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?
Thursday, December 27, 2012
December 27: T+63 After Effects
I've been hesitant to blog lately. We're all dealing with the strain of the after effects. I'd like to post something rosy, but that would be dishonest. I started the blog to inform friends and family, and to have a record others could use to get a realistic idea of our path with ALL. Now I almost regret having started it since I feel like I need to keep going, and to my surprise, what we are going through right now is almost as challenging as the chemo and transplant.
Don't get me wrong: we are all blessed beyond measure with Ryan's survival and the success of the transplant. It was what we prayed for and dreamed of.
I underestimated the emotional tailspin that would follow.
Ryan feels pretty lousy most of the time. He's having trouble eating and drinking adequately. As a result a PICC line (an IV that goes from his arm into the large veins in his chest) was placed last week so he can get IV fluids at home. After a few days of adequate hydration, he had been able to eat and drink more.
Brad Ferland came to visit and cheered him up watching some silly tattoo show on TV and making fun of the show. Last weekend Ryan went to New Hampshire to see "The Hobbit" wearing a mask aand gloves in the balcony of a small town theater. Brad arranged for Ryan and Sophia to have the balcony to themselves and to enter via a separate door after others were seated to avoid contact with crowds. Then they spent the night at a hotel in NH for their anniversary. He traveled with his IV in a backpack.
Shannon came for Christmas and I think that cheered him up a bit. She was able to get him laughing.
While I really can't speak for him and I don't want to misrepresent his experience, much of the time he seems to have lost interest in most things. And I know he gets really tired of me monitoring his hydration status and how much he eats.
I am walking a tightrope trying to let him be an autonomous adult while at the same time keeping tabs on what's going on medically.
We've made it through the really hard physical stuff, and past the uncertainty of survival. We were braced for all that. Now comes the day-to-day drudgery of survival. The guilt (a good friend we met at AMC is struggling with repeated recurrences), the misery of the chemo side affects, the uncertainty of what the future holds, the denied emotions.
Early on in this process, the staff at Dana Farber told us of their resources - counselling, a library with books about cancer and survivorship, on-line and community cancer society and leukemia society support. At the time, we were focused on his treatment and tackling the next battle. We were optimistic and determined. We felt like we were doing just fine. We didn't really think about the reality of living with the long term side affects and the uncertainty about the future.
Now I'm feeling burned out, and all of us are struggling to re-establish some sense of "normal". The cancer and Ryan's continued malaise have become the elephant in the room. Ryan doesn't want to be defined by his disease. But he has none of his pre-cancer life. No college, no freedom to eat his favorite foods (and none of them taste right anyway), no nearby friends. Just the student loans which need to be deferred and he worries about repaying. Right now everything seems suspended in time. It will be another 10 months before he can live on his own or get a job or go to school.
My life for the past 7 months has been defined by Ryan's illness. Ryan is doing well enough that he no longer needs me available 24/7. I have things I want to do, but I have been reluctant to make any commitments or start anything for fear that Ryan will need me. It's time to extricate myself as much as possible and let Ryan and Sophia assume responsibility for his care.
So we're all struggling to make the transition from the fight for Ryan's life to living. For some reason I wasn't prepared for this stage. Maybe I was afraid to plan for this - his survival - out of fear that we'd never get here. Or maybe just taking one day at a time. Or maybe it's just emotions of the holidays. Or maybe we were all just so happy that he was going to survive that we were in denial about the rest of the struggle that lay ahead.
I know that these are things we all need to work through. Little by little we're each facing our demons and our fears. We'll figure it out.............
Don't get me wrong: we are all blessed beyond measure with Ryan's survival and the success of the transplant. It was what we prayed for and dreamed of.
I underestimated the emotional tailspin that would follow.
Ryan feels pretty lousy most of the time. He's having trouble eating and drinking adequately. As a result a PICC line (an IV that goes from his arm into the large veins in his chest) was placed last week so he can get IV fluids at home. After a few days of adequate hydration, he had been able to eat and drink more.
