I come to you with a special prayer request for Katie Wagner. I’d be so happy for you to cover her in prayer and show her some love on her FB page at Wagner Family Support.  Katie is 17 and is fighting Rhabdomyosarcoma. She was actually in remission but last month her cancer returned.  She begins the fight again.  This makes me sad.  Do you know that most childhood cancer survivors will never really be survivors? Unfortunately, the drugs that are used to heal, don’t.  Many of these kids will go into short-term remission only to have their cancer return or new ones hit them as hard or harder because the drugs being used are so toxic.  The “survival” rate is a 5 year rate.  Most of these kids will develop a repeat of their original cancer or a different, secondary cancer within that time period, which makes every scan a jumbled mess of nerves and unknowns. There are 13,500 new pediatric cancer cases a year which is not seen as an “epidemic” by our government. (That number is new cases – doesn’t include relapse cases – so that number isn’t truly accurate for them to base their reasoning).  And although they say otherwise, the American Cancer Society is not interested in funding better treatments and safer, less toxic drugs for childhood cancer.   I know this is repeat information but it bears repeating… the ACS only gives 4% a year to pediatric cancer.  They give NOTHING to Neuroblastoma… ZERO!  (If you ever want to give to pediatric cancer, the ACS is not your place, find a foundation that truly funds childhood cancer research.)  The drugs being used on our kids are archaic!  They were developed 30-40 years ago but it’s all we have!  BUT things are going to change soon.  Within the next 10-15 years, childhood cancer will become an “epidemic” as far as our government’s standards. But we won’t have kept up and there will be such loss, more than we see even now. And those of you that know me well can all yell “SQUIRREL!”  I’m heading off on a tangent now that is unrelated to Katie or Jake or most current kid cancer patients.  Here goes…  Sucralose!  It’s in EVERYTHING!  IT”S HORRIBLE!  Most of the cancers that effect our children are absolute random mutation.  There is no rhyme or reason.  But that’s going to change.  Very soon, you are going to see more and more childhood cancer cases that can be traced.  Finally, it will be called an epidemic.  But it will be different than our current cancers because like many of the adult cancers, it will be based on toxin build up.  Sucralose is in EVERYTHING our kids are ingesting.  You have to look hard to find things WITHOUT it.  It’s in your kid’s drinks, fruit snacks, yogurt, milk products, cereals, breads, cookies, sodas, everything. Real sugar is OK, our body metoabolizes it.  It’s not bad, yet it’s being replaced by this chemical that hasn’t even been studied in humans long enough to know it’s effects. I’m harping on this because it truly is in EVERYTHING!  I ask you to spend a little time researching it and come up with your own conclusions. I find it to be a very scary product. It’s just a matter of time until we know exactly what the body does with it, but sadly, the damage will be done.  I don’t usually use this blog to rant but this is something that I truly believe is a future monster in the making… one that can be easily thwarted. To give you an idea… the other day Henry went shopping with me. Everything that he put in the cart for Jake to try and put some meat on his bones had SUCRALOSE.  All of it.  He didn’t believe me at first so he started reading the labels too.  Surprise!  He got a real quick education.  READ LABELS!  Don’t buy it! It’s not worth the chance. What Jake faces everyday should not be experienced by any other child. Knowing there will be children that will one day have cancer by something other than an unlucky, statistically, random mutation makes me sad and SO ANGRY. OK, rant over!  On a sidenote… Jake woke up at 3AM throwing up like crazy.  No fever but very weepy and off today.  We head into TCH tomorrow.  We’re scheduled to head in for six days of chemotherapy if he makes counts. Last Thursday his ANC and hemoglobin were ready for chemo but his platelets were still low.  He needs to be at 75K to hook up and he was only at 36K. We’ll know manana. In the meantime, I’m packing to be gone for the week even though I have a feeling we’ll come home tomorrow and have to try again later in the week. He’s had a good, happy week with swimming and playing.  Oh, he’s also still harboring that cough from December.  It’s never really gone away but it comes and goes in it’s severity.  Thurday there was a little noise in the lower lobes of his lungs again so we’ll be watching that Monday.  If it’s still there or worse, we’ll have to do a chest scan before entering chemo.  For now, he’s cuddled up with his blankie on the sofa watching Wreck It Ralph.  Back to my moment of squirrel… thank you for humoring me and reading this, I hope the information is helpful in some way and doesn’t discourage you from coming back!  Have a blessed Sunday!

