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.