Brad Ferland came to visit and cheered him up watching some silly tattoo show on TV and making fun of the show. Last weekend Ryan went to New Hampshire to see "The Hobbit" wearing a mask aand gloves in the balcony of a small town theater. Brad arranged for Ryan and Sophia to have the balcony to themselves and to enter via a separate door after others were seated to avoid contact with crowds. Then they spent the night at a hotel in NH for their anniversary. He traveled with his IV in a backpack.
Shannon came for Christmas and I think that cheered him up a bit. She was able to get him laughing.
While I really can't speak for him and I don't want to misrepresent his experience, much of the time he seems to have lost interest in most things. And I know he gets really tired of me monitoring his hydration status and how much he eats.
I am walking a tightrope trying to let him be an autonomous adult while at the same time keeping tabs on what's going on medically.
We've made it through the really hard physical stuff, and past the uncertainty of survival. We were braced for all that. Now comes the day-to-day drudgery of survival. The guilt (a good friend we met at AMC is struggling with repeated recurrences), the misery of the chemo side affects, the uncertainty of what the future holds, the denied emotions.
Early on in this process, the staff at Dana Farber told us of their resources - counselling, a library with books about cancer and survivorship, on-line and community cancer society and leukemia society support. At the time, we were focused on his treatment and tackling the next battle. We were optimistic and determined. We felt like we were doing just fine. We didn't really think about the reality of living with the long term side affects and the uncertainty about the future.
Now I'm feeling burned out, and all of us are struggling to re-establish some sense of "normal". The cancer and Ryan's continued malaise have become the elephant in the room. Ryan doesn't want to be defined by his disease. But he has none of his pre-cancer life. No college, no freedom to eat his favorite foods (and none of them taste right anyway), no nearby friends. Just the student loans which need to be deferred and he worries about repaying. Right now everything seems suspended in time. It will be another 10 months before he can live on his own or get a job or go to school.
My life for the past 7 months has been defined by Ryan's illness. Ryan is doing well enough that he no longer needs me available 24/7. I have things I want to do, but I have been reluctant to make any commitments or start anything for fear that Ryan will need me. It's time to extricate myself as much as possible and let Ryan and Sophia assume responsibility for his care.
So we're all struggling to make the transition from the fight for Ryan's life to living. For some reason I wasn't prepared for this stage. Maybe I was afraid to plan for this - his survival - out of fear that we'd never get here. Or maybe just taking one day at a time. Or maybe it's just emotions of the holidays. Or maybe we were all just so happy that he was going to survive that we were in denial about the rest of the struggle that lay ahead.
I know that these are things we all need to work through. Little by little we're each facing our demons and our fears. We'll figure it out.............
Wednesday, December 12, 2012
December 12: T+48, hospitalized with fever
Yesterday I got caught up with my posts, reveling in how well Ryan's been doing. I may have jinxed him.....
Yesterday afternoon, Ryan felt really cold - not unusual. But he felt so cold that he went to bed around 4 pm and put on lots of extra covers. He woke up at 6 pm, still cold. At 8 pm he recognized that he had been shivering for several hours and took his temperature which was 101.
We called Dr. Cutler who told us he would need prophylactic IV antibiotics for at least 48 hours and a fever work-up with blood cultures. We packed up the usual hospital amenities like computer, iPod, chargers & underwear and went to Albany Med's ER. We had them call Dr. Cutler, per his request, for his recommendations. Great care - prompt treatment of his nausea and headache, protective isolation, etc. Because of the nausea drugs and pain meds, he slept through most of the ER visit and was sleeping when I left him at 3 am.
We took along his medicines just in case they don't have the tacrilimus in their pharmacy - and so he can self treat for nausea and pain if we run into problems!! Not kosher, but I'll do what I need to do to keep him comfortable.
