It turns out I didn’t even need to go. Dr. Kukunoor didn’t have the CaT scan results; they were never delivered. He told us he would get them by Friday and call us then. Kasha and I thought it fair enough, but I was pissed that the scan office didn’t get them over; or that Kukunoor’s office didn’t at least request them earlier. One full week?

The next day my doctor called midday to say the results were in. And the tumors were…

the same. No changes. Buster was still sitting there full-sized in my pelvis, smirking. The ones along my spine continued to dig in and threaten the health and mobility of my body.

“So there’s a chance the chemotherapy did nothing for me?” I asked.

“That’s a possibility,” said Dr. Kukunoor, “But the likelihood is that the chemo kept your tumors from growing any further.”

I was confused and even angry. Five months of hell for a likelihood. Chemotherapy is not easy. It saps your body and takes away life, all for the possibility of giving it back. It’s not a sure thing.

Jennifer from the Center for Pain and Supportive Care (my pain pump people) also called that afternoon, concerned about the level of pain I’d had. She asked if I would like to come in to the westside office and I said no. I thought about this and realized I’d have to get up sooner or later. Especially considering Michael’s (my brother) wedding the next day! I asked Ruth to call back and say we’d go. It turned out, as long as we arrived by 3pm we could get an appointment.

I called my sister to see if we could use her van. I figured I could lay down in the back of the van, instead of sitting upright in our car. She agreed to come down at 2:30, and when she arrived she had our dad with her. He was in town for the wedding and came along to help. I was dressed and stood at the edge of the bed. PAIN! I sat in a rolling chair, getting to the front door. I used the walker to get out to the front steps. My dad stood close by with his hands out, ready to steady me or catch me in any way he could. I started down the steps and, though there was pain, I managed to make it to the foot where the wheelchair was waiting. Into the van, Melissa had prepared a blanketed bed for me. I laid down all the way to the center, with Kasha looking back at me with concern every few minutes.

I got in to see Dr. Berger soon after arriving. He was really only able to increase the rate of my pain pump. I agreed to a 30% increase, along with a small increase in my bolus- the remote device I carried with me to administer pain relief. I was again told about the medication that may be able to help me with nerve pain. It wasn’t available right then, but I could have it added to my pump at the main office in Scottsdale.

I made it back home and into bed. It was nice to see my dad and Melissa. I had felt cramped up all week long, in pain with nowhere to go. I would be going to Michael’s wedding the next day. It was in doubt earlier, since the thigh pain began, but I would go after all. I was a groomsman, after all!

The wedding was a tremendous experience and I hope to tell you more about it soon. Michael & Shauna were married amid over 100 people. The audio and visuals made it all like a major performance. I was glad to be a part of it and be there for Michael. At the end of the night I told him how proud I was of him and hugged him.

Today I went back to the hospital for a dye test. I had been having extreme pain in my chest during intravenous pushes of an antibiotic. We couldn’t figure out why it was happening. A nurse who comes to the house said it could be due to a hole in the catheter of my power port. Oh, no. If that were true I’d need more surgery to take it out.

I arrived at the hospital at 9:30. Getting down the stairs of the condo hadn’t been hard. I’ve been getting into a groove the last few days. I went through admitting, then sat in the radiology lobby for just 15 minutes or so. Vince came to get me. I like him. He had helped me on my very first hospital appointment 5 months ago. I changed into my hospital gown and then was taken to the same bed I had on that very first visit for a biopsy.

Ruth was with me (my mother-in-law). We waited quietly. I hadn’t been able to have any food or water since 4:30am. My mouth was incredibly dry, like a cotton ball. I knew there was no use asking for a smidgin of water to ‘wet my whistle,’ so I just laid there.

I was taken back to surgery around 10:45am. The doctor had already come to my bed a bit earlier to tell me what would be done, so I was prepared. The surgery team put me on a very narrow slab and then attached plastic pieces along the side for my arms to rest in. An IV had been prepared in my hand, but this wasn’t used yet.

A large, square device hung over my chest, and on a screen I could see an X-ray of my chest, complete with ribcage, my power port, and the catheter running through my vein. The doctor came in, attached a needle to my port and squeezed dye into my chest.

“Yep, there’s a hole,” he said. “You see that?” he said, pointing to the screen. “As I pushed the dye, a very small amount  leaked out near the top of the catheter. It looks like we’ll need to replace your entire port.”

I went on to learn that the catheter had been threaded between two bones, causing it to weaken as I lifted my arm and finally create a hole. Damn, surgery. I agreed to it right away, though. The surgeon told me it may be possible to do it that day, if my insurance company signed off on it. I would need to wait about an hour as they worked it out.

I went back to my room and watched TV. Nothing really on, even though shows are geared toward poor folks like me, who are home from work due to an accident or some unfortunate state. Within 45 minutes or so we had an answer. Surgery had been approved. Soon I was wheeled back into the room and hooked back up. This was surgery with only local anesthesia, so I wouldn’t be knocked out.

I was given a series of painful shots around my port, and finally one through my jugular vein. I felt ripping, as though something in my chest was being forcibly removed. All of this was almost too much for me, though no going back now. I graciously fell asleep, waking to the voice of a nurse telling me it was over. Really? Yes, all done. I could go back to my room for food and liquids, a brief recovery time before going home.

