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.

Bald is Beautiful

The day finally came.


The day I had been anticipating since the day she was diagnosed.


They told me that I should expect it within 3 weeks. We were now at 5 months and it still hadn't happened.


But last month they told me that the Chemo she was getting this month would definitely make it happen.


My little girl was going to lose all her hair.


This was something that was really emotional for me. It made it so much more real. Up until this point we could go on our daily life without anyone really knowing she was sick. Because she looked like a healthy little three year old girl. Although, when at the hospital she stuck out like a sore thumb, being the only kid with hair. But it was something that was out of any ones control so I accepted it and planned to embrace it as positively as I could.


I went away for a couple days to visit some old friends in Portland, OR. I left on Boxing day and Jaidyn had been doing really well. She would have her bursts of energy accompanied with a brief "mommy I need to lay down" every once in a while. She'd take a quick 30 second recharge and she'd be back at whatever activity she was previously doing.

Christmas was really great this year, Jaidyn was so much fun and felt somewhat okay almost the entire time. I couldn't have asked for anything more. Except maybe that Dyson vacuum of course. 


Andrew was down for the week so it gave me the chance to take off for a few days.


The time away was great and much needed, but I missed her so much. Coincidentally as soon as I left, Jaidyn's energy became almost non existent. She spent almost the entire three days I was gone on the couch very lethargic and uncomfortable. I decided to come home early and make sure I was home for her appointment on Thursday as I figured she would need a blood transfusion.


At Thursday's appointment, her blood counts were actually quite good other than her Neutrophil's. Unfortunately those are the important ones, being the most common type of white blood cell and the cells responsible for responding to infection and attacking bacteria. Her counts being very low means her immune system is very week and any infection could be detrimental. This is why we have to pay very close attention to any fevers she may get, and could potentially be admitted to the hospital for infection over the next month.


Later that afternoon, Andrew called me and said "I think its time you bring over the hair clippers." My eyes welled up with tears and I knew it was time. Over the last three days her hair had started falling out in clumps and the back of her head was almost bald. It broke my heart.


So I sat down and talked with her about her hair and that it was okay that it was falling out all over the place. We decided to brush it as much as possible and get most of the lose hairs taken care of. It was so overwhelming for me, but I couldn't let her see me upset. So with her direction, we got out the hair clippers, the mirror, the camera and we gave her the hair cut we had been talking about for a long time.


I started it, but had uncle Tay Tay finish it. She sat there and didn't say a word, read a book as if it was no big deal. 

Once we were done she looked at herself in the mirror and the most beautiful thing happened.

She smiled.

That beautiful smile, that melts my heart.


It was then that we all looked at her and smiled. Although I had tears in my eyes, they were happy tears. I may be biased, but I think she looks pretty damn cute. 

My daughter inspires me. With everything she has gone through since August she still has that beautiful smile on her face and makes me realize everything is going to be just fine.


Thank you Jaidyn Lyric for teaching me everyday how to be strong. Stronger than I ever thought I could be.

I'll remember this day forever. 

It's about time I update this blog

So it's pretty much been forever since I've posted anything. October and November flew by, with so much going on and thankfully, Jaidyn's treatment was a breeze so there wasn't a lot to post about. But for a little recap of the events.


Jaidyn started going to ballet class on Tuesday mornings. Her physical therapist at Children's suggested I keep her as active as possible to try and eliminate the Vincristine Neuropathy which causes tightness and numbness in extremities causing her to trip quite often. This is just one of the many side effects of the Vincristine Chemo. She has special splits on order to help her not trip as much. So for now, we enjoy her ballet class. I've been waiting for this day to come since I found out I was having a girl. I'm not sure who was more excited me or her about her first ballet class. So I was sure to take lots of pictures. Her teacher is also aware of her illness and does an amazing job with her in class. I couldn't be happier.

Jaidyn's new love is FaceTime so we do that all the time now. Here she is with my parents. They look like dorks and she is less than impressed.

A friend of mine has a shop in Grandville Island called the Ocean Floor, so one day we took a drive down there to check out her rain boots she had for sale. The entire car ride Jaidyn insisted we find a lady bug umbrella, so that was on our priority list for the day. The weather was horrible, more rain then you can imagine so our shopping trip was fitting. Luckily they had wonderful lady bug umbrella's and rain boots to match. She was in Heaven.


