Posted by Steph in
Chemotherapy, Development, Head Wound, Home during Treatment, Surgery, on Saturday, November 11. 2006 at
Scott asked me before I left with Asher how I wanted today to go....you know, I started my day not wishing or hoping for anything. I have really changed, in that I no longer hope for anything in particular for each day. I just go with it....just live. Not sure that makes sense, but I find that I have a lot less things to get disappointed about if I don't assume things should go a certain way. With that said, I realized I was still quite stressed today, and in fact have had a much more difficult time sleeping the last two nights. I guess I'm worried about how Asher will be after the graft. The plastic surgeon has warned me, his buttock will hurt pretty bad, and bother him much more than his head. I'm also worried because he will go home after the graft and he's never gone home right after surgery, the same day, before.
I talked to the plastic surgeon before surgery. First she said Asher's entire oncology team confronted her to find out what was going on. They are so anxious for him to be healed up, as much as Scott and I! When we see his hair growing longer and longer each day, we wonder, "How much has his tumor grown?" Some days we try to forget he has cancer and sometimes for short moments it seems like we can forget because Asher seems fine, but we can't forget. We watch for symptoms, we worry he will fall and hit his head, we worry his tumor is growing or his cancer is spreading, we wonder and worry about his future treatment, we wonder when he will eat again, we want to ask for a MRI, and....it is always going to be like this, but knowing he didn't complete the protocol with six rounds of chemo is hard to live with. So....each day I go to the hospital with Asher is another day I hope and pray he is healed. Seeing the discouragement in the face of the plastic surgeon and the oncology team is difficult because I know I feel much worse inside than they do.
So, they got Asher into the OR a bit early today (12:35 instead of 1:00) because there was a cancellation so that was kinda nice, not having to wait around trying to keep Asher occupied. While waiting, one of the OR nurses came out part way through surgery to say they couldn't do the graft because it isn't ready, so the plastic surgeon was going to do debridement and then the dressing change. A bit later, one of the oncologists and Asher's weekend nurse practioner came by. They both sat down by me and gave me an encouraging word.
The thing I like about being at the hospital is that I run into someone I "know" every time now. So many nurses and other hospital staff know Asher and say, "Hi Asher" and take time to ask him what he is up to. Even when I'm alone, waiting, I can get support. There's so much to say about having a friendly face like that each time we go now. Even the recovery area nurses know us and the head dressing changes do seem to be easier since there are many shortcuts to each visit now since they realize I am there three times a week and don't have to answer the questions over and over each admission.
When she was done, the plastic surgeon came out to explain to me the benefits of waiting for a "complete" healing over the bone before the graft. She said it is slow to heal (remember the opening over the bone was only 2cm by 2cm) because he had chemo and was neuprofenic (spelling? ANC=0 for so long) he is slower to heal. The plastic surgeon said she has to poke and prod the tissue near the bone to make sure it is healed over the bone because it can appear as if it is, but then under a thin layer it can prove not to be 'healed.' I can't explain it real well, so I hope this makes sense. She did say that the scalp seemed looser today than last Friday when she said it was tight and wouldn't stretch/close any further. So, she said the wound may actually get a bit smaller yet before the graft since we have to wait for the tissue over the bone to heal. She doesn't know if she will take Asher into the OR on Wednesday or wait till Friday. It is a lot of work to take him into the OR versus just taking him into PACU so she doesn't want to do it twice that week and wants to really try to guess the best day to shoot for, without waiting too long....so she will talk to the wound specialist that will do the dressing change Monday and then I'll know what day she'll shoot for.
So....more days to wait....like one of the oncologists said to me today, "Hurry up and wait." It's hard not having a plan and it is hard being afraid. There's nothing easy about this stuff, but I'll tell you, it is really nice to see Asher smile and talk to the hospital staff. He is HAPPY to go to the appointments and today he woke up from anesthetic so well, he didn't whine AT ALL in the bed unless I tried to tell him it was time to go. (NOTE: Today's end of surgery cocktail was versed, clonodine, and morphine.) Asher knows Nicky the nurse who has been there for all the dressing changes except 2. Nicky offered another patient juice so Asher asked her for juice and said, "Thank you" to her when she brought it to him (Nicky was impressed with how polite he was). Nicky then offered the other patient (who had her tonsiles out) a popsicle so Asher asked her for a popsicle too.
I'll end with some things Asher said today after waking up from his debridement and dressing change:
"I want juice. Yellow juice."
"I want a popsicle. Red."
"I want to have an owie."
"I want to keep my jammies on." (meaning his hospital gown - it was the first time he wore one for a dressing change)
"I don't want my shirt on."
"I don't want to get out of the bed."
"I want to play games."
"I want to stay with the nurses."
"I don't want to go home."
"I don't want to go in the stroller."
"I want to see the doctor."
And things Asher said all the way home in the SUV:
"I want to go back to the hospital!"
"I don't want to go home!"
"I don't want my appointment over."
"I want to go back to the doctor."
"Turn around mommy!"
"I want to go to the store. I want to go to Target. I want to get pumpkins." (I can't convince him we already had Halloween and if I try to remind him it was a couple of weeks ago, he says, "I want more candy.")
(and all of that repeated over and over till we get home)
NOTE: Asher weighed 15.5kg today with t-shirt, jean shorts, diaper, socks and shoes on....he's losing weight since he doesn't get all his calories with his NG tube feeds with anesthesia 3 times a week.
Playing the waiting game is soooooo hard; we are sorry about that for all of you. It is so encouraging to read about the teams of doctors and nurses and their compassion and caring. Asher is a real trooper in all this and sounds like he has made an impression on a lot of people. What a guy! We are proud of you all! Hang in there. Continued prayer is being sent your way.
Daily checking on your family and praying for God's blessing. You have a Cosco membership, right? Wendy
Yes, with three kids in diapers and one needing formula, we got a Costco membership a few months ago.
Keep the faith. You are doing a wonderful job! Thinking about you and your gang often!
Hugs, Steph and Scott! It has to be hard - like a rock between a hard place. Hurry up and wait seems apt! Been thinking alot about you all!
Yesterday is history.
Tomorrow is a mystery.
And today? Today is a gift.
That's why we call it the present.
- Babatunde Olatunji
Hope that this is the beginning of a good week for Asher and the rest of you.
Sounds like all is going well - other than waiting that is. Still praying and thinking of you often!!
Continued ((((prayers)))) as you continue down this long road. Keep up the faith,there are many people praying for Asher. He is such a strong little boy! (((((huge huge hugs)))))) to you all.