Tonight’s post will be short…. I come to you, our prayer warriors asking for prayer for our dear friend, Roderick. Roderick is fighting osteosarcoma, he’s had NINE surgeries and he is a WARRIOR like I’ve never met! He’s had the entire bone removed from his leg and has a metal rod inserted, yet he doesn’t let it hinder him AT ALL! He’s had a spot removed from his lung and so much more. He’s done everything right! He is the perfect example of a kid following all of doctor’s orders, sticking to his therapies and rising above. Yesterday, I learned that his cancer has spread to his brain. The tumor is not in a place that they feel is operable. TCH has told them there isn’t much left for them to do. I just don’t believe this to be the case… not with this kid! He’s super hero strong! He’s been through so much that there has to be a HUGE future testimony waiting for him to share. Please, please pray for Roderick and his family. Please pray that St. Jude’s may know of something that TCH doesn’t and if so, that they will approve his request for treatment. As his mom said, they will NEGU but there comes a time when you can’t help but wonder why. Please pray for her peace and for courage. It’s been a tough week all around for our cancer community… so many brave fighters that we’ve been praying for left this world. This is not a world in which I ever wanted to live, but I do, and it’s so heartbreaking. Often times the good days are overshadowed quickly by the unimaginable sadness when one of our children is taken too soon. Several times, out of protection and the best intentions I’m sure, friends have said that I shouldn’t get so deep into the lives and stories of these families, but their stories are our story. Jesus says that we comfort and love

our brother… they are my brother. I feel their hurt, even worse, I FEAR their hurt in the most hidden, bottom place of my soul. I must follow them, for their children matter, every one of them are precious and loved. So tonight I ask for prayer for healing and a course of treatment for Roderick. And with tears and a heavy heart, I also ask you to pray for the families of Jedi Max, Bella, Silas and Brendan as they are now in the arms of Jesus… fly home sweet ones! “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4

 

I invite you to hunker down and get comfy, it’s been a busy week with some good days.  Thursday we met with our Oncologist and we have a plan… it’s short term with room for deviation but it’s in place. We’ll head in for two more rounds of chemotherapy. These are drugs that Jake has not had and the hope is to continue with the whole “nuke it” theory. Strike hard from every side, with different chemotherapies, change them up, add new harder ones, and blast him again. There are different types of treatments and there is order in which they are given, sometimes they are mixed around but they try and save some of the hardest till the end as “last ditch”. We will pray we don’t get to this point but the seeds have been planted and we know what might come next, if necessary. His cancer is showing reduction but it is being resistant. They don’t believe it to be growing but at this point his bones should be showing NED, or almost NED (No Evidence of Disease).  They need this so that the Stem Cell can work on the cancer in his bone marrow and all of the tiniest undetected cells. The next two treatments will be 6 days inpatient on the chemo pole with three weeks to recover in between.  One of the drugs will likely hit his system like the last go-round, causing neutrapenic fever and a couple of weeks of unplanned hospitalization… so another words, plan on the unplanned! These added chemotherapies will add 8 – 10 weeks of treatment. When done, we will rescan and reassess where he is. If there is NED, we will head to Stem Cell. If there is still disease, we will head into MIBG. We will pray for the first for so many reasons. There are two options for MIBG – one is Dallas, one is Ohio. Dallas seems like the obvious choice, however with very limited information, Ohio has my attention – but availability could dictate. We found out today that the programs are run a bit differently. MIBG consists of extremely high doses of radioactive meds. Dallas does not allow a parent in the room with the child for at least 24 hours and then there are “shifts” for seven days to limit the exposure as he is highly radioactive.  Had to take a moment with that one.  Due to Jake’s age, that won’t play out well. Anyone that knows him, knows that just isn’t an option, he doesn’t let me leave him, and with as much as he’s been through, I can’t blame him. Ohio’s policy is different but I don’t have all the details, I just know that the 24 hour parent/child isolation is different, and frankly I think I’ll cross that bridge when we get to it. So armed with a new battle plan, we march on! Now for some fun, good news!  