I was given a turkey sandwich, chips and an orange juice. Ruth had bought me a large bottle of water. I finished it all, and in no time I was heading out the door, home free.

It’s been a long two weeks.  I’ll try to give you the latest.   I really won’t do it justice though, I am hopeful Morgan will get to fill in the details soon.

Monday, September 7th, Morgan forgoes Labor day hoopla for the start of chemo round 2.  We were all dreading it, especially Morgan.  We were told the chemo cocktail would be much stronger than the first round and that treatment would be intense.

Morgan was fabulous, he did great.  PacMan was on the attack and Morgan persevered!   He was in good spirits,  feeling decent, ready for visitors, pain management was under-control- a few glitches, but for the most part the week went smooth.  Highlights included Mom’s 60th birthday which brought in a surprise visit from Mark and Andrea.

The week of chemo went better than expected, so much that I completely forgot about what follows chemo treatment.     He was doing well Saturday the 12th, it was mentioned that he may get to leave the hospital that Sunday.   Of course we made plans.  I know, sometimes we get ahead of ourselves scheduling fun…

Well, the fever came- “unknown origin” they call it- so they did blood work and cultures to try to figure out what was going on.   I don’t remember all the details, but do know that it went on for a couple days.  They called in a “disease specialist” to review his case.  He was given antibiotics and they did another scan.  They found that his kidney and bladder were not draining all the way even with the stents and the catheter.  Somewhere along the way they also found a blood clot in his left leg and did surgery to place an umbrella-like device (filter) to keep it from moving to his lungs.  During this past week he also went through the neutropenic phase where his total blood count drops.  Chemo kills everything.  He is weak and is in and out of sleep for days.

The great reports (aka answered prayers):

• Morgan is a champion; he has done so well!!  I must remind you we were not sick kids.  He only had stitches once when we were kids and before severe back pain three years ago he appeared in great health.  No hospital stays.  This has rocked his world and changed ours.

• His pain is managed completely by his pain pump
  http://www.spine-health.com/video/intrathecal-pump-implant-video
  Before the pump, he was getting close to 200 mg of morphine a day.  His pain pump disperses the drugs directly into his spine area and only requires drops (not sure of exact measurement- significantly less)

• He is off steriods.  His face is back to normal without the puffy swelling and I know he feels more like himself:
  http://cancercaw.com/blog/pain-mgmt/turn-it-down-on-steroids-refocusing-on-support/

• They caught the clot!  They found it and did surgery to treated it!
  http://www.webmd.com/a-to-z-guides/blood-clot-legs?page=4

• Leaking catheter issues- RESOLVED. without MacGyver appartus.   dry again….PRICELESS!

• http://www.neulasta.com/patient/about/about_whitecell.jsp?wt.srch=1
  Neutropenic phase was managed and treated with tranfusions  http://en.wikipedia.org/wiki/Blood_transfusion

• Morgan continues to INSPIRE!  We have a family saying or cheer~ ”NEVER GIVE UP” ~ Uncle Morgan is a perfect visual example of this for my three girls and our entire family.  Hebrews 12:1-2

• Suffering… Pray.   Cheerful… PRAISE!!  James 5:13- 20   Thank you for your continued prayers!

Morgan is back!!  His eyes are as blue as the sky again, his coloring is back, the swelling in his face is down.  He looks great and is feeling better.    Timely I’d say~  We’re preparing for a celebration!  … more to come- please don’t miss this!

Please leave a comment or word of encouragement for Morgan.

First– don’t be alarmed by the picture. My eye sockets often appear hollowed out and gaunt (though there is a narcotic composure to my face I’m no longer comfortable with).  I actually feel pretty good lately, other than the pain in my waist and thigh that has been with me the past week. Luckily, not so much when I’m laying in my bed.

You can click on the photo to read about places on my upper body that are my new “signs of cancer.” War wounds and battle grounds. Each surgery, shaving, tattoo and simple cosmetic change has come to represent my struggle.

I normally don’t like showing off my scraggly, hairy chest. Heck, I don’t even like swimming in public with a shirt off. But I thought some of you might find the body mapping of my cancer to be an interesting thing, as I’ve come to think of it.

Morgan & Kasha went to Dr. I’s office for his follow up visit Thursday.  They had made us aware in the hospital that a pathology report came back with results that were different than Ewings Sarcoma.  At the visit they confirmed the new diagnosis: Neuroblastoma.  http://en.wikipedia.org/wiki/neuroblastoma They felt his belly area and could tell Buster has gone down in size.

They took blood and his white blood cell count was low, this is normal, there is usually a cycle after chemo where they are low.  They scheduled an appointment for Monday to recheck and possible give him another blood transfusion during that visit.   Once those results are in and his strength is up, they will schedule his 2nd round of chemo treatments (either 2 or 3 weeks out).

They will not give further information on prognosis until three or so more chemo treatments.  He is very weak and the appointments wore him out.

The word on eating and food from both the oncologist and dietitian is wise calories, high protein, high nutrients, no real “stay away from” at this point he needs calories.