I’ve been a bit MIA, I know. I just couldn’t bring myself to sit here and write. To update our last post, we ARE at TCH. We tried so hard to keep Jake from being admitted and he was so cooperative in trying to stay home. As we wrapped him up and strapped him in the car Tuesday, Henry and I were overcome with him pleading, “Please, Mommy, please let me stay home, I took my medicines, I drank. I’ll take more medicines, Daddy. Please don’t take me to the hospital.” It’s so hard to hear this from your child and know the things they will do to him once he’s here, all in the name of helping him. These are the behind the scene things that take place in our world. Then the comforting begins as best as possible of how brave he is, how much we love him, how he’s done NOTHING wrong. When we got here, his ANC (white count) was a BIG FAT ZERO. His platelets were 4 and his hemoglobin was 5.2. For those of you medical friends, you know what this means… as much as we wanted him home, we needed to have him here. We did go into the ER with a plan, preparing him for what would happen and things went as well as we could hope for. Some good news… once we got out of the ER and to our 9th floor, home-away-from-home, we got a coveted corner room. These rooms have a big bathroom and more space – enough that I can do my workout’s with no modifications for running into anything! (Hey, you take the good with the bad.) As of now, he’s sleeping and his temp has gone back up to 102. He’s fighting mouth sores and thrush from the chemo and it may be turning into HSV. We’re thinking that much of this has to do with him going into chemo right after his bout with RSV. We went into that last chemotherapy with his counts at 65K when the baseline they look for is 75K, but because he had a good amount of time between chemos, they felt he could push in. Lesson learned, he just hadn’t recovered enough. It’s been a tough week to say the least. A little boy that we follow, passed away Monday. Neuroblastoma took him far too early. This has weighed heavy on my heart. It wasn’t even his cancer that took him, but a random infection. Jamie had actually beat his cancer once but it had returned. To go thru so much, succeed, relapse, and then lose the battle over something small and bizarre is unthinkable. As I’ve sat in this hospital room watching Jake’s fever go up and down, I’ve thought about the Inglis family so much. Jamie liked many of the same things that Jake likes. He had big, beautiful, blue eyes and blond hair like Jake. He had the same, exact diagnosis as Jake. I’ve mentioned before… as we get connected into this cancer community, we read each other’s blogs, follow each other on FB daily, we are a community that loves on one another, we pray and hope for one another. And we all hurt for one another when our children suffer. And when we lose one, our hearts break, for the reality of the situation is
thrust in our face. The fear of how often this happens and how unpredictable this disease is, becomes so real. There are happy stories, children are surviving but so many are relapsing. Neuroblastoma is cruel and the disease may disappear into remission for a while but the cells have memory and for many children, the cells regenerate in new ways and become immune to past treatments. This is what makes a relapse difficult to treat. Treatments become tricky or ineffective as the body is resistant to the standard NB protocol. Every single day cancer takes SEVEN children. I hurt just typing that. Seven families feel such unbearable loss every single day. This week, on Monday, January 15, 2013, Jamie took his last breath here on Earth in his mother’s arms and he entered heaven’s doors. Today he sits in Jesus’ arms and while that should bring comfort, it hurts. We must bring awareness to this awful, awful disease. Please visit
www.thetruth365.com often. If you are a FB’r, please *like* their site and follow them. *Share* their messages when they post. They are doing big things each day and there are little ways you can help that don’t take much effort or time. Mostly, please pray for the Inglis family. When I think of all of the trauma Jake has been through with his treatments, I am trying to think of Jamie as rescued, protected, and delivered perfectly and peacefully to our great Healer. May God bless Jamie’s family as he rests in peace.
“Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.” Psalm 91:14-15
Here we are a week later… ((sigh))! Jake is doing much better, his energy is returning and his mouth sores are improving. Unfortunately, his counts aren’t climbing as fast as we’d like and here we sit. Yesterday, his Docs allowed him to disconnect from his lines for a little while and he loved the freedom. SO much easier to get around the room when he doesn’t have to push a big pole around! His nurse also let him flush is own line again – which he found “really, really cool, mom”. And she let him turn his machines back on. For a techy kid, this kept his attention and had him asking lots of questions. He’s actually doing well enough that our nurse had to come in and gently ask him to start turning it down a notch as he was jumping on Emma’s air mattress
. He’s lost a little weight again and you can see it in his face most but we’ll work on fattening up once we’re home. There are a few things that Jake is struggling with that we could use prayers for… MEDICINE being the biggest. He’s fighting us in a big way. His taste buds are so jacked up with the chemo that many of his meds gag him. In fact, this is affecting many of the things he drinks, as well, so getting fluids in him is a struggle. If you will please pray specifically that he can begin to tolerate taking the medicines and mostly, pray for him to cooperate in a way that doesn’t take tears, threats, arguments and pretty much WAR between mommy and son… I would be so grateful
. We could use some prayers for keeping him hydrated, as well. At the moment we are unsure of how this will affect our “road map”. We were scheduled to be inpatient for our next chemo on Thursday for 5 days. That is pushed back for sure. I assume this will also push his surgery that is scheduled for February 13th. When we meet with our team later this week, we will know more and pass that information along. For now, we are hoping, PRAYING, that tomorrow is our “lucky day”. We’ve been hoping to go home since Sunday so I feel kinda like rolling some dice at this point – as it feels kinda like a crap shoot. Will we stay or will we go?