Next Thursday night, dear friends are putting on a fundraiser at McDonalds on Jake’s behalf.  Here’s the information… WARRIOR JACOB NIGHT – Thursday, May 30th from 6PM-8PM at McDonald’s at 5909 FM 2920 near Kuykendahl Rd. (www.mctexas.com/31363) 25% of the sales for those two hours will go to Jake Hickford’s Medical Funds.  It’s the pick-up location for shirt orders and there will be extra shirts for sale.  If you are in the area, we’d be honored and so blessed to see you there! It’s been a busy, busy week.  We’ve had field trips, field day, award ceremonies, and a 5^th Grade Graduation where our Twinstinks were both voted by their classmates and awarded the Most Positive Student Award.  Considering the year we’ve had, I am the proudest mom in the whole world.  They’ve kept their heads held high, they’ve been there for Jake at every turn, prayed over him, loved him, worried over him, stayed with him at the hospital, worked hard at school and at home, continued on with their extra activities, all with smiles and giggles and sweet, giving hearts.  We are SO VERY PROUD and BLESSED to be their parents! On Thursday Jake was asked to be part of the Randall’s Grocery Store photo op with the Houston Chronicle as they donated over $86000 to Texas Children’s Cancer Center. What an honor! This is the thing… today the 5 year old “change of smile” happened!  You know the one… where his cute little teethy grin is gone and the fake, chin up, mouth closed, straight line grin takes over. I don’t know where the smile and tilted head has come from, but MAN! We kept telling him to show teeth, smile big! He didn’t get it. They thought he was super cute but we know what he looks like with a full-out grin so we were a little stunned at the new Jake smile. Still, he does look very Handsome! Earlier in the week we had a special play date with Pearl Elizabeth. Jake still isn’t himself but we had a really nice time. It was wonderful to be able to play with another child.  Play dates are far and few between for him and right now, with his counts so low and coming off of a two week hospitalization, we had to keep it on the down low, so what better person to do this with than a friend in the same situation.  And it was really nice for us mommies, too.  This disease isn’t just isolating for our children. All of our friendships change… some are strengthened, some go into hiatus, some of them fade away, and there are some beautiful, new ones that form.  I am forever thankful for all of them, for they all have a purpose and a time. So I’ll close with some prayer requests… we ask you to pray that this round of chemo bombards every cell in his body!  That the next set of scans show NED so we can go into Stem Cell and get back on track. We pray thanksgiving for those being touched by Jake’s journey.  The meals, the touching notes of encouragement, your prayers have not ceased and you have been God’s arms wrapped around us.  I pray God is blessing you with all you do to bless our family.  I ask you to pray for another one of Jake’s special friends, Patrick.  He is also fighting Neuroblastoma, is just a little older than Jake, and is the sweetest little boy.  On Jake’s birthday we were in clinic all day for transfusions and they had been playing. As Jake was recovering from access, Patrick came back over to see if Jake was ready to play again and saw how upset he was. He just sat and rubbed his little back telling him it would be OK and how he understood.  He asked, “do you need a hug, Jake?”  Jake said yes and I had to step away.  These little boys, just children, were comforting one another in a way that only the two of them can ever understand. Patrick will be heading to Dallas in June for MIBG. Please pray for him and his family.  Pray over his treatment there. Pray over his parents and the fear and unknowns that come with such a difficult treatment. Pray over all of the doctors and nurses that will care for Patrick as he will be far away from our “home hospital”.  Pray that the treatment is successful and that he too will see NED very soon.  Thank you, thank you for reading and genuinely praying for all of these things… for our family and for so many of our friends that we’ve shared with you. I’ve had this scripture swirling in my head for days as I’ve thought of how blessed we are by all of you.  “To everything there is a season, a time for every purpose under heaven.” ~ Ecclesiastes 3:1  For our friends, old and new, to those we’ve never met but we hold dear to our hearts, all of these friendships are changing and shaping our lives and our circumstance. Your love has strength and purpose, and we are blessed.  As always, being back home means the music is playing in the back ground and we love this one… We Won’t Be Shaken by Building 429   “What ever tomorrow brings, together we’ll rise and sing. We won’t be shaken”. http://www.youtube.com/watch?v=Sgn5gRkZf0Y