Author: Uncle Matt

I left out some important details as I read back through this, so let me try to fill in the info.

I mentioned that they weren’t able to remove the entire mass during surgery. Therefore, the remaining material will need to be fought with chemotherapy or radiation or some mix thereof. At this point I don’t know when that would begin.

The bone marrow test will happen tomorrow and will require Peter to go under again. There will be another CAT scan of his torso on Wednesday. The pathology reports on the tumor (that was the size of a small grapefruit) should be coming back tomorrow. Everyone is praying that we’ll get more good news from these tests.

A page was added along the top of this site for contact/visit information. Thanks for all the comments on the posts. We’ve been reading them to Peter and he appreciates them.

It’s not often that Monday is better than Sunday, but this is an exception. Peter seems so much better. His voice is stronger, he’s sitting a little more upright and he even managed some little smiles this morning. Auntie G said that she hadn’t seen a toothy smile yet, but any kind of smile is progress. Maybe soon he’ll be able to enjoy some of the wonderful toys that are filling his room.

Let me get to the real update now. He had a bone scan at 3:30 this afternoon to determine if the bones have been affected at this point. When he returned in the wheelchair, brave and strong, we were prepared to wait until tomorrow for any results. At about 5 PM, a doctor came to the room and announced that this scan came back negative; The cancer hasn’t spread to his bones in the manner that this test would indicate.

So we’ve been celebrating this one victory, knowing that there’s still a lot of tests ahead of him. A few happy tears are a welcome sight.

This was a tough day for Peter. I was with him for 8 hours or more and didn’t see a smile, and as you may know, that is just not Pete’s style. He’s uncomfortable, in pain when the meds wear off, scared to move due to the six-inch incision from bellybutton to breastbone, and probably sick of all of us asking him dumb, rhetorical questions all day. It seems to be a chore for him to speak a sentence, much less eat his jello.

But by the evening he started to get a little better. The highlight of his day was a visit from some of his favorite girls. Molly, Molly, and Carolyn visited from Brainerd and allowed him to forget about feeling sick for a little while.

A CAT scan was postponed until early in the week, so the tests begin tomorrow. That will cause some anxious waiting.

I guess it’s Saturday, although it’s tough to keep track of time these days. Pete-man is in recovery and isn’t his normal bubbly self, but that’s to be expected. Uncle Troy and I helped Ty with his hockey camp in Blaine most of the day, but there were many visitors keeping him company.

The big activity of the day was getting out of bed and walking “just to the door and back”. When Peter arrived at the door with IV in tow and in his little red underwear, he looked down the hall and saw friends and family in the seating area. So he decided to go a little further and join everyone. He walked down the hall and said to Daddy, “I’m wobbly” in a weak little voice. After reading a book in the seating area he headed back to the room. Just walking and moving a little bit is important to his recovery.

Oh, I almost forgot that he decided to take off those little red underwear at the end of the hall. Go Pete.

When the doctor came into the waiting room we all held our breath as he debriefed Erika and Ty. They removed most of the mass, but some of it was wrapped around an artery and posed too much risk to remove at this point. All-in-all, the surgery went well.

They were told that the next day or two would be recovery time and then more tests would begin. The tests are to detect if the cancer has spread, if at all. The tests will include a bone scan, another CAT scan (including chest) and a bone marrow test.

Tonight Peter is pretty out of it, but he looks good and is not in pain (thanks to the meds). He has oxygen in his nose, a tube to his stomach, and IV and oxygen monitor, so he’s pretty wired up, but it’s good to see his eyes again.

It wasn’t until it was time to get wheeled out of his room and into surgery that Peter got a little scared and didn’t want to go. I don’t know if he sensed what was ahead or sensed the fear and sadness in the adults that we all failed to conceal. He came out of his room in daddy’s arms as they prepared the bed on wheels to take him away. He was wearing little fuzzy scrubs.

I came down the hall to give him one last sentence of encouragement, but when I leaned in to kiss him and saw a tear beneath his big eyelashes, words weren’t going to come out. This was certainly the saddest moment I’ve ever witnessed and it appeared I wasn’t alone in that feeling. Many tissues were soaked as he laid down in the rolling bed, his reddish blonde hair visible over the pillow, and was wheeled down the hall with Mom and Dad. There was a lot of sadness, some fear, but also plenty of hope.

Erika stayed by his side until the orange-smelling medicine put him fast asleep. She said he did great through it all and I don’t doubt that. Erika, on the other hand, looked like a boxer that went 6 rounds without defense. The rest of us went to the surgery waiting room to try to pass the next three+ hours until the surgeon would give us a report.

Peter remains chipper as family and friends arrive at the hospital trying to grasp what is happening. It is a deeply sad and surreal scene. Peter understands that the doctors are going to have to check out his tummy later in the day, but the hospital staff assures him that “you’ll be asleep so it won’t hurt you at all”. “How do you know?”, he responds, as if to say that they don’t control his nap schedule.

He learns about the doctors’ masks and the anaesthesia mask and chooses the smell of his sleep medication — orange. He knows they’re going to poke into his tummy, but doesn’t know enough to get overly stressed. He makes hospital bracelets for his cousin Macy and cousin Buzz and builds a tower from legos to “protect the cat from the bad guy.” Peter is fine in his new setting. The adults are a wreck.

Today Peter had a CAT scan on his abdomen and the doctor didn’t like what she saw. A tumor was apparent on or around Peter’s kidney. Erika and Ty were ordered to get to the Twin Cities immediately and check into the University Medical Center.

Ty, Erika, and Peter arrived at the hospital and checked in. They learned that the initial diagnosis is Neuroblastoma. The next step is to operate tomorrow afternoon in order to remove as much of the tumor as possible.

Peter is in good spirits. The play rooms in the hostpital have fish tanks and lots of new toys to check out. He doesn’t comprehend exactly what’s going on. I wish I could say the same for the adults. I don’t think any of us are going to sleep much tonight.

For a few weeks now, Peter hasn’t been feeling well. He’s been complaining of a sore tummy, he’s been tired, and has been vomitting on occasion. There was even a report of Peter being grumpy at daycare and not nice to his sisters, which is never the case.

When the symptoms didn’t subside, he was checked out by the doctor and soon after was in for blood tests. His blood showed that his sed rate was out of whack, so there is some kind of fight going on in his little body. Meanwhile, he has been losing weight and not always eating consistently.

Some pretty scary words were presented as possibilites for what could be going on and we soon had more results from the blood tests.
Lyme disease? No.
Lukemia? No.
Auto-immune disorder? No.

That’s good. But something’s still the matter.