I'm dedicating this blog to one of the kindest, sweetest, and most special little lady.. who is 9 years old and looks forward to reading about Hayden as often as I can post (I promise to write more often!!). She's also the daughter of our beautiful friend Tracy, who I have mentioned in past posts - she dressed as a lion on an extremely hot day and made amazing posters for Go Team Hayden at the relay for life...and she also does my hair all purdy.. She pretty much rocks :-)
Hayden has been doing EXTREMELY well in the last few weeks! She has had low blood counts, but you wouldn't have been able to tell! She's running around being the monkey that she is, and always has a smile on her face or a giggle that will brighten up any room.
Recently there was a wonderful event at the Clinton Raceway that was in support of ChildCan - an organization that has provided many families, including us, with parking passes and food vouchers.. and they also help families going through Childhood Cancer with household bills if needed - among many other generous offerings. We were lucky enough to attend the event.. especially with Hayden's counts so low.. but, one of the main reasons it was so special to us was because my cousin Ryan was one of the drivers in the event and he got to wear his Go Team Hayden t-shirt over his racing colors.. which is a pretty big deal, and he needed the approval of the judges in order to do so! Although he didn't technically get a win that day, he did win the heart of our little Hayden!! She LOVED cheering him on.. and i'm sure you could hear "GO GO GO!!" miles away!! Hayden hasn't had many outings in the last 9 months, and getting to see her smile as she picked flowers or threw stones.. or like I said.. cheered the horses on.. will be enough to make my heart content for a long long time. Thank you to Uncle Ryan and the other 7 racers who donated their winnings that day to ChildCan. I believe they raised $10,000 that day!!
Here are a few pictures from the day:
Playing with aunt Jodie's umbrella! This was actually used to shade Hayden and Aunt Leah who is just about ready to pop out a baby!!!! |
Hayden and uncle Ryan watching the horses in between his races :-) |
The drivers all came out for a picture with the childcan kids that were in attendance! Hayden, Ted, and Uncle Ry! |
She looks so tiny with the big guys!! |
The kiddo's and the hero's for the day!!! A great group a guys if I do say so!! |
"GO GO GO GO GO!!!!" |
Auntie Brenda was pretty awesome that day with Hayden!! She took Hayden all over the place and kept her busy! I know she loved it, but I think Hayden loved it the most! |
There's uncle Ryan warming up with his Go Team Hayden t-shirt on! Pretty darn awesome if I do say so myself :-) |
So tomorrow.. Friday.. Hayden starts on the dreaded "Erwinia" again. For those of you that are unfamiliar with Erwinia... it's the horrible chemo that makes her feel icky and nauseous. She gets a treatment friday, sunday, and tuesday of this weekend and next. Once Erwinia is over she gets one more friday treatment of a chemo called Vincristine.. and then we wait for her counts to come up so we can enter MAINTENANCE!! Once we reach maintenance (phase 5) she only goes once a month for in clinic treatments until she is all done her protocol! She will still have at home chemo's.. generally before bedtime.. but at least we aren't spending majority of our time at the hospital anymore! Please send positive vibes, love, and prayers during the tough erwinia phase, and lots of luck that her counts will get high enough (sooner then later) to reach maintenance!!
Also - in case some of you don't know, September is Childhood Cancer awareness month! If you have a gold ribbon - wear it proud to show your support!
On a side note - I read this on facebook and wanted to share it with you all. I can't take any credit for it what so ever, but I sure wish that I had of read this a heck of a lot sooner, and will likely (in the next 15 or 16 months) check back to read this again and again. This is letter that a mother wrote to other "new cancer moms". Her son also went through Leukemia treatments.
September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Pauline Grady
I’ve been thinking a lot lately. I’ve come to a point in this journey that I am feeling a little lost. It’s a common issue. Sam is almost done with treatment, but where does this leave me? Where does this leave a woman, a mother who worked full time prior to her son getting sick?
