One day at a time..

What a roller coaster the last month has been!
We unfortunately found out the hard way that Hayden is allergic to one of the chemo drugs she was to have.  She has had this drug 2 times before.. and we knew that a reaction could happen after the 2nd, 3rd or even 4th dose of it (like an anaphylactic reaction).. but we had no signs the last few times so I surely thought this past dose would be a breeze.  Well, 15 minutes into her dose she started to get super cranky, and almost found herself getting extremely uncomfortable. She was also starting to breath really hard and her poor little lips started to get puffy. Luckily her tongue and air way were fine! They had to quickly give her a dose of benedryl and a steroid to help her. We got admitted that night for observation and she was fine for the remaining of the evening. But let me tell you, that was probably the scariest thing to witness as a mother.. especially since I could do nothing for her. Thankfully we were in the right place for her to have the reaction and the nurses and doctors acted extremely quickly, and within a few minutes of her getting the benedryl she was in a good sleep.  So, i'm sure you are all wondering what happens next if she has a reaction to a medicine that is supposed to help her in the long run.. I wondered that too! But then I remembered that our doctor told us at the beginning that she always has a back up plan should such an occasion arise. SO - our next step was to recieve a drug called Erwinia. This chemo is a sister drug to the one that Hayden had a reaction too, and chances of reactions were a lot more slim. The reason they like to do the Pegasparaginase (first chemo she reacted too) before trying the Erwinia is because the Erwinia is 6 leg pokes spread out between 2 weeks - where as the pegasparaginase is done in one shot. I knew this road wasn't going to be easy, but my heart broke when I heard that she would have to be poked 6 times in the leg muscle.  We went home that weekend and prepared for our first leg poke on monday.  Well, to our surprise when we got to the hospital on monday, they decided to do the very first Erwinia treatment done through IV in childrens hospital on Hayden! We were so greatful that the needles weren't happening, but we waited a long time for the procedure to get on its way as it had to be signed off by the co-ordinator and so on..
About 5 minutes after her treatment, Hayden started getting cranky again and I started to panic. She then started to vomit, but thankfully that was it. We realized after that she likely will need anti-nauseant meds for each dosage from that point on. She went home that night and was sick a few more times, but was relatively ok! I could tell already that I wasn't going to like this drug, but it wasn't giving her a reaction so I just sucked it up! I know chemo meds can cause nausea - but we were doing so well for so long, that you almost think when things start to go wrong.. you start to feel defeated.  But, Hayden tolerated 2 weeks of nausea and we finally got to move on from that horrible stressful time in her treatment! The unfortunate thing is that in our 4th phase she will have to get Erwinia again, but luckily we get a 2 month break from that in our current phase (3rd phase is called Inter Maintenance). Hayden had a great easter weekend (even though she wasn't feeling 100%) but we found ourselves back at the hospital about a week later with a fever. Turns out she had a cold, and was put on antibiotics for 48 hours and then we got to go home! She unluckily got a yeast infection from the antibiotics, but after a few days we got a handle on it and she was back to her normal self.  I almost wondered to myself - how on gods green earth does this all have to happen to her?? Why can't she catch a break already?!?!?!
The following weekend we got to go to Wallaceburg for the Relay for life yard sale to support Team Hayden! What a great turn out they had, and thank you to all that was able to come and support us! We truly appreciate it!!! The walk is on May 30th, and as always - we are still looking for donations! Please, if you can, donate to Team Hayden on the www.relayforlife.ca website. You can donate directly to the team or individual walkers! It actually looks like Hayden is going to get to walk the track that night in the "survivors lap". I'm so excited for this. I'm sure it's going to be an emotional one for me.
This past friday we went into the hospital to have Hayden's counts checked to see if we were finally good to go so we could start our 3rd phase. They were!! She had a lumbar puncture that day and then we were admitted into hospital for the weekend.  After a long long long weekend we got to go home today and we were both extremely happy! Unfortunately it was raining, so we couldn't take Hayden outside to show her the big new surprise for her in the back yard!!!
After all the hard work that Pam Carson and our friends at Solowave have done - Hayden got an extremely generous playset for the back yard!! It was delivered on Friday by TST Overland Express (big thank you to Ben, Angus, and Al for helping with the delivery!!) and Jon was told that over 16 different drivers wanted to be involved in the drop off!  They helped Jon carry it to the back yard which let me tell you doesn't sound like it would have been easy since it weighs about 420lbs. So thank you for all your help guys! I wish Hayden was here to see you all, but once she sees it I will post a picture of her playing on it so you can see how happy you have all made her!!! Jon and my father in law Remi put what needed to be put together still on saturday and once the ground gets finished off we will have it complete! Thanks grandpa for all your hard work this weekend!!!!!