Ryan asked the nurse (who is GREAT) to put on a mask. She replied, "Oh, you want me to wear a mask?" I was impressed with Ryan's response: "No, I don't want you to wear a mask. Everybody needs to wear a mask."
I warned them up front that due to some past experiences I was a bit of a control freak and I would be proactive in getting what he needs. The nurse was understanding. I asked her to put my phone number on the front of the chart and ask the resident to call me after he saw Ryan - wanting to be sure that all the bases are covered in the orders.
He was pretty dehydrated with a heart rate of 150 (his normal is around 65-70). The nurse called around 4 am to say that the resident who was to admit him was tied up with other emergencies and said that Ryan's admission exam would be done in the morning since he is stable. I asked the her to get a verbal order for a bolus of IV fluids and an increase in the rate to keep him hydrated and she readily agreed.
He was given tap water to drink with his pills in the ER. The only "safe" water was in the vending machine. So I bought him a couple of bottles. Today I packed up some Dasani and Gatorade, bought some frozen entrees, cereal bars and cereals that will be safe for him to eat. Foods that have been sitting on trays aren't safe, and he doesn't like to food there anyway.
I took Kaia to her speech therapy today and went to my physical therapy appointment (plantar fasciitis is the PITS!), now I'm off to Albany Med.
This is most likely just a bump in the road - I expected that this would happen at some point, if not repeatedly. Just hoping the antibiotics work and that he comes home in a few days. More prayers!
Yesterday afternoon, Ryan felt really cold - not unusual. But he felt so cold that he went to bed around 4 pm and put on lots of extra covers. He woke up at 6 pm, still cold. At 8 pm he recognized that he had been shivering for several hours and took his temperature which was 101.
We called Dr. Cutler who told us he would need prophylactic IV antibiotics for at least 48 hours and a fever work-up with blood cultures. We packed up the usual hospital amenities like computer, iPod, chargers & underwear and went to Albany Med's ER. We had them call Dr. Cutler, per his request, for his recommendations. Great care - prompt treatment of his nausea and headache, protective isolation, etc. Because of the nausea drugs and pain meds, he slept through most of the ER visit and was sleeping when I left him at 3 am.
We took along his medicines just in case they don't have the tacrilimus in their pharmacy - and so he can self treat for nausea and pain if we run into problems!! Not kosher, but I'll do what I need to do to keep him comfortable.
Ryan asked the nurse (who is GREAT) to put on a mask. She replied, "Oh, you want me to wear a mask?" I was impressed with Ryan's response: "No, I don't want you to wear a mask. Everybody needs to wear a mask."
I warned them up front that due to some past experiences I was a bit of a control freak and I would be proactive in getting what he needs. The nurse was understanding. I asked her to put my phone number on the front of the chart and ask the resident to call me after he saw Ryan - wanting to be sure that all the bases are covered in the orders.
He was pretty dehydrated with a heart rate of 150 (his normal is around 65-70). The nurse called around 4 am to say that the resident who was to admit him was tied up with other emergencies and said that Ryan's admission exam would be done in the morning since he is stable. I asked the her to get a verbal order for a bolus of IV fluids and an increase in the rate to keep him hydrated and she readily agreed.
He was given tap water to drink with his pills in the ER. The only "safe" water was in the vending machine. So I bought him a couple of bottles. Today I packed up some Dasani and Gatorade, bought some frozen entrees, cereal bars and cereals that will be safe for him to eat. Foods that have been sitting on trays aren't safe, and he doesn't like to food there anyway.
I took Kaia to her speech therapy today and went to my physical therapy appointment (plantar fasciitis is the PITS!), now I'm off to Albany Med.
This is most likely just a bump in the road - I expected that this would happen at some point, if not repeatedly. Just hoping the antibiotics work and that he comes home in a few days. More prayers!
