Author: Mardon Hickford

Jake had some minor surgery yesterday and is doing great! The chemo has not been kind to his teeth (think I’ve mentioned this) and we had to fix them before Stem Cell. We will eventually get there so had to be sure this was checked off the list. We are hoping that the chemo is eating away at his bone disease and marrow the way it is eating away at his teeth. His next round of chemo is scheduled to begin Monday. He’ll be on the pole for a week and it’s the same drugs as last time. He’s been out of treatment for five weeks now. This

chemotherapy combo was a doozy and his counts just aren’t recovering like they have. This week has been the first time I’ve felt some confusion and concern from his team. We’ve been on, off, on, off, all over the place trying to figure out his counts and how/when to get him back on track with his next treatment. The good part of having this time is that he has had some really happy days and is eating like crazy! He’s had lots of energy (and transfusions to help with that) but it’s been too long and we don’t want anything growing that shouldn’t. Speaking of transfusions… we have a new fave place! As we leave the med-center, we’ve been stopping in for ice cream at Ben & Jerry’s. It IS summer after all. Jake also made it to his first baseball game and LOVED it. He’s asked all week when he can go back again. And we’ve been heading to the park at dusk, when it’s vacant. Strange tid bit… mosquitos don’t like Jake. They swarm us, but not a bite on him! This morning I found some pictures from this time last summer. My initial feeling was sadness at the innocence lost and how physically different he looks now. It’s not just his hair, but his facial features and his body. His weight has yo-yo’d so much this year that sometimes he looks like a little old man. But then it hit me… we have him here, we’ve had TIME and lots of new memories. Many of them have been hard and painful but so many more of them have been full of joy and love. We’ve witnessed God’s strength through Jake’s perseverance and his ability to bounce back time and again… and for that I can’t help but be thankful. This song has come on a couple of times this morning so it must be a sign, reminding me to trust and praise Him in all we’ve been through so far… to praise Him in the rain. http://www.youtube.com/watch?v=GIFOPWHjA6c by Mercy Me. I love all of the artwork that accompanies this video, hope you like it! It’s been a really tough week in our cancer

world and lots of tears. Please pray for the families of Will, Bridgette, Talia, and Abigail. Three of them fought Neuroblastoma, they were all FIGHTERS till the end. In my humanness, I can’t help but believe that in the midst of celebration in the Heavens, there had to be a bit of sadness at how many little ones walked through those gates.

“God who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain.” C.S. Lewis

First piece of business… Jake didn’t make counts for this week’s chemo admission. In fact, he lost ground for some reason. Last week his ANC was in the 900’s – not great but fine. Today, he’s neutrapenic again at 480, even his platelets took a dip. Strange, but we’ll head to clinic again Thursday and shoot for chemo next Monday.

Now for some important stuff (in my mind anyway – grins!) Thought I’d put a shout out on something near and dear to our hearts… September is Childhood Cancer Awareness. I know, it’s only July but it will be here soon! We all know how fast these last few weeks of summer go and then BOOM! Fall is here, we’re back into our school routines, little leagues, even holiday preps. The thing is that everyone knows what the pink ribbon signifies. It is a huge and needed accomplishment for breast cancer. But very few people know what the gold ribbon represents. We NEED to change that! There is a movement throughout the childhood cancer community to turn September GOLD! Everything from the White House, to the NFL/MLB to all of the community centers, libraries, police stations, neighborhood club houses, bridges, businesses, restaurants, little leagues, everything that illuminates, everywhere that people gather, big and small. Change out light bulbs, organizations and sports teams wear ribbons, hang a gold cancer ribbon flag, post something on your work, church, neighborhood marquees… get the word out! Now is the time to make plans, September will be too late. I’m sure my FB page sounds like a broken record. There are probably quite a few people who are tired of seeing Gold in September posts, I can’t stop. It’s important. And since many people read this site that aren’t on my FB, I must share here too. My son’s life and all of these kids, are special and deserve to be seen as the GOLD that they are! So here’s a link to a petition to let the NFL/MLB know that we want, WE NEED their support. They wear PINK in October, why not GOLD in September? Millions of people tune in each week and their help would bring such awareness. Here is the link to just one of the petitions http://www.change.org/petitions/nfl-mlb-wear-gold-for-september-for-childhood-cancer-awareness-month

