One Year Ago

Written by Mardon Hickford. Posted in Uncategorized

2013-10-07 13.28.09It’s hard to believe that a year ago, we entered the big, ugly, wicked cancer world. My stomach aches just thinking about it. So much has happened, so much has been learned, so much has changed. Kind of fitting that September was Childhood Cancer Awareness month and that is the month that our world changed. Although we learned of Jake’s cancer on Sept 27th, it was October 11th that his Neuroblastoma diagnosis was officially charted. One year ago, today.  At this point in the game, as far as the standard NB treatment “road map” goes, Jake should be about done with the toughest treatments. For those kids who are lucky enough to see first round success, they are celebrating about now. But for those kids who find themselves still fighting, the plan changes and the course continues, it grows longer and harder. At this time we don’t really know where the journey will lead, we have plans in place but as you know, they change constantly.  I think we are all feeling a bit run down, exhausted really. Jake’s bone marrow biopsy was this week and we have a ton of appointments full of scans and results next week. 2013-10-07 15.44.43In fact, we’ll be at TCH four days next week and by the end of the week, we’ll know exactly how he responded to the MIBG treatment. At this time, we are scheduled for a second MIBG treatment October 28th. Yep, Handsome will spend Halloween isolated in a lead room and I think I’m taking that one harder than he his.  They feel the stubborn spots will remain and he will need more treatment – more treatment – there is still so much “more” treatment ahead. And these aren’t maintenance treatments, these are hardcore, keep blasting him with everything they have treatments… MIBG, Bone Marrow Transplant, Antibody Therapy, Radiation. Maybe it’s the anniversary date, but I’m heavy hearted and tired. I’m especially tired of the pokes and the procedures, the fear and the tears. I want him to be five. Just five. I want to go bacJ and preschool May 2012k in time and grab him out of this photo for just a day.  I want him to sit in a classroom full of friends, learning sight words, playing at recess, and having mom-n-muffins morning. He’s at that question stage. He questions everything. “What does that mean?”  “Why does it work that way?”  “Who made that?”  “Why do we do that?”  “How do you spell that?”  He doesn’t even know how to spell!  But he asks. The other day after we finished up his port access, someone in clinic told him “you’re so strong and brave, I’m so proud of you, and you’re going to beat this”, followed with a big high-five.  As we walked down the hall, he asked me, “Mom, how do you know I’m going to beat cancer? How come Roderick couldn’t beat his?”  He still asks about him often.  In his little boy mind, Roderick was older and stronger…why will he beat it when Roderick didn’t?  These are the moments that I have to look away and try to answer without him seeing my eyes fill up. It’s been a healthy month for Jake – as healthy as a cancer patient can be. We are SO THANKFUL for that. He’s felt good, eaten well, been able to play outside. We did have to give him some of his own stem cells back to h2013-10-07 16.24.19elp build him back up from the MIBG and that went well – we were in and out of the hospital in no time. We actually stayed on the BMT floor. We’ve done that once before and some of the nurses remembered Jake. We continue to be in Clinic a couple of times a week with lots of transfusions, the usual. We’ve actually spent a lot of time in the 3rd floor infusion room for a change. It’s different from the cancer floor’s infusion room – not a play room, much more grown up. Like what you would find for adult cancer patients with the recliner and a TV on a moveable arm mount, with a curtain that can be pulled for privacy. He doesn’t seem to mind because he gets his own TV to watch whatever he wants, and it’s just inches from his nose.  The nurses seem to think he’s a hoot. He’s different in there, maybe because they don’t ever access him so he’s usually recovered and happy once we get downstairs. His little friends, Taylor and Nathan were in clinic this week, we also saw his friend Patrick last week, and his little friend Michael.  They are all doing well and that brought smiles and relief. I met a young lady, Jenae, at the store last week who has been battling a brain tumor. She was sitting, waiting for 2013-08-06 13.09.56her mom to shop, and I think I startled her when I asked her diagnosis and how she was doing. We talked for a bit and found that her radiation Doc at Methodist will likely be ours too – when Jake finally gets to that phase.  I’m not sure how old she is, teens, but I’d love for y’all to pray for her. She was darling and just delightful to talk with. And, please pray for Nathan’s parents (one of Jake’s best buddies), as MIBG treatment has now been proposed for him and they must make that decision. It’s definitely a hard one. And, lastly, please pray over the tests Jake will undergo this week. For the emotional and physical aspects he’ll face. And for Henry and me, that we are prepared for whatever the news.  We expect good things, but we are a year into this and reality has set in. We know that there is still more ahead that Jake will need, we just pray for less, of the “more”, and that these treat2013-09-16 10.24.53ments have strengthened him to forge forward.  Oh, also… pray safety over our favorite friend, Saraben!  She’s on safari in Africa looking for cheetahs for Jake (wink!).  Because of her trip, she hasn’t been in clinic this week and Jake has missed her (we both have!) but he’s done so well letting everyone know where she is. She’s sent him a couple of little messages telling him what she HAS found, and that she is still on the hunt for the cheetah he told her to look for. We love her!!!!  So that’s about it fo2013-09-16 10.25.03-1r the moment… we continue to praise Him in this storm and are so thankful for all of the kindness, prayers and help you all have showered us with this year!  I can never list, nor thank everyone enough. You have lifted us in prayer, with help, kindness and love. You are God’s army of angels here on Earth for us.  We thank God for you every day!  From my devotion this AM…  “I will tell of the kindnesses of the LORD, the deeds for which he is to be praised, according to all the LORD has done for us – yes, the many good things he has done for the house of Israel, according to his compassion and many kindnesses, Isaiah 63:7

