"Mommy I'm TOO hungry!"

7 bowls of Mac and Cheese
2 cheese strings
A piece of toast
Ham
1 cheese burger
1 double cheese burger
1 large fries
Carrots with Ranch


All of those items she ate before noon... and as soon as she was done the last lick of ranch off that plate. she said to me "mommy I'm TOO hungry!!!"


so then she had:


3 mini pizzas
1 bowl of apple sauce
Ranch on its own


Oh... and I'm not kidding. 
Also none of that was exaggerating.

I'm probably getting this look cause the food isn't coming fast enough.

Shovelling it in like its going out of style.

At least she finds humour in her squishy, puffy cheeks 

All Jaidyn does these days is eat. It's non stop, I'm exhausted and actually starting to get scared. Her belly is going to explode. And she is NEVER full.


I just don't get it. I don't know where its going and how its even fitting in her belly anymore. I feel like she should be on "True Life: I'm Addicted To Food" 

Hurry Nana, Bake this pie so I can eat it!!!

I honestly was so worried that I called her nurse (April) and told her that I was scared to feed her anymore because I thought she would explode. She kinda chuckled and said "trust me you're not the first mom to call". That was reassuring, I think? 


Her belly skin is so taught now because it has stretched so much It's like she is 9 months pregnant with triplets (she says she has 10 babies in there). She can barely move, she doesn't walk on her own and none of her clothes fit.


Also, to add to the overdue pregnant lady look she's got going on. Her belly button has popped out. 

note: popped belly button

I don't know how much longer this can go on. I'm counting down the minutes until she's done this steroids. 

Jaidyn's best Dogs.

They say that dogs can sense illness.


I've never really done any research on it, just heard things or watched it on the news, read little articles on it. Ive also seen that dogs can sense cancer.


It kind of sounds crazy, and I never put much thought into it.


But one thing that has been so noticeable since we have come home from the hospital is Hunter.


Hunter was always in a way scared of Jaidyn. She is so used to my parents big dogs that she kind of treated Hunter like them. Dragging him around on his leash, also she treated him like a stuffed animal or a pillow.


So he mainly just ran and hid from her whenever she was around.


Things are different now. He doesn't leave her side. EVER.


For whatever reason she was laid down on the floor in front of the TV and fell asleep and I came over to check on her and found Hunter laying right next to her. He didn't move until she woke up.

Miles (her best dog) as she tells me. Is the dog at her school. He was trained as a PAD's dog (personal  assistance dog) but failed because he wasn't assertive enough. So now he hangs out at school with the kids where he can be as lazy as he wants. Her teachers say he's been missing her since she's been gone so they sent us a package in the hospital with his picture and a letter from him signed with his paw print. 


Jaidyn can't wait to go back and see Miles.

Handsome Miles

Dexamethasone= A LOT of sandwiches

Four sandwiches… She ate four sandwiches in a row, and this is something that has gone on every day since we left the hosptital. Oh, and I forgot to mention this was between the hours of 2am and 4 am.

Last night it was tortellini… at dinner she ate 3 plates of it and finished off the left over’s at 230 am. My fridge has never been opened so many times.

I wasn't kidding you with the sandwiches.

There are many side effects of Dexamethasone. Its actually a steroid similar to Prednisone, but has leukemia killing traits. She takes this every day twice a day for the first 28 days. I am thankful that we are half way done the 28 day stint and things should dramatically get easier after that.

Eating has been the most noticeable. As stated above…  she eats all day long, and usually by the time I've got to the fridge to get it, she changes her mind and wants something else.

Weight gain: for the first time in her existence Jaidyn has some squishy puffy cheaks, arm rolls and a little belly. To me she’s looks a lot different, to others she just looks like your average 3 year old.

Another major side effect of the drug is mood swings. A hormonal teenager who can’t control her emotions has taken over her little body. One minute she’s laughing and smiling and couldn’t be happier the next minute, sh*t hits the fan, and you better watch your back if you’re in her line of fire… 

 

The slow gain of weight in her cheeks.

Its's very rare to see Jaidyn smiling, and even harder to catch a picture of it.

Words cannot really express how trying the last couple weeks have been. More so for Jaidyn since she can’t really describe to me how she feels other than that her tummy hurts 24 hours a day. Her doctor told me the teenagers describe it as their entire body acheing and things crawling inside of them. I can only imagine her pain.

September 8^th we’re done the steroids, things might get better… and this too shall pass. 

FINALLY GOING HOME!

It was kind of up in the air for the last few days about if it would happen today.


But since Jaidyn is doing so well after her surgery, she took the the Vincristine chemo excellent today and her blood counts have been staying in the "safe" zone we are FINALLY going home!