Tuesday, December 11, 2012
December 1: 37 days post transplant
Ryan's doing remarkably well. His hematocrit (red blood cell measure) was 34! Normal is 36 or higher. His platelets are 146,000 - normal!! The WBC is normal. The "differential" - measurement of the kinds of white blood cells - is a little unusual with 20% eosinophils. Sometimes they rise with GVH (graft-vs-host) disease as well. Hanging in there and hoping this itch isn't a harbinger of uglier things to come.
Insurance continues to be fun. 'Nuf said.
There are little humorous things along the way that make the journey light, yet also poignant. Ryan had been a Tolkien fan since he was little. As luck would have it, the movie version of The Hobbit comes out in a few weeks. And movie theaters are on the short list of no-go's.
At his last appointment, Ryan attempted negotiations with Dr. Cutler: If I wear my mask and gloves and clean the seat with antiseptic wipes and go when it's not crowded (when would that be?), can I go see the Hobbit?NO
The "No" was out of Dr. Cutler's mouth almost before the last word was out of Ryan's mouth.
Dr. Cutler smiled and told Ryan that he would be taking his son opening night, and he'd be sure to tell Ryan all about it.
Little things that we all take for granted. Yet it's a small price to pay. We've reached the point where we're now confident that Ryan will survive. It's remarkable how quickly our priorities change. From normal life to fighting for survival to taking survival for granted and resenting the limitations.
To be a 23 year old married man living in your parent's house, dependent on others for everything and spending a year of your life in confinement has to be a real challenge. Overall Ryan bears this with good humor and positivity.
I'm wondering if I can arrange a private showing of The Hobbit. Maybe if I play the Cancer Card.......
Insurance continues to be fun. 'Nuf said.
There are little humorous things along the way that make the journey light, yet also poignant. Ryan had been a Tolkien fan since he was little. As luck would have it, the movie version of The Hobbit comes out in a few weeks. And movie theaters are on the short list of no-go's.
At his last appointment, Ryan attempted negotiations with Dr. Cutler: If I wear my mask and gloves and clean the seat with antiseptic wipes and go when it's not crowded (when would that be?), can I go see the Hobbit?NO
The "No" was out of Dr. Cutler's mouth almost before the last word was out of Ryan's mouth.
Dr. Cutler smiled and told Ryan that he would be taking his son opening night, and he'd be sure to tell Ryan all about it.
Little things that we all take for granted. Yet it's a small price to pay. We've reached the point where we're now confident that Ryan will survive. It's remarkable how quickly our priorities change. From normal life to fighting for survival to taking survival for granted and resenting the limitations.
To be a 23 year old married man living in your parent's house, dependent on others for everything and spending a year of your life in confinement has to be a real challenge. Overall Ryan bears this with good humor and positivity.
I'm wondering if I can arrange a private showing of The Hobbit. Maybe if I play the Cancer Card.......
December 11: T+46 Naughty eosinophils!
Ryan's had what seemed like the seven-year itch since he got home. Looking at all possible causes we've eliminated many medicines, changed to Dreft soap, added a second rinse to the laundry cycle, soaked in Aveeno baths, lathered on lotions, taken mega-dose anti-histamines. All to no avail.
Eosinophils are the white blood cells associated with histamine and allergic reactions. They are normally around 2-3%. Ryan's were at 20%. This suggested an allergic reaction of some kind - although "eo's" can also go up with GVH disease. No other symptoms or lab results suggested GVH, so we began focusing on potential allergens.
Delighted that he's growing blood cells and that they are capable of working! Sometimes immature cells can act a bit like teenagers (apologies to any youth reading this - and a disclaimer that I still sometimes default to my youthful rebelliousness) - they act out. So I knew there was a possibility that this was simply his new cells "doing their thing". And that this may just be a storm we need to ride out..........
Racking our brains and tweaking things daily, one day I suggested they wash not only the coverlet for their comforter, but the comforter as well. Ryan and Sophia told me it was down and couldn't be washed. Light Bulb Moment!! We switched comforters and - voila! - no itching the next day. Whew!!! Cured! We'll be avoiding goose down for a while.
