Short and sweet

That's the way we like it. 


Jaidyn's hospital visits that is. Today we went in for another LP which again has become quite routine. She had a bit of anxiety about getting her butterfly today so immediately the Psychologist was paged and came down to talk to us. Its amazing how fast things happen at this hospital. 


My mom was with Jaidyn while she was getting her butterfly while I went and talked to the Psychologist about how things have been going so far and about how much Jaidyn really knew about her diagnosis. Had we been using the word "cancer" around her? That kind of caught me off guard and I wasn't really sure how to answer it because all we have really said was that she was sick. 


The word cancer scares me, especially when I say my daughter has it.


How am I really supposed to explain to my three year old that she has cancer? So this is why next Thursday we have a special appointment with the Psychologist so she can observe Jaidyn and talk with both of us about how we are doing, and help find ways to explain things better to her. I think that this will be helpful for Jaidyn and also it will help the psychologist tell the nurses in oncology clinic the best way to make this experience positive for Jaidyn. 


After the LP was done Jaidyn was silly as usual, we counted down the minutes till she can sit up. She has to lay down for an hour so the spinal fluid doesn't leak which will cause a major headache. Then Dr. Rod came for a visit and Jaidyn was extra happy to see him today. They went to the treasure chest and picked out a nice treat and much to our surprise we were done.

No blood transfusion today... her levels remained high at 109. Everyone was super happy, especially us since we didn't have to put in a full day at the hospital. 


Short and sweet.


She was a happy girl leaving the hospital, so we made a quick stop at my work to visit some people and drop off some of her bracelets.

Afterwards, we had a little visit with baby Lily which was great. Jaidyn just loved taking care of her. 

 It's so nice seeing her so happy. Hoping her positivity keeps up for as long as possible.

So simple, yet so perfect

Today Jaidyn asked me something she hadn't asked me in a long time


Something that to anyone else might seem so minor but to me it was major. It was a sign that everything is going to be ok. A sign that this month WAS going to be a little easier than the last. 


Jaidyn looked out side and saw it was sunny (weather has been really random here lately) and said to me: 


"Mommy, can I go ride my bike?"


I actually kinda teared up a little and rushed to the door and said "of course!!!" before her mind changed to something else.


SO for the next hour or so we sat there and watched Jaidyn do laps around the terrace,back and forth between her big girl bike and her tricycle which she zips around on. 

It was perfect. Until the rain clouds came of course.


Then we all went inside and built a fort. Which of course was just as fun. 

Jaidyn's Deal with Dr. Rod

Today was another clinic day for Jaidyn, where she would be getting an LP and possible blood transfusion if her levels were low. Pretty routine for us for the last few weeks.


I was worried to see Dr. Rod given that Jaidyn still hadn't been ate anything over the last week. And by me saying she hadn't ate anything. I mean it. I have no clue how she is able to be so energetic with NOTHING in her stomach. But the nurse and dietitian have reassured me they see it quite often that once off the steroids kids just don't want to eat.


She also is still not taking her medicine very well. The 6-MP is a little easier than the antibiotic that she takes twice a day, three days a week. She hates that one and always has, but never used to spit it at me. So we have also wasted a lot of that. It was on the top of my list to ask Dr. Rod if there was any other flavours for that one.


The LP was fine, she was kind of loopy after the Ketamine. My favourite part is the big smile she always has on her face and how she tells me she went swimming. (The room is painted like an under water scene)


I thought today would be a quick day since she didn't seem too lethargic over the last week, but I was surprised to see that her hemoglobin was on the low end of normal even after getting a transfusion last week. Dr. Rod asked me if I thought we should transfuse her and I opted for yes as it does usually make her feel much better and she sleeps great after it. So now we wait for blood. (which by the way takes FOREVER)

Gluing

Trying to trick her to eat chips

Putting in her hours at the ice cream shop.

So while we wait, Dr. Rod wants to talk us in his office. And by "us"I mean Jaidyn. He sat there and had about a 15-20 minute conversation with Jaidyn about the importance of her medications and how she needs to take them to feel better. And if she wants to stay at home and not be admitted to the hospital she needed to take them nicely for her mommy. Its amazing how responsive a child is to someone else talking to them.


Dr. Rod then went on to make a special deal with Jaidyn. He told Jaidyn that at the end of the two year treatment, if she takes all her medicine like a good girl that she would get a wish. A wish for ANYTHING. A wish that he suggested she should choose something like fully paid trip down to Disney World for her entire family, where we would stay in the best Disney Hotel and have breakfast with the Princess's every morning and not have to wait in any lines and get all the special treatment she deserved. But ONLY if she took her medicine like a good girl.