I started thinking about the different emotions I have felt since the beginning. How lost I was, how much I felt that I had found a side of myself that I never knew existed and how I am now feeling lost again. Lost, found, lost. It is amplified when I meet the newer moms. A common phrase I hear when I meet the new moms is “I don’t know how I am going to do this.” Usually I only have a few minutes to talk to the new moms so my answer is usually “you get through it because you have to get through it, and you will.” I’ve been told that numerous times when I was sure I couldn’t “get through it” and I’m sure I will continue to hear those words.
As we get closer to Sam’s last chemo visit, Sam’s last chemo pills, Sam’s last steroid pulse, I think about what I would say if I had the time to sit down and talk for a few hours with the newer moms.By Pauline Grady
I’ve been thinking a lot lately. I’ve come to a point in this journey that I am feeling a little lost. It’s a common issue. Sam is almost done with treatment, but where does this leave me? Where does this leave a woman, a mother who worked full time prior to her son getting sick?
I started thinking about the different emotions I have felt since the beginning. How lost I was, how much I felt that I had found a side of myself that I never knew existed and how I am now feeling lost again. Lost, found, lost. It is amplified when I meet the newer moms. A common phrase I hear when I meet the new moms is “I don’t know how I am going to do this.” Usually I only have a few minutes to talk to the new moms so my answer is usually “you get through it because you have to get through it, and you will.” I’ve been told that numerous times when I was sure I couldn’t “get through it” and I’m sure I will continue to hear those words.
**********
Dear New Cancer Mom,I’m sorry. I am sorry that you are part of this group. I am sorry you now have the title of cancer mom. Your life has changed. In one split second your world just fell apart. Allow yourself to cry, it will make you feel better. Allow yourself to kick and scream and have a tantrum, let it take all your energy, because there are somedays that crying is all you can do for the day. The fog will lift, I promise. The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing, it will go away. In place of that, you will look at people that are constantly unhappy with their lives and remind them of how precious life is.
Stay positive, things do get better, but be a realist too. Don’t allow people to make you think that your anxiety and worry is not justified. It is. Your child was diagnosed with cancer. It’s a very scary world to be placed in. Watching your child go through this and watching other children, it’s not something you wish upon anyone….but when you witness your own child and all the other children continually fighting, well….it will change your life.
Document your journey. Whether it be a journal, a blog, pictures, videos. Document it. People may ask “why would you want to document this part of your life.” It’s a reminder my friends, a reminder of the battle. Write your child a letter at different times of their treatment so they see the battle in your eyes, as a mom.
There are people that will support you the entire time, and others that just can’t keep up, that are tired of altering their life to accomodate you. Those are the ones who don’t understantd. There is no need for you to explain, so don’t. You have a sick child, there is no explanation needed. Move forward and don’t hate them for it. It’s just a reminder of how difficult this life is and that some people chose to step back when things get to rough.
If you have a spouse, spend time with them alone as much as possible, go out on dates when you are able to and take a nap when the opportunity is there. Don’t complain to much about the little things, it’s not worth it. Pay it forward, there are many, many people that will help you. Some people that you don’t even know.
Swallow your pride and ask for help when needed. Surround yourself with people that understand and know what you are going through. No matter how much others claim to know what you are going through, they don’t. Perhaps they sympathize with us, but they can never empathize.
If the opportunity arises, take sometime for yourself. Even if it’s a ride in the car by yourself, do it. Don’t feel guilty. You are giving 110% of yourself to help save your child. The worrying, anxiety and lack of sleep is overwhelmingly exhausting. If there is anything that has caught me off guard this entire 3 years is the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.
Regardless of the type of cancer, the battle is long and difficult. Regardless of what others say, this will be a part of your life forever. Once a Cancer Mom, always a Cancer Mom. Hang in there. Keep moving forward. Head up, chin up. #onward
Sincerely,
A Cancer Mom
I hope this blog finds everyone well. I hope you are enjoying the nice weather we are finally getting, and I hope all of your kiddos (if you have kiddos) are enjoying being back at school! By the next time I write a blog, my baby cousin Leah will be a new mommy too! Can't wait to meet baby Darroch and give loads and loads of love to him or her! Hayden can't wait to have someone other then mommy and daddy to boss around!! :-)
Until next time.. :-)
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