We sit in the truck on the way back from Cook’s Children’s in sheer relief. We made it! The week is over and we’re heading home. It was an eventful week. So much to tell that it may take a couple of blogs. Walking out of those isolation doors with Jake this morning was THE BEST feeling in the world. I’m guessing that it will be similar to when we finally hear NED. There is just something about that room that makes you feel as though you are so far away from your child, even though you are right on the other side of the glass. And even when we could go in, it was quick in, do what was only necessary, and GET OUT! There were no kisses or hugs or cuddles. Jake’s doing GREAT! Like anything else, every hospital is different from the dressings and tapes, to the policies. Over the past 11 months we’ve become use to the ins-and-outs of our hospital and the array of medical procedures and supplies, so jumping into the care of another team and hospital meant they had to learn about us and we had to adapt to them – quickly. Our second day was spent in the SPA (special procedures area or OR) where all of his lines were placed. We found out quick just how different things were going to be from the moment we started discussing anesthesia and tapes used – which NONE of them are what we are used to, meaning we wouldn’t know if he would have allergy to them as he does so many. We know w
hat to, and NOT to, use at TCH. We got thru that and used some new things (which by the way we will try to carry some of our own things if we ever have to travel again). The next day we began the infusion and had a fall apart over the sticky heart monitors. We were totally expecting this and as much as we tried to prepare them for what he would experience, they weren’t – to the point of seeing them get squirmy over whether or not he was going to make it thru the trial at all. They started talking of medicating him the entire week and we weren’t going to agree to that. We knew that once we calmed him and got him back to “baseline”, he’d be fine – they had to trust us. They hesitantly did, thankfully, and the procedure started. Right before, we looked out into t
he hall to see a very serious police officer coming down the hall, followed by two white coats pushing a cart with a large metal box, followed by a well-dressed hospital “high up” and some nurses. As the police officer was coming toward us, telling people to please clear the way, I realized he was heading for our room. It was Jake’s radiation with a full-fledged, official escort. CRAZY! I wish I had a picture but frankly, I was stunned and it didn’t register at the time. We were cleared from the room and everything was a go. From the observation window, we watched the dosimeter on the wall register higher and higher and higher. I must admit, the anxiety was high and the tears flowed just knowing what we were doing to him. I’ve watched History Channel specials on Chernobyl and how radioactive that area is still, the physical ailments that people suffer, and it’s indescribable to know that such an extreme measure is being used to “help” our son… one that may hel
p him now, but at what cost we won’t know for years. It truly is about buying time. What we have learned the past few months is that this therapy is not a cure, it’s a stepping stone to get us closer to a place where there may be a cure. With refractory disease like Jake’s, he needs something to jump kick him back into cancer fighting mode – prayerfully, this will be it. But only time will tell and now, we wait… AGAIN! We did an MIBG scan this morning before leaving so we have a base line of where his disease is with this much radiation in him and we will scan again in 6 weeks to look for improvement. We came home with an 18 point bullet list of Jake’s isolation rules here at home.
To give a few little snippets of the week… At several times the pain for Jake physically or emotionally was really tough and the comfort of Blankedy was really missed. We are so proud of him for making it through those times. And Blankedy was waiting on the other side of the door the moment he stepped out! Thank you for your prayers over that, I know that was prayerful intervention right there. He must be in the midst of a growing spurt because he’s been eating like crazy and the two days before his infusion he ate and ate and didn’t poop like normal. We were worried with this since we knew he’d have a catheter and it might not be easy for him to potty. I tell you this because sure enough, Henry had to go in just two hours after the infusion began to help clean up so his meter was beeping like crazy while he was in there. He came out like a kid on major candy crack overload. He was such a spaz and freaking out about all the beeps he added to his dosimeter and had me rolling. It is a nerve-racking experience to hear the beeps and know that with each one, we are
closer to “our mark” of limitation for radiation contamination. One of the side effects of the treatment is the accumulation of radiation in the thyroid, so there is medication. But there is such an initial jolt of radiation that the meds aren’t able to diffuse it all so Jake’s little face/neck swelled up by the first night. It’s now gone down but it was very uncomfortable for him. Throughout the week, Jake was happy and cooperative – he had a Star Wars gun in there to keep him entertained and he liked to shoot our Radiology Doc when he’d come in for radiation measurements. Doc would go about his business and then zap Jake with his own special gun. Jake thought that was the funniest thing to set off Dr. Miguel’s radiation gun with his own body. One of his IV’s blew right out of the gate and the second one blew shortly after all the radiation was infused (but it held out long enough). So his third and final line, his chest port saved the week. A lot of the kids wear a gown and no undies all week because of the foley but Jake is a kid that wants undies. SO, we had to be creative and cut up one side of the leg and sew velcro to get them on/off the leg (the catheter line is attached to the
wall haz/waste system instead of a traditional bag so this was our special “invention”). Hey, maybe it’s a MILLION DOLLAR idea for the medical supply market! He was happy with it, so problem solved. We’ve noticed that Jake is limping, much like before his diagnosis. We’re guessing that since there is still a good amount of disease in that area, the radiation has settled heavily there and taking effect, hopefully. Everyone was super helpful and kind, and in the midst of our pre-start tears, Dr. Granger prayed with us as they started Jake’s infusion. God showed himself in the BIG, and the little things, all week long and we excitedly walked out of those doors this morning with one more treatment behind us. For that we give GOD ALL THE GLORY! Now, we wait. Jake’s counts will fall again, just like chemo, and as always, we will weather the ups and downs of platelets/ANC/hemoglobin, transfusions, isolation, long days at TCH and semi-routine, back-to-school activities. Be on the look-out… we have a special slide show coming soon!