I looked over and her eyes lit up and she said "and I can see Mickey Mouse?"


To be honest I don't know who was more excited about that, me or her!

So happy about Disney

So for the next two years Jaidyn has to nicely take all her medicine and not give us any trouble. She made a point to tell all the nurses for the rest of the day that she was going to go see Mickey Mouse IF she took her medicine.


I'm not quite sure if she grasps that its not for another 2 years. But still, she's excited.


She was so exhausted by today that on the ride home, with her treasure box treats in hand she passed right out.

Tonight was the test if she was going to stick to her end of the deal and of course it was still a struggle but we managed. And immediately after she took it she said "Mommy text Dockar Wad (Dr. Rod) and tell him I took it like a good girl!!"


Dockar Wad is the best Doctor EVER!

New Challenges

I think I speak for everyone involved by saying we all thought that after these steroids were over things would get significantly much easier.


This has not been the case.


Actually I take that back. In the sense that Jaidyn is defiantly feeling much better, her mood swings have subsided and her personality is finally coming back I am happy to announce she is that laughing, smiling, stubborn little girl again.


Hallelujah!


However we have now been met with a new set of challenges.


This at home pill form Chemo that has to be taken daily... The same one that mixed with peanut butter ended up all over mine, Jaidyn's and Brandi's hair. Yes,  6-MP you are our new enemy.


We tried apple sauce the next night. And again, ended up with apple sauce spit all over my face. Maybe Jelly? NOPE! I pretty much tried every sort of soft food it could be hidden in but nothing worked. And on top of it all she wont eat. Its been 4 days and she hasn't had anything to eat. Other than that pinch of shredded cheese she asked for before bed one night. So I was at a loss. Could she really have ate enough in the last month to keep her energy levels up and body functioning for 5 days of no food? And 3 days of wasted pills!


I freaked out and called the On Call Oncologist. After I told her what was going on I could hear her in the background consulting the other staff and heard words such as "maybe they should come in and be admitted and fit with an NG Tube (nasogastric intubation tube)"


I immediately panicked and thought to myself "I have to figure out how to get this medicine in her!" So I asked the doctor if I could just crush up the pill and put it in a syringe with some apple juice and squirt it down her throat? Since she had been taking medicine for the last month up to 6 syringes a day she probably wouldn't even notice.


So she told me to try that. And if that didn't work we would have to come in to the hospital the next day and somehow get this medicine in her. She wasn't worried about the lack of eating at this point. So that put me at ease. She'll eat when she's hungry I suppose.


I was determined to get this in her so that night my parents and I all made a big TA-DAH about her apple juice medicine, and with a slight struggle we got it in her.


That's about all that happened over the weekend other than we also dressed Hunter up in Jaidyn's clothes. That was pretty entertaining. For her anyway, Hunter may have felt differently.

We have a few more days till we have to go back into the hospital for another Lumbar Puncture. Hoping to get this medicine in her everyday so we don't have to go in for that NG tube. So, we'll see what tomorrow brings :)

Consolidation

This is a breakdown of what the next month has in store for us. But I wanted to start off by saying Jaidyn slept 11 hours straight last night. I don't even remember the last time anything close to that happened, but I am thankful, rested and ready for a good day!


Side note: I may have woke up in panic mode since it was 8:00 am and couldn't figure out why Jaidyn was still sleeping. But that's ok. She had an amazing sleep. THANK YOU BLOOD TRANSFUSION!


PLEASE everyone if you can give blood, do it! It wasn't until this, that I actually realized how important it is for you to give. 


Ok so this month I have been told is going to be a breath of fresh air compared to the last month. I had had it up to here (insert hand motion above head) with the steroids. TWENTY EIGHT days of no sleep, constant eating and a VERY moody child. I was a bit on edge to say the least and i'm sorry for anyone that had to be around me. But we're done that now and we begin Consolidation.


For those of you that are following her treatments this month goes a little something like this.

Sept 15 and Oct 13: (start of 3rd phase called Intramaintenance) she receives Vincristine by IV.

Sept 15 Sept 22 Sept 29 and Oct 13: She has a lumbar puncture where she receives Methotrexate into her spine.

