement. The image changes as you move over it. You can pop balloons and popcorn, blow the leaves away, make ripples in the water and even play a game of hockey or soccer, kicking the ball or puck around. Jake would dive onto his belly anytime he thought he was in the water. Jake was definitely the motivation Tori needed to get moving.

Back to the begining

If you are/were shocked to find out about Victoria's diagnosis, join the club.
Victoria's main first symptom was that her lips were bleeding. Sure, she had a few more bruises than usual but she's a really active kid and Jake was finally starting to pay her back for the previous 16 months of torture he has endured. She had one really weird episode of her lip bleeding over night but over the next couple of days we thought she had REALLY badly chapped lips. She had a cold and seemed a little run down.  She went to daycare  on Tuesday and wasn't really herself - she didn't eat much that day. The next day she still seemed out of sorts. I decided to take the day off and let her rest. I called our pediatrician to see if he could squeeze us in since I was already off.  No big worries.
By the time we had our appointment that afternoon, she was really cranky. She was pale and looked exhausted, despite having napped. Her doctor agreed that she didn't seem well. He noticed an enlarged lymph node under her ear and the bruising. He suggested blood work and off we went.

Later that night, we received a phone call from the doctor. The lab results were in. They weren't very good. Her platelets were very low and he thought we should take her to CHEO, the Children's hospital in Ottawa.
I took Tori to the hospital. They re-checked her blood, asked me some questions and right then and there told me that they were fairly certain she had Leukemia and needed to start treatment right away.

Crazy, unbelievable, shocking, this only happens to other people, she was fine 2 days ago, what the F.

She was admitted and they started treating her right away.
The next day (Thursday) they did a bone marrow biopsy and spinal tap to help determine he exact diagnosis. They also gave her some initial Chemo right away.

Victoria has Acute Lymphoblastic Leukemia (ALL). It's the most common of all the childhood Leukemias and is very successfully treatable :)
Since then, she's been doing fairly well. She is on a ton of medications for the Leukemia plus more to combat the effects of the medications.
Tomorrow she will be getting a Port a cath inserted which will take the place of the IVs in her hands. This will be great for her because at the moment she can't use either of her hands for much of anything. She has managed to wiggle one thumb out to pick her nose though !

The biggest excitement of the day is that we are awaiting the arrival of Jake. He is all she talks about and she loves looking and pictures of him that we brought it. We also haven't seen him since Wednesday night. Can't wait!

Victor is a little sock Monkey from Victoria's Nanna and Gramps. He is already covered in stickers. He gets his vitals taken whenever Tori does. He has helped a lot because sometimes he is the only one allowed to take her temperature or listen to her heart. Thank God for Victor!

Hi everyone!
I've started this blog just to be able to keep everyone up to date on how Victoria and our family are doing while she goes through her Leukemia treatment. It's too hard to write dozens of emails and keep track of who we have kept in the loop. This way you can check in on your own time and hopefully I can spend more of mine with Victoria and Jake. If I'm any good at this, Tori will have some sort of record of the whole event as well. No promises but I'll try my best.

Someone once told me that they liked to read the last page of a book first. If you are one of these people, you will be pleased to know that I will spoil this whole thing by cutting to the end of the story:

And they lived happily ever after.

The End.