Thank you again to everyone that continues to send love, support, extremely generous gifts and donations to Hayden. You have all helped us not feel so alone in this fight! On mothers day night I looked at Hayden in her hospital crib as she slept peacefully with her I.V cord in plain sight. This isn't how things were supposed to be and that wasn't how I thought i'd be spending my 3rd mothers day.. but, I got to spend it with my little girl and that's all that matters to me at this point. Taking things one day at a time sure does suck.. and not being able to plan our life for the long run definitely doesn't sit well with me, but today i'm a happy mom because I get to play, and listen too, and watch my little girl growing up.. one day at a time. I'm truly blessed for the time I have to spend with her. Being home with her over the last few months has made me appreciate and love her so much more then I ever thought possible.  Happy belated mother's day to all of the wonderful mom's out there. Whether they are near to us, far away, or even in heaven watching down on us.. they love us like no other and always will.
Have a wonderful may long weekend. Stay safe on the roads, but have loads of fun in where ever your adventures take you! xoxoxo

Lots of positivity in the air!

Hello friends!
It's been (again..) a little while since I've wrote.. and so much seems to be going on lately! So I thought i'd take a few minutes to write you all and let you know how things are going and what's new and exciting!
After the last post, our wonderful neutrophil fairy made a much appreciated appearance and gave Hayden enough "neuts" to continue her 2nd month of her 2nd phase of treatment.  She is basically repeating the 1st month with a few minor changes. She's doing really well too! She was getting her at home injections again, and just finished those yesterday. She's taking her bedtime chemo until the weekend I believe, and then she gets her regular friday chemo still.  It's been 3 months now since she has been diagnosed, and I can't believe the positive changes in her! She's happy, energetic, all things considered pretty healthy, and acting like the Hayden I knew before all of the signs (we had no idea were signs) started showing up.
We got some extremely exciting news this past weekend!!  There is a company in Mount Forest called Solowave, and a representative for the company contacted my mom and mentioned that she wanted to get a hold of us as they wanted to donate a playset for Hayden. A back yard playset!!!! I've been saving up to get her one for a few months now, and then this wonderful woman walks into our life and tells us that Solowave wants to help Hayden along in her journey by giving her a playset!!! We get to pick which one we'd like too. I can't thank Pam Carson, and the rest of the amazing and thoughtful people at Solowave for doing this for Hayden. I'm still in shock! I can't wait for her to see it all set up when we get it.. she will be extremely happy!!!
This evening I was visiting my wonderful friend Mary-Ann, she made a bunch of beautiful hair clips to support Hayden.. and I have to say.. they are gorgeous!

This is our little model showing off her new hair clip :-)

Mary-Ann's wonderful Grandma, as well as her grandma's fellow prayer group, made her a beautiful blanket as well. As they were making the blanket the said numerous prayers for our sweet girl. To these wonderful women, and to Mary-Ann's grandma that took our story to their group, your kindness and prayers are extremely appreciated. Thank you just doesn't seem like enough anymore. When I got home tonight, Hayden opened her gift, and I wrapped her in the blanket that has so much love and prayers poured into it. She loved it, and took it to bed with her!! Mary-Ann also sent me home with some pasta sauce that her dad made! Can I just say that Mary-Ann and her family rock!?

This was me giving her a squeeze, so all the happy thoughts, lots of love, and much appreciated prayers could be felt with it wrapped around her.
And then she was off to have her sweet dreams..