In Keremeos, BC where Jaidyn's father Andrew lives, they were holding a fundraiser for Jaidyn which given she was doing so well in treatment, her spirits were up and so were her blood counts we decided to drive up there for the weekend and take part in the fundraiser, and have a visit with her grandparents. The fundraiser was amazing and more successful than I could have ever imagined. I cannot thank everyone who organized, helped and participated enough. I am speechless to express how loved my little girl is. It was great to see people who I hadn't seen in a while and also see Jaidyn run around the orchard, with not a care in the world. It definitely brought a smile to my face.


By the end of October, Jaidyn's hair had become really really thin and straggly looking. I'll admit this has been so hard on me, accepting that she will lose all her hair. Dr. Rod and all her nurses still can't believe that she has as much hair as she does. Because if you remember they had prepared me and told me within 3 weeks she would most likely be bald. Its been 4 months and unless you look closely its hard to notice. But in the last week of October it had become noticeable enough to me so we decided to get a hair cut. I was really quite hesitant about it since her hair had taken this long to grow and she hadn't ever had it cut. But i knew it was time. Jaidyn was really excited about it and as she was getting it done, I held back the tears. In the end her hair cut looked so great. She was so happy about it and it made her look so cute. I kinda wished I had cut it short a long time ago.

Showing off her haircut to Tay Tay

This brought us to the weekend before Halloween. Jaidyn had been doing really well and my Grandma was in town from Florida so we decided to drive up to Keremoes again for 2 days so that my Grandma could see where Jaidyn's dad lived. Its so beautiful up there I was really excited for it. Andrew built a house last year on his parents peach orchard and Jaidyn was so excited to show her Gamma her room at Daddy's house. We had a fun relaxing weekend, carved pumpkins, got her photos done by Auntie Chantal and before we knew it, it was time to go home. Before Jaidyn's diagnosis she was going up there for a week at a time almost every month. Its been really hard on Andrew's parents cause they haven't seen much of her lately. So the visit was short but sweet and everyone had a great time.

We were back home for Halloween, and I had Jaidyn's costume all ready for her to wear. The cutest little Minnie Mouse costume including yellow sparkly high heels which she picked out herself from the Disney Store. The last final minutes before its time to get ready she decides to switch it up a bit and insists she dress up as Tinkerbell. I wasn't too impressed, but we were lucky that we actually had a Tinkerbell costume from our trip to Disney in June. So Tinkerbell it is...

I wasn't sure how long she'd last walking around getting candy. Dustin and Taylor made it fun for her and dressed up themselves and went door to door. Probably made it to 20 houses and it was time to pack it in. I was really proud of her though for doing so well. She had a ton of fun.

The next day I was sure to get her in that Minnie Mouse costume at least for a picture... Funny enough she wouldn't take it off. She even slept in the high heels.

She had Chemo every 10 days over the last two months, all of which were uneventful. In a good way. We were both a little sick one day with colds so we were put into isolation for the few hours while at the clinic. That means we couldn't go to the playroom with the other kids, Jaidyn's favourite part obviously. But because Children's is so amazing, they had a wonderful volunteer come in and play with Jaidyn for three full hours. She was so soft spoken and sweet, it was actually really relaxing for me just to watch them play.

Getting ready for her "butterfly"

Making sure her Nurse cleans it correctly.

Amazing Volunteer

Jaidyn being three has really kicked it up a notch in the "testing" and mischievous stage of her life. Hiding in laundry baskets and completely unravelling two giant rolls of yarn all across our apartment. I was so mad that she did that to the yarn, but I couldn't help but laugh cause she was having so much fun. Sorry the pictures are blurry, that's how much she wouldn't sit still.

Along with hiding in laundry baskets, she also tests me by running away in Babies R Us, where I found her hiding in a port-a-crib, singing her imaginary baby to sleep.

Forts are also a big hit right now.

November was a VERY crazy month for us. Along with the continued Chemotherapy, my therapy appointments and day to day life, I was also planning and organizing a huge fundraiser at the end of the month. It was beyond stressful, and time consuming. The fact that it was my first time ever organizing something like this also made it worse. It was the last thing I needed to be doing. But I stayed positive and looked at it as something fun for me to keep my mind off of the negative things in life and hoped it would all just fall together perfectly.


