{"id":2555,"date":"2013-09-02T13:56:35","date_gmt":"2013-09-02T19:56:35","guid":{"rendered":"http:\/\/jacobhickford.com\/?p=2555"},"modified":"2013-09-06T22:52:39","modified_gmt":"2013-09-07T04:52:39","slug":"mibg-mission-complete","status":"publish","type":"post","link":"https:\/\/jacobhickford.com\/?p=2555","title":{"rendered":"MIBG – Mission Complete"},"content":{"rendered":"

\"2013-08-29<\/a>We sit in the truck on the way back from Cook\u2019s Children’s in sheer relief. We made it!\u00a0 The week is over and we\u2019re heading home.\u00a0 It was an eventful week. So much to tell that it may take a couple of blogs.\u00a0 Walking out of those isolation doors with Jake this morning was THE BEST feeling in the world. I\u2019m guessing that it will be similar to when we finally hear NED.\u00a0 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.\u00a0 Jake’s doing GREAT!\u00a0 Like anything else, every hospital is different from the dressings and tapes,\u00a0to the policies. Over the past 11 months we\u2019ve 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 \u2013 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\u00a0 – which NONE of them are what we are used to, meaning we wouldn\u2019t know if he would have allergy to them as he does so many. We know w\"2013-08-28<\/a>hat to, and NOT to, use at TCH.\u00a0 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\u2019t – 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\u2019t going to agree to that. We knew that once we calmed him and\u00a0got him back to \u201cbaseline\u201d, he\u2019d be fine –\u00a0they had to trust us.\u00a0 They hesitantly did, thankfully, and the procedure started.\u00a0 Right before, we looked out into t\"2013-08-28<\/a>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 \u201chigh up\u201d 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.\u00a0 It was Jake\u2019s radiation with a full-fledged, official escort.\u00a0 CRAZY!\u00a0 I wish I had a picture but frankly, I was stunned and it didn\u2019t 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.\u00a0 I must admit, the anxiety was high and the tears flowed just knowing what we were doing to him. I\u2019ve watched History Channel specials on Chernobyl and how radioactive that area is still, the physical ailments that people\u00a0suffer, and it’s indescribable to know that such an extreme measure is being used to \u201chelp\u201d our son… one that may hel\"2013-08-28<\/a>p him now, but at what cost we won\u2019t 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 \u2013 prayerfully, this will be it. But only time will tell and now, we wait\u2026 AGAIN!\u00a0 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.<\/p>\n

 <\/p>\n

\"2013-09-02<\/a><\/p>\n

To give a few little snippets of the week\u2026\u00a0At several times the pain for Jake physically or emotionally was really tough and the comfort of Blankedy was really missed.\u00a0 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!\u00a0 Thank you for your prayers over that, I know that was prayerful intervention right there.\u00a0 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\u00a0his\u00a0meter 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\u00a0he\u00a0added to\u00a0his dosimeter and had me rolling.\u00a0 It is a nerve-racking experience to hear the beeps and know that with each one, we are \"2013-08-29<\/a>closer to \u201cour mark\u201d of limitation for radiation contamination. \u00a0One 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\u2019t able to diffuse it all so Jake’s little face\/neck swelled up by the first night. It\u2019s now gone down but it was very uncomfortable for him.\u00a0Throughout the week, Jake\u00a0was 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.\u00a0\u00a0Doc would go about his business and then zap Jake with his own\u00a0special gun. Jake thought that was the funniest thing to set\u00a0off Dr. Miguel’s radiation\u00a0gun 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).\u00a0 So his third and final line,\u00a0his chest\u00a0port 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 \"2013-08-31<\/a>wall haz\/waste system instead of a traditional bag so this was our special “invention”). Hey, maybe it\u2019s a MILLION DOLLAR idea for the medical supply market!\u00a0\u00a0He was happy with it, so problem solved.\u00a0 \u00a0We\u2019ve noticed that Jake is limping, much like before his diagnosis. We\u2019re 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.\u00a0 For that we give GOD ALL THE GLORY!\u00a0 Now, we wait. Jake\u2019s 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.\u00a0 Be on the look-out\u2026 we have a special slide show coming soon!\u00a0 \"2013-09-02<\/a>It\u2019s Jake\u2019s fave song right now and I have to add, he was singing it all week long.\u00a0 The nurses would watch him on the monitor and crack up when they\u2019d 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\u00a0his might; \u00a0not 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.\u00a0\u00a0We left Cook\u2019s 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\u2019s little body; there will be a day that we walk out of those doors cancer-free.\u2026 and what a day that will be!\u00a0 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\u00a0<\/em>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>It’s a Glorious Day… Casting Crowns sings it best!\u00a0 http:\/\/www.youtube.com\/watch?v=KqrqPGt11bA<\/a><\/i><\/b><\/p>\n","protected":false},"excerpt":{"rendered":"

We sit in the truck on the way back from Cook\u2019s Children’s in sheer relief. We made it!\u00a0 The week is over and we\u2019re heading home.\u00a0 It was an eventful week. So much to tell that it may take a couple of blogs.\u00a0 Walking out of those isolation doors with Jake this morning was THE … <\/p>\n

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