So as I mentioned before, some of Hayden's Wallaceburg family, are participating in the Relay for Life walk on May 30th. We are going to be having a yard sale to raise money for our team on May 3rd and I hope if you're reading this and you are from Wallaceburg you will be able to come say hello and to take a look around! I will have more details about the event in my next blog.  Also, if you would like to donate and are unable to attend the yard sale, please feel free to donate at www.relayforlife.ca and you can find our team under "Team Hayden". All of the info on that was in the last post!
Thank you again to all of the wonderful people who daily or weekly send me a text, email, or phone call to check and see how we are all doing. We are so lucky to have such amazing people in our lives who we get the privilege to call our family and friends.  One more quick thank you to my awesome mom for taking some time off work so she could come help me during our long clinic days. She sadly has to go back to work soon, but we are so thankful for the days we got and get to spend with her! She keeps Hayden busy when I have to run around the hospital picking up different prescriptions, and will sit there and color with her, or stick stickers to her nose, or lay a wash cloth on her head just to keep Hayden happy. I'm gonna miss having her up there with us on our weekly visit.. but I hope she knows we couldn't have got this far without her being here.
That's all for tonight! Sweet dreams friends xo

I believe in manicures. I believe in overdressing. I believe in primping at leisure and wearing lipstick. I believe in pink. I believe happy girls are the prettiest girls. I believe that tomorrow is another day, and... I believe in miracles.
Read more at http://www.brainyquote.com/quotes/quotes/a/audreyhepb413482.html#DOBIKVRLDeRQOu95.99

Booooo to sleepless nights

Another week has passed by..
Last week was a pretty crummy week for us. Hayden had a lot of stomach cramps and constipation from her last dose of the Vincristine (chemo). We had plenty of sleepless nights, causing mommy to do a lot of over thinking and worrying.  Finally this past friday I sat down with our social worker (Jessica), and Hayden's oncologist and had a cry. It has been 2 and a half months since Hayden has been diagnosed, and although at the beginning I cried almost daily, I felt like I had finally hit the big wall and needed to talk to someone. They both reassured me that Hayden is doing well in her treatment this far, and that its ok to have the feelings I've been having. I decided that it's finally time for me to sit down with a therapist (that is supplied to us through the hospital), and to figure out better ways to deal with all that is going on, and to find better ways to cope with all of this. I'm looking forward to talking to someone who doesn't know myself or Hayden, and will tell me what I need to hear, not what I want to hear.  I can honestly tell you that I truly wish for no parent to ever have to go through this emotional roller coaster!
After my chat with the doctor, we found out that Hayden's counts were good except her neutrophils were still too low, and that we'd have to wait for them to come up a little bit. Neutrophils are the infection fighting cells in our body, and because of the chemo they got knocked right down to zero. In order to continue on in chemo treatments she has to have a count of at least .75 - so we got sent home. This can be normal too. They want her counts to get knocked down with certain chemo's (so she's doing ok), but now we want them to come back up enough to continue. If we did treatment and her "neuts" weren't high enough it would cause Hayden more damage then it would benefit her. So please - pray for higher neutrophils for Hayden! We want to continue on sooner then later!! Cross anything crossable for us!!
I wanted to throw this out there to anyone that is maybe interested...
Jon and I are joining our family in Wallaceburg on May 30th for the Relay for Life walk!  We are looking for people to sponsor us!  Every little amount given goes towards cancer research, and although our team name is Team Hayden, we will also be walking for everyone in our life that in some way has dealt or is dealing with this disgusting disease.  If you wish to sponsor us, it's pretty easy.  You go to www.relayforlife.ca then click on make a donation. You click on pledge a participant or team and you can either donate to our team directly (Team Hayden), or you can sponsor us individually (Lindsay Foulon or Jonathan Foulon).. it all goes to the same place!  Thank you in advance to those able to help us out!!
That's all for tonight. The Leafs just lost to the Red Wings.. so it's time for bed.  Hope you are all doing well, keep our little fighter in your nightly prayers and daily thoughts! She's worth it.. I promise :-)

Happy 2nd Birthday Hayden!

