Part two of Phase two of Delayed Intensification

So I pretty much won an award for "Mom of the Year" on Jaidyn's second week of Delayed Intensification Part 2.


And I'm being completely sarcastic when I say that. 


Read further you'll find out why.


Day 1: Jan 26th


Today was the first day of the second week. It was scheduled to just be a quick visit with only the Ara-C administered. We were in a rush out the door (as usual) but made it to our appointment on time. Once we got there we had to wait a bit which was fine because it was Uncle Tay Tay's birthday today so we had to make him a card. So out the paints came and painted him a giant card.


Jaidyn's favourite volunteer was there today. Her name is Jackie, she is an older lady from Jamaica and she the sweetest thing I've ever met. She sits and plays with the kids, its amazing her patience. Jaidyn always talks about how Jackie came and read Jaidyn books when we were first admitted back in August. She read to Jaidyn for over an hour so I could go get some much needed food.


Today they played with the ambulance. Jaidyn told her all about her ride in the ambulance back in August.

Her Ara-C was given, she sucked back an entire bottle of grape juice and then we went home.


For those of you that aren't from around here, the hospital is about an hour drive from my house (dependant on traffic) and its all highway. So we were about half way home Jaidyn said "mommy I don't feel very good." Thinking that her tummy was hurting, which is a normal occurrence lately, I reassured her it was ok and we were almost home.


Ha, not the case.


Within seconds she was projectile vomiting all over the car, all over herself and all over her brand new car seat that was purchased YESTERDAY!


Panicking because we're on a major highway I pulled over to the shoulder, while she is still vomiting and it is not letting up. Thankfully, there was a blanket in the backseat that I was able to clean up as much as I could, as well as trying to comfort her. I couldn't figure out why she was throwing up like this. She has fortunately, never got sick from any of the drugs she has been given, so this was not something I wasn't  used to. And either was she.


Then it clicked. All last week she had the same drug but didn't get sick and there was a reason for that. She had been given Ondansatron, a powerful anti nausea medication. She takes that prior to getting her chemo.Normally if she doesn't take it orally before we get to the hospital, the nurses administer it by IV.


Except for this morning. "Mommy of the Year" over here, forgot to give it to her and I was paying for it by having to clean up grape flavoured vomit!


I felt horrible. I almost cried. This was my fault she was getting sick. It was the worst feeling.


We raced home and I carried her upstairs and put her right in the tub. In the time I walked from bathroom to laundry room I could hear her screaming from the tub. I ran back to the bathroom and she was vomiting again. Poor baby.


Once the disaster was cleaned up, I got her in bed and convinced her to let me give her the Ondansatron to make the vomiting stop. Funny enough the Ondansatron is grape flavoured and she knew that. Nothing like taking grape medicine after vomiting up grape juice for the last hour.


We managed, and she was fine after that.


Moral of the story?


Never forget Ondansatron.


Day 2: Friday Jan 27th


Along with Jaidyn's Ara-C she had a scheduled Kidney ultrasound to see if she might have a Kidney stone and that's what was causing the blood in her urine. Andrew had drove down that morning so he met us at the hospital.


Everything went smoothly with her ultrasound and we headed to the Oncology clinic for her chemo. And it is now evident to me that we watch too much TLC at home, since during the ultrasound she wanted to know if they were going to find a baby in her belly. :)


Her Ara- C was given and we went home. The Ondansatron was NOT forgotten today.


And of course we had a photo shoot with the bear outside the main entrance of the hospital.

Day 3 and 4: Saturday Jan 28th Sunday Jan 29th


These two days were uneventful, we went up to 3B got her Ara-C and that was that.


Sunday night we went to my parents house for dinner to celebrate my brother's birthday. Jaidyn had a blast and enjoyed putting the candles on the cake. Which was as you can see from the pictures a Family guy DQ ice cream cake. Jaidyn took one look at it and said "hey that's Stewie!" I love that my 3 year old knows who Stewie is. Thanks Taylor.

Blowing out candles is serious business

She loves her Tay Tay

pure excitement

Jaidyn and her Stewie cake

Isn't it so funny that when Andy comes down and nothing goes wrong. Its Murphy's Law or something like that. He leaves and she pukes, or gets admitted, has to be transfused, has a 10 hour chemo day at the clinic or gets a UTI. Why can't it just be smooth ALL the time?


