Monday, February 20, 2012

Giddy's Renal Adventures: part 1

In life we want things to be cut and dry and quick easy answers, but we all know it is rarely like that, in the words of Ralph Waldo Emerson: life is a journey, not a destination.

Our youngest son gave our family and many that know him an extra journey of faith the last week of January.

I include his story here, because I want it journal-ed and because there are so many people that were praying for him and thinking about him and their faith, service, and concern has been such a blessing to our family. Much of it comes from notes I took in the moment and so my apologies if tense changes etc are odd. I have to do it in installments or 1) it's too long 2) life is like that 3) otherwise it won't get done at all.

Gideon is a big boy. Always has been. He's a sight to behold with broad shoulders, wispy blond hair and icy blue eyes. He's tall for his age and well filled out. He loves to eat and has 7 teeth and loves to gnaw at things. So a rotund baby belly would be expected and he certainly had it. We hear comments often about what a big healthy boy he is, but the best thing about Gideon is that he is Giddy. His nickname is very fitting as he is a very sweet smiley boy.

About Christmas time I started to wonder about the fact that he had taken to spitting up again. It was in sneaky burps but it smelled like vomit and he hadn't been spitting up for a few months. There were a lot of factors so I discounted it at first because he never seemed bothered, he'd cut a tooth so we'd pin the spit up burps on that and then he was eating more table food, then more vitamin d milk would get the blame, then over eating.

The first week of January I kept him out of a few activities because I couldn't tell if he was sick or what. But since he was happy as ever I would just go around the house cleaning up quarter size or more stinky spit ups.

Sunday the 23rd of Jan I was in another room listening to Gary change Giddy's diaper and commenting on what a big boy and big belly he had. He has commented this very often lately. So I felt the need to investigate a bit when I was getting Giddy ready for bed. With more careful scrutiny, as I tried to secure his diaper I noticed he was fatter on one side than the other. I started poking around his belly. It was soft and bouncy on his left side, on his right it was firm and solid. I tried to sort out the lump and gauged what I could feel to be at least the size of my fist. I got very concerned. I zipped up his jammie's and went downstairs where the family was waiting for FaceTime with grandparents, scripture reading and prayers.

Gary was at the computer lining up bills for the week. I said, "I think something is wrong with Giddy. His belly is really hard on the right side." Gary of course, thought he was fine, (I can't blame him, if i had just allocated all out money to necessary expenses I would think he didn't need to see a doc at the beginning of the deductible year too) he's just a big boy. He's probably just constipated. I said I wanted to take him to the pediatrician. "It's not supposed to be hard. It's not squishy like on his side. It's a whole handful. That's huge! Besides constipation usually happens in the descending colon."

So the poor boy was given a suppository. He pooped. There was still a hard lump. Poor Gary was upset because as he said, "You are usually right and this is really bad timing. We were getting on a plane next Tuesday. They are non refundable flights. That's a LOT of money. I hate it when you are right about stuff like this."

I got into the first apt I could with the first doctor I could Monday. The appointment happened to be at 2:10 and I was watching a friend's daughter. While Waiting for 2 pm to circle around we melted down crayons pieces and made some cards with the thin layer of melted wax. (I have blurred out our friend's beautiful face because I don't have permission to show her.)

Then lunch and loading up. The kids were good at the doctor's I did try to find someone to drop off at least Zurich with but no one answered. So I took the four of them. "Ju-la" (as Nev calls her) helped by pushing the stroller. I'm glad I had our friend with us that day because having someone else to care for actually helped keep me calm and focused on normalcy.

I do think it was one of the shortest doctor visits I have ever had. I explained my reason for bringing him in. The doc felt it and said, we need to do a CT scan. She left to schedule it and sent in Giddy's doctor who felt it and concurred and tried to console me when I said, "It's a tumor huh?" And then thinking about Gary's comments before, bad timing and we can't afford a ct scan. One ct scan is the tip of the iceberg folks, and I knew that. You could tell by the doctors, this was serious.

The scan was set up for the next day first thing in the morning. I arranged for someone to watch the kids. I had asked Gary's help in sheeting Zurich's bed and then wondered what was taking so long for him to join us for scriptures. He was laying on Zurich's bed breaking his heart. "I have always coped by accepting the worst case scenario but I can't this time. I can't accept not having Giddy."

Early the next morning Gary and I headed with our Giddy to the children's hospital an hour away. We were scheduled for 8am and were there at 7:39 but didn't have the actual CT till 10 am.

He was given the dye and drank it (easily since he had been fasting and not eaten anything yet) and then we waited 45 minutes for it to move to where it needed to be. We both went back while they hooked up an IV. To try and calm him down they turned on some colored lights.

