Looks like tomorrow is “the day”. Jake will go into surgery first thing in the morning to place the catheter for his Stem Cell Harvest and as soon as he is out of recovery, they will hook him up to the machines and begin.  They’ve been tracking his counts, looking for special cells called CD34 cells.  These are the cells they will “harvest” so they can put them back into his body in a couple of months in order to rebuild his immune system for the transplant process.  He’s been slow to build these cells and they’ve been tracking them for the past week so they can catch them when they hit a certain level as there is a very small window that the cells hit their highest level, then they begin to drop.  They feel that Wednesday and Thursday will be “the window” for his best shot to capture as many of these cells as they can – they need millions. He’s ready to go.  His port is already accessed – it consists of a a 3/4″ needle in his chest and 6″ tube hanging and taped carefully.  Our prayer is that everything goes smoothly, that there are no complications, that they can get as many cells as possible in the shortest amount of time.  If they could get them all in one day – that would be our prayer. Most kids take two days, some longer.  They will hook him up until they get what they need.  They try to get enough for the first Stem Cell Transplant, plus extra for a future transplant procedure, just in case.  Unfortunately the relapse rate for Jake’s cancer is high and this is a precaution that they take… sadly, many more children than I’d like to say relapse. This reminds me… If you haven’t been on here in a couple of days, I ask you to scroll down and read Truth 365, then, share it… please.  It makes me think of something else… the fact we’ve been prepping Jake for this harvest has meant daily injections, as you know. In fact, because his cells haven’t mobilized in the amount of time they expected, we’ve had to fill extra days of his injection prescriptions (the shots continue until the harvest is complete).  I want to give you some information, not to make you feel uncomfortable or sorry for our situation but to bring more awareness… the shots we give him come in teeny, tiny vials, you can see in the photo.  Yesterday, we had to fill 4 extra vials to the tune of an additional $1906 on top of the nine vials he’s already gone through this past week and a half.  Do you see the itty, bitty vial in the picture?  They are tiny, 1ml vials BUT we only give him .5ml – then we must throw the rest out… wasted.  What in the world can be in a vial so small to cost that much money?!!! (In dollars, that’s almost $500 per vial!)  It’s infuriating and it’s wrong! Things MUST change!  The photo captures how our mornings start… our prep area for his shot… and in the background you can see the pharmacy of Jake’s meds.  It’s crazy!  Again, I tell you this for awareness, so that you might fight for these children, for these families who must find ways to make sure their children have what they need to battle their disease.  Do you think that if childhood cancer research had more than 4% to work with, there might be better or less expensive drugs for these families?  I do.  Please, please, visit  www.thetruth365.com to see how easy it is to help.  I will try not to harp in every post, I just want everyone to know that there is hope, we just have to “DO”………. for scripture says we are one body in Christ, we all have different parts, different jobs, but we work together to glorify God.   On a lighter note… the Daughters of the King visited our home last night to Christmas carol.  What a treat!  They were beautiful and joyful and what a gift it was to have them sing for us and then bless us with a special prayer.  I had to hug each of them… they were just precious young ladies.  We have been blessed by so many generous offerings of time and love, friends that want to show their support for our family… we are so thankful!  These are moments and memories that give us hope and courage each time we walk into TCH for a new procedure or appointment.  THANK YOU, THANK YOU!!!  I wish I could give every one of you a big, big hug.  Please know that we praise God each night for you and all of the help and comfort you bring to our family… we love you and send our deepest, most heartfelt appreciation for your prayers… we feel you!

Unless someone like you

Cares a whole awful lot,

Nothing is going to get better,

It’s NOT.

-Dr. Suess

I mentioned in on of my last posts that as I learn, I will share. I have more and I’d like to ask for your help once more… to pass along something special, something that will educate and inspire, and hopefully tug at your heartstrings. Our most powerful army to inform is now social media – it moves people to action faster and in ways that nothing else does. Truth 365 is a grass-roots video that has hit the media waves. ( www.thetruth365.org ) The goal is to flood Facebook, Twitter, You Tube and other social media sites… to provide awareness for childhood cancer and mobilize people to act. This teenager fought and won her battle, and has vowed to do something. She is smart and brave and fighting for change. How many of us watched and felt the fear and heartache of the Kony film last year as it went viral in a matter of hours and days? Because it touched us, we passed it on. Please watch Truth 365 and SHARE IT! PLEASE PLEASE, share it! Let this film educate and instill the same passion. Let it bring change!

I know it’s lengthy but it’s important. It’s relevant, it’s real life and it’s happening right here in our country, our communities. It’s not just about Jake, it’s about so many children… 35000 children. If you don’t have time to watch the whole thing, skip around, you’ll miss a lot, but every part of it has impact, you’ll get something no matter where you land. Then go to

the end, find out what you can do. It’s not hard or time-consuming, a few minutes of your time could be the beginning of making HUGE change…. changing the statistics, changing a dismal 4% . Childhood cancer is unpredictable and can affect any child… it could be your neighbor, your best friend’s child, your student, your family member. Our children are gifts from God, He only asks us to love them, to protect them… please help them!

Did you know???