And that it did! Our fundraiser for Jaidyn was a huge success! I was so happy that everything worked out the way it did. Friends, family, strangers were so helpful and generous. Jaidyn and I have never felt so loved than we did during that fundraiser. The donations were incredible, people had a great time, it was all together an awesome night. I am just so happy its done!!!


Jaidyn finished the "interim maintenance" phase of her chemo with flying colours, and we had a two week break of no medicine *insert happy dance* before we start the "delayed intensification" phase.


I know what to expect... its not going to be fun. Jaidyn will be on steroids again. She will be moody, achy, hungry, cranky and tired. All of which she was for the first month of treatment. I'm a little bit scared and nervous cause I remember what that first month was like. It was all forms of terrible. It breaks my heart watching her feel that way, but we get through it because in the end it is saving her life. And we all know I would do anything for her.


Along with the steroids she will be receiving a few more intense chemotherapy's- which will make all her hair fall out for sure. We're ready for it. We have lots of hats and headbands and nothing can stop us.


Not only is she kicking Leukemia's ass... But she's doing it in style.

The holidays will most likely be tough this year for us as we won't know exactly what mood Jaidyn will be in. It seriously changes every 30 seconds. So until then, we're taking full advantage of the good times, doing lots of crafts and Christmas baking. This year has been the most excited she has ever been over Christmas and I fully intend on making the best of it!

Interim Maintenance

Jaidyn started her third phase of therapy today called Interim Maintenance.


This one lasts 56 days or so all dependant on her counts. 


Every ten days she will receive Vincristine and Methotrexate through IV. She's been having the Methotrexate through her Lumbar Punctures each week but now she receives in through IV. Each time she goes in for treatment (as long as her counts are good) they will increase the Methotrexate. If her counts are too low they either wait a few days or continue at the same dose as last week. 


Her at home medicine are minimal this phase which is none other than AWESOME. All she has to take is her antibiotics twice a day three times a week. Compared to previous months this phase should be a breeze. 


Today was a long day at the hospital though as she had her chemo as well as she had her "play therapy" appointment with a Psychologist. She was a big girl and had her appointment all by herself while I went and made some important phone calls since its been near impossible to do that around Jaidyn lately. 


One of the many reasons she's seeing the Psychologist. 


Along with the separation anxiety towards me, the regression of simple skills she once had, and her constant hysterical attacks she's been having over the last few weeks. - To name a few.


All of which she only does in my care. She's of course a perfect angel for anyone else.


I think its good though for her to talk to the Doctor about how she's feeling, going through all these changes and also great for them to be able to help me, and provide some insight and ideas on how to handle these tough situations.


I went by myself today, and probably will try to avoid doing that again for a while. At least until Jaidyn gets over these issues she's facing and doesn't "need" me as much as she thinks she does right now. I've found it near impossible to listen to the doctors and nurses when she is constantly needing me for something. So next time I'm bringing someone with me. Any volunteers? 


At the end of the day, I was exhausted, Jaidyn was exhausted so we had a nap and then crawled in my bed and watched "mommy's shows" as she calls them, for the rest of the evening. Ordered some pizza, and for the first time in a long time Jaidyn and I had an excellent night with no whining or crying, just a lot of cuddling and loves.


I miss nights like that.

a VERY thankful Thanksgiving

This weekend was Thanksgiving, here in Canada.


Which also comes hand in hand with my birthday. A few months ago I had planned to go away for a nice relaxing week, perhaps at an all inclusive resort or a cruise. Those plans however changed back in August when Jaidyn's was diagnosed. But that's ok, it just means I'll have to go another time. So this birthday I planned on just staying low key, having a nice dinner and a relaxing weekend.


Plans changed.


Everything was great until Sunday rolled around and it turned out to be far from relaxing. Jaidyn was acting really irritable and told me her "body was burning" when she tried to go pee. Automatically I went into stress mode and grabbed the thermometer and started packing our bag preparing to be admitted to the hospital.


Any sort of fever for Jaidyn means hospital admittance and IV antibiotics stat. A little infection for her could turn into something quite serious so the doctor's take all precautions when it comes to a fever.


