I have been following the story of a little boy named Jack. A friend of mine has a son who was in the hospital with Jack. She told me about his Care Page. He is very sick and has been hospitalized for almost the entire first year of his life. He recently received his second transplant. The first was not successful. This little boy is fighting for his life. His parents post on a Care Page and I have to say I wait for updates even though I don't know him personally.
His parents have been through so much. They are strong people. They along with Jack are fighters. The Mom posted an update the Care Page today and it had me in tears. It reminded so much of my own story of being pregnant with triplets and not knowing the outcome. I know a sick child and being pregnant cannot be compared but I wanted to share her post and then tell you a story so similar. Here is her post:
Day +7 (Take II)
Posted 9 hours ago
Hello all you Jack fans. While driving back to CHOP after my grandfather’s funeral, I was thinking of what I could include in today’s post. There are so many feelings floating around inside me. It’s almost as though this emotional roller coaster we’re riding keeps getting scarier…extra loops, faster speeds, steeper drops. One minute I feel like I couldn’t possibly be more optimistic (Jack will be OK – I just know it.) and the next minute I’m rubbing Jack’s head with tears rolling down my face thinking the unthinkable (What if Jack gets to the point where his body can’t fight any longer?).
Being surrounded by family and friends over the past two days was emotionally exhausting. Finally able to receive personal hugs from people who have been supporting us from a distance for so many months was harder than I imagined it would be. Reading messages posted on the board gives us a sense of how many people care, but being face to face with those same people made me realize how many hearts ache for my baby, for my family. As weird as this may sound, last night, my twilight zone life became real.
Walking up to my grandfather’s casket was easier than I thought it was going to be. I’ve always dreaded the day where I’d have to say goodbye to him, but it wasn’t anything like I imagined. As I looked at my grandpa lying there all I could say to him was, “Please take care of Jack. Watch out for him. Do your magic. I know you have it in you.” And I felt guilty for not saying “I love you and I’ll miss you. Thanks for all you’ve always done for me – for our family over the years.” Of course I eventually said those things, but initially, my mind went right to Jack, as it always does. Jack consumes every minute of my life. I walked around the funeral home sick to my stomach wondering how I could possibly handle being at my son’s funeral if it ever came to that.
My dad gave a beautiful Eulogy this afternoon. For those of you who don’t know my dad, he’s the dad every bride dreams of her husband becoming. His heart is bigger than his 6’2”, 200+lb body. For years, my dad took care of my grandfather and the way he spoke about his dad just made me proud to be his daughter. At one point during the Eulogy he told a story about my grandfather’s last night. Grandpa woke up out of a deep sleep and asked if Jack had died. He woke up a few times that night asking the same question, each time being reassured the baby was fine. Early the next morning, he passed away. As my dad shared this story (between tears), he proceeded to say it was Grandpa’s time to go because he truly believed he had to make sure Jack would be OK. As I listened to my dad speak tears rolled down my face and I began to feel less guilty. He just lost his dad, but he shared my feelings. He too was thinking of Jack and how my grandfather’s job now is to get Jack healthy.
I’ll try to hold on to that thought over the next few days. It’s been a week since Jack’s transplant and although he’s been stable for five or six days, there are a ton of things that can go wrong. He’s very fragile and one step in a backwards direction can be fatal. We need him to start engrafting, but once he does we worry about leaky vessels because he’s already so puffy as it is. We worry about infection and possible risks for infection – like his central lines, foley catheter, and ventilator which has already caused a positive culture for pseudomonas. We worry the Tobramycin the Infectious Disease doctors started today for Jack's pseudomonas won't work and it will spread to his blood stream. We worry about fevers. We worry about Jack's blood pressure. We worry about his huge liver getting in the way of his new stem cells finding their way to Jack’s bone marrow. We worry about Jack’s kidneys. We worry about breakdown and blistering that is occurring on Jack’s skin. We worry about the disease and whether it’s still overly active. The list can go on and on. We just worry day and night.
Everything needs to go very smoothly over the next week or so. No setbacks at all. I had a conversation with one of the PICU attendings when I got back to the hospital this afternoon. She looked at me with “BooBoo” eyes, which Chad and I have grown accustomed to. She told me straight out that she is concerned that Jack may not make it through this transplant. They are not giving up on him, but the reality of it is that he is very critical.
We know how sick Jack is. We’re not denying that. But we also know how much of a fighter Jack is. He’s been through so much and has continued to beat the odds. We believe in him and his strength. Please continue to pray, and send Jack all the positive energy you can. Also, talk to your angels – I know I will be.
Thanks for your continued support. I apologize for my rambling during this update. I know it’s not a normal “Kristy & Chad” post but the days we are living are everything but normal.
P.S. Please continue posting messages to Jack. He needs to hear how many people are cheering him on. Positive upbeat messages of encouragement mean so much.
I believe her grandfather will take care of Jack. Here is why I identified with her story so much:
When I was pregnant with the triplets my Nana was nearing her 99th birthday. She was perfectly healthy and doing great in October. I found out I was pregnant in September and shared the news with her. She was excited and nervous and couldn't believe I was having three babies. By December her health turned for the worse. It was fast we really didn't see it coming. But she was almost 99 years old. A few days befor I was put on bedrest I went with Frank to visit her in the hospital. I became so emotional and overwhelmed Frank made me leave. I didn't even recognize my Nana. Things went so quickly. It was a Wenesday night. Friday afternoon on my way home from work (it was my last day) I decided I needed to stop and see her. I knew she didn't have much time but I needed to see her again. I was alone. When I got to the hospital no one was there. Both my father and uncles were on their way.
I went into her room and she was very peaceful. Still hanging on. I sat down next to her and started talking to her. I asked her to please watch over me and the babies. I asked her to do all she could to help me make it through this pregnancy with three healthy babies.
At this point I had not told ANYONE what we were planning on naming the babies. I decided she needed to know. I held her hand and told her they would be named : Ciaran Thomas, Colin Francis and Cormac Robert. As soon as I told her the last name she took her last breath. The nurses came in and said she was gone but I already knew. I firmly believe she is the reason I have three healthy beautiful boys today. I also believe she hung on long enough so I could tell her her last three great granchildren's names. She has 12 great grandchildren all togther.
ANway, this happened on December 23rd and although that Christmas was so for all our family. The story I shared with my family made everyone feel a little better. I wasn't blogging at the time and wanted to make sure I wrote this memory down so it is never forgotten.
Kristy, Jack's mom, reminded me of this story.
So, to everyone who reads this, I ask only one thing of you today. Please talk to your "angels" and ask them to keep an eye on Jack.