The founder and his 6 year old son started Spokelet (which you can read about on their site). His son passed away last year of Neuroblastoma cancer after battling it for 2 ½ years.
You can check out the site here: SPOKELET
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
You can check out the site here: SPOKELET
Happy Valentine’s Day everyone.
I want to thank a lot of people – so many to thank and only so much time for me to write out thank you cards. So I thought I’d post a bit of my thank you notes here:
My parents – of course, for talking me into convincing my husband to move to MD and helping us out tremendously in the numerous dream projects we conjure up! Just a warning…..we’re still designing! Also for being there when I need you and for all the great Korean food! Yummy! Can’t wait to head to Florida this summer with you. Should be interesting! :)
Mom/Bev/Grandma Virginia & Grandpa Simon – they were our first victims – I mean family members – to get the full Fowler household of craziness. Thank you so much Mom for coming out and spending so much time with Haven. I know coloring and reading books for 12 hours a day can be tiring…no joke here people! My daughter will read and color without moving for 12 hours at a time. You’d never understand how sitting on your “buns” coloring can be so tiring. If you walk away she wants to know why you aren’t coloring with her. I’m proud to say with just a couple weeks of this she is able to say the ENTIRE alphabet, she can write half of the alphabet, she knows the alphabet when I sign it to her and we can now count to 10 and almost to 20. She is even writing words on her own such as – yellow and blue and red. I tell her the letter and she writes it. We definitely do NOT have an ADD problem – so I can say she does take after me a little! :) Sorry daddy.
Dad and Jeannie – as our 2nd set of family members to visit. Thank you for being here for Haven’s surgery and sitting in that depressing waiting room for us. I just couldn’t sit there and wait. And it was a long time – about 14 hours total of waiting!!! Longer than you had to wait for me to deliver her! :) Thank you also for continuing my daughter’s education of her letters, numbers, and reading. Next visit I’m sure we’ll be working on Calculus (as this is as far as I went in math)….after that she’s on her own! Again thank you.
I have to thank all of Haven’s doctors. They are all tremendous and have given her so much love and care.
1. Dr. Cooper – Best pediatrician ever – calls just to check up on Haven and has told her to come in just to visit and say HI anytime. Love her
2. Miss Dawn – she is Haven’s nurse at her pediatrician’s. She is so awesome. Haven just loves her and talks about her all the time. Thank you for the email Dawn – we’re hanging in there.
3. Dr. Cooke – he is Haven’s Endocrinologist. He has been there since her seizure and was the one that found the tumor and transferred us over to Oncology.
4. Dr. Paz-Priel and Dr. Baggett – Haven’s Oncologists. They have been great in organizing us and getting us ready for everything before it happens.
5. Dr. Price – he is Haven’s surgeon – absolutely wonderful man with amazing talents. We really love him.
6. Dr. Rich and Dr. Rob – Haven’s anesthesiologists! PERFECT – great guys – very funny – extreme way of making Haven feel very comfortable before going under!
7. Mr. Ron – lab technician who since the beginning of Haven trying to get IV’s he’s been there. He knows her and every time he finds out she’s in the hospital he comes to find her and see her. She really trusts him and likes him a lot. Great guy.
8. Mr. Mike – yes I loved him – he was awesome. This was Haven’s nurse in the ICU. He was absolutely great to her and all the other nurses were teasing him because Haven was constantly yelling “Mr. Mike”…over and over again! Thanks for taking care of our girl.
9. Miss Erin – Haven’s night time nurse in the ICU – she gave Haven her first bath and made her a “Queen” hat. She is the sweetest nurse ever and took excellent care of our girl.
My grandma and Aunt Candy – thank you both of you for sending Haven so many books and stickers and Hannah Montana things. She’s starting to get a bit spoiled – only starting! Can’t wait until you guys are out here. She’s gonna love it.
Aunt Dottie and the Grosse Pointe Woods Fire Department – thank you so much for all the fire hats and stickers and t-shirts you sent to her. The books are awesome. She’s had a ball with them. We thank you so much for caring.
All of our family members and extended family – which to list would take me about 3 days – there are so many of you. Thank you to family members we have never met – we feel your love. A few:
1. Aunt Gill and Uncle John
2. Grandma Bist – she’s turning 86 this weekend!!!!! Party on girl! Love you!
3. Aunt Martha, Uncle James, Phillip, Luke, and Lindy
4. Uncle Kevin
5. Aunt Katie, Uncle Tommy (in Iraq) and Baby Stryder
6. UB and AL
7. Aunt Wendy, Uncle Mike (in Iraq), Mike, Lena, and Kristanna
8. Aunt Goo
9. Aunt Louise and Carl
10. Aunt Martha's family - thank you for your care package to Haven
11. My sweetest cousin Erin – thanks for the notes on the internet – you make me laugh!
Thank you to all of our friends for the cards, gifts, emails, texts, phone calls, and well wishes
1. Mike and Tracy – come visit anytime! :)
2. Scott and Melissa – (hugs and kisses sent your way) thank for your help Scott with everything– Melissa enjoy those soon to be TWINS! J Scotty – can you even believe it all started in #2! Amazing! I actually used to cook then….
3. Mike – ( aka. Torq) - miss you! I miss the days of living with all you boys in UB and AL's cabin (shhhhh, they never knew!) Tell the boys HI! Bet UB and AL didn't know that cabin could sleep 15 people! :)
4. Hayley and Mike – I’m happy to have met your husband, made lots of fun of him, and convinced him to work for free because I finally got to meet you! Although it took 3 months of talking to him to meet his better half. You’re awesome Hayley!
5. Jeremy and Tabetha
6. Eddie and Namrita
7. Miss Tina! Love you and miss you so much girl! See you soon!
8. Kathy – loving you – thanks for the uplifting emails
9. Bowman
10. Cameryn
11. Ali and Brown Haven - love you two so much! Miss you
12. Mr. Minimo – still don’t like Canada! :)
And people I don’t even know…..i get texts and emails from so many people and there are quite a few that I don’t know that have met me or my husband or have hung out with us a million years ago.
Again…..A BIG THANK YOU to everyone who is, was, or will be a big part of my daughter’s life! It’s great to know there are so many people out there that love her and pray (no matter how that may be) for her. Your love and thoughts are very much appreciated.
Sincerely –
The Crazy Fowler’s
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...