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!

 

  It’s almost July 4th and it looks like we will actually be home for this holiday!!!!!  The kids are so excited.  They want FIREWORKS. That’s all they’ve talked about.  When they took labs yesterday, I was hoping Jake’s counts were on the rise so we could do something fun and non-isolated for the 4th but no luck, crowds or Kemah won’t be part of our party plans this 4th.  I think of where we were a year ago and where we are now and there are lots of different emotions. I remember vividly how much fun we had at Kemah last summer but then I also remember that as the night wore on Jake wanted to be held – his legs hurt. In hindsight those were little signs starting.   Then I think of how lucky we are to be right here, this year, WITH HIM, and it’s all OK – we’ll have sparklers and be thrilled.  I’ll be sure to get some pics!  It’s been a little while since I posted, just busy and sometimes my heart has to be in the right place.  It hasn’t been.  There has been a lot of loss and little friends just not doing well. To sit and write, means I have to try and process – for my mind to start circling like that there must be sense to be made, and there just isn’t any.  Another special little friend of Jake’s gained her angel wings this past week and it just hits so close to home.  Mackenzie, Zie, spent many, many days in the 9th floor playroom with Jake.  She was sweetly shy with this girly smile, always at the art table and just precious.  There are some other little friends that are struggling right now and we are praying hard for them, watching, waiting for them get stronger, to feel better, to play again.  It can weigh heavy on the soul.  For some good news, Jake’s friend Patrick is back from Dallas and he sailed thru MIBG with flying colors.  Seeing him and speaking to his parents has eased my mind considerably.  They shared pictures and it’s like something out of a sci-fi movie. I have to say that seeing Patrick with my own eyes was a huge help.  He looks GOOD, really, really good!  We are praying that his scans look even better!  Some fun news is that Baby Bull visited the infusion room yesterday and Jake was SO EXCITED!  He laced up the gloves and held the belt – he was all smiles!  Now for a day in the life for you… last week while in clinic, Jake left his blankie, aka blankedy. We were almost home, in the HOV actually, when he discovered this fact and fell apart.  AGH! There is NO WHERE to go in the HOV, except straight… further and further from blankedy.  I knew I had to go back.  What if the cleaning crew found it and put it somewhere? Or worse, what if they put it in the laundry?  In clinic, we use fresh sheets and blankets to cover the sofas and infusion recliners – it’s a “germ thing”, as to give extra protection for the kids.  What if they accidently threw it in with the sheets – we would NEVER see it again!  So, we drove back, in traffic (NO HOV going back into town).  We didn’t leave the infusion room till 5:30, so getting back into the med-center was not quick. The whole time I was praying!!  Mostly that we would find it but also that we could even get up to the 14 floor.  The Clinic side of TCH shuts the elevators down at 7pm. Even if it was where he left it, we might not be able to get to it.  We got there and started our “hunt” for an officer to get us back upstairs and who should come walking around the corner but one of our front desk angels that sign us in every day.  Man, were we happy to see her!  God wink!  She “badged” us up and low and behold it was right where he stashed it… in the microwave of the little play kitchen.  WHEW!  RELIEF!  Momma was almost in tears and Jake was ecstatic!  Last week was VBS for the kids.  Kate and Emma were able to be first year Crew Leaders and loved it!  It was hard for Jake to watch them leave each morning – he knew what he was missing. But we snuck up the back stairs at closing ceremonies one afternoon so he could see from the balcony – it made his week!!!  Our church puts on an amazing VBS program and this year they honored Jake and Grant (another one of our little friends and church families who is fighting Leukemia). We are so blessed by our church family! As for Jake and treatment, we are waiting for him to recover from the past round of chemo so we can start this eighth round.  This next chemotherapy will be a week long and the same drugs as last time, Topotecan and Cytoxen. These are considered “mop up” drugs and weren’t part of his original road map but are being used because he’s being categorized as “refractory” since his disease has shown some resistance to the usual NB treatment. We are in the planning stages but it does seem that Jake will not head into Stem Cell next. The doctors feel that MIBG will be best for him first. With everything we are learning and the severity of Stem Cell on the body and immune system, we are listening.  We are comfortable with this decision and now we have to decide where.  So we are praying, thinking, assessing, stressing, studying, PRAYING!  I know this is long and will close it up soon… I haven’t placed the shirt order yet but plan to finalize it soon.  If you are interested please e-mail at mardon@mardonhickford.com or FB with sizes and quantity (you can check out the post below for a picture of them).  AND I just want to THANK YOU for all of the meals, the thoughts and cards, and the ongoing help. I am SO BEHIND in thank you’s and I may never catch up. There are so many to thank and you all keep us lifted and moving forward. I just can’t imagine where we’d be without you.  Please know that we are so grateful for every word of encouragement, every meal that fills our tummies, the meals are SUCH a help!  We are grateful for all of your love and prayers!  I was telling a friend earlier this week that I can’t imagine what it would be like without all of the prayers that continue to go up for us on a daily basis.  We have joy… and HOPE!  It’s because God is listening and he gives us his little winks of love each day through YOU!  We love and pray for you too!  And we wish you a happy, safe and blessed 4th of July!