Of course she didn't have one, but I called the On call Oncologist anyway. They advised it would be best to bring her into Children's to be seen just to rule anything out- as I suspected a bladder infection given her symptoms.


So off we went, with no clue how long we would be there. She was seen by an emergency room doctor upon arrival, with her blood and urine being analyzed right away. Still no fever.


Blood levels were normal (for a child with Leukemia) but her urine did show high white blood cells. Meaning she had some sort of a urinary tract infection. Given that she did not have a fever we were able to be discharged with a prescription for oral antibiotics.


Since we were scheduled for her chemotherapy a few days later they opted to leave her butterfly accessed so they wouldn't have to re poke her for her appointment.


I thought no big deal to have the butterfly in for the next few days. As it turns out is is a big deal and will never go home from hospital with it accessed again.

She has to be saran wrapped to take a shower- Not fun

Three hours in and out. Not too bad for something that could have been quite serious.


With all the chaos, we were still able to make it home in time for Thanksgiving dinner at my parents house, where Jaidyn was so hungry she insisted on eating before anyone else. Not to mention her and I both devoured Nonny's (my grandma) Maple Pecan Pumpkin Pie Cheesecake.


I think this Thanksgiving was a lot different for everyone in my family. I know it was for me at least. Looking down the table at the smiling, bubbly little girl. I am so thankful for the care she has received, for the strength she has to fight this illness and for the people around me who have kept me smiling and prayed for my little girl to get better. 


It is simply amazing. She is amazing.


Words cannot express how thankful I am.

Mom Bully 2.0

I can't believe it happened again. 


That mean mom was at the clinic and she actually bullied me today. Another mom saw and the nurses were advised so I will leave it in their hands. Just kinda of confused as to why someone would treat another person like that. Especially in this environment.


Anyway, this week has been really tough emotionally. Jaidyn has been really really really clingy towards me and has been having what seem like anxiety attacks over the simplest little things. It seems like nothing, but its really hard to describe how her behaviour is in words. Dr. Rod has suggested Jaidyn see the Psychologist. Not only to help understand why she is acting this way but also to help Jaidyn understand her illness a little better.


So today she had "play therapy" with two Psychologist where they observe her over the course of an hour in a room full of new and fun toys. Sounds pretty fun for her. 


And that it was. She played with a doll house for a good half hour, play-doh (which I refuse to let in my house since it becomes embedded in the carpets) dinosaurs, puppets and so on. She had a blast. She was really shy at first and wasn't really sure what to play with but she soon warmed up and was the sweetest, polite little girl I've ever seen.


I was sure to let them know that "this wasn't the Jaidyn I've seen lately." they both laughed and said that they were sure her personality would come out stronger next time. They also suggested they do an hour without me there, which will give me a little breathing room as well. 


After that we went down to the clinic for just a short visit with Dr. Rod and April just to check in and we were on our way. Her weight is back down to normal for her age. Still a few pounds heavier then before treatment started, but we all know she could use a couple extra pounds.


Back next week for the start of her next phase.

A lazy Sunday

This weekend was pretty uneventful as usual.


We like things that way.


Jaidyn's dad (Andrew) was down to visit and take care of her, and give me a little break. Which was greatly appreciated and quite needed to say the least.


When she came home this morning, it was a little overcast but not raining so we decided to take a quick trip to the park to burn off some energy. She was quite shy with all the little kids, which was fine by me (less germs to be passed back and fourth) but took a liking to the rock climbing wall. I thought this was perfect since her leg strength is still quite minimal.


During the first month of steroids there was rarely a time she actually walked on her own. She was always asking to be carried or she pretty much just laid in one spot. The atrophy in her leg muscles has become quite noticeable. Anyway, she's walking and running again. And as of today- climbing rock walls. 

Afterwards, we went and ran a few errands where she found something she really really really needed. So I let her try it on and I mean... how could I resist?

We also stopped and had some lunch. Eating has been a touchy subject since she has no interest in it for the last month. But they had home made mac and cheese and surprisingly she ate quite a bit of it. She loved the mac and cheese but was not too happy about me taking pictures.

Once home we decided to read magazines and the only way she would let me read mine was if she could draw moustaches and silly glasses on every person in the picture...  Her and Dustin also decided to kill bees on the patio with the kitchen cleaner. It was pretty entertaining.

Gotta love lazy Sundays.