Our Trip to Southern California
Our first day at Disneyland!
Dear Friends and Family,
We hope you all had a happy Thanksgiving, and that you're enjoying the Christmas season! Thanks to all of you who sent messages to us while we were gone - it was fun to come home and find all your greetings waiting for us.
We had a great trip to Southern California. It was so nice to get away! Evan never felt very well, but he was a good sport and made the best of it. In all, we spent one day at SeaWorld and two days at Disneyland. Fortunately, we were able to space out the amusement park days so Evan and I could rest for a day or two in between. (Having fun was exhausting!)
On our "days off" we played on the beach, went to the movies, and took a few well-deserved naps. The best part of the trip was having my parents, my sister, and my brother and his family, there to share the first three days with us. We had Thanksgiving dinner with everyone on Thursday night, and spent Friday at Disneyland all together. It was great fun! (Thanks for making the trip down you guys!)
The big discovery for the week was that Lindsay (our 5 year-old) is a roller-coaster hound! The faster the better. Her favorite rides were Space Mountain in Disneyland, and Mulholland Madness in California Adventure. I think she went on each of them 4 or 5 times. She'd throw her hands in the air and start screaming as soon as the ride started moving. It was hilarious!
Ryan had a great time on the rides as well, but I think his favorite part was the motorized scooter we rented for Evan to get around on. Evan let him take it for a spin a few times, and Ryan thought that was the greatest thing ever. (If only they sold them in the souvenir shops.)
As far as Evan's health goes - the vacation ended almost as soon as we got home. Evan started taking chemotherapy again last Monday, as well as all the other drugs that go with it. Within just two or three days he started feeling more tired and a little queasy again. No fun! But the biggest annoyance has been with his vision.
Just prior to our trip, Evan started seeing little dark spots out of his right eye. At first they would come and go, but while we were in California one large dark spot appeared and has been there ever since. It makes the vision out of his right eye dark and blurry. It's driving him absolutely crazy.
We met with an Ophthalmologist on Friday and he found that fluid is collecting just behind Evan's retina. Now we have an appointment with a Retina Specialist this Tuesday to find out what they can do to treat it. (I didn't even know there was such a thing as a Retina Specialist!)
Anyway, we would sure appreciate your prayers that they will be able to treat and eliminate this problem for Evan. Out of everything he's had to go through and all the side-effects he's had to deal with, this has become, by far, the most frustrating issue for him. It's just one problem too many!
I'll let you know what we find out from the specialist on Tuesday. Thanks for all your thoughts and prayers!
Love,
Margot
MRI Results
Hi Everyone,
Evan had his MRI this morning and then met with Evan’s Oncologist and Radiation Oncologist this afternoon. There was very little swelling around the tumor, so the images were very clear – thank goodness! I think we would have gone crazy if we had to wait for three more months till the next scan.
The tumor has been reduced by about 25-30%. This is good news, but not great news. I think we were hoping to hear something more like 50% or more. And I know Evan was hoping to hear 100%. But 30% is better than 10% or 20%, and it’s definitely better than no change at all, so we’ll take it!
The radiation continues to work on the tumor for several months after the last treatment, and the chemotherapy will continue to fight the cancer cells as well – so we’re hoping the tumor will continue shrinking, and that we’ll see additional reduction in his next MRI three months from now.
Thanks for all your support. We appreciate your thoughts and prayers more than we can say. We wish you all a wonderful Thanksgiving and we’ll be in touch after our trip.
Love,
Margot
P.S. I also wanted to let you know that my good friend Cheryl Wilde helped me set up a little family website, if you’d like to check it out. The address is www.mgardinergazette.blogspot.com.
It includes all my e-mails since Evan’s diagnosis, and I’ve posted a bunch of family photos there too. My computer had a nervous breakdown when I tried to send attachments to such a long list of recipients, so this will be easier to use in that way. I’ll still send out the e-mails, but from now on they’ll be posted on the website as well. Also, if there’s anyone who isn’t already on my e-mail list, they can just check the website from time to time and look for the latest updates. Take care, and we’ll talk to you soon.
Evan's Break From Treatment
Dear Family & Friends,
It’s been a while – sorry for the long silence. Evan is hanging in there. It’s been four weeks since his last radiation treatment, and he’s been on a break from chemotherapy since then as well. We had hoped that he would be feeling a lot better by now, but the improvements have been fairly subtle.
The first two weeks after the end of radiation turned out to be the worst. He finally started experiencing the nausea that we’d been warned about (but thought we had avoided), and he was about as weak and tired and sore as he’s ever been. The last couple weeks have been a little better though. The nausea is gone now, and we’ve seen some mild improvements in his energy level. Also, his personality and sense of humor has started to come back lately. All good signs! The progress is slow, but we’re hoping it will continue even after he goes back on the chemo.