Sept 15- Oct 12: This month she starts a new chemo called Mercaptopurine or 6-MP is an immunosupressive drug that she takes in pill form once a day. She cannot eat for two hours before and one hour after. Also in the three hours of not eating she is not allowed to have dairy in any form. This all together is a  pain in the ass, I mean really what three year old will swallow a pill. Maybe I can just wrap it in cheese and have her inhale it like a dog? No? Ok fine, I bought a pill crusher and tried putting it in peanut butter on a spoon (as advised by the nurse to do) Ha... that ended with both Brandi, Jaidyn and myself covered in peanut butter in our hair on our face and both Brandi and I laughing hysterically and Jaidyn screaming hysterically. Plan B apple sauce.


The 6-MP is given everyday... great.


And thats it for this month. Pretty simple so it seems. I guess we'll soon find out.

A busy day at Children's with Annie B

Today was the first day of her second phase called Consolidation. We went back into the hospital for the first of her weekly lumbar punctures. A lot of things happened today at the hospital, which ended up being a LONG DAY. But thankfully Jaidyn was in a good mood because hadn't had to take any chemo's or steroids all week which was a nice break for EVERYONE.

The steroids have slowly exited her body and that happy little girl of mine has finally graced us with her presence. There are no words to describe how amazing it is to see Jaidyn so perky and playful, but most of all hearing that laugh again. A laugh that has been constant with our current visitor. My best friend from Portland, OR, who I haven't seen in almost 2 years has come to visit. Brandi (Annie B) has come at the perfect time. She has been the main source of laughter and smiles in the last couple days, exactly what Jaidyn and I needed. I am so glad she was able to be there for Jaidyn and I especially for today's hospital visit.


Lumbar punctures are easy peasy now, for Jaidyn at least. We check into clinic, they do her vitals, we go play in the play room for a bit and then its time to get her butterfly. Jaidyn was extra excited to show Annie B how she gets her butterfly. So once that was all done and her blood was sent off to the lab, we go back and do a little bit more playing until its her turn for her procedure.

We had noticed the night before that Jaidyn's voice was kinda shaky and raspy sounding, and I had remembered that one of the Chemo's can affect vocal cords, so I mentioned something to the Doctor and right away a phone call was placed to the Ear, Nose and Throat specialist.  I had no clue what was in store for us next. They sent us upstairs to go see the ENT, where they told us they would be putting a tiny tube with a camera up Jaidyn's nose and down her throat so they could see her vocal cords. No problem right? Oh, by the way... she'll be awake and sitting on my lap while they do this.

That was real fun.... (sense my sarcasm?) We managed to get it done, while I held her Brandi kept her entertained. Her vocal cords looked normal and were moving properly so nothing to worry about at this time. So back downstairs for her LP we go, where for the rest of the day Jaidyn told everyone she had spaghetti up her nose.

It was really nice to have Brandi there with me especially for that and also while she's in getting her LP done. Even though she's done it a handful of times now it still upsets me knowing what she's getting done

But she always comes out with that lovely smile on her face, and something silly to say about being underwater when they wheel her out of the room. After every LP she has to lay down for an hour so that she doesn't get a headache as some CSF can leak out of the puncture site. So Jaidyn and Annie B got to lay on the bed, I was told I could only sit on the chair.

Jaidyn has to lay down for an hour after her LP so she doesn't get a headache from any of her CSF leaking out. So it is every ones challenge to come up with ways to keep her laying down. "That girl"- Brandi did a very good job. 

Her blood results came back and her Hemoglobin was quite low, which I suspected as she had been pretty lethargic over the last 2 days. So she needed to get a blood transfusion. The blood was ordered (which usually takes an hour or so to get into the clinic) then the transfusion can be done over 3-4 hours. Again, so thankful Brandi was there with me as this was going to be a long day.


Off to the playroom we go.


This playroom is packed full of every toy possible, along with computers, every gaming system and a huge flat screen TV with a comfy couch in front. Different family's are in there for different reasons all equally going through a tough time. You'd never think that Brandi and I would get yelled, by a mother of a sick child. 


She had her show on the TV (which she wasn't even watching) and Jaidyn wanted to watch Back in the Yards (backyardigains) so I asked if we could use the TV and not kidding you, she got mad at us. Wow, thinking about it makes my blood boil. But this wasn't your average mother. This was a mother who was comparing her sons Anemia with another mothers son's terminal bone cancer. Even though I'm sure she has gone through a lot with the anemia battle, I don't think that this is a place of competition. I could go on and on about this specific mother, but its a bit off topic and inappropriate so we'll just hope we don't have to see her again. 