Sunshine & Rain

Written by Mardon Hickford. Posted in Uncategorized

Bengals11 (4)Bengals11 (2)So we all know FOOTBALL is BIG in Texas! What we didn’t know is how early it starts, how truly disciplined these kids are, and how fun it is to watch them play! For the month of September, the Bengals’ players wore yellow laces and the Widlkats’ cheerleaders wore hair ribbons and they used their venue to educate and show support for Jake, and especially for Childhood Cancer Awareness. Yesterday they honored Jake at their junior football game. It was also their homecoming so there was lots of excitement with mums, and families walking together thru the big Bengal Tiger blowup, and the WildKats cheerleaders dancing at halftime… it was all so FUN! And my friend and Bible Study sister, Ashley, Bengals1brought her family to hang out and support Jake too! At halftime, our family was brought out and they presented Jake with a ball signed by all the players and coaches, and his own Bengals jersey. Then the coach brought all of the players in, to huddle around Jake, and pray over the game. I had tears! I wish I had video of

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this part as it was something we’ve never experienced and it was so moving to have all these young boys repeat their team prayer with Jake at the center. We stayed and watched most of the game and enjoyed just being outside! A very BIG thank you to my amazing, childhood friend, Danielle, and the Bengals & WildKats for such a memorable day! She and all the parents worked so hard to schedule, and reschedule, and reschedule again, to make this all happen (rain!). It’s a day our family will always remember! Unfortunately, I took a fall a little later while holding Jake and we ended up in the ER. I tripped and we went down on the concrete, with Jake hitting