As for the blood clot concerns, they remain a constant issue but not a major threat. The cancer’s effect on the blood makes it difficult for the blood thinners to keep things stable, but he gets it checked every week (or twice a week when it starts doing crazy things) and the doctors adjust the Coumadin accordingly. It’s been a little annoying to deal with, but it’s probably a walk in the park compared to what people with diabetes have to go through, so I’m sure we’ll get used to it.
All in all, the break from treatment has been good. We’ve enjoyed having fewer doctor appointments, fewer medications to take, and Evan has been able to get out a little more too. Last weekend, Evan felt well enough to spend the better part of two whole days with his mom and siblings as we celebrated an early Thanksgiving. It was the first time Evan and his brothers and sisters had been all together in several years. Monte, and his family, came up from Arizona, and his sister, Joy, came out from North Carolina. Alan and Jan were already here in Utah. We had a great time, and really enjoyed seeing everybody.
This week we’re looking forward to our big trip to Southern California. We leave on Wednesday and won’t be back until Friday of the next week. It should be just what the doctor ordered, for all of us. We’re planning to have lots of fun and come back ready to face the next phase of treatment.
The other big event for this week is that Evan has his next MRI tomorrow (Tuesday). It will give us the first look at the tumor since he started treatment. If the images are clear, it should give us the first indications of how effective the radiation has been. The doctors have warned us that there is a possibility that the images won’t be clear since the radiation causes a lot of swelling around the tumor, and sometimes it takes more than four weeks for the inflammation to subside. But we’re crossing our fingers for clear pictures and good news! I’ll be sure to send out a quick e-mail tomorrow night and share the results with you before we leave town.
We hope this letter finds you all doing well, and we wish you a very Happy Thanksgiving!!! Thanks for all your prayers!
Love,
Margot
4 Treatments Left! Dear Family & Friends,
It’s been a little while since I wrote last, but as they say, “no news is good news.” Things were a little crazy last week after he was released from the hospital, trying to make adjustments to his blood thinning medication and get his blood flow stable. But we seem to have worked out the kinks now and he’s been stable for the last 5 days. So this week has been pretty uneventful, and that’s the way we like it.
The BIG NEWS is that Evan has just 4 treatments left. His last treatment will be next Thursday the 18th. We can hardly wait for this phase of the treatment to be over. He is just completely depleted of energy and strength. Except for the daily trip to radiation, he doesn’t want to go anywhere or do anything except rest.
We’re really hoping he starts to feel better during his one-month vacation from all the treatments. In fact we’re counting on it - we just cashed in all Evan’s frequent flier miles and got four airline tickets to Los Angeles. Some of our dearest and closest friends have a little one-bedroom condo right near the beach, south of Los Angeles, and have graciously offered to let us stay there for some serious rest and relaxation. We leave the day before Thanksgiving and the day after Evan’s next MRI. We hope it will be “just what the doctor ordered” for all of us!
As always, thank you all for your continued prayers on Evan’s behalf! We appreciate it so much!
Love,
Margot
Home from the Hospital!Hi Everyone,
Just a quick update to let you know Evan made it home from the hospital today (Monday). His blood wasn’t quite as thinned as they wanted it to be, but they said he could go home as long as I was willing to learn how to give him the shots he needs. He’ll only need the shots for two more days, and then he can maintain it with a different blood thinner (Coumadin) which he can take orally (thank goodness). Evan was really sick of being there, so we were relieved to find a way to get him out of there.
We were also happy to get Evan out of the hospital in time to keep his radiation appointment this morning, and also his appointment with the Neuro-Oncologist, Dr. Choucair, this afternoon. We haven’t met with Dr. Choucair since the biopsy, so we were pretty anxious to get his view on how Evan’s treatment was going. He thought Evan looked really good, and was happy with how the medications have improved Evan’s speech and memory. He said that the blood clots are extremely common with this type of cancer, but that the blood thinners should help prevent any further complications.
A heartfelt thank you to everyone who called, visited, or sent something to Evan in the hospital – that was so thoughtful! A huge thank you to my parents who put in long shifts at home with my kids and my laundry this weekend. And many thanks to everyone who said a few extra prayers for us this past week!
As of today, Evan has 13 radiation treatments left. If we don’t hit any more snags, his last treatment will be on October 18th. His next MRI is scheduled for November 20th.
Take care, and we’ll keep you posted.
Love,
Margot