We played trains, dinosaurs and cars (tomboy much?) then moved on to playing dress up. I took on the roll of photographer. Finishing off the day with a ton of arts and crafts. It really is amazing how relaxing "gluing" can be.

Eight hours later, and its 4:45pm, and we're done the blood transfusion. Next is her Vincristine Chemo which thankfully only takes 2 minutes, then a quick removal of butterfly and we're done!!!


Back to the pharmacy to pick up the "Consolidation" drugs and home for hopefully a good sleep.


Thank you Brandi for being so amazing with Jaidyn and helping me get through this tough time. You're love and support means everything to Jaidyn and I, we are forever grateful. xo

Take THAT, Leukemia!

Exactly one month and one day from receiving Jaidyn's diagnosis, I am ECSTATIC to announce that her bone marrow shows LESS THAN ONE PERCENT LEUKEMIA!!!

This is the news we needed to get us through, keep our spirits positive and from a medical standpoint continue as "standard risk" Acute Lymphoblastic Leukemia.

Jaidyn's original diagnoses started with her bone marrow showing 67% Leukemia. A fairly high number if you ask me, even higher than my math grades in high school! Dr. Rod told us at our last appointment that they wanted her to be under 5%, and he was confident she would accomplish that. We are so lucky to have such an awesome, kind-hearted, educated Doctor working with us. He knew she could do it, and she surpassed that 5% and showed leukemia who's boss!

If I remember correctly (because there has been a lot of remembering to do on my part the last month) this news puts us into the "remission" category. Awesome news, but unfortunately we're not in the clear yet. We still continue treatment for the next 2 years, but this month will be significantly easier than that last month.

Even though she'll have no clue what I'm saying to her I'm so excited for her to wake up (yes late nap if you note the time) and hug her and tell her the fantastic news. This last month has been the hardest, emotionally strenuous battle for Jaidyn, myself, our family and everyone around us on a daily basis has had to endure. This is what we all needed to hear.

TAKE THAT LEUKEMIA!

Bone Marrow Biopsy!

Today our day started at 430 am. That’s when she woke up, screaming for mac and cheese. Slight problem: she can’t eat or drink anything. Bone marrow biopsy is at 745 and she is going under general anesthetic so she cannot have anything in her stomach. Try explaining that to a steroid raging, ravenous for mac and cheese 3 year old. 

Since I’m usually such a planner I had it all organized, and even had told the nurse the other day what my plan of attack was for fasting this hunger driven child. For the last three and a half weeks she’s been waking up at 2 am on the dot. Since she had to fast for 6 hours it was perfect. She would wake up at 2:00 am I’d feed her quickly (mac and cheese and/or pizza) give her something to drink and she’s be back to sleep. Hopefully wake up at 6:00 am get dressed keep her distracted and we’d be on our way to hospital.

HA! of course not… she went to bed at 8:00 pm not really wanting anything to eat which was weird but whatever… I put her to bed and I waited until about 11:00pm to go to sleep since she normally wakes up once or twice before then. That didn’t happen. Should have been my first clue right there tonight would be different. So I went to sleep but woke up every 30 min wondering why SHE hadn’t woke up.

I wake up to her screaming bloody murder at 430 am for Mac and Cheese.  A lot of inappropriate language came out of my mouth as a sprinted to her bedroom to try and keep her from waking every one of our neighbors up.  Showers, shows, movies puzzles, books, games calling and waking up Nana. Each distraction lasted mere minutes. This went on for 2 hours. The car ride to the hospital was real fun since we had no choice but to drive by 3 McDonald's, all of which she noticed and begged for hash browns. Thank goodness for iPhones to distract her.

Note: this picture is not taken with the fat booth app, it is indeed Jaidyn 9 lbs heavier.

Jaidyn Lyric weighing 36.5 lbs (in her face)

We get to hospital, checked in right away, weighed, measured, vitals taken all the while  she

is asking our amazing nurse Kristy for Mac and Cheese. 8:00 am I take her into procedure room, hold her while anesthetic is put in and on they go with the biopsy. 

Finally I can run and get some coffee for Mum and I, and within 15 minutes she is being wheeled back into her room, sleeping soundly.

Side note:

Above I mentioned how amazing Kristy is, here are my top 3 examples to date.

3. She always has us laughing, as our last conversation revolved around how nurses will all need depends when they’re older as they never have time to take pee breaks.

