Family Update - On To Plan B

Friday, June 11th was Reid's last day of radiation. Originally it was to continue into this week, but the decision was made to end the radiation on Friday. He has now received the number of treatments usually given to patients with Hodgkin's Lymphoma. They decided because of the lung toxicity they wouldn't risk the extra treatments.

The radiologist told us that she had never seen a mass as large as Reid's in a Hodgkin's Lymphoma patient. In fact, she said the head of radiology at MD Anderson had never seen a case like his in 30 years. I knew his mass was large, but I was surprised to learn that it was large to all the experts too. The doctor told us that it was amazing to her that he originally walked into the ER and wasn't carried in on a stretcher and intubated.

We were told that many doctors and physicists were consulted about his radiation treatments. He received a CAT scan before each treatment so everything could be lined up to the millimeter. At least that's how I understood the explanation. He had to hold his breath numerous times during each treatment to help protect his lungs and the treatments took around 45 minutes each time.

They were very concerned about his lungs because he's young. His left lung is smaller than the right lung because of a nerve being paralyzed by the mass. This will probably not recover. And one of the chemo drugs can have a negative effect on the lungs too.

We're very fortunate that we live so close to one of the best cancer hospitals in the country. I know that everything possible was done to protect his heart and lungs. Any after effects will be cumulative and won't show up for while, but I'm hopeful that he'll do just fine.

Friday he got to ring the bell. Whenever anyone completes their radiation they ring the bell and people in the waiting room applaud.



This is Reid with a couple of the radiation therapists.


Jim had the day off on Friday so he went along with us.


They have free valet parking for radiation treatments. Reid is waiting for the car to be pulled around and holding the mask he had to wear for all his treatments. At the end they let them keep their masks. We've been joking about mounting it above the fireplace.


One last time we head for home.


He's starting to have more trouble with his throat and esophagus. That was expected and he was given pain medication. It's just gotten worse over the last day or so and the pain medication isn't working as well. Today he's just eating ice cream. He's also very fatigued. The radiation has left him more fatigued than the chemo ever did, but hopefully that won't last too long. The doctor did tell him that for some people it can take up to a year to get their energy level back up to where it was before treatment.

Tomorrow we have to go back down to the hospital so he can have his chemo port flushed. I believe they'll wait until his next set of tests and scans in August before it's removed. Meanwhile, it has to be flushed every month.

While waiting for Reid to finish his treatment on Friday I walked through the hospital gift shop. I saw a plaque that read, "The rest of your life is all about how you handle plan B." I would have bought it for Reid except it was kind of girly looking with hearts and fluff. However, his life has certainly changed in the last eight months and now it's on to plan B and a life post cancer.

Thank you for your warm thoughts and prayers.

Another update...

Reid has now had four radiation treatments. He'll have a total of three weeks worth of treatments. While waiting for him I couldn't help but notice other people going in and coming out within ten minutes or so. With Reid it was taking between 45-50 minutes.

On Friday he had his appointment with the Radiology Oncologist. She told him that a lot of people were consulted on his case. To hopefully cut down on possible lung damage they are having him hold his breath and then they're giving him the radiation. Since he can only hold his breath a certain length of time they are giving him numerous short doses of radiation instead of one longer one. At least that's how I understand it, and that's why his treatments are taking longer.

I just hope and pray that after all he's been through he doesn't end up with heart and lung problems from the radiation. I'm realizing now that his life will never be the way it was before cancer, but hopefully he'll be able to find an after cancer "new normal" soon.

Update...

Reid went for another radiation simulation yesterday morning. This time they had him hold his breath while they did scans to see if that would help protect his lungs a little more during radiation. He also had another cardiogram, blood work, and a consultation with the cardiologist. His heart is good.

I guess they've had a chance to review all the results because he received a call this afternoon and his radiation is to begin next Tuesday.

I wish he didn't have to have it, but there's really no choice.

Punched in the stomach? Nah, just a speed bump.

Reid's journey back to good health kind of hit a speed bump this past week. Maybe we should have been expecting it. We know radiation is done to kill any remaining cancer cells that might have survived chemo, but still we thought the worst was behind us.

We learned that he is not a candidate for Proton Therapy which we thought might make radiation safer for him. Because the mass passed through bone and into his spinal canal they must radiate from the front and the back. (It was also wrapped around his heart.) They're going to try and protect his heart and lungs as much as possible, but they're concerned because he's young and the potential for problems later on are very real. We also were told that his diaphragm is partially paralyzed on the left side from the mass pushing on a nerve, so his breathing on that side isn't what it should be. This is probably permanent. Another reason why they're concerned about his heart and lungs being damaged from radiation. He was told to follow a low cholesterol diet and not to smoke. The potential for a heart attack within five years is very real. However, everyone agrees that he must have radiation due to the size of the original mass. Even though we've been told he's in remission there probably were cancer cells that survived the chemo. I get the impression that the mass is large even to them at MD Anderson and they've probably seen just about everything.

Just when we were all excited about chemo being finished we get all this news.

And the list of side affects for radiation to the thorax and central nervous system is a lot longer than I would have liked. I know they have to tell the patient everything, but it is a little disheartening to see it all listed.

Yesterday they did a radiation simulation which is "make believe" radiation so they can get him positioned on the table and see where they're going to direct the radiation. Last night he got a call telling him to come back on Monday morning because they want to do another one to see if they can get him positioned better. I know they're taking time with his case and not leaving anything to chance.

We also got a call from the head of the radiation department's nurse asking us to have the hospital that did his surgery Fax the pre-surgery and post-surgery MRI reports to him. She said he's very thorough and wanted to see them too.

So, we'll be back down at MD Anderson for most of Monday and I think Tuesday and/or Wednesday too. Once the radiation starts it will be every day Monday through Friday for four or five weeks (I can't remember exactly how long they said).

Anyway, I think I'm going to be busy for the next six weeks or so and might not have much time for blogging. I'll try and jump in here and post once in a while.

Thank you for being on Reid's journey back to good health with us. We appreciate your warm thoughts and prayers.

Family Update

Reid had all the usual tests and scans run last Thursday and he had his appointment with the Oncologist the next day. He remains in remission which is what we expected since he's been in remission since last December and still completed the remaining four months of chemo. He's now enjoying his chemo free days and is trying to do some walking to regain strength and stamina.

On Thursday he has a consultation with the radiologist at MD Anderson to see what she thinks about radiation. The Oncologist had told him in the past that it's possible because the mass was so large the area might be too large to radiate and he'd have to wait and see what the radiologist thought. Today, the radiologist called to say that she's also set him up with an appointment with the Proton Therapy Department too. So, we'll know more soon.

Thank you for your support and prayers.

Doesn't he look healthy? He's been bald since shortly after high school and has shaved his head for years. He found it ironic that he had to continue to shave throughout chemo. His eyebrows might have gotten a little thinner, but he still had his beard and mustache.