Ryan's counts are (drum roll....) - NORMAL!! The cells still need to mature to be able to effectively protect him from infection, and we're not out of the woods in terms of chronic GVH which can occur in the next few months. He's still very nauseous and struggling to maintain his weight. And cold all the time, and tired and weak. All this is part of the process, and time is our friend now. We have confidence that with each day and week and month that goes by he will slowly gain strength and return to health.
I had the opportunity a few weeks ago to meet with the transplant nurse coordinator and the patient affairs representative from Brigham & Women's Hospital to discuss the frustrations we had during Ryan's hospitalization. In preparation for our meeting, I tried to look at the problems we encountered from a "consultant" point of view - looking at the system and policies, what went wrong, possible causes, policy changes that might minimize recurrences of the lapses, etc. I wrote up a document identifying the problem and the setting in which it occurred, which level provider was involved (nurse, resident, attending, pharmacy, etc), and suggestions for policy modifications that may correct the problems.
I was a bit nervous before the meeting - worried that my emotions would get the better of me and I'd turn it into a whine-fest. As I gave them copies of the document, I had to warn them that my attempts at objective observation were unavoidably tainted with a bit of maternal angst. It was gratifying to be able to go over things point by point and discuss with them things that I thought might be contributing factors and make suggestions that might help others.
I know in my heart that without the resources and expertise of those at Dana Farber Cancer Institute and Brigham & Women's Hospital Ryan would not be alive. And I am truly and deeply grateful for this. While it was therapeutic to me to "vent", my hope is that by reviewing our experience, procedural changes can be made that will take the level of care experienced by patients to the same level of excellence as the transplant itself.
Eosinophils are the white blood cells associated with histamine and allergic reactions. They are normally around 2-3%. Ryan's were at 20%. This suggested an allergic reaction of some kind - although "eo's" can also go up with GVH disease. No other symptoms or lab results suggested GVH, so we began focusing on potential allergens.
Delighted that he's growing blood cells and that they are capable of working! Sometimes immature cells can act a bit like teenagers (apologies to any youth reading this - and a disclaimer that I still sometimes default to my youthful rebelliousness) - they act out. So I knew there was a possibility that this was simply his new cells "doing their thing". And that this may just be a storm we need to ride out..........
Racking our brains and tweaking things daily, one day I suggested they wash not only the coverlet for their comforter, but the comforter as well. Ryan and Sophia told me it was down and couldn't be washed. Light Bulb Moment!! We switched comforters and - voila! - no itching the next day. Whew!!! Cured! We'll be avoiding goose down for a while.
Ryan's counts are (drum roll....) - NORMAL!! The cells still need to mature to be able to effectively protect him from infection, and we're not out of the woods in terms of chronic GVH which can occur in the next few months. He's still very nauseous and struggling to maintain his weight. And cold all the time, and tired and weak. All this is part of the process, and time is our friend now. We have confidence that with each day and week and month that goes by he will slowly gain strength and return to health.
I had the opportunity a few weeks ago to meet with the transplant nurse coordinator and the patient affairs representative from Brigham & Women's Hospital to discuss the frustrations we had during Ryan's hospitalization. In preparation for our meeting, I tried to look at the problems we encountered from a "consultant" point of view - looking at the system and policies, what went wrong, possible causes, policy changes that might minimize recurrences of the lapses, etc. I wrote up a document identifying the problem and the setting in which it occurred, which level provider was involved (nurse, resident, attending, pharmacy, etc), and suggestions for policy modifications that may correct the problems.
I was a bit nervous before the meeting - worried that my emotions would get the better of me and I'd turn it into a whine-fest. As I gave them copies of the document, I had to warn them that my attempts at objective observation were unavoidably tainted with a bit of maternal angst. It was gratifying to be able to go over things point by point and discuss with them things that I thought might be contributing factors and make suggestions that might help others.
