Category: Hospital Stays

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!

Quick back to back posts, I know!  But we can use some prayers.  The Docs made rounds a little bit ago and today is going to be full of changes.  They took the pain pump away minutes ago and they are reintroducing the oral meds (which he calls “poison”). They are also reducing his TPN, and lastly, they are changing out his chest port needle.  That last one is the one that I am most anxious about.  As you all know he has such a hard time with access and de-access and we are about to do it all in one day.  A matter of minutes apart, actually.  And all of this with a kid that has a very tender belly and a scar that almost circles his front and side.  Rounds took place and in their calm, yet forceful Doc way, they said “Mom, this is how we get you all home.” DUH! Followed with, “You just have to make him do it.” These are not our Docs, they are the young, rounding, barely out of school Docs… AND HAVE NO KIDS!  It really makes you feel about 3 inches tall but madder than all get out.  I would really like to hog-tie a few of them, throw them in the elevator and push the alarm button.  Do they not know that we want to go home worse than they want us to go home? The anxiety is building for Mommy.  And to make things more tense, Saraben (our Child Life Specialist), Jake’s comforter, my back-up, my friend and help, the one who eases my nerves as much as Jake’s, is not here today.  CRAP!!!!!!!!!!!!  Honestly, I’m trying hard to hold back the tears and just remember to take it moment by moment.  I know that this day will pass and tomorrow will be a better one, but if you will please pray that I keep my hillbilly, hog-tying, eye rolling, want to curse you, self in tack, I would be so grateful.  And bigger prayers that the de-access and re-access go OK, that we don’t hurt Jake in the process of trying to keep him safe and hold him down, and that he isn’t terribly traumatized for the rest of the day.  These are just a few of the things that we cancer families live with and why we need better treatments… better yet, a cure!  Please, please, pray for that too!!!!!

It’s been quite a ride this week. We were doing so well the first few days out of surgery, only to take a few steps back, but hopefully we are rounding a corner again. Jake starting having severe abdominal pain Tuesday and Wednesday (much more than just the pain from his incision), then heavy diarrhea set in, and then blood in his stool. They ran every culture, test and scan imaginable to rule out anything that might possibly take him back to the OR, and finally came back with a confirmed case of c-diff. It’s a bacterial infection that happens to a lot of patients after surgery or those with jeopardized immune’s and it’s highly contagious. Seems to run rampant in hospitals, actually. So, while Jake is healing from being almost severed in half, he’s working around a very unhappy and irritated colon. Today has been one of the better days, although you can look at him and see how sore and worn down his little body feels. The c-diff reminds me of my colitis episode. It’s extremely painful while it’s inflamed and the days after are super tender and uncomfortable, and food is NOT your friend. This has been an interesting stay as we have stayed on 3 different floors and four rooms in the past 10 days. I am the queen of packing up and moving on down the hall… or floor… or wherever. We sat on the surgical floor for a good part of our stay but requested to get to 9 just as soon as they would allow. Jake is a cancer patient first, surgical patient temporarily, and we discovered quickly that he needed to be in the hands of oncology nurses. We had very nice nurses but they aren’t trained in the ins-and-outs of cancer patients, what drugs they are allowed and not allowed, how they should be administered, and what may or may not be combined. I’ve learned just how important it is to watch and question anything that makes me feel uneasy. I’m his protector and accidents are made all the time, never intentional (why they are called accidents), and I’m finding that I know his history and his disease better than anyone. Lack of knowledge and “normal protocol” almost landed Jake in serious situations on two occasions. But we’re back here on 9 and happy to be “home”. As for being “home”… about 4 AM there was a LOT of banging going on in the room next door for quite some time so I stepped out to ask if everything was OK. About that time, a door open a few rooms down and a dad yelled out, “can someone stop that banging!” A few minutes later, a nurse was in there telling them to stop (which they couldn’t hear because of the noise). It went something like, “well, ma’am we DO have a work order”. She won and it stopped. But when we woke up this morning, we had a tub full of nasty! The commotion in the middle of the night worked itself into our pipes. So we moved rooms… again… hence the 3 floors and 4 rooms in 10 days. As for now, we don’t have a firm release date – Tuesday or Wednesday have been thrown around so we’ll pray for that. BUT Jake has two more hurdles to jump. One, is to get off the pump and start taking his pain meds orally. The second is for him to eat and drink. This one may be the hardest as he is really protecting his tummy. We would be so thankful for your prayer over those things. He is getting up and around a bit more so that is encouraging but we just want to be home. The 9th has become our home away from home, and there is comfort in the community found in these halls. BUT there is real truth in the saying, “home is where the heart is”… we miss our family! On a lighter note…

I’m ALL CAUGHT UP on my Duck Dynasty episodes three times over! “That’s right jack!”