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.............
Thursday, December 27, 2012
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
Tuesday, November 13, 2012
November 13: T+19
Things are going along smoothly. Ryan tires easily and naps often, but is enjoying being able do more things. He and Sophia have gone for a couple of drives. With Ryan restricted from being out among people Sophia does the actual "errand" while he drives.
He's eating a lot. Says things don't really taste normal yet, but he's eating well.
Liver complications can cause fluid retention, so daily weights are important. He's gained 5 pounds in two days. Which is the level at which he was to call and notify someone. He has not fluid retention in his legs, and the weights have been at different times of day with different clothing, some before and some after meals, etc. So it's hard to consider them reliable. Going forward he'll weigh first thing in the morning. Right now I suspect that the weight gain is largely because he's actually getting lots of calories. But we'll watch it closely.
This morning he began having a painful sensation in his thumbs and index fingers. There are faint tiny red spots, but nothing obvious. Skin manifestations of graft-vs-host are common, so I called the doctor just to be sure. He said it didn't sound like GVH. Probably jumped the gun. Never sure whether I'm calling too early or too late!! We head back to Boston tomorrow for follow-up. It's reassuring to know that someone smarter than me will be evaluating him regularly.
Sophia is doing a great job keeping the place clean and sanitizing the surfaces that need daily cleaning. We're enjoying cooking together. She's continuing her paralegal course.
Yesterday was Meghan's birthday. She's back to her normal hectic schedule and spent the day in meetings in Salt Lake City. Meanwhile her "super cells" are going strong here.
---Barb
He's eating a lot. Says things don't really taste normal yet, but he's eating well.
Liver complications can cause fluid retention, so daily weights are important. He's gained 5 pounds in two days. Which is the level at which he was to call and notify someone. He has not fluid retention in his legs, and the weights have been at different times of day with different clothing, some before and some after meals, etc. So it's hard to consider them reliable. Going forward he'll weigh first thing in the morning. Right now I suspect that the weight gain is largely because he's actually getting lots of calories. But we'll watch it closely.
This morning he began having a painful sensation in his thumbs and index fingers. There are faint tiny red spots, but nothing obvious. Skin manifestations of graft-vs-host are common, so I called the doctor just to be sure. He said it didn't sound like GVH. Probably jumped the gun. Never sure whether I'm calling too early or too late!! We head back to Boston tomorrow for follow-up. It's reassuring to know that someone smarter than me will be evaluating him regularly.
Sophia is doing a great job keeping the place clean and sanitizing the surfaces that need daily cleaning. We're enjoying cooking together. She's continuing her paralegal course.
Yesterday was Meghan's birthday. She's back to her normal hectic schedule and spent the day in meetings in Salt Lake City. Meanwhile her "super cells" are going strong here.
---Barb
Sunday, November 11, 2012
November 10: T+16 - HOME!!!
Ryan's home!!! It feels so good to bring him home. Sounds strange, but it's reminiscent of bringing a baby home from the hospital!!
On Tuesday, we'll make the drive to Boston for follow-up. We'll need to plan ahead a little bit since Ryan can't eat the cafeteria food. He'll have blood tests and an appointment with Dr. Cutler's transplant physician assistant, and maybe a platelet transfusion. And most likely we'll drive home to our own beds.
Although we're not completely out of the woods, it feels like we're over the hump. Ryan can now consider himself a cancer survivor!!
Ryan still has lots of meds to take, nausea and a messed up GI tract, a central line that needs to be flushed with saline and heparin solutions daily and carefully covered for showers. He needs to take his temperature twice daily and weigh himself daily. But he can shower, go for walks, sleep without being interrupted, eat his favorite foods (minus uncooked veggies & fruit and his favorite jalapenos).
We all get to sleep in our own beds. Tim and the girls have a long weekend due to Veteran's Day. A rare opportunity to just be together as a family, relaxing, watching TV, sleeping late.
Of course, this would be the weekend that Kaia is coughing...... So she's semi-quarantined in her room with all her electronic toys, and discouraged from being in the same room as Ryan.
In the past, I've been fairly cavalier about hand-washing, etc. Believing that my kids need to develop immunity. Avoiding hand sanitizers as generally unhealthy because they wipe out the body's good bacteria as well as disease-causing germs.
But that was then...... Sophia is being careful to clean the doorknobs with antiseptic wipes and do the daily bathroom surface cleaning. MeiLin is learning to clean her hands with antiseptic wipes before she empties the dishwasher or sets the table. I have to learn to use the paper hand towels when I'm cooking rather than the terry cloth hand towels which could harbor moisture, meat juices and harmful bacteria. After we do the dishes, we spray down the counters with disinfectant as if we were a commercial food service kitchen.