WOW, i've gotten really lazy when it comes to blogging! I guess I've been pretty comfortable at home and feeling like our life has returned back to how its supposed to be. Although I know we are still FAR away from that day, having our happy girl home gives us some hope that maybe that day won't be that far away!
So since I last wrote, we had our meeting with our doctor. She informed us that because of a few reasons (early blood work, the fact that she got steroids before treatment started and so on.. ) they have moved Hayden from Standard Risk A.L.L to High Risk A.L.L. I'm not going to lie..I had tears in my eyes before I even knew what that meant or why it was changed. BUT, we have been reassured that it only means her treatment changes a little bit so hopefully we don't have to worry about relapses later. High risk just means that she has a higher risk to have a relapse when treatment is over.. but thanks the all of the pediatric oncologists, and the childrens oncology group.. everyone agreed that this is the best category to have her in in order for her to have the best absolute treatment! We trust them all 100%.
Hayden has been at home (minus a few LONG clinic days) since our last stay. She has been happy and healthy, and cold and flu season has so far stayed away .. knock on wood.
On Feb 16th my dear friend Andrea and her husband Mark threw a fundraiser for Hayden at their restaurant Fitzrays! Jon and I took shifts being there, him doing the first.. and me the last. I sadly didn't get to see some people, as did Jon, but we know you were there and thank you for coming!!  There were some amazing bands that donated their time, and all of the staff and event organizers put in SO much hard work to make the day a true success!!! There were some amazing prizes that were donated from local establishments and suppliers, and from some amazing people who aren't local but still offered to donate a prize! Thank you to EVERYONE that put any sort of effort into that day. You are all amazing people, and we hope that in 2 years when this nightmare is over we can all gather at Fitzrays for a celebration when Hayden wins her battle!! We want to thank everyone for coming down to support Hayden in her fight. A lot of people traveled from a far to be there, and we truly appreciate the effort! One huge surprise of the evening was an extremely generous donation from my sisters friends (family) from her work, Service Ontario. They got together and donated $2,000 to Hayden, and we were blown away. Thanks to all of Jodie's friends for thinking of our sweet Hayden, and for rallying together to help make life a little less stressful for us!! "Amazing people" is really all I can say about them and my sister is truly lucky to have them in her life.  Also - just wanted to say one more big thank you to her friend Rich. He kindly donated $500 to Hayden for a "Fun Fund" and wrote the most touching card to her. His niece beat Leukemia, and is now doing some pretty amazing things in her life. Rich, your words in that card gave Jon and I both hope, and I know down the road when Hayden can understand this all.. she will appreciate your kind heart as well. When we get the word from the doctor, we will absolutely use that "Fun Fund" as it was intended! I also want to give a huge shout out to a dear friend that I FINALLY got to meet face to face that weekend, Naomi McCulloch. She is a teacher at a small town school called Minto Clifford Public School, and has a "Me2We" group that she oversees. The students that are apart of this group kindly all made cards of encouragement for Hayden. I've read every single card, and they all put smiles on my face and when Hayden can read I know she will have a big smile too. You are amazing kids for doing that for our little beauty, and I want you to all know that your thoughtfulness and big hearts will never be forgotten.  Thank you Naomi, you also have a huge heart.. and it's not hard to see that your little boy, Tavis, will follow in your foot steps and do great things. He has already sent Hayden a get well gift, and also a Valentine. A pretty special boy indeed.
This past weekend was Miss H's 2nd birthday, and I must say that she had a pretty amazing day! Our amazing families came down to help us celebrate], and I have to say she was spoiled ROTTEN! She got some pretty amazing gifts, lots of birthday hugs, and LOTS of happy birthday's via Facebook! When we left clinic on friday we knew that her counts were WAY down from the week prior (the chemo that she was getting did that as planned),  so everyone that attended kindly made sure they sanitized their hands for us, in hopes that all the bad germs stayed away! We had a HUGE birthday cake that was given to us from our dear friend Kaylee, and everyone brought some munchies and good laughs! I'd say all in all her birthday party was a success!! We got some great news the day before her party too.. Hayden's going to have a baby cousin come Labour Day!! Congrats again to Uncle Cody and Aunt Leah!!!   Also, Hayden also received her very first pet for her birthday.. a beta fish named Kelly Gruber from aunt Jodie.   The name came to us because my mom kept calling Mr. Grouper (from bubble guppies..she thought that would be a good name for him I guess) Mr. Gruber.. and I asked if she meant Kelly Gruber.. she got confused, but my sister insisted the name of the fish be Kelly Gruber!  We hope he sticks around for a while.. but just in case he doesn't.. any suggestions for names of future fish are greatly appreciated, because we clearly have issues naming them!
It's hard to believe Hayden is 2.  How do 2 years go by so damn fast?? I already think that in a day she has grown so much.. if that's possible.  One pretty cool thing about her birthday is that she shares it with Dr. Seuss (as well as others.. like Bon Jovi!!).. and last year on her birthday cake Kaylee wrote a quote on it for us. Its a quote that I want Hayden to always remember -

" Today you are You, that is truer than true. There is no one alive who is Youer than You ". 

There is one more quote that Dr. Seuss wrote that came to us from the MCPS Me2We group that I also think applies to Hayden -

"I've heard there are troubles of more then one kind,
 some come from ahead and some come from behind.
 But i've bought a big bat, i'm all ready you see,
 Now my troubles are going to have troubles with me."

