Sadly, the ER was calling our name last night, and today we sit in TCH, AGAIN, with no discharge in sight. Yesterday we were in Clinic all day with platelet and blood transfusions so we could “juice up” for the weekend. Jake looked great, in fact everyone was surprised that we were having to transfuse. His color was good, he had energy, he was smiling and eating, but his platelets were 5, his hemoglobin was 7.1 and his ANC was a BIG fat ZERO. So we transfused and at the end of the day, we happily left to prep for a weekend of Thanksgiving, Meghan’s birthday and Ryan’s birthday, plus Two Mom is here to visit… a full weekend of at-home stuff, including putting up the Christmas tree (which Jake has been so excited about). Then he started getting warm, and a bit warmer, and a bit warmer, and HOT. CRAP! It’s pure anxiety as you watch the numbers, knowing there is nothing that you can do. Jake’s body can’t fight fever, he has absolutely NO white blood cells and there is no way that we can get it down on our own. Of course we tried anyway with lots of fluids, undressing him, making him flap his arms so he could air out his underarms – just in case – you ever know… and he thought this was funny. It’s crazy, for a kid whose fever was going up, he was cooperative… but he knows he doesn’t want to be here unless he has too and he was doing what ever we asked with no questions, no complaints. We must have taken his temp 100 times and with 4 different thermometers… wishing for just one of them to say something different. Eventually we looked at each other knowing there was no option, fever means hospital. I have to admit, I’m so disappointed… and sad… and pulling a big ‘ole “woe is me”. We were so looking forward to this weekend and Jake has done SO WELL this round. This just doesn’t make sense, he looks amazing compared to what neutrapenic fever looked like last time – and this makes 5 hospital stays in 7 weeks. We have so much to be thankful for… I know this. But spending Thanksgiving and the weekend here, away from everyone, away from our home, and our dinner, and our dinner table has me feeling weepy. As they rolled Jake from the ER to his room in the early hours, he didn’t even open an eye. He was wiped out, so when he woke up this morning and realized we were still here, there were tears, big crocodile tears and quiet sobs to go home. My heart knows what he’s feeling. The craziest part of this stay is that we aren’t even on our floor. Our home away from home is the 9th Floor – Oncology. Cancer patients are to be housed on the 9th Floor, no matter, but it’s sick season and the floor and hospital are FULL. Our 9th Floor home with familiar nurses and playful hallway with special friends is full. So we sit on the 14th Floor of West
Tower – the Respiratory Floor… home of RSV and pneumonia and other respiratory illnesses. This has us completely isolated, signs on the doors, docs and nurses entering in full cover and masks. We truly appreciate their caution and care for Jake’s situation and can’t help but think that they too would prefer to be home. It’s especially hard because he actually feels pretty good and could be riding the trikes rather than being cooped up if on the 9th Floor. The worst part is that the playroom is right across from our door… we can see it through the glass window in our door, we can hear the kids. Our energetic toddler wants out! He wants to play too. It’s scary, really. This is NOT the floor for a neutrapenic cancer patient with no immune system. Something like pneumonia can bring a multitude of horrible things for him and I’m afraid to even go to the family area where the ice machines and coffee are. There are kids and family members hanging out, some of the kids are coughing and they are in gowns so you know they are here for a reason – what if I bring something back into the room? They too are nervous and are trying to get us moved. Several different hospital reps have come in today to say they are working on getting him to the 9th. I am appreciative of their effort and constant communication. Right now, we have markers that we have to check off in order for us to go home… 1. Eating Drinking, Peeing – check. 2. Fever free for 48 hours 3. Waiting on blood cultures to come back. 4. ANC (white cells) to recover. (This should start rising anytime since we are 10 
days out from lst chemo, but because he may be fighting something, it may be delayed.) This stinks! Look how good he looks?!! See… woe is me, woe is us! What I should be doing is praying for these families who are here too and be thankful that we have a room and aren’t down in the very crowded ER. I can’t seem to do that right now, I just want to go home, I just want to take my baby home, I want to spend time with my mom, eat Henry’s delicious Thanksgiving dinner, and decorate our Christmas tree. So, I call on our sweet friends and family… you, our loving prayer warriors to pray for all these families who also would love to be home and are missing their families, their traditions, their visions of what should be. Tomorrow will be better and we’ll be thankful, for deep down I do know there is so, so much to be thankful for. But today I’m pulling a Scarlett for “tomorrow is another day”.