Gary stayed with them while they did the actual scan. Then back in the waiting room while they read the ct. He came out with all his bug bites looking like blood blisters. We were not supposed to leave until our referring doctor called us but when it was time instead of talking to her at the desk in the waiting room they invited us back to the room where they keep the toys and snuggles for bad news. It was bad news.

When the phone rang I let Gary talk to the pediatrician. He asked pertinent questions I wouldn't have had the mind to.

Diagnosis: Wilms Tumor, Kidney Cancer.

They said the C word about my baby. My mind resisted, my heart resisted, my prayers began.

When Gary got off the phone and confirmed pieces I had overheard I cuddled my sweet baby and broke my heart. "My baby, my baby" we went through periods of disbelief and devastation, numbness and worry. Chances were good he would live but he'd be in the hospital probably have to have chemo etc. Thinking of all the possible implications was too much and that's where numbness would rescue us for a few moments. I threw out, maybe it wasn't cancer at all: maybe it was just a freaky tumor like my two separate tumor sites had been.

"Why not me? Why my baby?" Gary asked
"Because he's strong."

I remember assuring Gary at one point, that this wasn't some punishment from God, but just part of our mortal existence. Just something that is part of it. And it was specifically part of Giddy's, something that he had the strength to deal with.

(It would be interesting here to see why we chose the name we did for Gideon. If I get that typed up and posted I will link it here. )

We cried and looked up Wilms on the Internet. The prognosis is very positive. We waited for the oncologist for more thorough explanation. Gary tried to give him a priesthood blessing but he was too wiggly. I said a prayer and he quieted immediately listening to me and stared up at the lights after the prayer he dropped off to sleep. Gary was able to use the anointing and give him a Priesthood blessing. This of course gave us some comfort and new thoughts.

We called Gary's parents, & my sister, I couldn't get a hold of my parents. There were no pictures taken in this room. As Gary said, "I don't ever want to see that room again." However, I don't think we will be able to get it out of our minds.

The oncologist Sutphin and his resident came in and talked to us while I held sleeping Giddy. Sutphin confirmed the diagnosis Wilms cancer: of the kidney. For sure surgery with a ten day hospital stay after surgery. Pathology will be done at time of surgery. He thinks it is stage one or two cancer, with a very positive prognosis. We were told that they would remove the right kidney as the tumor is involved in the kidney.

We were ready to get the surgery done that day and get things started, but more tests needed to be done to see if it affected anywhere else. They said that he would be admitted that day and that they were already working to clear out a room for him. There are possibilities that it can affect / spread to lungs. Some of the tests will help rule that out.

At least 6 months of chemo after surgery if tumor weighs too much. Too much was anything over 550 grams.

He will have 1 kidney. He should be fine with just one. He won't be able to take certain medications. (Motrin) Be careful with contact sports. Sutphin then mused over Gary being a baseball fan, probably the hat. :) Like Giddy would still be able to swing a bat. 15% chance of re-occurrence. Nope. Gary doesn’t play baseball. (Later we were talking about why this was his guess, and I said, it was probably because baseball players aren’t usually known for their physique. Can you say foot in the mouth?) I asked could it be just a freaky weird tumor like the two I have had and not be cancer. No. But we did then discuss the kinds of tumors I had. (Each time I have had a tumor discovered there was the talk of it being cancer and testing but it was never really a scary reality.) But he thought that Giddy’s was only stage 1 or two which meant a very favorable outcome. We talked about 6 months of chemo and a 90% chance of survival. He’ll live, he’ll be okay. At this point Gary got up and hugged the doctor.

We remained in the bad news room for quite some time waiting for things to be worked out, or maybe just for us to calm down. Then we waited for a room to be admitted to for at least a half hour in the registration office.

When we were brought up to the 4th floor they gave us a tour. It really hit us when we were in the family room and we saw the box of donated hats. That said cancer to Gary and me more tangibly, more track switching.

Giddy's stats were taken and we settled in trying out his robot crib and Giddy sliding around on the floor purposefully in his gown.
When Giddy was admitted he weighed 23.1lbs and was 30 1/2 inches tall.


  1. Poor little guy! Hospitals are no fun for both the kid or the families! I hope everything goes well, we miss you guys!

  2. Oh Coretta. This all sounds like the worst sort of nightmare. I am so impressed that you are both so strong spiritually and were able to know that Giddy is strong and that we are here for these mortal experiences. It must be so hard to see him go through all of this. Prayers and love and comfort to all your family.

  3. We love you and are praying for you and your family, Coretta. Especially 'little' Giddy.