I just have to help you understand why we hate steroids so much...
Imagine for a moment that you wake up one morning and look at your kids only to see that one of them you can’t recognize at all. Well, that’s a bit extreme because this whole transformation didn’t happen overnight at all. But nevertheless, you’re looking at this kid thinking, “where are you?” Imagine being with that kid, him by your side pretty much 24 hours a day. You rarely ever go anywhere without him and usually sleep in his room. And yet, you can’t find him. Every day, you look for him again, but he’s still under that spell that transformed him into someone you don’t recognize....even when he’s standing right in front of you, sitting at the table with you, talking to you...
There’s so much to this cancer battle that’s been incredibly difficult, but lately since we’ve been home and he’s actually getting better, the hard part has just been missing him. Is that so incredibly weird? I just ache sometimes to see that boy again and when I look at Jacob with his swollen face and belly and his dark hair, bushy eyebrows and long dark lashes... he’s just not the same. I feel so terrible even thinking it because deep down I know that inside he’s the same kid and he’s aching to come out even more than I ache to find him. It’s just so unbelievable. I never dreamed that I wouldn’t recognize one of my own kids. A few weeks ago, I was looking in his eyes and realized that his color was back. Yes, even the color of his eyes changed during treatment. They were a deeper blue and with his pupils usually dilated, they just looked darker all the time. That day, looking in his eyes and seeing that beautiful blue color back, I almost cried. At that point, I realized that the color of his eyes and the sound of his voice was the only thing unchanged, the only thing still “Jacob”. ...except of course for his strong, wonderful heart and his fighting spirit that will always be Jacob!
I prayed, I begged, I cried and asked for just a glimpse...If I could just see for a moment that little boy again and remember what he really looks like and who he really is, I’d be okay again for a little while. But it hasn’t happened yet....so I wait. If I could just look and see a little something that reminds me of the old Jacob, it would help so much. But he’s just so different right now.
Now the infamous day has come! He took his last dose of steroids today! He is actually done with those awful things forever and I’m finally ready to post a few pictures of him so everyone can realize what I’m talking about. I didn’t want to post these pictures and didn’t know how Jacob would feel about it, but honestly...he’s pretty fascinated with the whole thing and doesn’t mind at all. He’s never had a day in all of his treatment when he didn’t want people to see him. When he lost all his hair, he didn’t care and proudly went out with me and hung out with his friends whenever it was okay for him to do so. He’d wear a hat sometimes just to keep his head warm or because he likes the hat, but not to hide his baldness. ...I miss his bald head so much now. Can you believe that? But I miss his long blonde hair even more.
Okay, I'm finally posting some pictures. The computer loaded them backwards from when they were taken so the oldest pictures of before he got sick to the bald chemo kid to all my steroid pictures start at the bottom and go to the most recent at the top.
These top two pictures were taken just yesterday. This was the last day he took a dose of steroids and we celebrated, just the two of us and Jericho by going out to dinner at Applebees. The rest of the family had gone to Tremonton to see Aunt Sierra and we missed out so we decided to have our own fun. It was nice to go out to eat, just us. But as you can see from Jacob's expression on this top picture, he got tired out really quick and didn't feel too good. He couldn't finish his dinner and got nauseous so we left a little earlier than I had hoped. To look at him, you wouldn't think he couldn't finish a meal, but it still happens all the time and he's losing his appetite again really quick.
Now it seems that it's been so long like this that here's the boy I recognize. This is what he looks like and this is what I see in my mind...this is my boy now, for the time being...until we get him all back again. Will I have to adjust all over again to another "new Jacob"?
Where did his ears go? ...they are hiding behind his cheeks! This is the face I'm talking about...I can barely recognize anything "Jacob"about him...can you?
I'd wake up and look at him sometimes, listen to him talking to me and have to close my eyes just to see him for who he is to me...my tough little blonde boy!
It's really amazing...I'm so glad I took these pictures even though they are hard to look at. I wouldn't have believed it myself without this record of him during this time.
Then it seems to have snuck up on us so fast and all of the sudden, he was changing so much. I thought the change from his healthy self to the bald boy in treatment from chemotherapy was a drastic change, but those steroids sure did a number on him. Notice the first one with the brown shirt, you can barely still see his ears around those cheeks.
Here's one I took during the hospital stay when he had the problems in his lungs after transplant. This is just days before he started taking the steroids and his cyclosporine hadn't started making his hair grow back yet. His head is still just as bald as can be...
These two , taken in the hospital while he still had hair were very very soon after his diagnosis. The one with his smile was taken right after they placed his central line that you see sticking out of his chest there. He also had a bone marrow aspirate that day and his first of many lumbar punctures where they gave him chemo right into his spinal fluid.
This last picture is one I just found today. It was taken March 7th. Almost exactly one month before Jacob was diagnosed. His body was fighting the leukemia during this time. This is when he was getting infections, tired all the time and having a hard time kicking any kind of cough or cold. He had to stop wrestling and we just didn't know all that was going on inside him.