Oh well. Even if he was here when something like that happened, its not like I wouldn't be there either. Even on days where he could take her in by himself, I find it very hard to stay home.


I guess it is what it is.  Such is life.


I'm just glad this part is over. So we don't have to drive to Vancouver almost every day for 2 weeks.


Next up is a follow up visit on Feb 2nd for possible transfusions of red blood cells or platelets. This is the time in treatment where Jaidyn's counts will drop significantly and she will most likely be admitted for neutropenia and fevers. We will see how it goes, take it easy and pray everything goes as it should.

Part one of Phase two of Delayed Intensification.

That probably means nothing to most of you but to break it down: 


It is the first week of the second part of the last most intense phase of Jaidyn's chemo. 


(say that 3 times fast)


This part of this phase is a month long consisting of two 4 day in a row chemotherapy drugs. You think thats a lot to remember, you should see all the new info that is stored up in my brain. They pretty much have you qualified to become an Oncologist through out all this. Maybe you hear these terms if you know someone with cancer or maybe it goes in one ear and out the other, but with a child going through this it is your job to remember everything. Probably more than you should... or that just might be me and my strong interest in medicine. Especially in Children. Anyway... back to the topic on hand.


Jaidyn's Neutrophil count was up to 1.1 on Wednesday so we were able to finally start the second half of her Delayed intensification phase which has been postponed for the last 2 weeks due to her Neutropenia.


Day 1: Thursday Jan 19:


This phase started out with an all day session at the clinic. We started it off with a Lumbar puncture, which for the first time I was able to stay in the room during her procedure. This was so exciting to me since she's had it done 15 or more times I never really knew what happened during it. They start it by giving her the IV Ketamine which takes effect right away she gets quite dizzy and wants to lay down. Normally kids just lay there watching Dora, Backyardigans or whatever highly obnoxious video they choose. But Jaidyn was a chatty Kathy. She just kept looking at me saying "hi mom, hi mommy, hi, HI, mommy? hi mommy? are you there mommy? hi, I love you mommy..." and so on. It was so cute, yet kind of broke my heart at the same time. knowing she was so doped up. I asked if she does this when I'm not there, they kinda laughed and said that last time she told them all about our new kitty cat... Which by the way does not exist.. I'm not sure where she got that from. They were laughing and saying this might be a preview of what to expect for her teenage years when she comes home drunk for the first time.


During the procedure, they place a needle in her lower spine and drain out out a few different vials of spinal fluid which they said is clear and looks great, then they inject the Methotrexate directly into her spinal fluid and then its done. All together takes about 10 min and she is then wheeled back to her room where she has to lay flat for an hour to decrease the chance of headache from spinal fluid leaking.


Once she finished her hour of laying flat, she started on her 2 hours of IV hydration. The reason for this is because she was receiving a new drug called Cyclophosphamide.


This drug has known side effects of being quite hard on the bladder. So they make sure that your urine is at a specific gravity before they can start administering the chemo. By extra hydration they can get your urine to that specific gravity faster.


After the two hours Jaidyn had to pee in the hat, which is like the most exciting thing to do ever to her. Her urine was tested and she was all set to go to start. The chemo was given over an hour, and once it is done she is then hydrated for another four hours. As well as her urine is continuously checked for blood, since the drug can make the bladder bleed. This obviously concerned me, but they assured me it was quite rare for anything like that to happen.


So we went about our day, entertained ourselves with puzzles, iPads and painting amongst other things.
They really do such an amazing job to keep that playroom full of everything a child could want.

When it was time for Jaidyn to go to the bathroom, her urine was dipped and low and behold it showed Large amounts of blood. (The scale goes trace, small, medium, large). So that kinda had everyone concerned, but soon after a little investigation Jaidyn's #1 Nurse Kristy realized that her urine from BEFORE the chemo had blood in it as well.


So that opened up a whole other book of questions as to why she had blood in her urine in the first place. Bladder infection? UTI? Kidney's? Jaidyn hadn't been complaining of any pain when urinating or any back aches in her Kidney region. So why was there large amounts of blood in her urine.