2. She talks like Roz from Monsters INC.

Mike: Good morning, Roz, my succulent little garden snail. And who will we be scaring today?
Roz: WAZOWSKI! You didn't file your paperwork last night.
Mike: Oh, that darn paperwork! Wouldn't it be easier if it all just blew away?
Roz: Don't let it happen again.
Mike: Yes, well, I'll try to be more careful next time.
Roz: I'm watching you, Wazowski. Always watching. Always.


Jaidyn LOVES it!


And the #1 reason why Kristy is our favorite nurse is because when Jaidyn got back from surgery and started to wake up from her anesthetic Kristy had gone and made her Mac and cheese and it was sitting there cooling off ready for Jaidyn to eat.


The smile on Jaidyns face was priceless.


Jaidyn woke up nicely from her anesthetic, her vitals were good and she was excited to eat. I however, was excited she was sitting up so I could lay on her bed and take a little nap.

She played in the playroom with her Nana for a bit while I talked to Dr. Rod and his nurse April where they went over the difference courses of treatment that would follow based on her results from this biopsy. Dr. Rod as usual was certain this biopsy would bring great news as Jaidyn has already been responding so well to treatment.

Dr Rod popped into the playroom to say a quick “hello and goodbye” to Jaidyn, where her response to his “Hi Jaidyn, how are you feeling today?” was “hey! You got a haircut!!! 

I take pride and all credit for her ability to pay attention to detail- Kidding… (kinda)

After a quick walk over to the pharmacy to get her new medicine for the month, we had a photo shoot with one of the many bears that hang out around the hospital and then we went home. Now we wait for the good news. Everyone keep their fingers crossed that Jaidyn has kicked Leukemia’s butt! Oh and also, let’s hope that these steroids wear off sooner rather than later. We NEED some sleep around here.

A good day

Today was another sunny day so Jaidyn and I decided to go swimming in “Tashi’s pool” as she calls it. Even though Tashi is now away at college we still went to dip out feet in. I was informed by Jaidyn that that’s all she really wanted to do. She also let me know that Dustin was only allowed to come and go swimming as long as he didn’t splash her in the pool. 

Like mother like daughter.

Not long after we get there she of course asks for pizza, which thankfully I packed a cooler full of her current cravings even though we only were planning on staying for a couple hours.

Dipping our feet in while eating pizza was a great combination, we even brought the pizza over to the trampoline and ate it there. She was laughing so hard jumping up and down on the trampoline.. It was so nice to hear that giggle again.

Back to the pool to eat again. This time some amazing Serbian cake from the party on the weekend. Dustin was showing off his dives and Jaidyn was rating them. First dive a ONE second dive a TWO and so on… the best one however, is in the video... notice he gets a full FOUR!

Then the two of us decided to go out and run some errands for the first time on our own which didn’t really end the greatest since I didn’t bring a stroller and she insisted on being carried everywhere. She now has barely any strength in her legs due to the chemo/steroids as well as she has now gained 9 lbs since we started this ordeal… It's not easy to carry around that weight, along with her belly that actually gets in the way. She told the lady at the cash register she had 10 babies in there and that the lady could have one of them. At least she still has some personality through out all of this.


Came home took a little nap, ate dinner, went for a nice long walk, insisted we order sushi from downstairs, watched the fake jellyfish swim around in the tank and then came home and went to bed.

Fingers cross she sleeps tonight. 

Taking advantage of "Go Play"

Tonight Jaidyn, Dustin and I went to my bestest friend Tashi’s "going away to university party". (I say bestest because we met when she was 3 and that’s what she called us- add a lisp as well). I was actually kind of nervous to have Jaidyn around a lot of people since it would have been the first time since the diagnosis. Although her doctor did let us know her levels were really great and she had to go ahead to “go play!”

She was really excited to go to Tashi’s party, with her hair in pigtails and chips and pizza in my purse (just incase she got hungry). We got there and everyone was excited to see her, especially the kids. She was shy at first but it didn’t take long for her to start following Tiya around and even was jumping on the trampoline. Tiya is 11 years old and reminds me of myself when I was that age, taking care of all the kids. And I can’t thank Tiya enough for what she did for me that night. The simplest thing, was her walking across the yard to the trampoline with Jaidyn made me realize “this is all going to be ok”. The reason I say that is because I hadn’t seen Jaidyn so happy, and have so much energy in over 3 weeks.  These steroids have taken a toll on her energy and happiness and I cannot wait for them to be over.

So Jaidyn had a great night, and it was so nice to catch up with family friends I hadn’t seen in a while, plus the Serbian food was amazing.

All in all it was a great night.