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.