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.