Thursday, 9 October 2014
Well, it's 1:30am and i'm not sure if it's because of the nap I had earlier today, the tea I had while watching Grey's Anatomy from last week that was pvr'd, or the million thoughts going through my head tonight.. but i'm wide awake.. so it's blog time!
After a 3 week wait.. we were finally serenaded by our awesome nurse case manager doing the "Welcome to Maintenance!!" dance last week! Going into Friday's treatment I was under the assumption that her neutrophils were likely going to be low still since just a week before they were only at 0.2.. but Hayden proved us wrong.. she was at 1.1 neuts, and we were finally in Maintenance. My heart was just about ready to jump out of my chest! Our nurses were cheering and dancing in excitement for her, it seemed that anywhere we went in the PMDU someone was congratulating us on reaching maintenance. I'm so excited for her, for us, for everyone that loves this kid. All anyone wants for Hayden is a normal happy life.. and she is on her way.
Some people may not know what maintenance means.. and might also wonder how being in maintenance (still technically getting treatment!) could potentially give us the feeling of a normal life again. Well, it means that Hayden now only has to go for in patient treatments once a month! She will still be getting at home medications given by yours truly, and most of them will be until she's done treatment... but at least we are home more then we are at the hospital! We were told her end of treatment date will be May 2016.. yay!
Oh - and another perk of reaching maintenance .. her hair is starting to grow back! I'm a little too excited about this. I joke that i'm going to try putting pigtails in her hair soon!! It's blonde.. and soft.. and perfect.
Maintenance also means that I don't have to bubble wrap her anymore - well as much.. who am I kidding.. i'm still going to bubble wrap her.. likely for the rest of her life! She gets to return to her amazing babysitters in the next few months, which i'm so excited for.. and she can even get the flu shot to hopefully help her out a little bit during cold and flu season! There's never a full guarantee that it will help 100%.. but any extra help to keep her healthy and out of the hospital - we will gladly accept! Of course I have lots of fears about trying to live a little more normal now. Hayden's immunizations have been suppressed because of chemo therapy.. so I fear her getting illnesses like chicken pox, which can be quite difficult for kids going through cancer treatment to fight on their own and will more then likely be hospitalized for treatment! We were told that most kids have immunizations these days so not to worry too much. When Hayden is completely done treatment she basically starts from scratch and will get them all over again.
With this upcoming weekend being thanksgiving.. I thought i'd do the obvious and write what i'm thankful for!
I've realized over that past 9 month that i'm extremely thankful for so many people in our life.. people who I probably don't tell often.. and maybe people who I tell quite often! This could be lengthy.. and like I said.. i've had caffeine so I could ramble all night if I had too!
I'm thankful for Dr. Forward at Victoria Hospital Emerge, for noticing something wasn't quite right with Hayden beyond what I thought (and still to this day wish) was just an ear infection when I took her in back in January.. she did her job well that night.
I'm thankful for the amazing pediatric oncologists at Children's Hospital that have given, and continue to give, so much care to our sweet Hayden. Each and every one of them has a huge spot in our hearts for doing what they do every day. It can't be an easy job to go to every day.. and I truly believe that they are angels on earth! Dr. Zorzi is Hayden's primary doctor, and she has been truly amazing to all of us over the last 9 months. She knows what to say at all the right times, and let me tell you.. dealing with a neurotic mom like myself is no simple task .. but she does it and does it well! We are most thankful for you Dr. Zorzi :-)
I am thankful for our amazing nurse case manager Julie. She keeps on top of everything for us, deals with my crazy questions, is a shoulder to cry on, and always keeps me laughing everytime we talk. On the day we first left the hospital to come home after diagnosis, Julie sat with me while Hayden napped and let me cry to her. I was scared and still didn’t know what was about to happen in our lives.. she gave me a big hug and from that moment I knew she was brought into our lives for a reason. She is a special person, and I’m so thankful to have her in my life.
I'm thankful for all of the nurses that we've seen.. whether its in the day unit or on the 6th floor. I honestly think that nurses don't get enough credit for what they do. They play with Hayden to make her more comfortable when she has to stay for a few nights due to a fever. They tolerate and smile at a crying kid that just doesn't want anything to do with them anymore. They do things I wouldn't dream of doing.. because its their job to do it. They have so much love for all of the kids that are seen by them.. and I have loads of admiration for them. They truly are super heroes in disguise.
I'm thankful for Child life - they constantly play with Hayden and provide toys, coloring books, movies, and lots of laughs to the kids. Melissa is our Child life rep, and she does her job extremely well! She blows bubbles through the screams while Hayden gets her port accessed, she plays restaurant with Hayden while her vitals are getting taken, she draws pictures with her in the play room while me and the doctors are discussing new phases, and she bangs on a drum singing "we will rock you" while Hayden bangs 2 sticks together because it makes Hayden happy regardless of how silly she looks doing so. I'm so thankful for Melissa and all of the girls in the Childlife department.