I know in my heart that without the resources and expertise of those at Dana Farber Cancer Institute and Brigham & Women's Hospital Ryan would not be alive. And I am truly and deeply grateful for this. While it was therapeutic to me to "vent", my hope is that by reviewing our experience, procedural changes can be made that will take the level of care experienced by patients to the same level of excellence as the transplant itself.
Tuesday, November 20, 2012
November 20: T+ 26
Hard to believe it's almost been a month since the stem cell transplant. We wondered if Ryan would be home by Christmas, and he's here well before Thanksgiving.
We're getting settled in with some sense of normalcy for the first time since April. Catching up on things I've chosen to delay - like treatment for my plantar fasciitis, getting Kaia her speech therapy, resuming the piano lessons, etc.
For Ryan, the challenges continue. He's got a painful and itchy rash on his fingers and toes. Apparently not typical of graft-vs-host rashes (thank heavens), but miserable nonetheless. He takes so many medications that nausea is a baseline constant with unpredictable exacerbations. The cold really hits him, so it's difficult for him to get out and walk to build his strength. Typically he wears a hoodie to help him stay warm, even indoors. I suggested that he may want to get his walking in late at night in WalMart when there are few people there. He could walk with his mask and gloves on and not touch anything. But with the mask and gloves and a hoodie he's likely to have the police called on him or worse yet get shot by some vigilante!!
For months he's been girded up for battle, steeling himself to whatever comes next, determined to press on. Now that most of the battle is over, he seems weary and exhausted physically and emotionally. Sleep patterns are disturbed. There is no real routine or regularity to his life. He's working on doing some of his school work (he's taking 2 on-line courses from BYU that he has 14 months to complete and no deadlines for assignments). Little by little.
Tim's knee is better but still problematic.
Oh my goodness.....I'm starting to sound like the letters we used to get from Tim's folks in North Dakota - full of everybody's maladies and the list of recent funerals!!!
Tomorrow we go to Boston for follow-up, with an 8 am appointment (groan). They moved up the appointment which was scheduled for Friday. We're not sure whether it's because of the holiday or his rash.
Then home to bake the pies and do all the Thanksgiving prep - with a little more to be thankful for this year than most!!
---Barb
We're getting settled in with some sense of normalcy for the first time since April. Catching up on things I've chosen to delay - like treatment for my plantar fasciitis, getting Kaia her speech therapy, resuming the piano lessons, etc.
For Ryan, the challenges continue. He's got a painful and itchy rash on his fingers and toes. Apparently not typical of graft-vs-host rashes (thank heavens), but miserable nonetheless. He takes so many medications that nausea is a baseline constant with unpredictable exacerbations. The cold really hits him, so it's difficult for him to get out and walk to build his strength. Typically he wears a hoodie to help him stay warm, even indoors. I suggested that he may want to get his walking in late at night in WalMart when there are few people there. He could walk with his mask and gloves on and not touch anything. But with the mask and gloves and a hoodie he's likely to have the police called on him or worse yet get shot by some vigilante!!
For months he's been girded up for battle, steeling himself to whatever comes next, determined to press on. Now that most of the battle is over, he seems weary and exhausted physically and emotionally. Sleep patterns are disturbed. There is no real routine or regularity to his life. He's working on doing some of his school work (he's taking 2 on-line courses from BYU that he has 14 months to complete and no deadlines for assignments). Little by little.
Tim's knee is better but still problematic.
Oh my goodness.....I'm starting to sound like the letters we used to get from Tim's folks in North Dakota - full of everybody's maladies and the list of recent funerals!!!
Tomorrow we go to Boston for follow-up, with an 8 am appointment (groan). They moved up the appointment which was scheduled for Friday. We're not sure whether it's because of the holiday or his rash.
Then home to bake the pies and do all the Thanksgiving prep - with a little more to be thankful for this year than most!!
---Barb
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