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”.
Good news… we moved from the 14th Floor to the 9th Floor this afternoon!!!! I never unpacked, so when Nurse Esther came in with the news I said, “Great… are you talking 30 minutes or a couple of hours cuz I’m ready, I don’t have to pack anything, it’s all bagged up”. I think I startled her when she said about 30 minutes and I gave a “woo hoo”! Then I had to appologize and let her know that it had nothing to do with her… she was great. And she really was wonderful, but can I tell you the relief??! And I have to say the 9th Floor really is a different floor in so many ways. There is a homeiness here. The kids play in the halls differently here. The family room is full of families and treats and Thanksgiving dinner brought by patients of the past who have lived this life. There is a sense of family here. There is a familiarity since the children are “regulars”. Walking through the doors and onto the floor there was an immediate comfort in seeing the nurses that we are getting to know better and better with each stay. The pity party of yesterday is over and today is Thanksgiving… and we are thankful. As scripture states… Give thanks always for all things to God and the Father in the name of our Lord Jesus Christ … Ephesians 5:20 We are thankful that TCH exists to care for our baby. We are thankful that there is hope for Jake. We are thankful that we have him here, with us, right now. We are thankful that there is treatment and there are those who have the knowledge and the heart to heal. We are thankful for our family and all of our children. Although much is centered around Jake right now, we are so very thankful for all of them. We are thankful for the celebration of Meghan’s 26th birthday tomorrow and we are thankful to celebrate Ryan’s 9th birthday on Saturday. We are thankful for friends and family that have surrounded us and kept our world in motion these past weeks… without you, where would we be? We are thankful for our church and the love and letters and support they have showered us with. We are thankful for all of those we know and those we’ve never met who continue to rally around Jake. We are thankful that our precious little boy is bringing people together and reminding us that cancer strikes anyone, anytime. It happens to the boy next door – it’s real and it’s aweful. Yet in the midst of this struggle there is beauty in the love and kindness and goodness that comes at the most unexpected times. We are thankful for the gift of life that God grants each one of us. We Are Thankful! And our hearts are full… our bellies too!