I'm thankful for our parents - who have offered so much love and support over the last 9 months to last a lifetime. They have cried with us, and laughed with us.. but most importantly they have stood beside us keeping us strong when nothing seemed to go right. They have never once allowed us to believe that the end of this journey will be anything but a victory. The love they have for us, and of course Hayden, is amazing and truly appreciated beyond words.
I'm thankful for the amazing siblings we were given, and the amazing support they also have shown us. My sister, Jodie, is the one that started the #goteamhayden facebook page and updates you all as often as she can. She reminds me as often as needed that when set backs happen to Hayden, they aren’t forever and that better days are ahead. When Hayden was going through her Erwinia phase, I would call her or face time her crying because my heart was broken. She reminded me that this is all apart of chemotherapy and that this is just apart of what is going to make Hayden so much stronger in the end. I’m so lucky to have her for a sister. I’m thankful for my sister in law Brianne, who spearheaded the #goteamhayden t-shirts, with help from my father in law Remi and countless others. Brianne also gave me the idea of writing a blog - which I didn't think I could do.. but she promised me that it would be therapeutic.. and she’s right.. it has helped me through some rough nights by allowing myself to pour my heart out on here for whomever wants to read it! I'm thankful for my sister in law Stacey, who secretly ordered Hayden 2 new Teddy bears from Vancouver because she's just that amazing. I was going to leave it a mystery to everyone.. but I truly think that people should give credit where credit is due, and what she did for us.. and anyone following the whole "Ted's arm fell off fiasco" helped remind us that we aren't in any way, shape or form alone in this journey.. and that our family has our back 110% of the way. I got nosey one afternoon and called the company that mailed the bears, and of course they ratted her out. As soon as I heard her name I had tears in my eyes. She did something so selfless for Hayden, and put huge smiles on our faces.
I’m thankful for our extended family who have offered us so much love and support during this journey. From all of the hospital visits, to home cooked meals, a laugh when needed or a shoulder to cry on. We love you all so much and are so thankful for you all.
I'm thankful for my awesome friends that continue to make me laugh and smile daily, whether it be on facebook, by text, or by phone.. or if i'm lucky enough.. in person. They ask how Hayden's doing and genuinely care about all of us.. but also know when I just want to be me and not talk about what's going on in our life for a change. They organized the #goteamhayden bracelets that are being sold as soon as they had heard that Hayden was diagnosed. I hope they know that I would do anything for them, and love them all so much.
I’m thankful for my husband who has been a rock for me through out all of this. He is such a good father to Hayden. I wish you could all see the smile on her face that lights up a room as soon as he gets home from work. He juggles a lot of stress in his life, and asks for so little in return.. and I’m sure that hearing Hayden yell “DADDY!!” as he walks through the front door helps lessen those stresses. It hasn’t been an easy year for all of us.. but somehow he just keeps pushing through and leads us along with him.
I am thankful for all of you. I am thankful for the prayers, positive vibes, assistance, love, and amazing energy that all of you send us on a daily basis. We have people following Hayden's story from all over and it melts my heart daily seeing messages from people we have never once met that just wants this little girl to get better. We are from 2 amazing towns that have offered so much support to us even though we aren’t currently living in our hometowns. You never forget where you come from.. it defines who you are and the person you become. I still get goosebumps everytime I drive into Mount Forest and see the water tower, and I know Jon is the same way when he drives into Wallaceburg. Home is truly the best place to be.
And last but not least – I am thankful for the sweet girl that calls me mom. Hayden has been through complete crap over the last 9 months, yet somehow still manages to wake up with a smile on her face asking for bubble guppies and a banana (or 2) for breakfast. Watching her learn new words, and seeing her counting and using her fingers to count, chasing our cats up and down the hallways, seeing her laugh at something Toopy and Binoo have done, and seeing her grow into such a beautiful little girl makes every bad or sad moment seem so small. She has had to give up so much over the last 9 months and doesn’t even know it. She hasn’t been able to be around her friends at the daycare, she hasn’t been able to see much of her cousins because of low counts or sicknesses, she hasn’t been able to have a sit down dinner in a restaurant with us, she doesn’t get to go grocery shopping with me, she isn’t able to take swimming lessons or dance lessons yet, she doesn’t get to do more then half of the things other healthy kids get to do. She has had so many limits put on her that I hope one day she breaks all barriers and lives her life beyond the best of her abilities. I am so thankful for Hayden. I love her beyond words.
We hope everyone has a safe and wonderful Thanksgiving weekend with their family. Be thankful for your family, friends, and your health.
I'll write again shortly.. xo