 Thanks again, for taking the time to read this blog! I will update it when there are new things happening in her treatment.. or something needs to be said! Otherwise I won't bore you when there isn't anything to report!
Last but not least.. didn't Ellen kill it at the Oscars last night? I love her and will one day meet her! And i'd be lying if I didn't say i'm trying to push Hayden to use her "wish" to go meet Auntie Ellen!! haha! Don't worry.. She will make her decision when she's ready too.. but there is no harm in giving her options!
Have a great night everyone! xo

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.)

So greatful for the good people in the world!

So tomorrow we will have been back in the hospital for a week. Hayden and I have been in our room for almost 7 days straight with very minimal fights, but lots of laughs! I'm starting to realize this is our temporary reality for the next little while, and that this won't be the last time being admitted in.
Unfortunately due to weather we've had minimal visitors - but my aunt Brenda and cousin Ryan stopped in last week to say hi after his visit with a surgeon. Ryan races horses (rather well might I add), and had a pretty unfortunate accident during a race that broke 2 bones in his write and one in his elbow. I'm crossing my fingers that he doesn't have to have surgery, so he can heal up quicker and get back on the horse.. haha.. well, back on the cart :-)
Hayden has had some pretty horrible sleeps lately. It breaks my heart hearing her cry during her vitals at any time of day, but it's so much worse at night when they have to wake her up to do it! Why does it have to hurt so darn much?? It hurts a normal adult having it done, imagine what it feels like for a 22 month old who has to have it done 5 times a day! She's so puffy because of her drugs and IV that once they are done there's always an indent on her leg or arm :-( I think we have realized that if we bribe her with the right food (goldfish crackers), put on netflix (bubble guppies), and just don't touch her.. she might relax a bit.
So we were told when we came in here that we could be here for a week or two.. of course depending on her blood levels. Everything so far is on the rise! They wanted her neutrophils to be .5 before we can go home, and today they were at .6! So i'm doing some serious finger crossing that tomorrow one of the doctors will come in and say "Take your sweet girl home!".
This coming friday the Mount Forest Patriots start their first play off game, and they are having a benefit night for Hayden too! My heart was so big when I heard they were doing this for her!! I'm so hoping that I can attend too!! My heart has never left Mount Forest, even after all these years. It's so cliche to say, but there's really no place like home. I also know Jon would say the exact same thing about Wallaceburg. You never forget where your roots are, and we are truly lucky enough to be from 2 amazing towns, and got to ended up in one amazing city!
Yesterday Hayden was relaxing in her crib, and I was doing a crossword in people magazine.. when a knock came to the door! I had a heads up that a friend of a friend might be stopping by to say hello, and to wish Hayden well. I opened the door, and in this gentleman's hand was a big gift basket full of Mickey Mouse dolls and Bubble Guppies toys, and as soon as Hayden saw her present she grinned from ear to ear, and let out a giggle that I haven't heard in over a month! To our new friend Andrew.. You have no idea what your kind gesture meant to Hayden. Hearing and seeing how excited she was made both of our day. You are one of the kindest people we have ever had the priviledge to know, and I'm so happy to have had the chance to meet you. Thank you for putting a smile on our beautiful girls face.. and for reminding us that even complete strangers have big hearts too.
So i'm going to end it here.. I said I was going to post a picture of our sweet girl from 3 weeks ago and of her today.. it's amazing how fast the drugs work! We were told the steroid would cause hunger and rage.. and of course lots of puffiness.. and through it all.. she's still pretty perfect to me :-) Oh, and I cut a curl off of her tonight. I don't know what her hair will look like when it starts to grow back in, and after seeing how quickly her hair is coming out.. I needed a keepsake. It's in a sealed envelope, and will be in her baby book as soon as we get home!!
Sweet dream to all.. and please cross your fingers for us that tomorrow night we sleep in our own beds!! Good night! xoxo

Back to the hospital we go!

