Our World Was Lit GOLD

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 also 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 his 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 on 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, EKG, 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 stop 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 took 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!