Phase One, In the Books!

I love this picture!  I think it needs to be on a billboard somewhere, don’t ya think?  So…. phase one, the Induction Phase, is in the books.  In the last seven months, our little warrior has completed six rounds of intense, inpatient chemotherapy, 2 surgeries, 2 weeks of GCSF shots , stem cell harvest, countless blood transfusions, tests, scans, and hospital stays. He’s had RSV, pneumonia, a collapsed lower lung and c-diff. I haven’t calculated it all to date but no doubt, we have spent more time in the hospital than at home. There are three phases to his treatment, depending on how things continue to progress, and this first one is COMPLETE!  Whew!  It was a fairly uneventful week.  Some of the normal nausea hit but other than that Jake was able to play in the playroom and just hang out on the floor – much better than being on lock down like our last stay.  When boredom hit, we played like his hospital bed was a slide or roller coaster… with the door shut, of course!  (big grins!)  Actually, most of our nurses show us how to have fun with the hospital beds!  Jake says, “they are really cool, mom”. We were able to get his EKG, echogram and pill swallowing class done – so we can check a few of those things off the pre-transplant list. I met with one of the Nurse Practitioners who will care for Jake and there are a lot more tests/scans to come, as well as a big meeting with the doctor/nurses that will make up Jake’s transplant team. IT will be a very busy week ahead.  I haven’t blogged much this week as I haven’t really had much to share but the anxiety is building for us.  BMT is closing in and just the short amount of time I spent with our NP was enough to make my head spin.  I’d really like to just throw Jake under my arm and run  far, far, FAR away.  His little body is going to be pushed to limits I can’t even speak.  He has no idea, and we’re terrified. My mind is in a constant state of little breath prayers.  At the moment, they have us slated for May 13th, BUT, as you know things constantly change and we are so fresh off of this chemo that, that date is just that, a throw it out there and see if it sticks date.  So we are moving forward as though it is a go but it really all comes down to how Jake’s counts recover from this past week. As we travel this road, little bits and pieces of information are intentionally dropped in our laps… but just tidbits so that we can get through one stage of Jake’s treatment without being overwhelmed by the next.  With that said, it’s always enough information to keep us on our toes with research and questions.  Radiation comes after stem cell and that will be our next educational focus.  There is also an antibody therapy called 3F8 and we will be looking into with all the what’s, why’s and possible benefits. It’s an antibody therapy and it’s considered a clinical trial type of therapy that works by infusing an antibody (ch14.18) that attaches to the Gd2 marker neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient’s own immune system to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient’s immune system to attack neuroblastoma cells and kill them.  It’s still a ways off but it’s “on the list” of things to begin researching.  So I’ll ask for prayer for all of those things, AND I’d also like to ask for prayer over Ryan – Charles to those of his school friends. (He decided to go by his first name at school last year).  He’s really struggling right now.  My absence is taking a toll on him in so many areas… his school work, emotionally, physically.  He’s only 9 and this is much more than he knows how to handle.  Please pray that he can just get through the next few weeks of school with a happy heart and that he can focus on his school work. Now here’s some exciting news… some of our friends have designed shirts for Jake. Here they are! If you’d like one, please contact Danielle Jones Goad. You can look her up and message her on FB or email her at danigoad11@gmail.com. What a blessing of love this is for us and we’re elated that so many will walk around promoting childhood cancer awareness on behalf of Jake.  Check them out! The shirts are $10 and the proceeds will go toward Jake’s mounting medical costs..  They are gold for childhood cancer, there is a heart in his name to represent all those that love him, a cancer ribbon being held by a sphere for his strong, fighting, warrior spirit and of course a big stompin’ out cancer dinosaur!  And they even added a scripture under his name that has come to mean a lot to us… Do not be afraid or dismayed because of this great multitude, for the battle is not yours but God’s….You need not fight in this battle; station yourselves, stand and see the salvation of the Lord.” II Chron 20:15-17  Jake’s birthday is tomorrow…  the countdown has been on for weeks.  He is super excited!  He’ll be five and as he said ” when I’m five, I’ll be the boss!”.  Hummm… I think he’s already got that down pat.  Sadly, he will spend his birthday at TCH getting transfusions and that means accessing his chest port!  You better believe there will be some extra presents for spending his special day in the one place he’d rather NOT!  It’s hard to think back to what this day looked like last year. So much has happened since then that I can hardly remember it.  In hindsight, when we think back to that time, we can see the little flickers here and there that were beginning to signal Jake’s disease. You can bet this year, this birthday, will be etched in our memories forever and to put it in perspective, we are just so very thankful that we have this day to celebrate!