Prayer Huddle w/Jake at the Center

Prayer Huddle w/Jake at the Center

the back of his head, and me landing on top of him. It was so scary! All is OK but because his platelets are a constant struggle with weekly infusions, we had to get him checked out. It took us forever because the ER wanted to do blood work and we didn’t feel there was any reason for a CBC when were not in for fever or sickness, we just needed a Bengals3CT. Then they came back with, “without knowing where his levels are, we’ll have to keep him 24 hours for observation”. What????? All because we asked them to use his CBC from Thursday to get a gage of his counts. Every time his port is accessed, there is risk for infection and we haven’t had the best experience with the ER accesses. And even the nurse didn’t understand the orders and agreed that there wasn’t a need for this information. We asked to speak to the on-call Onc Doc from the 9th floor but they wouldn’t come down so we held our ground. And to Jake’s relief, there were no pokes yesterday. The next two weeks will be full of tests, scans and pokes so we were trying to limit any needles that weren’t Bengals10necessary. In fact Jake has a CBC, transfusion, and bone marrow aspiration TOMORROW. With that in mind, I ask prayers oveBengals4r this. Sedation is never fun and we are praying that his bone marrow comes back with less disease. And while asking for prayer, please. please pray for our friends, The Jenkins. Their daughter, Jaquelyn, walked through Heaven’s gates yesterday. For her, there are no more pokes, pains, worries or hospitals. Our families came together during the NFL/MLB photo shoot and she was actually at TCH the first time we came in for treatment with Jake. While we were caught up in the emotions of all of the “firsts”, she was sitting to the side and smiling back and forth with him. Over the past year, we’ve been in clinic together andJaquelyn Jaquelyn’s sweet, shy, beautiful smile would catch Jake’s attention and he’d flirt back with sheepish grins, growing bigger and bigger. She was the oldest of five, just fifteen and so beautiful – please pray for her family. These are days where the sunshine and the rain meet in the middle and you wonder why things happen the way they do. Truth is, we have to trust in our faith, that that there is a purpose for everything and everyone. Jaquelyn’s smile was a ray of sunshine for Jake and yesterday she met the Son, but today, it feels a little like the rain. This song makes me think of Jaquelyn… He Is With Us song by Love and the Outcome http://www.youtube.com/watch?v=Z6mEQS2fsWE Rest, smile, and fly high, beautiful Jaquelyn.

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“This place where you are right now, God circled on a map for you.” – Haftz “Rejoice that your names are written in heaven.” Luke 10:20

