Monday, 10 February 2014

She roared her first big roar today!

It has been extremely long since I last wrote.. I apologize. It has been a crazy week and a half since we got to go home from our last stay at the hospital!
We got the word from the nurse practitioner that we were able to go home FINALLY on Jan 29th from our 8 days stay where Hayden had a cold. Of course I had fully anticipated us being back in the hospital in a week or less.. so I hesitated unpacking our bags, or anything we had just brought home with us.. but after a few days I realized I was just jinxing ourselves and to take a deep breath and relax!  Of course with every cough and sneeze Hayden has I run and grab the thermometer and check her.. she's always fine but it makes me feel better to do it. I also email daily with our nurse case manager Julie, I don't know how she doesn't get sick of my nonsense, but she always responds to me with reassurance that i'm doing everything right! (Julie - if you ever read this, you are truly an amazing person!!)
I was fully warned that with Hayden's steroids she was going to be a bit of a monster (to say the least), but what they should have told us was that we'd have to deal with a 16 year old girls mood swings, and a 16 year old boys appetite!! There hasn't been many times where she didn't have something in her mouth, or where she wasn't pointing at the kitchen screaming (or demanding) more! We went from craving goldfish crackers, to pickles and cheese.  Salt has been the main desire.. but we were told that it was ok to give her (within reason) what she wanted because it's only 29 days that she would be on the steroid.. and that they would be very forgiving if she ate not so healthy options!
On wednesday she had to go back into the hospital for her lumbar puncture and bone marrow tests. This means that day 29 had arrived.. yay!! She was no longer taking her steroid!! This also means that as of midnight on tuesday she was NPO, which means (I believe) Nothing Passes Orally. Yup, that means I had to tell Hayden, who craves everything and anything at any point of a 24 hour day, that she couldn't eat anything until after her procedure that was scheduled at 1pm was over. She also wasn't able to drink anything after 9am on wednesday morning.. so let me tell you, I was scared for not only my life.. but for everyone around her! My mom came down to help me distract her in case I needed back up.. but honestly Hayden did extremely well!! There were a few breakdowns here and there, but all things considered she was amazing!
Her procedure was scheduled for 1pm, and we were told that she was going to be first on the list.. but when I asked the nurse at 1:45pm what was taking so long she told me that if there was anyone having just a bone marrow test done they were to go first. So we were in fact first on the list.. just first on the list to have the LP and bone marrow done! At 2pm the porter came in and said it was time to head in! So the nurse, the porter, Hayden and I all went for a short walk to the procedure room where we were greeted by about 7 people all in gowns, gloves, and masks! Luckily our doctor was the one doing the procedure too. I have nothing but complete respect for all of the oncologists in the Childrens Hospital, but I truly LOVE our doctor, so I felt Hayden was in great hands when I left her.  At the beginning of this nightmare (and you will often hear me refer to this as that.. because it is nothing but a nightmare) I found out that a parent has to take the children into the procedure room and stay there until the child falls asleep.. and I can honestly say that after about 3 procedures now where she has been put out.. I have had tears every time. Its a crazy thing to see your child be put out. You have nothing but sadness and fear in your heart for your baby. But, as soon as she is out.. I leave.. have my cry.. and wait patiently for her to wake up! About 25 mins later she was brought back to me, and she slept for another hour after. They didn't want to wake her up too soon so she wouldn't have a headache from the anesthetic. We were told we wouldn't get her results that day, but that we should get a phone call the next day with them. When she finally woke up she ate everything we gave her! She was happy and hungry and was ready to go home. Once they took her line out of her port a cath, we were on our way home!
So, as any other mother would do, I let the worry set in until I heard from the doctor! A lot of people kept saying to me not to worry, be positive.. and so on. I tried my absolute hardest to be positive.. but after not hearing the results the next day.. and then again the next day.. and then all weekend.. I did nothing but think. I thought of every possible thing the doctor could tell me.. whether it was good or bad news. I cried daily, especially everytime i'd see her laughing. There were even times when I had to keep asking Hayden if she was going to kick cancers ass (and anyone that knows Hayden, knows that she says yes to everything), and her response was always an excited "YA!". Hearing her say that reassured me, and I truly believe she knows what she's doing.  I was getting cranky, I was being short with people (sorry Jon xo) and I just couldn't handle the stress anymore.  No one is built to carry so much stress.. especially when it involves your only child's health. I was told by a good friend that crying just means you've been too strong for too long, and let me tell you I needed that cry! It's a horrible feeling when you can't control your childs health. I can't just give her some Advil or Tylenol to make her better, and as much as I wish I could snuggle her better.. it just wouldn't do what we need it to do! We have given complete control of our daughters health to doctors and nurses.. and we just do as we are told.. and pray to god every night that it's working.
Well, after a long 4 days.. we finally got a phone call from the doctor. She informed me that all of Hayden's test came back perfect, and that no leukemia cells were present in the LP or bone marrow test.  I cried. I felt bad for the doctor because she had to hear me sobbing so badly! She said to me "I hope those are happy tears!!".. believe me.. they were.  I know this battle is far from over, but hearing that there was no more cells present made me feel like we just won a billion dollars!  
We go back on wednesday for a meeting with our doctor to discuss our next phase of treatment.  There is nothing good about having your child go through cancer, but it truly does make you appreciate the time you have with your family so much more then you did. I wish I could have all of our families living in the same town so we could see them everyday.
As a side note - I want to say a massive thank you to all of the wonderful people in Mount Forest for supporting Hayden at the Patriots benefit game night! They all worked extremely hard to make it a true success.. and it was nothing less then that!  Thanks Michelle, Patty and Rick, my amazing girlfriends, and to the Patriots executive for working so hard to help out our little girl!  We saw some pretty cool pictures from the event, and one that stands out the most to me was seeing the Patriots hockey sticks with pink tape around them to show their support to Hayden. It warmed my heart seeing that, and I hope those boys know that through all of the crap Hayden has gone through and will continue to go through until this battle is won.. seeing the pink on their sticks put a big smile on her face! You are amazing men.. and I hope you guys go to the very end of this season as champs! You're already hero's to Hayden.
This coming weekend a good friend of mine and her husband are throwing a benefit called "Hope for Hayden" at their restaurant here in London called Fitzrays (located at Dundas and Talbot). There are 5 bands that will be there donating their time, and some AMAZING prizes (ex. BMW donated a mini cooper for a weekend!). It starts at 3 pm on Sunday, and i'm hoping to attend! I can't wait to see all our family and friends in one place!! 
That is all for tonight.. sorry it seemed kinda long.. I had a lot of catching up to do!! :-)
Until next time..  xoxo

(If I can get permission to post the picture of the hockey sticks I will add it in here or on the next post.)