Incredible, but we have reached Day 100 after Ryan's stem cell transplant! And it's amazing that there have been no significant set-backs. His counts are wonderful. He somehow escaped the nasty viral bronchitis that both Sophia and I had a couple weeks ago.
His IgG (immunoglobulins - proteins circulating in our blood stream that fight infection) are low, so yesterday he got an infusion of IgG to help protect him from infections. Dr. Cutler said he thinks this is probably the only time he'll need it. The goal is to enhance his immunity during this season of so many viruses going around. If needed, he may get another infusion monthly.
Last week they did nasal washings (sounds like fun, huh?!) - irrigating Ryan's nose and sending the washings to be tested for viruses. The nasal washings were negative. I was pretty sure that after Sophia and I had been so sick and coughing so much, it was inevitable that Ryan would get sick. We used masks & gloves, Sophia slept in a separate room from Ryan, we didn't eat in the same room with him (you have to take your mask off to eat!!), etc. But with so much coughing I was sure he would get sick, and much sicker than we had been.
The time of highest risk is past. There is still a small risk of "chronic" graft vs host in the upcoming months, and infection is still a concern, but time is on his side now. He can eat out now - takeout or eat in during off-hours in the restaurant. The only exceptions now are deli meats, fresh veggies from restaurants and buffets.
A friend of Ryan's and a fellow patient he met in Albany Med in May lost his battle with cancer last weekend. Our hearts ache for him and his family. He had a long and difficult battle, including chemo, stem cell transplant and cancer recurrences. Ryan was already struggling emotionally, and Bob's death really hit home. It brought up the inevitable questions - why Bob? why not Ryan? why anybody has to deal with this. We had plans to get together with Bob and his family for pizza after Ryan reached his 100th day. Heartbreaking.
Ryan has worked through much of the depression he was experiencing. Not surprising that cancer patients - and their families - have some kind of PTSD. What he has experienced not only leaves physical damage from the chemo and radiation, but also leaves a sense of uncertainty and the ever-present cloud of possible cancer recurrence. Not to mention survivor's guilt.
Little by little the "old" Ryan is returning: laughing and joking with friends on the phone and while he plays internet games with them, watching multiple episodes of "Lonesome Dove", resuming studying for his on-line classes, etc.
On the way home from Boston yesterday, Ryan had his first takeout food in 4 months. Today we had dinner early at Outback, before they got busy with other germy customers. And this evening a McFlurry.
In two weeks Ryan and Sophia will take a weekend trip to New Hampshire for his 24th birthday. A real milestone!
How heartening it is to see him making plans and moving forward. For a while I wondered if the cost of his surviving was never living again. But he is learning how to live again, finding a new normal. And I can't wait to see what he does with his life.
Saturday, February 2, 2013
Sunday, January 13, 2013
January 13: T+79!!
Ryan's gradually finding his footing in his new life. He is still struggling with nausea, but his appetite is returning little by little. We met with the nutritionist at Dana Farber on Friday and got some more ideas for increasing his protein and calorie-dense foods (my speciality!!!). He noted that he's now able to eat "seconds" at supper, and his weight has stabilized.
At our appointment on Friday Dr. Cutler pointed out that Ryan is approaching the magical Day 100!! As of February 3rd, he will be able to eat most foods. He will be able to eat take-out, but will still need to avoid exposure to people, so he will need to take the food home. Salads from restaurants are still a no-no, but he can have salad at home.
His counts continue to be amazingly good. Post-transplant patients are usually scheduled for time in the infusion clinic along with their lab and doctor's appointments each week in case they need transfusions. We see it on our schedule printouts, but he hasn't needed a single transfusion since discharge.
The anti-rejection or graft-vs-host prevention meds will start to be tapered after the 100th day, and if all goes well he should be off the med before the 1 year mark. The anti-virals and antibiotics will need to be continued for a while.
Ryan's mission companion, Elder Brown, drove up from Philadelphia with his sister and brother and spent some time with Ryan. It was SO good to hear him joking and laughing. Little by little he is interacting more with friends by phone and the internet. He's basically a social guy. Tim joked that this would be a lot easier for him than for Ryan since he's basically anti-social!
Sophia's grandmother has been in a coma for a week and not expected to live, so Sophia flew out to San Diego to go with her family to her grandmother's home in Baja, Mexico. Her grandmother passed away today. She has been quite ill for several years and her death was not unexpected, but still a difficult time. Even though the occasion is not the happiest, Sophia is getting a break in her long year and a half in her mother-in-law's house, and some welcome time with her loved ones.
Tim got a nasty respiratory virus this week, so he's been avoiding Ryan. We all eat supper first with Tim banished to the TV room (he may have just done this to get a little peace & quiet!!) until Ryan is finished eating, then we kick Ryan out of the kitchen so Tim can eat at the table. Tim tries to avoid Ryan in the hallways, etc.
It's with a certain amount of trepidation that I go out in public. With all the news about flu epidemics around the country - even in Boston where we go weekly - I feel like it's only a matter of time until we get something that we pass to Ryan. We feel really blessed that we've made it this far, since with every day and week that passes, Ryan's (or Meghan's!)cells are maturing and becoming more capable.