So on Tuesday morning when Hayden woke up, I noticed she seemed a little more "blah" then normal but figured going through Leukemia treatments she was entitled to have a blah day every now and then. She snuggled on my lap for majority of the morning and didn't want to be put down, so I started to get a feeling that something was up. I checked her temperature and it was 37.1, which is the higest its been at home up until that point. I didn't panic because it wasn't to the point yet where I needed to call our nurse case manager Julie, so I decided that maybe it was that temperature because we were snuggled under her blanket.  I asked her if she wanted to go have a nap, she said yes! So I took her to lay down and about 30 mins later I could still hear her in the monitor, but her breathing was kinda getting quick so I thought i'd go check her temp again, this time it was 37.6 so I tried my hands at paging Julie to see what she thought. Of course, I suck at paging her because it didn't work. So when I called her about 30 mins later she asked me to check her again and her temp was 38.0 - panic was starting to set it.
We were instructed to bring her in to have her checked out. I was so angry because she hadn't even been home for a full week yet, and here we were bringing her back up to the hospital!
As soon as we got here, they immediately put her on 2 antibiotics. When they checked her temp it was 38.3, so there was definitely something going on. They have done numerous tests, an abdominal and chest x-ray, and what they have so far come up with is that she had a common cold. I'm not even kidding - a cold brought us in.  I quarantined that kid to the best of my abilities, and she still caught a cold!! The doctor said she may have still had traces of it when we left last time, but who really knows where she caught it from.  So I have officially jumped ship to team "yay for summer!". This cold and flu season is a real pain in the arse for someone who literally has no immune system!
They also thought that she may have had a UTI, but whatever was in her urine sample has somehow disappeared! She's also extremely backed up, so they have her on a laxative to hopefully get her moving and make her a little less uncomfortable!
All of her blood work came back negative (yay), and none of her culture samples grew anything (yay), so they have to finish the antibiotics because we can go home. Her counts are on the rise too, so they were very happy with how she's doing.  My guess is we will be here all weekend .. boo! But hey, i'm kinda getting used to this place :-)  I actually counted, and we have slept more days in the hospital this year then we have in our own beds.. ugh. Oh well! I'm just going to have to start figuring out a trick to making the hospital couch/bed a little more comfy!
Hayden got her bravery beads today too! Each time kids come in for a treatment of some type, no matter the situation, they can get a bead for a necklace! She officially has 9 beads so far! What a great idea for a keep sake of everything she has to go through! She gets a bead for a poke of a needle, or a round of chemo, or an x-ray.. you get the idea!
Hayden has gained a whole bunch of weight (no number to be exact), and went from being my skinny mini 2 weeks ago, to being my beautiful plump sweetheart! I'm not kidding.. the steroid has made her face very chubby and her belly very round.. and it's only going to get bigger while she's on the steroid (which is only a few more weeks).  She's also pulling her hair out, and continuing to give me daily panic attacks because of it. I don't think i'm ever going to get used to that until it's all out. They said alot of other moms have cut their kids hair off so it can't upset them so much (the mom that is), but I can't do that.. i'd cry the whole time!
She still battles her nurses daily when they check her vitals, she points at her food constantly, has melt downs almost hourly, but she still continues to make me smile from ear to ear. I'm so proud of Hayden for having to deal with all of this, but she's dealing with it all extremely well!
I want to give a huge thank you to a few people..
To my dear friends and family who purchased and are selling bracelets (there are too many people to list here, but you know who you are) for #goteamhayden, to my Sister in law Brianne for organizing the design and sales of t-shirts, to the Mount Forest Patriots executive (especially Michelle Matheson, Patty and Rick Sinnamon, and Pamela Zmija) for having a benefit night for Hayden on Feb 1st as they start their playoff rounds, to Mark and Andrea McGonigle and staff at Fitzrays restaurant in London for having a benefit for Hayden on Feb 16th, to the RBC bank in wallaceburg for setting up a donation jar for Hayden, to all of the people who have donated generously to us, to all of the people who have showered our little girl with the sweetest gifts, to all of the people who have donated blood and got their flu shots so they can be around Hayden safely, to those who have visited us at the hospital and home,  to the constant support and prayers being sent daily for our Miss H.. I know I have thanked you all many times, and will continue to do so throughout this.. but we truly feel blessed to have you all on Hayden's side during this rollercoaster ride, it's only been 2.5 weeks and already we feel extremely blessed, so we thank you all!!  Don't stop praying for this sweet girl.. the power of positive vibes and prayers do wonders for Hayden :-)
I don't have any recent pictures to share with you today, but I promise to have one in the next blog. Maybe I'll do a side by side picture of when I had her in emerge when this all started, to a recent picture of her.. you'll be amazed at what the steroids do to a toddler!!
Have a great night everyone! Thanks for continuing to follow our journey!
xo