They checked it again, and again, and a few more times and it continued to show medium to large amounts of blood. So they decided to give her a drug called Mesna which helps coat the bladder. As well as that drug, Jaidyn would also be getting another 2 hours of hydration. So all in all Jaidyn had an LP, laid down for an hour, 2 hours of hydration, 1 hour of chemo, and another 6 hours of hydration. Plus a quick dose of Cytarabine also known as Ara-C. This drug takes 5 min, and is given over the next 4 days. Nothing like putting in a 10 hour day at the clinic.

Thank goodness for paints and popsicles!


Day 2: Friday Jan 20th


She was started on IV hydration right away, she hadn't been feeling that well so all she really wanted to do was lay on the couch and watch Backyardigans on the little DVD player. Kristina- the lady who is in charge of Child Life and the playroom is Jaidyn's new best friend since she brought Jaidyn a pillow and warm blanket for her belly. Jaidyn pretty much relaxed the whole 5 hours. They dipped her urine a few times, all of which still showed large amounts of blood in her urine, with trace amounts of white blood cells. That shows there is a possible infection. They weren't going to continue testing her urine over the weekend unless we could visibly see blood in her urine. Her Ara-C was given and we were off.

Day 3: Saturday Jan 21st


Since it's a Saturday, the oncology clinic isn't opened, Jaidyn gets her chemo on the 3B Oncology ward. Andy took Jaidyn himself today, since it was JUST going to be Ara-C, and would only take 5 minutes it didn't need two of us there. Basically they were in and out with no complications.


Day 4: Sunday Jan 22nd


Andy left to go back to Keremeos, so I took Jaidyn in for her quick appointment. We played in the 3B playroom for a while, since she hadn't been up there since the summer. (All of her appointments are done downstairs in the clinic.) 

After her Ara-C was given, and we decided to venture downtown and meet up with a few friends of mine. We went out for lunch with a friend, and within an hour she went pee 3 times. Didn't really think much about it, but thought it was kind of odd. Then we went to another friends house and were there for about two hours. Within those two hours she went pee 5 times. So now I was a bit concerned. So I asked my friend what she thought, was I being overly concerned? Given that the last few days showed blood in her urine, the excessive urination over the last few hours and we were still in Vancouver, I figured I should just put a call into the on-call Oncologist just in case. Based on what I told them, they agreed it didn't seem right and asked me to come into Emergency right away so they could check her out. Unfortunately my visit with my friend was cut short and we were once again on our way back to the hospital.


We were admitted to the ER and the asked the routine questions. No fever, no burning with urination, just constant peeing. The doctor came in a few times giving us different options and what she thought it might be. The urinalysis still showed the blood and based on the fact that in the last few days there had been slight elevation in white blood cells she was going to treat as if it was a UTI. IV antibiotics were started and she called up to the Oncology floor to see when we could get a room. I was kind of surprised she wanted to keep us overnight, and she even felt weird doing it since Jaidyn seemed so fine. No fever, still bouncing off the walls, just peeing a lot. After a couple hours of antibiotics she came back in and said that she was going to let us go home and we would just follow up in Clinic with Dr. Rod tomorrow. To me that sounded much nicer than staying unprepared in the hospital overnight. Jaidyn was quite pleased to go home as well. She gave me an oral dose of antibiotics, that I was to give Jaidyn at 5 am, and we were on our way.


Day 5: Monday Jan 23rd


Jaidyn conveniently woke up at 445am (a regular occurrence lately) so I was able to give her the antibiotics without having to wake her up. That however, backfired as she projectile vomited as soon as I gave it to her. After a quick shower, and sheet change, I was able to get her back to sleep.


April, our lovely nurse that follows us on a regular basis phoned me a few hours later to see how Jaidyn was doing. I let her know the oral dose of antibiotics didn't exactly happen as planned, so she suggested we head back into the clinic to get an IV dose of antibiotics and that should be enough to get rid of whatever was hanging out in her Urinary Tract. 