It’s Jake’s fave song right now and I have to add, he was singing it all week long. The nurses would watch him on the monitor and crack up when they’d check on him. He takes after me and sings what he hears, or thinks he hears. Half the words are wrong but just keeps on singing with all his might; not even embarrassed since our words are usually better anyway (wink & a grin). Our hearts are full and we thank you for the prayers, texts, meals and help with our children while we were away. We left Cook’s feeling lighter, lifted, full of hope! For the first time in a while, we feel there is something brewing, good and strong, that healing is happening, and God is working in Jake’s little body; there will be a day that we walk out of those doors cancer-free.… and what a day that will be!
We have put our hope in the living God, who is the Savior of all men, and especially of those who believe. 1 Timothy 4:10 It’s a Glorious Day… Casting Crowns sings it best!
http://www.youtube.com/watch?v=KqrqPGt11bA
Looks like we are placing ANOTHER Warrior Jacob SHIRT ORDER! WOW! I can’t believe the number of you who have contacted us needing more… just WOW! So, if you, your team, employees, co-workers, friends want shirts let me know ASAP! Shirts from the last order shipped last week so be on the lookout! As for new, news… Jake will be admitted Wednesday for a few days. Part of MIBG therapy that he just finished means that the radiation will take his counts down similar to chemo but a bit differently – as in just as low, but with a longer recovery time. Because of this, he requires a “low dose, stem cell rescue”. Remember back in December when they harvested his stem cells, they hoped to get enough for a couple of treatments? Well, they will use some of them for this, and a LOT when he finally gets to Bone Marrow Transplant. So we go in Wednesday to sedate him and place his PICC line. They’ll begin the procedure on Thursday and keep him for a couple of days. For those of you interested, ” A PICC line is a long, slender, flexible tube inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access.” UGH!! As if he hasn’t had enough procedures and lines placed in his little body lately! The idea behind giving back his stem cells now, is that his marrow will deplete in about 2 weeks and it takes about 2 weeks for his own stem cells to graft and aid in his bone marrow recovery. They call this a “rescue” and it should help him rebound faster and with less transfusions. We already see plenty of those. Medical lesson over! As awful as this all is, it really is fascinating sometimes. Who comes up with all of this? Today we were in Clinic and it was full. We were actually in isolation because Jake has “regulations” about being in the general public because of his radioactivity but I stepped out for a few minutes to get something to drink for him and say hello to a couple of people. As I walked through the infusion room, there were kids and poles everywhere with chemo, blood, platelets, meds, just doing their thing. As I looked over and saw a mom I’ve never seen before, it made me think how “normal” this is for us now. I don’t know her story and I didn’t get to talk to her but I’ve been thinking of her a lot today and wondering, praying for her. While we were at Cook’s, Henry caught a family in the hall and road the elevator with them. They too, had that “deer caught in headlights” look. He just knew and started talking with them. They had just heard those words and everything was spinning for them. He talked to them for a while and learned of how they had gone from ER to immediate hospitalization because of what the Docs had found. I’ve been thinking of them a lot too. We were them just 11 months ago… stunned, staggering in a cloudy haze of new terminology and unknowns. With Childhood Cancer Awareness Month here, it makes me think of all the new families this month that will hear, “it’s CANCER”. I just want to take this time to THANK YOU! IF you are reading this, YOU CARE! If you are reading this, you are becoming AWARE. If you are reading this, you have an OPPORTUNITY to make a DIFFERENCE. Maybe you haven’t done a whole lot yet, maybe you have… either way, I HAVE FAITH, that you will. At some point, a situation will come before you, big or little, and you will be a VOICE for our kids. My God bless at that very moment! With that said, here is something small you can do. Watch this. SHARE THIS! Please pass it on! Many of you have already seen this on my FB but we finally got it on Youtube so now you can share it with everyone! And since it’s on Youtube, it can be e-mailed, FB shared, tweeted, pinned……. Awareness of these kids can bring change, and that will eventually bring a cure! [youtube=http://www.youtube.com/watch?v=A_XmnJQK01s&w=580] Last week the East Montgomery County Chamber of Commerce held their meeting (many of them dressed in GOLD) and were able to view Jake’s Stand Up video. At the end they all stood AND THEN, they recorded a get well message for Jake. Take a look! They are everyday people, who took time to do something special to raise funds and STAND UP for Childhood Cancer Kids. I can’t even put into words the feelings that came over us watching this. Talk about something amazing to come home to! [youtube=http://www.youtube.com/watch?v=XnHsLtQ9EwA&w=580] The world is lighting GOLD more this year than ever before. There is still time… it’s only the 9th… we can still GO GOLD! Paint your nails, wear a gold ribbon, hang a bow on your mailbox, paint a ribbon on your car window, work window, put something on your FB, your work e-mails, wear your Jake shirt. Be creative and spark conversation… let the world know that KIDS GET CANCER TOO!
