Category: Hospital Stays

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 what 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 the 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 help 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

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!