It’s taken me a couple of days to muster the “want” to sit and write this update. Jake’s MIBG was Thursday. The results were not what we expected or wanted to see. This is the scan that lights up everywhere there is cancer. While there has been progress, there is quite a bit of remaining disease, more than there should be at this point as we enter the second stage of his treatment. More than they are comfortable with going into Stem Cell. We are trying to get all of the information and options together before making a decision on the next course of treatment but at this moment, it is very unlikely that we will head to BMT at the end of the month. They want to do another bone marrow aspiration to check his marrow. If his marrow is mostly clean, they “may still go forward”. If not, we will look at other treatment first. They threw things at us like 14.18 and 3F8 Antibody Therapies and/or

MIBG Treatments. We are educating ourselves as best we can, as fast as we can, on all three in order to make the best decision. We don’t have a lot of time as we need to stay on track with Jake’s treatment. His next scheduled treatment, whatever that may be, needs to begin in the next two weeks. This cancer is vicious and you can’t let it sit long in between treatments. The insanity of all of the three treatments that are being discussed is that none of them are here in Houston. And we have to see if they have a slot we can jump into… fast. All of these things must align and this certainly puts a spin on things. Again, we find our journey taking a turn off course. It will be a week full of information, meetings and leg work. Also, Jake has two cavities… another ugly side effect of chemotherapy. Since he’s a cancer patient, he can’t just go take care of it at a dental office… it’s a surgical procedure… in the OR, under sedation. UGHHH! Enough right? Ok, how about some good news… sorta… Jake’s newest hearing test is done! Only took us a couple of attempts but we can check it off the list. He has “significant loss”. It will likely worsen before all of this is over but it isn’t enough to justify hearing aids at this time. Praises! We’ll revisit this when everything is complete. From a mother’s perspective, he hears me just fine when I want him too and especially when I don’t! (grins) Well, I think that’s enough for now and I’ll call it a night! We are so incredibly thankful and aware of all of the prayers you continue to lay before Jesus on our behalf. As hard as the past few days have been, we feel loved and surrounded by the angels God has placed here on earth that we call friends and family. THANK YOU!!! And please, please pray with us over the decisions we have ahead. The past seven months we have followed protocol and our doctor’s lead. This next step will very much be in our hands to hear where God is leading us. We need your prayers here that we hear Him loud and clear!

It’s been a bit of a blustery week and a half and we have lots to report. Mr. Handsome celebrated his BIG 5th, and it was a fantastic birthday! Although we spent the day at TCH, we were home in time to blow out candles with an outrageously cool cake from Cakes Against Cancer and Ali’s Cakes, and open PRESENTS!  While we were meeting with Jake’s docs that morning, Saraben came in with big news, offering a special birthday weekend at Squirrel Creek Ranch with four other families from the cancer center.  How could we say no?  The plan… to whisk us off by plane, bright and early Friday morning and spend the weekend enjoying the ranch and all of it’s activities.  There were exotic animals like zebra, camels, kangaroo, emu, ostriches, bison, so many.   The kids were able to bike all over, fish, swim, ride horses, feed the baby camels (Mary, Martha and Sarah), hang in the hammocks, and just play. There was cake to celebrate Jake’s birthday, each family made an Olympic family banner to represent our warrior spirit, there was a fashion show, we painted tiles for a bench that will find a home somewhere on the ranch, and moms got pedicures!  It was a really, really good weekend for all of us and it was especially geared toward the kids and all they go thru as part of a cancer family – something they needed desperately.  We were accompanied by our child life specialists, Saraben and Kelly, Doc Hary, Nurse Teresa, and several medical students. And some prayers were answered as Ryan was the hit of the weekend.  He has a bit of an old soul so hanging out with the med students and the older kids was right up his ally.  He played Monopoly, told them all of his many thoughts and life “plans”, and picked Doc H’s brain for medical advice.  Everyone was quite “impressed” (or entertained) with all he had to say.  Jake was able to participate in some of the activities but we noticed him slowing down Friday night and by Saturday afternoon he was puny and getting warmer and warmer. By early Sunday morning, he hit the magic number and we were off to the ER.  Thank God we had our own Doc in tow!  As we walked in, the nurse asked, “You travel with your own doctor?”, we grinned, “yes, yes we do!” (Felt a little like Phineas and Ferb.)  The ER that is close to the ranch doesn’t see a lot of cancer kids and thankfully, they allowed Doc Hary to be completely involved in Jake’s care.  They juiced him up with antibiotics and fluids, took his first set of blood cultures, and we darted out to make our plane just in time.  Doc H hit the phones immediately to get everything lined up at that little ER, as well as made all the necessary arrangements at TCH so they were prepared for us when we landed (exactly why Tx Children’s sends a crew for the weekend… for circumstances just like this). What a huge blessing it was for Doc H to be with us.  Had we been on our own, the ER would have ambulanced Jake to the children’s hospital in San Antonio where we would have sat until we could be transported to Houston, maybe a couple of days.  So we were “THAT” family.  They’ve had 57 of these family retreats so this isn’t new for them. As I was worrying they reminded me that we weren’t the first and we won’t be the last to be carted off with a sick kiddo.  That was Sunday… and here we are today.  It’s been a really, really rough week for Jake.  He’s had fever, the mouth sores are back in full force, and something new has hit… horrible leg pain.  We’ve never experienced this side effect before and the bone pain has been beyond aweful.  He’s on a full time pain pump which has kept him pretty sedated, and when awake, he’s been fussy and uncomfortable. He’s also on lipids and TPN for nutrition since he can’t eat.  He looks so tiny. Since he’s neutrapenic we’re here for a while. Some good news… he’s actually been awake most of the day and there is some slight upward movement in his ANC – we’ve gone from ZERO for the past 6 days to 30! It’s not much, but it’s progress and once it starts moving, we’re on the mend. We left the room this morning to walk and took a complete circle of the floor and he’s had moments of being playful and smiley – all big changes from this week.  As soon as his white cells begin to recover, the mouth sores will follow.  I’m not sure that the kids will come up for Mother’s Day since Jake is has been so blah.  We need to be very careful of anything they could bring around but I’m just happy to have this Mother’s Day with him!  These kind of weeks put it all in perspective.  I just want to say a VERY BIG THANK YOU to the Faust family for allowing our family to visit their ranch where they treated us like royalty… they have a true heart for the families of Texas Children’s Cancer Center… it was a true blessing of a weekend! So I’ll leave you with a little fun… http://www.youtube.com/watch?v=pQ4Rnba85o8  A little Mother’s Day Note from Kid President that made me smile!

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!