Getting Vincristine before leaving

Its been nine days since we were admitted to the hospital.


A VERY long nine days. 


A bazillion blood tests, a bone marrow biopsy, surgery, three different chemo's, blood transfusions, steroids, hospital food, Monsters INC on repeat and one horribly uncomfortable cot. 


I suppose if Jaidyn had to go through the first six things on that list the least I can do was sleep on that cot. Although most of the nights I slept with her in her bed.


But thats all in the past now because we GET TO GO HOME!!!


Although we're kinda sad to leave our room since we had it decorated so nicely.

But I'm thinking we'll probably get over it, since her room at home is so much nicer :)


We're all super excited about but I'm also super scared about. Its like being back at the hospital right after having Jaidyn and being so anxious to get home to my own bed but also on the other hand freaked right out because who was going to make sure my baby was ok?


I was nervous for the fevers. I'll most likely be taking her temperature every five minutes to make sure she's ok, even though I know she will be ok. I'll just have to make sure. 


 But thats fine because we're going home!!!

Waiting for Nana to come pick us up.

When words fail, music speaks - William Shakespere

Today the best thing happened to Jaidyn and I so far at the hospital.


The music therapist came.


WIth her guitar and all her instruments, she sat and played and sang with Jaidyn and made her smile.


I was able to just sit there and relax and watch Jaidyn laugh, smile, sing and be silly.

It was just wonderful.

Music and rhyhtm find their way into the secret places of the soul. -Plato

For the love of Firemen

Today was a busy day for Jaidyn at the hospital. Without mentioning any of the medical side, this is how today went.


We started the day of right by heading up to the "big playroom" as she calls it where we are entertained by endless amounts of toys, movies, and crafts. Yesterday was Averi's (my pseudo first daughter's ) birthday and because we weren't able to be there to celebrate (she lives in Toronto) Jaidyn and I decided to paint her a big birthday card. Averi is the little girl I used to take care of when I lived in Portland. Haven't seen her in 3 years and miss her so much!


Jaidyn was really excited about it and wanted to show all her friends in the playroom the card we made.


After eating lunch, Nana came for a visit and shortly after she arrived the Vancouver Fire Dept. came to visit Jaidyn. And when I say came to visit Jaidyn I mean it. The trip was especially for Jaidyn, but we shared it with the few kids that were allowed outside of isolation. 


Jaidyn, unfortunately was having one of her mood swings and wasn't too impressed with the big fire truck and handsome firemen that it came with- so I enjoyed it for her.

After all the excitement Jaidyn's best friend Ben came to visit with Auntie Kimmy. This is the first time they have seen each other since she has been in the hospital, so we weren't really sure how they were going to be towards each other. In the past they have had their fair share of spats mostly due to who's toy is who's, so it was going to be interesting to see how this went. 


The second they got there Jaidyn was excited to share her wheelchair with Ben and they held hands the entire way up to the "big playroom". None of which were they prompted to do. Both Kim and I watched in confusion, yet it also made me so happy seeing them get along so well. 

After the play room Jaidyn showed Ben the outside play area where they raced around in their cars and had a great time.

It was so nice to see Jaidyn so happy to have her friend there and show him all her new surroundings. They held hands everywhere they went. It made for a great day.

Surgery was a success!

Today Jaidyn had a Single Venous Access Device (SVAD) implanted in her chest.  This device will be the main way her blood is taken and chemo is given for the next two years. It will be removed once she is done treatment. The VAD  (what the kids call their "button") is completely under the skin. It's made up of a silicone rubber material and a catheter, which empties right into the superior vena cava (large blood vessel leading to the heart). 

This makes things SO MUCH EASIER. No more finger pokes, painful blood draws or IV’s for Jaidyn. When she is "accessed" meaning the needle is in it will look like a little butterfly taking a drink, then when chemo is done and it's time to go home the butterfly flies away. - If i lost any of you there, no I'm not going crazy from no sleep, this is the terminology we use and from now on everything will come and go through her “button”.

"accessed"

"de-accessed"

I wasn’t really sure how I felt about Jaidyn going in for surgery for the first time in her life. The last two procedures (Bone Marrow Biopsy and Lumbar Puncture) she was under conscious sedation. For this surgery she’ll be under general anesthetic. I got all dressed in my scrubs and funny hat and brought her into the operating room, sat her down on the operating table and held her while they started anesthetic. It is amazing how fast that medicine actually works. Within seconds she was out.  I laid her down and the nurse walked me out. I thought I’d cry, but I held it together, I knew she would do amazing.