So off we went back to Children's for the 5th day in a row. They quickly hooked her up to her IV pole and started the antibiotics. Luckily they had kept in her butterfly for all 5 of these days so she didn't have to get poked each time. It was short and sweet today, but suggested Jaidyn get a ultrasound on her Kidney's just to make sure that's not where the blood was coming from. That will be done on Thursday, as well as she will start week two of the 4 day Ara-C dosage. Lets hope that its quick and easy like it should be.

Not the best start to 2012

Well the first week of 2012, did not go as I had hoped.


As the last days of 2011 came to a close it was something I couldn't wait for.


I couldn't wait for a new year, a better year. One with less stress. More happiness. No more life altering events.


Besides Jaidyn's diagnosis, a lot of other "not so great" things happened in 2011, but we're putting that all behind us and starting fresh. This year will be a good year.


Unfortunately, the year didn't start that way.


As I had mentioned in my last post Bald is Beautiful, Jaidyn hadn't been feeling very well. Since Christmas she had been pretty lethargic, and just wanted to lay on the couch. At her appointment on Thursday Dec. 29th her Neutrophil counts had been at .50. Neutrophils are a type of white blood cell that specifically attacks bacteria and fights infection. Normal range for kids is 1.5 to 8.5. With Jaidyn being at .50 she was quite low, but somewhat normal for her stage of chemotherapy. It just means she is more susceptible to getting sick and may have trouble fighting something off.


Which explains the cold like symptoms she had been having for a few weeks now. A runny nose, and a really wet sounding cough. No fever though.


By Saturday she still hadn't been acting like herself. All she wanted to do was lay on couch, watch movies, have her back rubbed. - I don't blame her. We were having a pretty low key New Years Eve, which I was pretty happy about given she wasn't sleeping much at night and I was already so exhausted.


New Years Eve was rough. She was up all night, coughing, stomach pains and to top it off diarrhea. Awesome.


New Years Day was kind of a write off. I actually don't really remember much about it as I was a complete zombie. I'm sure though, we probably just laid on the couch all day. She seemed warm all day so I took her temp probably every hour.


By 7pm  her temp was at 37.5 C  It has been embedded in my brain that if she has a temp of 38.0 C or more, that she needs to be in hospital right away and started on antibiotics. Since her temp has never been over 37.0 C I didn't want to take a chance. So I paged the on-call Oncologist and they phoned me back right away. I ran through her symptoms and behaviour over the last week, and right away they suggested we come in to Emergency and to pack a bag just in case. So I packed up some stuff for a night or two, and we were on the road.


The emergency room was packed, probably 25 coughing children amongst other symptoms. I was so paranoid having Jaidyn around all these kids, the triage nurse was too (given Jaidyn's immune system is so low) so right away, she took us to a private waiting area, before moving us to our own room in the ER.


The nurse came in, accessed her butterfly and started blood work, a blood culture and urine sample right away. Her temp was still 37.5 C. An IV was started as we waited for the doctor to come check her out. They also came in and did something that I had never seen before and wouldn't wish it upon my worse enemy. It is called a Nasal Pharyngal Wash (NPW). You could read the medical description of it, but pretty much they squirted saline up Jaidyn's nose and took a long skinny plastic tube attached to suctioning device, placed it in her nose and pushed it in until it went down her throat where they started suctioning cells from here throat. It was terrible.


The look of fear in Jaidyn's eyes, screaming for me to make them stop, but I was helpless and all I could do was tell her its ok, it will be over soon.


After that we waited for a bit, before they decided they would start her on antibiotics and keep us over night. Even thought she didn't have a fever they wanted to get the cultures and the tests back and that wouldn't happen until at earliest tomorrow.


We got to our room about midnight, and unfortunately because she was coughing and had a runny nose, we were not able to be on the Oncology floor. Due to the fact that the rest of the kids are immune compromised. We were on the surgery floor in isolation. Definitely a change from the Oncology floor.


The next morning there still was no info on her blood culture, they did know that her neutrophil levels were 0.04. Basically zero. This scared the crap out of me, and was happy to be staying in the hospital. Given the fact she already had cold like symptoms, all I kept thinking was that it could turn to Pneumonia very quickly and her body wouldn't be able to fight it off.


