Sydney and I went to church and spent the morning together. She had bought Easter candy and cute little mini baskets for her and Jenson, so we put them together this morning and headed to the hospital.
When we arrived our favorite nurse Ginny says to Sydney, "Sydney... there is a big surprise for you in Jenson's room." We walk into the room and see 2 HUGE baskets - 1 full of everything a little boy would love and another a little girl's dream basket. Jenson wasn't feeling well enough to look at his, but Sydney couldn't have been more excited. She found a sparkly purse, princess magnet dress up set, playdoh, colored bubbles, a scarf, a Hello Kitty lipgloss/make-up kit, coloring books and more. We thank Ginny for thinking of Sydney too, and she says, "It's important for the siblings also. People forget they are going through a lot too." So true.
Doug then told me there was bad news. "It's really bad", he says. He found a "bump" on Jenson's head. My heart dropped and as I felt it, there was no mistaking it. He says he told the doctor this morning, and they want to do x-rays ASAP. In walks Ginny and asks if we're ready to head to x-rays. We decide Doug and Ginny will go to the x-rays and I'll stay with Sydney. I'm still shell shocked from this new development.
They get back from x-rays, and it's obvious today is very different. Jenson clearly feels awful... he can't get comfortable at all. No joking, laughing, or glimpes of his normal personality today. Just agony and moaning. Sydney gives him his cute little Easter basket with candy, and he gives us one of the only smiles of the day.
Sydney and Doug leave for a few hours this afternoon for some daddy/daughter bonding time.
The afternoon doesn't get any better. Jenson just can't get comfortable... he's clearly nauseous and says "Tummy hurts" and then starts coughing so I grab the "pink hospital bucket" and he proceeds to throw-up multiple times. He's still got the fevers and is constantly breaking out into sweats. The moaning continues all afternoon. He wants me to hold him, but when I pick him up he quickly realizes he needs to lay back down in his bed so he won't get sick. He's uncomfortable peeing and pooping.
It's obvious he feels miserable. It's also obvious this isn't just the tailend of the enterovirus he's been fighting. I talked to our new nurse and tell her I'm really concerned. This is just not like him. It's not my boy. Something is really wrong. What do they think is going on?
Several hours pass pondering that things really aren't right. Why God? What is wrong with my little boy?
Then in walks the doctor. The x-rays are back. She suspected the bump on his head was a histiocytosis (LCH) lesion, and it is. His skull has several lesions she says. "How many is several? Two? Ten?", I ask. Her reply, "Too many to count".
Too many to count. Whoa. Too many to count. I can't hold back the tears, they just go rolling out of my eyes. The doctor grabs my hands and says "I'm so sorry." The waterworks continue.
She goes on to say, "The lesions aren't just in his skull, they are also attacking other parts of his bones, in his arms and legs as well. There are only a couple in his arms and legs unlike his skull." She shows me the x-ray pictures, and it's obvious. The skull one is painful to look at knowing that the slight different coloring in all those areas are lesions, not normal slight color variations. Our poor sweet boy.
She advises given this new development we need to do his MRI, CT scan, and a PET scan ASAP, so in order to do it quickly we'll need to do a blood transfuion so his counts will be at a place where he can have anethesia. The results of these will show whether the disease is also attacking vital organs (like the liver, kidney, spleen, brain) in addition to the skin, bone, and GI issue. She says they can also make sure he doesn't have some type of "infection pocket" in his GI tract that can't be treated with antibiotics that could also have been causing all these fevers. We obviously need to get him a chemo treatment as quickly as his body can take it as his disease is clearly, seriously out of control.
Not only is this awful news that is breaking my heart, but Jenson keeps going downhill. The last time I saw him feel this awful is right before we started chemo 1.5 yrs ago when we almost lost him. He feels miserable. This is so difficult to watch as a parent because you know something is horribly wrong and there is nothing you can do about it. It gives new meaning to the word "helpless". I'm begging God for more time with him and mercy.
I have to call and break the news to Doug. He's in a restaurant with Sydney, and we're both crying on the phone. This breaks my heart too.
In comes our new nurse with the "consent" form for the blood transfusion and I sign and say, "Same type of form I signed for the GI procedure right that got us here in the first place, right?" Unbelievable what has transpired over the past month.
Syd and Doug come back to the hospital. Doug and I hug and kiss each other and the tears come again. Sydney wants to play with her new playdoh, so she and Doug make snakes and show Jenson who between moans takes a look. Somehow the playdoh making moment with just our family is a bittersweet moment... a moment of some level of normalcy in a situation with no normalcy about it.
It's getting late, so Syd and I head home to put her to bed while Doug stays at the hospital for the night shift. Doug and I trade texts "I'm so sad"... "Me too".
Please let tomorrow hold better times and more time with our little boy.
Kristin
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