Three hours later they called me and I was able to go down to recovery and see her. She looked so sweet lying there, still pretty groggy from the drugs. First thing she asked for was apple juice and cheese as usual; she evidently could have cared less if I was there.

For the remainder of the day we rested and watched Monsters INC. and cut paper, pretty much all Jaidyn really wants to do. I’m happy its over with and there wont be any more 2 am finger pricks. 

Our Friend, Dr. Rod

This diagnosis has been hard on everyone. Jaidyn doesn't really understand whats going on. She knows she's sick but has no clue exactly what is going on in her body and the seriousness of this disease. Being positive in front of her is very important at this time, it is however, a huge challenge.


Something that has made is easier is that Jaidyn, myself and our family have been blessed with such amazing care over the last few days. care from the nurses, the volunteers, the different doctors,but most importantly her doctor. Dr. Rod Rassekh.


Dr. Rod has brought many tears to our family as he was the one that had to break the news to us of Jaidyn's diagnosis. Where he too, was floored that her bone marrow was as full with cancer as it was. Like I posted before he was sure that Jaidyn had a virus since her blood was clear of an abnormal cells. Apparently, Jaidyn is a special case, in that there was only one other girl that had the same scenario. 


In the same breath, Dr. Rod has also brought many smiles to Jaidyn and our family. He is a fun loving, light hearted, young guy with a lot of schooling under his belt which puts our hearts at ease. He knows what he is doing and he answers all our questions with great explanation. He is more positive than anyone about Jaidyn's diagnosis, which is more than anyone could ask for. 


It has taken some time for Jaidyn to warm up to Dr. Rod since she doesn't like when he comes in and we talk about her diagnosis and her treatment. This leaves me to believe that maybe Jaidyn does know more about her illness than we think she does. She would always be pretty shy when Dr. Rod would come into the room, but it always made me laugh when he would leave. She would perk up and wave goodbye, knowing there would be no more talk about her and her Leukemia. Im sure her shyness will go away soon.


Thank you Dr. Rod for your smiles and laughter that you bring to my daughter during this tough time. 


A little bit about Dr Rod courtesy of:


http://www.dm.bcchf.ca/oncology/doctor.php


Also from: www.bccanceragencyconference.com 

Dr Rassekh grew up in Vancouver and then went east for a Microbiology & Immunology degree at McGill University. He returned to Vancouver for medical school graduating in 2000. He completed pediatric residency in 2004 and was chief resident in his 4th year. He then went on to do a fellowship in Pediatric Hematology/Oncology at BC Children's Hospital completing this and starting on faculty as a Clinical Assistant Professor in the division of Pediatric Hematology/Oncology/BMT in 2007. He completed a Masters of Health Science in epidemiology in 2007. His clinical interests are in infant CNS tumors, as well as supportive care.

Induction

A term near and dear to my heart. Please sense the sarcasm. For those of you that did not know when I was 37 weeks pregnant with Jaidyn they performed an induction on me. Not pleasant. 18 hours of labor. Will do anything to avoid any future induction, if possible. anyway...


This induction is different. It is the name of the first cycle of treatment in Jaidyn's chemotherapy. It will last 36 days and include a number of different types of Chemo's and medications.


The general side effects include:


Hair loss. Since chemo kills any quickly dividing cells in the body. Hair producing cells just happens to be one that divides quickly and chemo cannot tell the difference between hair and cancer.


Lowered blood counts.

• Red blood cells (RBC's) can be transfused. Low levels can cause fatigue, low blood pressure, paleness. She will likely need multiple transfusions
• Platelets (PH) which help the body to clot. low counts puts her at risk for bleeding, bruising etc. Jaidyn were normal but can drop after treatment. they also can be transfused. 
• White blood cells (WBC's) which help fight infection. They cannot be transfused. Jaidyn will be monitored closely for infections caused by her own body's germs. Most importantly her Actual Neutrophil count (ANC) which is a specific type of WBC. If lower than 0.5- Jaidyn is at risk for infection. For example if she were to get a fever she would get an IV immediately. If we are at home we have to come to hospital right away to start IV

Nausea- which is treated with gravol

Her risk of infertility is very low

No increased risk of cancer in future offspring

She will have a Single Venous Access Device (SVAD) surgically implanted in her chest sometime this week, where the port tunnelled into main vein into blood stream. Chemo is quite hard on veins so this makes this much easier. As well as this will reduce the times she'll need to be stuck with a needle to give or get blood. They will "access" the port with a needle if they need to provide intravenous meeds. A numbing cream is placed on site prior to accessing so Jaidyn will feel virtually nothing.