Our World Was Lit GOLD

Written by Mardon Hickford. Posted in Uncategorized

City Hall 19 I now it’s been a little while since I’ve updated and I have to apologize. It seems Jake has his own little social calendar.  This “in-between” stage has been good to him. He’s still needing transfusions… lots!  But his ANC has been higher than usual. It’s still not what yours and mine is, but for him, it’s better than it has been in a year.  Enough for him to get out and about a little bit (or a lot-a-bit, actually), with caution.  And that has allowed us to attend a few events specifically geared for him.  We’ve had a busy month, a good month… a month full of GOLD!  At the beginning of the month, we met with other cancer families for the lighting of City Hall.  It was a night full of stories and love.  There was a balloon release to honor those children taken too soon and it was a really special night.  One afternoon Jake and I visited Cathedral Energy where they went GOLD for September with Jake shirts and a luncheon in his honor. There were dino footprints leading to the party room (aka conference room), and there was pizza, cake and dinosaur toys all over the place!  We were invited to speak at Concordia HS recently and that was such an honor!  I prayed and prayed over the words and the nerves, and the right message for them to hear. It certainly was a blessing for us and Jake loved the attention!  We were aJ and Cathedrallso invited, along with our friends, the Whales, to the Concordia volleyball game last night. Jake and Grant were honorary guests. They brought both of our families out, gave the boys the coolest box of Lego stuff and presented our families with checks toward the boys medical funds.  The students at Concordia have been hard at work in September learning about childhood cancer, spreading awareness and raising funds.  They have wrapped their arms and hearts around our families and we are so blessed and thankful!  I want to send out a very special thank you to Emily Riemer for spearheading the bake sales at Concordia and doing so much to rally her friends and so many students behind such an awesome month of GOLD.  Two weekends ago, Jake was able to go to his nephew, Nikolas’, birthday party.  Yes nephew!  Remember we have a much older daughter, Meghan, and she has our two grandbabies, Nikolas and Ebby.  So that makes Jake an uncle – only a year older than J and Concordiahis nephew.  Grins!  He was also able to attend the benefit of one of his warrior friends, Taylor, and had a great time eating snow cones and bouncing around.  His lips, tongue, hands, shirt, you name it, were bright blue. He and his friend Maddi, attended a special premier movie night of Cloudy With A Touch of Meatballs 2 with the Candlelighters. And this weekend, Jake will be honored at the Bengals game (junior league football) and will get to walk out on the field. AND, I’ve been able to go back to Bible Study!  THAT in itself is HUGE! I have missed my girls and my Godtime!  He’s felt well enough to allow me a babysitter, or maybe it’s that I’ve felt comfortable enough to leave him since he’s feeling okay.  See… social calendar!  It’s been really nice and he’s been so happy!  We know it’s only temporary and isolation will return soon but for now we’ve had a little downtime while waiting 2013-09-22 16.17.16on scans in between the last MIBG treatment and our next course of treatment but it’s been a couple of weeks of needed reprieve.  And he has had time to grow some hair!  That too is temporary but it’s so nice to see it.  I’m trying not to harp on it too much so that it isn’t a big deal when he looses it again, but I can’t help but touch his head all the time.  It’s such soft, baby fine hair. I must be doing it too much because he told me that I need to *not* touch his head so much,  Then said, “but you can still rub my head at bed time”.  He likes me to rub his little head to help him get to sleep.  Awwwwwww… a mommy moment.  So we start his next set of tests soon.  We have his bone marrow biopsy on Tuesday. Then we have his MIBG, CT, EK2013-09-24 19.04.32 bG, and ECHO the week of Oct 14th.  And we still have two lab/transfusion appointments each week with all of those. So we live at TCH and driving into the med-center so much is definitely taxing on both of us. At the moment, they have scheduled us for a 2nd MIBG treatment in Ft Worth.  We are praying for NED but, should we need a second treatment, Jake has a plan in place.  (Several plans in place, actually.)  The scans will pave the next course. Please begin praying over these scans.  We desperately pray for NED!  NED means we don’t subject Jake to another MIBG treatment.  As I’ve mentioned, it’s well tolerated now, but no one truly knows the repercussions later.  I also have another prayer request… as happy as Jake has been, he’s also having some pretty major melt downs. He’s five and five year olds have occasional tantrums. But these are different. These are uncontrollable, crazed moments of crying, screaming, flailing… he can’t calm down until he’s almost worn out. He’s had three in the past week. We believe it’s chemically induced by the meds, the radiation, or something.  After it’s over, he has true remorse and says, “I just can’t 2013-10-01 20.03.13stop myself”. He genuinely feels bad but has no control over his emotions or behavior.  Please pray that this is something temporary and that it subsides soon.  These are the scary things that you are not prepared for, no matter what you’ve read or you’ve been told.  Each time, it’s surprising, maddening, and heart wrenching.  There really isn’t much we can do but let him go through it.  So that’s our month in a nutshell!  Just one year ago, we heard those words… that Jake had cancer. You can’t tell me that God isn’t in this with us!  Here we are a year later… his cancer came to light in September…. Childhood Cancer Awareness Month… and while we’ve lived in the hospital for most of the year and he’s been isolated and sick, it’s this month – September – where we’ve been blessed by a “time out” to help spread awareness and enjoy the journey that has brought so much change. So now that September has come to a close, I’ve noticed all the stores in full PINK mode.  I pray that one day we see GOLD filling the isles the same way and I’m so thankful and proud of all of our family and friends who too2013-10-01 18.48.56-1k up the cause with us this year. I know next year will be even bigger and brighter.  Now it’s time for Pinktober!  We will be praying and honoring all of our PINK warrior friends this October just as they have prayed and honored Jake. We are so thankful for the love, support and mentorship they have shown us this year.  So, ladies, the best way to take care of your families is by caring for yourself.  Get you “girls” checked!  Find your PINK and wear it proudly, just as you did GOLD!