• In the past 20 years ONLY ONE new cancer drug has been approved for pediatric cancer. The drugs that currently treat childhood cancers were discovered 30 – 40 years ago and these drugs are toxic to the extent of causing future cancers and significant, permanent side effects. Many of these side effects are not seen in adults, only children, yet they continue to use these drugs, rather than develop newer, better, safer ones.
• 35,000 children are currently in treatment for cancer.
• Cancer success rates are based on 5 year survival rates, they are not a lifetime survival rate. Much of this due to the lack of treatment options, drugs, and new trials.
• Nearly 2/3 of survivors experience later significant and chronic medical problems or develop secondary cancers that result from the treatment of their original cancer.
• The causes of most pediatric cancers remain a mystery and cannot be prevented.
• The average age of death for a child with cancer is 8. At least 25 percent of all children with cancer die.
• Researchers estimate that 51% of moms and 40% of dads who have a child with cancer meet the criteria for “Acute Stress Disorder” within two weeks of the cancer diagnoses.

Please share Jake’s page so others will know, then view this film at www.thetruth365.org You can also follow them on Facebook.

And here are a couple of other resources…

• Neuroblastoma Website – http://www.cncfhope.org/
• Children’s Cancer Research – http://www.childrenscancer.org/

Since someone like you,

Cares a whole awful lot,

It’s going to get better.

It will.

-Katie, from Truth 365

 

A little Good News and some Not So Good News??? Good news…  My sweet, cooky, wonderfully fun, and most lovely and gentle hearted BFF Tracy, wrote the most beautiful letter about my family and sent it to 104 KRBE for a Christmas Wish radio contest and won!  Then they called (first thing in the morning) before coffee and read the letter on the air…  I was a blubbering mess.  But how cool is that?  $1004 to help with Jake’s medical needs.  I can’t help but think of the HEB ticket machine where my kids get Buddy Bucks that says “winner, winner, winner, winner!”  It was such a surprise.  I think some of my homemade scones need to make an appearance on her doorstep for her precious heart and beautiful blessing of friendship.  I just LOVE her to pieces!!!!!! And for the not so good news… It’s Saturday, and we were sent home.  Jake’s cell counts are not mobilizing and we can’t harvest his stem cells this weekend.  We will try one more time on Monday.  If his counts are not there, we stop the GCSF injections, march on toward our next round of chemo, and start over.  That means all of the injections are for not and we have to do them all again.  They are awful for him, for all of us, so as much as I really don’t like saying this, please pray that his counts are where they need to be.  I know this has to be done, but my heart is so fearful and there is a big piece of me that isn’t ready for this leg of the journey.  Harvesting his stem cells is the very first step to lead us to the hardest and most dangerous part of his treatment.  I MUST let go and give it to God.  I know he is Jake’s protector, his healer, but I’m his mom, I’m human and selfish, and it is so hard to hand him over.  When he’s upset, when he’s being poked, when he’s throwing up and sick to the point of exhaustion… he wants his mommy.  How do I let go?  I really need your prayers over this. Henry and I are both struggling with this stage of the process.  I keep thinking of the scripture, “Let each of you look out not only for his own interests, but also for the interests of others.” – Philippians 2:4  I’m really trying to draw on that as a reminder that this isn’t about me being ready, it’s about Jake’s best interests.  If you have anything we can use to find peace with this, please share. And, wouldn’t ya know… the petri dish grew gunk and as suspected, Jake has RSV.  The initial test came back negative but the cultures say otherwise, which is the likely reason the GCSF isn’t boosting his counts the way it should.  They are fighting the RSV rather than working their magic in his bone marrow.  This is actually a little bit of good news because without the shots, the RSV may have taken him down hard.  The BMT Doc talked of admitting him today and putting him in the RSV tent for the next 5 days but we said no.  For now.  If it worsens we will reconsider, of course.  This could present a problem though because the anesthesiologist is very uneasy about sedating him with a respitory illness.  So even if his counts improve by Monday, we may not be able to go forward.  The endless limbo is so difficult.  (But he really does look good, and the week has brought improvement with his cough).  In fact, yesterday he went outside to play for a few minutes for the first time in a while and we ran an errand while the kids were in school – he was diggin’ the freedom. Today they put us in a hospital room without a bed and he thought that was GREAT!  So roomy.  Roomy enough for Jake to kick around the little blow up ball they gave him from the “I Got A Poke Treasure Chest”.  Sadly, he did get poked twice today.  One of his veins blew during labs draws so they had to go for the other arm.  This week has consisted of 4 blood draws, 7 shots, 2 port accesses and 2 nasal syringe things (those are hateful – btw).  His little arms and legs are tracked up and he’s had enough… this has been a week from “poke hell”.  But ya know what the most amazing thing is about these kids????   They just keep pressing on.  One minute they are pleading, crying, and afraid.  The next minute, they turn a corner and are happily telling the nurse that just poked them what their favorite dinosaur or princess is.  These angles with the title Nurse cans ease them back from hysteria and have them deep in conversation in no time.  And the truly amazing ones capture your heart and that of your child’s.  There is forgiveness and comfort when the day is done, and it’s a beautiful thing in the midst of such misery.  For our nurses that tow the line every single day… my heart loves you for how you love our babies!!!