With the initial treatment, the cancer can release salts into the system she will be given more IV fluids to help flush those out. Blood will also be taken more frequently monitoring blood counts. 


This first month is so intense because they plan to empty out Jaidyn's bone marrow completely of the Leukemia, in order to allow normal cells to grow. A bone marrow transplant (BMT) is not part of treatment at this point. 


Her Chemo's/Medications:

Vincristine (VCR) does not effect her counts or cause nausea. It will be given once a week for four weeks, by IV. No long term side effects. Can cause constipation (Great!!! like we don't already deal with that) Can also effect long nerves in body causing tingling to hands/feet, jaw pain and clumsiness when walking. (all temporary)


Dexamethasone: Is a steroid given orally at a high dose, twice a day for the first 28 days. It was found that this steroid has actual cancer killing traits. It can irritate stomach so she is given Ranitidine (acid reducer) twice a day as well. Dex can cause moodiness/personality changes, increased appetite, increased blood pressure and blood sugar levels. 


Peg L'asaragenase: Given by IV once during the first month sometime next week. can cause allergic reactions/anaphylactic shock. can cause abdominal pain. 


Methotrexate (MTX) given intrathecally (IT) into spinal fluid. It is less damaging to brain and very rare to have mental deficits in future. 


Trimethoprim/sulfamethoxazole (septra): is an antibiotic she will take twice a day, three consecutive days a week for the entire two years.  It can cause nausea, vomiting, diarrhea, rash and pain in abdomen. 


She also has morphine for pain as we are not able to give her any Tylenol or Advil as they mask fevers. A fever needs to be treated right away with antibiotics so an infection does not spread. 


So there we have it. Jaidyn's first month protocol. And it started today. 

The (way too) long winded version of Jaidyn diagnosis

When I took Jaidyn into the walk in clinic Wednesday, August 10th 2011 I never thought it would be four days later that I would finally get a chance to come back home...On August 11th 2011 our lives were turned upside down when Jaidyn was diagnosed with Acute Lymphoblastic Leukemia (ALL).

It all started with Jaidyn feeling really tired, getting more pale as the days went on and began throwing up periodically over the last 3 weeks. I took her into the clinic thinking she was possibly anemic, given the signs she was showing. We were asked to go to Emergency right away where they started with blood tests,  a chest X-ray and continuously checked her heart sounds. By 5 pm her blood tests came back with her Hemoglobin levels of a measly 24. (normal for her age is 105-135) Hemoglobin is the iron containing oxygen transport of red blood cells. 


I was then advised we would be transported to BC Children's hospital by ambulance and admitted into the Emergency room there. I knew that this wasn't just a flu. If anyone knows Jaidyn, you know she's an energetic chatty three year old that is normally bouncing off the walls. At this point she had been laying on either my mom or my lap for eight hours not moving. Something wasn't right.

The infant transport team showed up and took Jaidyn and I down there. The paramedics George and Robert were the most gentle, caring medical professionals I had ever met.

Jaidyn's first (and hopefully last) ambulance ride

With quite a bit Anatomy/physiology and biology education I've had, things started making sense on the ride down. Jaidyn's levels were so profoundly low they were surprised she was still conscious. My heart started breaking right then seeing my energetic little girl barely making a sound and laying there unaware of what was about to told to us. 

We were brought to emergency were we met a new doctor and nurse who took more blood and listened to her heart again and again. An Oncologist was then paged. She came in and advised us that they were going to take a sample of her blood and look at it under the microscope to try and rule out any sort of abnormal cells in her blood. An hour later she came back with good news that there were none, but for whatever reason she was leaning towards Leukemia. A bone marrow aspiration and biopsy scheduled for the morning would be the only way to rule that out. We were brought upstairs to the oncology floor and admitted there.


Through the night Jaidyn had a blood transfusion that would hopefully bring her hemoglobin levels up, in turn making her feel 100% better than she could have possibly felt at that time. The nurses and doctor could not believe she was so stable with such a low hemoglobin count. Jaidyn, just like most kids some how managed to sustain a somewhat normal daily life with such low levels. Just goes to show how resilient kids are.

In the morning, Jaidyn was consciously sedated using Ketamine. They took some of her bone marrow as well as a piece of her bone to be biopsied in the lab.  I was in the room while they sedated her and I held it together until she looked at me all glassy eyed; the tears started rolling down my face. I looked around and saw a team of 10 plus doctors/nurses and knew she was in good hands.  The procedure only took about 15 min, (although it felt like hours) I got to see my baby girl again and couldn’t help but smile seeing something I hadn’t seen in a while. Her big smile. Why was she smiling so big? Because she was high as a kite… Ever seen “David after the dentist” On YouTube? That was Jaidyn.

http://www.youtube.com/watch?v=txqiwrbYGrs

“Im dizzy, im dizzy,im dizzy, woah mommy, I’m really dizzy… I need a drink” - Jaidyn Lyric

Finally once the Ketamine wore off (yes the street name is Special K) she was allowed to eat and boy was she happy. Meal of choice? Cheese and strawberries- obviously!