Road Map
Many of you have asked about the comment made in the last post regarding the transplant division. In my non-medical way, I’ll try to give you an overview of Jake’s “road map” – the term they use for his treatment plan. Jake will have 3 sessions of chemotherapy that include 5 rounds each – numbers to paper that is about 15 weeks per session. Overall, that is 15 rounds of chemotherapy, 15 different stays in the hospital at about 4-5 days each (not including surgery and other things). We are at #2. The treatments are 3 weeks from day zero, meaning they are actually about 2 1/2 weeks apart (as long as his counts recover properly each time and there are no infections to throw us of – like recently). During this first 15 week session, they will collect, or “harvest”, his own stem cells and freeze them to be put back into his body later, thus the transplant division comes into play. This will be done somewhere between chemo 4 and 5. At the end of the 1st session, they plan to take Jake into surgery to remove the large mass. Right now the chemo is shrinking the mass in his abdomen (the one about the size of a small grapefruit). They feel that after 5 chemo treatments, this mass will shrink as small as it is going to. The remainder of the chemotherapies won’t really make that mass smaller, those chemos are to continue working on all of the cancer in the bones and liver. After the surgery, Jake will have another session of chemotherapy – again, 5 sessions in Round 2 (another 15 weeks). At the end of this time the stem cell transplant will take place. This should take us somewhere into the summer hopefully, because we will need to farm out kiddos as Jake will be hospitalized in isolation on the 8th Floor for 30 days. My understanding is that we will then go on to Round 3 of chemotherapy – another 5 sessions (15 more weeks), then radiation, followed by Accutane treatments. This will finish up our first year. At that time, we will come together, assess where he is, and pray for NED (No Evidence of Disease). However, many children are not completely disease free in which case, treatments pursue. If this is the case, our discussions will center on if we can stay in Houston or head to one of four cities that continue with the next phase of Neuroblastoma treatments. All of this can change at a moment’s notice… it is his “road map” and we’re told to expect detours along the way. We’ve already seen how it truly is day by day. It’s all just a big lab project and sometimes I feel like our son is the center of someone’s science fair. I just remind myself that God gave us these things called science to do good, to heal, to allow life to pursue… that helps me close my eyes and comfort Jake when my baby is crying from all the pricks. And this information gives us something in which to plan from… sort of.
Hope Is Here
First… our day was long, but fine. Not because of anything worrisome but because TCH is renovating one of their pharmacies and things are a mess. OR at least they were today! What should have been an in-and-out day with labs and a shot, kept us there for 5 hours, plus drive time in and out of town (made for a 7 hour day for Jake). They somehow messed up his Nulasta shot and couldn’t seem to get it up to the 14 Floor for the life of them. It wasn’t just us, the poor kiddo hanging out near us in the Infusion Room waited on his transfusion for 5 hours, then was going to have to infuse for 5 hours – poor guy! But we are home now and we don’t have to go back till Tuesday! His ANC didn’t even register… it’s “zero’d out”. That’s the goal – bottom him out – KILL MR. C! Next, I have news that I am so happy to share (and for those of you that are FB friends you’ve seen some of this)… As we go thru this journey, there is a community of children like Jake. We follow one another. We may live in different cities and many of us have never met, but you wouldn’t know that. We have a connection. It’s called cancer… sometimes it’s Neuroblastoma, or Leukemia, or Lymphoma, whatever… but we’re connected. I’ve been following a little boy named Nate for a few weeks (same diagnosis and about the same age). Today, after 16 months of treatments they announced that “Nate is NED!!!!” NED! NED! – No Evidence of Disease! We LIVE to hear these words one day! I have happy tears for Nate and his family. There is hope! There is life! There is a happily ever after!!!!!!!!!!!!!!! Tonight, I pray for all children (for all people) who endure the pain, the fear, the needles, the loss of hair and awkward stares, the isolation, the long hospital stays, the upset tummies, the rashes, the bandaids and tape, the ER visits, the mouth ulcers, the medicines, the IV poles, the tests and scans and labs, the endless days in Clinic, the chemotherapy drugs, the lack of appetite, the weight loss, the mouth washes, the poking and checking, the multitude of student doctors and questions, the sadness and loneliness, the home therapies, the ports in their little chests and so much more. I thank God for each one of them and their fighting spirits to push on… I pray that they will all know NED one day very, very soon! There are so many miracles waiting to happen. We have faith that we too will be NED.
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Right now as I type, my music is playing this song and hope is here… “I’ve seen miracles just happen, hope that doesn’t ever end, even when the sky is falling. I’ve seen silent prayers get answered, broken hearts made new… that’s what faith can do!” by Kutless. HOPE IS HERE! Right here in my kitchen, at my computer, in Nate’s home tonight, in yours too!