Tim and I spent a Saturday evening at a B&B in Saratoga Springs and had dinner with some friends to celebrate our 40th anniversary. It was mentally therapeutic to pamper ourselves a little bit and "get away" - even if it was only 20 miles and only one night.
I'm starting to make plans for resuming my life. I'm trying to register for classes at U Albany so I can take some classes and decide if I want to proceed with a master's in TESOL - Teaching English to Speakers of Other Languages. But I'm running into a snag with the on-line registration. They want my GPAs from my previous degrees - most of which were 30 years ago!! - and you can't go on to the next step until the GPA page is completed. Luckily I got my Tulane transcript FAX'd to me, so I'm going to just delete the other schools from my "non-degree" application so I can get it done, then add the rest when I apply later as a "degree student.
Tim has completed his classes (ethics, medical law, quality care, patient safety, managing physician performance, etc) for board certification as a physician executive, and will take the course / test for certification in July. Since he is no longer working in an ER he can no longer be certified in Emergency Medicine, and after all these years of hard work he doesn't want to not be board certified.
Both girls are working toward their black belts in Tae Kwon Do in April. They've got to do physical conditioning including running, sit-ups, push-ups, etc. So they are running 1 1/2 miles 3 times a week and need to work up to 2 miles by mid-March. Tryouts for club basketball are next weekend. Part of me hopes they make the team and the other part....well....it's lots of practices and games every Saturday for 3 month.....need I say more?
At our appointment on Friday Dr. Cutler pointed out that Ryan is approaching the magical Day 100!! As of February 3rd, he will be able to eat most foods. He will be able to eat take-out, but will still need to avoid exposure to people, so he will need to take the food home. Salads from restaurants are still a no-no, but he can have salad at home.
His counts continue to be amazingly good. Post-transplant patients are usually scheduled for time in the infusion clinic along with their lab and doctor's appointments each week in case they need transfusions. We see it on our schedule printouts, but he hasn't needed a single transfusion since discharge.
The anti-rejection or graft-vs-host prevention meds will start to be tapered after the 100th day, and if all goes well he should be off the med before the 1 year mark. The anti-virals and antibiotics will need to be continued for a while.
Ryan's mission companion, Elder Brown, drove up from Philadelphia with his sister and brother and spent some time with Ryan. It was SO good to hear him joking and laughing. Little by little he is interacting more with friends by phone and the internet. He's basically a social guy. Tim joked that this would be a lot easier for him than for Ryan since he's basically anti-social!
Sophia's grandmother has been in a coma for a week and not expected to live, so Sophia flew out to San Diego to go with her family to her grandmother's home in Baja, Mexico. Her grandmother passed away today. She has been quite ill for several years and her death was not unexpected, but still a difficult time. Even though the occasion is not the happiest, Sophia is getting a break in her long year and a half in her mother-in-law's house, and some welcome time with her loved ones.
Tim got a nasty respiratory virus this week, so he's been avoiding Ryan. We all eat supper first with Tim banished to the TV room (he may have just done this to get a little peace & quiet!!) until Ryan is finished eating, then we kick Ryan out of the kitchen so Tim can eat at the table. Tim tries to avoid Ryan in the hallways, etc.
It's with a certain amount of trepidation that I go out in public. With all the news about flu epidemics around the country - even in Boston where we go weekly - I feel like it's only a matter of time until we get something that we pass to Ryan. We feel really blessed that we've made it this far, since with every day and week that passes, Ryan's (or Meghan's!)cells are maturing and becoming more capable.
Tim and I spent a Saturday evening at a B&B in Saratoga Springs and had dinner with some friends to celebrate our 40th anniversary. It was mentally therapeutic to pamper ourselves a little bit and "get away" - even if it was only 20 miles and only one night.
I'm starting to make plans for resuming my life. I'm trying to register for classes at U Albany so I can take some classes and decide if I want to proceed with a master's in TESOL - Teaching English to Speakers of Other Languages. But I'm running into a snag with the on-line registration. They want my GPAs from my previous degrees - most of which were 30 years ago!! - and you can't go on to the next step until the GPA page is completed. Luckily I got my Tulane transcript FAX'd to me, so I'm going to just delete the other schools from my "non-degree" application so I can get it done, then add the rest when I apply later as a "degree student.
Tim has completed his classes (ethics, medical law, quality care, patient safety, managing physician performance, etc) for board certification as a physician executive, and will take the course / test for certification in July. Since he is no longer working in an ER he can no longer be certified in Emergency Medicine, and after all these years of hard work he doesn't want to not be board certified.
Both girls are working toward their black belts in Tae Kwon Do in April. They've got to do physical conditioning including running, sit-ups, push-ups, etc. So they are running 1 1/2 miles 3 times a week and need to work up to 2 miles by mid-March. Tryouts for club basketball are next weekend. Part of me hopes they make the team and the other part....well....it's lots of practices and games every Saturday for 3 month.....need I say more?
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