I also ask that if you know of anyone, please do what you can. Just ask! Some are planning gold uniform socks, little ribbons for the attendees in the stands, painted gold ribbon tattoos on arms and helmets. It’s not just about the big venues, it’s very much grassroots, right here in our backyards. Ask your neighborhood club house, your kid’s soccer, football, baseball and cheer teams. Ask your business if they will consider something on their webpage, their marquee, something outside of their business – like light bulbs or a flag. We have our yard flag ready thanks to Angels Making A Difference. (If you’d like one too, here’s the link http://www.angelsmakingadifference.com/product/misc/childhood-cancer-awareness-garden-flag/ ) NOTHING is too small and our kids like being involved, their little hearts and ideas are so much bigger than we realize. Let them run with their ideas and ask people they know too. Another thing I’d like to share is ProJeKT 3000. This young man is biking 3000 miles across country this summer to raise awareness for pediatric cancer and raise $15000 for childhood cancer research… his personal specialty is Neuroblastoma (which certainly brings him near and dear to us). He’s riding strong, visiting local hospitals, and sharing real kid’s stories with everyone he meets along the way. … Less that $5200 has come in and his ride ends July 12th. This is the sad reality of childhood cancer fundraising and why there is so little funding for research. Navid packed up his bike with water, camping gear, photo equipment, everything he would need – it’s heavy and cumbersome but he’s doing it… even through the deserts of AZ and the fires of CO, rain, heat, and rocks to the head by passing truckers. It has been a remarkable thing to watch his daily trials of joy and difficulty, physical pain and personal triumph. Here is the FB page and website https://www.facebook.com/ProJeKt3K?fref=ts . He has posted a handful of videos along the way and here is one he put together one night while resting that honors our little fighters and includes Jake. https://www.facebook.com/ProJeKt3K/app_57675755167 Last week, he asked for those following him, if so moved, to give up one fast food meal for the week, just $5. Please consider giving up one of your lunches this week and sponsor this cause! It will make a difference! It will go to the right place!

Today was the first day in weeks that Jake did NOT need his port accessed! Thanking God for this day! They don’t come often but when they do, RELIEF! His little chest port is so riddled with needle pokes but today it got a break! It’s been a month since his last chemotherapy and he’s needed transfusions every time we go in for Clinic (that equates to 2-3 transfusions a week BTW). Today he didn’t need one. His ANC isn’t great but counts are trending up… HIGH FIVE (or three)! We’ll soon knock them to the ground again but at least we have a few days of him feeling really good before we sock it to him with his next round of chemo. When Shelly came over to tell me “you don’t need to stay

for lunch” – joke – I bet my “YES!!” could be heard across the infusion room. I was starting to second guess my decision to venipuncture him since his little arms are tracked up as bad as his port but in the end, God winked BIG TIME, and we left early today! As for July 4th, it was full of fire crackers and laughter! Couldn’t ask for a better night. And I have pics to share! I also have a few other photos. The other day, Mommy had a full blown, could not function, allergy attack, so Jake went to Mrs. Sarah’s to make homemade ice cream. Jake and Maddi are so cute together. When he’s at home, he’s the boss. No doubt. But when he’s at Maddi’s… not so much. And he doesn’t seem to mind. (BIG grins.) That says a lot!

Also today, I got some text pictures from one of my best girlfriends, Kristel. Seems they were having a Lemonade Stand in Jake’s honor. Take a look! They are the prettiest, kindest, funnest, (yes, funnest!), most generous young ladies. I hear it was Samantha’s sweet idea! Samantha, Kiersten, Emma, Sydney, Kaitlin and Julia, I just want to kiss and hug all over you! And Kiersten, Jake has not forgotten about your dino date – he’s counting on it very soon.

So, there it is! It was a GOOD DAY, which concluded in a little Ben & Jerry’s as we left the med center and as my friend, Phil Robertson says (wink, wink), that made us “Happy, Happy, Happy!”. Nite Y’all!