Her NPW test came back inconclusive, which meant we needed to do another one. Poor Jaidyn had to go through it again. She screamed even louder this time as they equipment was being set up, knowing what it was going to feel like. The nurse described it as the feeling you get when jumping in the pool and getting water up your nose. I wish I could have done it for her.


The next few days all kind of blend together. Mainly consisting of, blood tests, chest X-rays, abdominal X-rays, waiting for her blood culture and the second NPWJaidyn to do, at all. We didn't even have cable until the 3rd day, and I had to ask for a dvd player. It doesn't seem right to say, but I was actually happy that Jaidyn didn't want to get out of bed much, made it easier to keep her in her room, entertained by movies.


At this point we were expected to be staying till the end of the week, and I had just accepted the fact that we weren't moving rooms due to her symptoms which was fine. My bed was actually more comfortable then the one I had on the Oncology floor. Unfortunately though, they decided to do a THIRD NPW test, because they really wanted us to be able to move, where the nurses are more familiar with the type of care Jaidyn needs. I was really hesitant about this, since the last two were brutal and both came back inconclusive. Our really helpful nurse Cannice, assured me she was really good at the test and that it would be nice to know the results whether its bacterial or viral. So they brought another nurse in, swaddled Jaidyn in a blanket, she screamed bloody murder and the test was done. Cannice was right- she was really good at this test.


The next day the test results came back negative for a bacterial infection. Which is great, however its not necessarily accurate at this point since she had been on antibiotics for almost 5 days so it could have been treating the bacterial infection. We'll never know. But at this point we were really just focusing on her getting her strength back and having her counts rise. They didn't have to jump up super fast or be at a specific number they just had to be continually increasing.


It was about day 5 that her energy started coming back and she would get out of bed more often, walk to the bathroom on her own, change her dvd, draw her name over and over on the white board, she even started bossing me around and rolling her eyes at me. Welcome back Jaidyn!

Along with the "Jaidyn" qualities that started coming back, she never getting dressed, she refused to eat, drank almost 2 gallons of milk and wouldn't poop. Awesome.


Below is a series of photos of Jaidyn pretending to eat. Half the time I didn't blame her for not wanting to eat what they gave her. What three year old wants to eat an extra dry piece of pork with broccoli and cauliflower. Sorry I wasn't able to get a picture of that lovely meal. Although the last picture is comparable.

Constipation is a battle we have been fighting with Jaidyn since I can remember, the Chemotherapy just intensifies that. During the bouts of constipation she screams in agony of stomach pains and cramps and there is nothing we can do but put a warm pack on her belly, and give her a supplement called PEG, that draws water into her bowl.


It wasn't till day 6, that the sweetest older nurse managed to convince Jaidyn to let her bathe her. She sat there and let her wash her with a wash cloth while in bed- which Jaidyn thought was hilarious. She changed her IV tubes and everything was all nice and clean. It was so sweet to watch, and so nice to see Jaidyn being so excited about her bath in her bed.

Leave it to Jaidyn to finally decide to have a "blow out" not more than an hour later. Fortunately, I had just left and it was Daddy's turn to stay the night. I couldn't help but laugh. Her tummy sure felt better after that.


Her Neutrophil count on the first night was 0.04 which went to 0.03 then 0.04 then 0.06 then 0.11 then 0.13 finally up to 0.20 when they decided they could discharge us. It was so nice to be able to go home. To not hear beeping all night long, to possibly get more than an hour of sleep at at time, to be able to have a shower whenever we wanted and to have our own food. but most importantly it was so nice to see Jaidyn's counts slowly rising.


Staying in the hospital is never fun, but there is one amazing thing that comes out of it. One on one time with Jaidyn. Being off work is great and we have lots of time together, but there is something different about being in the hospital just the two of us. At home, there are distractions, errands to run, laundry to fold dishes to put away, and the list goes on. Ironically, being in the hospital its all about the fun stuff, colouring pictures, practicing writing the alphabet, watching moves all day and getting lots of snuggles.

Being silly, is something we have become really good at. It helps pass the time when we're stuck in the hospital room. It's been 7 days, we're happy to go home. Back to our routine, if you can call it that. She will get her blood work done on Wednesday to see if she can start Chemo again on Jan 19th.

Lets hope that this week wasn't a preview of what 2012 has to offer.