But mostly, we just relax and enjoy the blessing of being together at home. At Dana Farber and Brigham & Womens - even though they do fantastic things - there were always many who were so much worse off than Ryan. We do feel truly blessed. I have rarely cried throughout this whole ordeal, but today in church as we sang hymns I couldn't stop the tears - of gratitude.
A million thanks for all the prayers, fasting, gifts, emotional support, meals, help with house cleaning and so much more.
---Barb
On Tuesday, we'll make the drive to Boston for follow-up. We'll need to plan ahead a little bit since Ryan can't eat the cafeteria food. He'll have blood tests and an appointment with Dr. Cutler's transplant physician assistant, and maybe a platelet transfusion. And most likely we'll drive home to our own beds.
Although we're not completely out of the woods, it feels like we're over the hump. Ryan can now consider himself a cancer survivor!!
Ryan still has lots of meds to take, nausea and a messed up GI tract, a central line that needs to be flushed with saline and heparin solutions daily and carefully covered for showers. He needs to take his temperature twice daily and weigh himself daily. But he can shower, go for walks, sleep without being interrupted, eat his favorite foods (minus uncooked veggies & fruit and his favorite jalapenos).
We all get to sleep in our own beds. Tim and the girls have a long weekend due to Veteran's Day. A rare opportunity to just be together as a family, relaxing, watching TV, sleeping late.
Of course, this would be the weekend that Kaia is coughing...... So she's semi-quarantined in her room with all her electronic toys, and discouraged from being in the same room as Ryan.
In the past, I've been fairly cavalier about hand-washing, etc. Believing that my kids need to develop immunity. Avoiding hand sanitizers as generally unhealthy because they wipe out the body's good bacteria as well as disease-causing germs.
But that was then...... Sophia is being careful to clean the doorknobs with antiseptic wipes and do the daily bathroom surface cleaning. MeiLin is learning to clean her hands with antiseptic wipes before she empties the dishwasher or sets the table. I have to learn to use the paper hand towels when I'm cooking rather than the terry cloth hand towels which could harbor moisture, meat juices and harmful bacteria. After we do the dishes, we spray down the counters with disinfectant as if we were a commercial food service kitchen.
But mostly, we just relax and enjoy the blessing of being together at home. At Dana Farber and Brigham & Womens - even though they do fantastic things - there were always many who were so much worse off than Ryan. We do feel truly blessed. I have rarely cried throughout this whole ordeal, but today in church as we sang hymns I couldn't stop the tears - of gratitude.
A million thanks for all the prayers, fasting, gifts, emotional support, meals, help with house cleaning and so much more.
---Barb
Friday, November 9, 2012
November 9: T+15 & Going Home!!!!
What a whirlwind! I drove to Boston 2 days ago, after what I thought had been a false alarm about early discharge, and was greeted with the news that Ryan would definitely be going home this weekend!!
Our reservation at the Hope Lodge was to start on the 18th, and there are no romms available until then - that would leave us in a hotel for a week if we were to stay in Boston. Picturing all the things that could happen to carpets, etc, in hotel rooms plus no capacity to cook for him, I wasn't very excited about that option. His nurse told us that most of their patients go home - even those who live long drives away. Since we have reliable transportation, can afford gas, and can recognize problems if they develop, he suggested that Ryan would be more comfortable at home and that we'd be able to cook more easily, he'd get more rest, etc. Ryan jumped at the option. I must admit, it seems a lot more comfortable for all concerned.
Two days to do a thorough house cleaning........
I called a few friends from my church who organized lots of help for us. Sophia and I hopped in the car and hit the road for home just as the Noreaster hit the area. We were at a standstill on the Mass Turnpike for the better part of 2 hours - sometimes literally not moving for long enough that when we finally moved there were rectangular patches of road free of snow where cars had been standing!
About half way home we drove out of the storm and it was free sailing from there.
The experience had me questioning what will happen if Ryan gets sick and there's a storm..... But I'm confident that Albany Med can consult with Dr. Cutler and handle whatever comes up if the weather prevents us traveling.
With many hands making light work, we attacked the place most of Thursday and until around noon today. The place smells like a combination of bleach and a self-cleaning oven. But every inch of blinds, molding, doorways, floors, cabinets and fixtures has been thoroughly cleaned. With the exception of the girls' room. If I'd cleaned that today I would have just thrown all the precious objects in trash bags. So I closed that door and drove away. Since Ryan can easily avoid that room, that's a project for tomorrow.