We then met another team of hematologists and oncologists who explained to us the 3 different possibilities that Jaidyn might have.

First off being parvovirus (different than the one you hear about in animals.) It is also known as fifths disease. Very common in children ages 5-10, usually goes un-noticed.

Second would have been Aplastic Anemia where the bone marrow does not produce sufficient new cells to replace blood cells, hence why her hemoglobin levels were so low.

Third being Leukemia, cancer of the blood or bone marrow.

The doctor placed his bet on the Virus. Her blood was clear, no abnormal cells that they could see under the microscope, they all were quite positive that’s what they thought this would be.

So now we wait…. Eight hours of waiting.

Eight hours of responding to emails (wasn’t very good at that sorry), drinking coffee, eating, playing in the many playrooms BCCH has to offer, playing games on the iPad, watching Monsters INC, trying to stay sane, not staying sane, more coffee, cutting paper (with Jaidyn) and more Monsters INC. Thank fully that blood transfusion worked wonders and for the first time in a while I had an energetic little girl running around that playroom laughing and smiling.

Blowing bubbles with Uncle Tay Tay

(Thank you Taylor for being such a great Uncle to Jaidyn.)

The people present at the time were Jaidyn, my mom, my dad, my brother Taylor, Jaidyn’s father Andy, my boyfriend Dustin and myself. So when the nurse comes in and says “we’re just waiting on the Oncologist, it should be only a few minutes, who would you like in the room when he gets here?” My heart started pounding and I looked around the room and said “Everyone?”

Why would she ask me that? Obviously it was bad news If she was asking me that. I knew in my heart I was about to be told something that no parent ever wants to hear about their child. So we wait. Five minutes turns into twenty. My brother and father had to leave, but still trying to stay positive about it all. Thankfully Jaidyn was feeling better so she kept us calm and entertained with her rockstar guitar skills on Dustin's phone.

Thirty minutes later the nurse comes in and says “we’re all ready for you.” So Dustin stays with Jaidyn and Andy, my mom and I walk down the hall to another room where we sit down with the oncologist team, our nurse and a social worker.

Short and sweet, Dr, Rod Rassekh says in so many words, Jaidyn’s bone marrow aspiration has come back and much to our surprise her bone marrow is indeed full of Leukemia.

“Wait what? It’s full of Leukemia? She was supposed to just have a virus.” That’s all that kept going through my head. But for whatever reason, I remained calm. I knew my mom was crying, I could tell Andy was upset but I had to keep listening to what they were saying.

It wasn’t until he started talking about her treatment and the side effects the chemo would have, that it hit me. The room went white, my face was beat red and hot, I was going to pass out. I asked him to stop talking for a moment so I could calm myself down. Thankfully I did not pass out, but it took a moment to get myself together so he could continue. He continued talking for an hour and a half. 


He talked about A LOT of things in that hour and a half. Her diagnosis, her treatment, her prognosis, her long term care. All of which he was so positive about. Thankfully, Jaidyn has the best case scenario for everything we've been challenged with. 


She has the most common and treatable childhood cancer, even though her bone marrow is packed full of Leukemia, with very little normal cells. (67% leukemic cells in her marrow.) Her age is the most ideal for receiving treatment and her white blood count and platelets have stayed within normal ranges which places her in the standard risk for ALL.


The next six to eight months we will notice many changes and it will be quite an intense treatment process.  But after that life should go back to (somewhat) normal. Her treatment will however, continue for two years. Boys continue for three years as leukemia cells tend to hide in testicles.  Jaidyn will be followed into adulthood, even though relapses of the cancer are not likely to happen after the two year treatment. 


Leukemia in both boys and girls also tends to hide in the Cerebral Spinal Fluid  (CSF) so a Lumbar Puncture/Spinal Tap (LP) will be performed in morning to test.  They will also start chemo by injecting directly into the spinal fluid to treat any possible Leukemic cells in CSF. 


Jaidyn's treatment will be broken up into 5 different categories called 


Induction
Consolidation
Intra-maintenance
Late Intensification
Maintenance


Induction will start tomorrow, so tonight we take deep breaths and hold Jaidyn close and remember that everything is going to be ok. It's just going to be a long, tough, two years.

Through out it all she has managed to keep a smile on her face.