At Brigham & Women's we got instructions about flushing his line, changing the dressing, checking his temp twice daily, weighing him daily (a rapid increase in weight could mean fluid retention due to liver problems). The long list of medications including antibiotics and antifungals, nausea & pain meds, vitamins, anti-rejection meds, etc. Sophia is going to make an excel sheet to make it easier to keep track of them.
And printed instructions about what to do, what not to do, what to eat, where not to go, when to call, etc. Look out for rashes, fluid retention, fevers, diarrhea, yellowing of the sclera (eyes).
We received bags full of dressing supplies, masks, gloves, IV flush solution, meds, barf bags for the ride home, etc.
The nutritionist will meet with us tomorrow to give final instructions on how to feed him safely and answer our questions.
Today's counts: WBC 4,940!!!! H&H incresing ever so slightly. Platelets 35,000 - the same as yesterday. We'll come back to Dana Farber on Wednesday for labs and an appointment.
Sophia and I loaded up most of Ryan's stuff and the things we had left in the hotel room. We'll go to the hospital early tomorrow so we're there for any additional instructions.
Off to bed for what we hope will be our last night in a hotel room for a long time.....
---Barb
Our reservation at the Hope Lodge was to start on the 18th, and there are no romms available until then - that would leave us in a hotel for a week if we were to stay in Boston. Picturing all the things that could happen to carpets, etc, in hotel rooms plus no capacity to cook for him, I wasn't very excited about that option. His nurse told us that most of their patients go home - even those who live long drives away. Since we have reliable transportation, can afford gas, and can recognize problems if they develop, he suggested that Ryan would be more comfortable at home and that we'd be able to cook more easily, he'd get more rest, etc. Ryan jumped at the option. I must admit, it seems a lot more comfortable for all concerned.
Two days to do a thorough house cleaning........
I called a few friends from my church who organized lots of help for us. Sophia and I hopped in the car and hit the road for home just as the Noreaster hit the area. We were at a standstill on the Mass Turnpike for the better part of 2 hours - sometimes literally not moving for long enough that when we finally moved there were rectangular patches of road free of snow where cars had been standing!
About half way home we drove out of the storm and it was free sailing from there.
The experience had me questioning what will happen if Ryan gets sick and there's a storm..... But I'm confident that Albany Med can consult with Dr. Cutler and handle whatever comes up if the weather prevents us traveling.
With many hands making light work, we attacked the place most of Thursday and until around noon today. The place smells like a combination of bleach and a self-cleaning oven. But every inch of blinds, molding, doorways, floors, cabinets and fixtures has been thoroughly cleaned. With the exception of the girls' room. If I'd cleaned that today I would have just thrown all the precious objects in trash bags. So I closed that door and drove away. Since Ryan can easily avoid that room, that's a project for tomorrow.
At Brigham & Women's we got instructions about flushing his line, changing the dressing, checking his temp twice daily, weighing him daily (a rapid increase in weight could mean fluid retention due to liver problems). The long list of medications including antibiotics and antifungals, nausea & pain meds, vitamins, anti-rejection meds, etc. Sophia is going to make an excel sheet to make it easier to keep track of them.
And printed instructions about what to do, what not to do, what to eat, where not to go, when to call, etc. Look out for rashes, fluid retention, fevers, diarrhea, yellowing of the sclera (eyes).
We received bags full of dressing supplies, masks, gloves, IV flush solution, meds, barf bags for the ride home, etc.
The nutritionist will meet with us tomorrow to give final instructions on how to feed him safely and answer our questions.
Today's counts: WBC 4,940!!!! H&H incresing ever so slightly. Platelets 35,000 - the same as yesterday. We'll come back to Dana Farber on Wednesday for labs and an appointment.
Sophia and I loaded up most of Ryan's stuff and the things we had left in the hotel room. We'll go to the hospital early tomorrow so we're there for any additional instructions.
Off to bed for what we hope will be our last night in a hotel room for a long time.....
---Barb
Tuesday, November 6, 2012
November 6: T+12
Ryan's mouth is still sore, but hasn't gotten much worse since his last methotrexate yesterday. His pain is being well controlled.
Ryan says his WBC has been steadily increasing since Sunday, but I don't have the numbers. He got his first dose of neupegen today to stimulate WBC production, so I expect we'll start to see significant increases over the next few days.
They've started planning for his discharge. A funny twist to this: someone told Ryan he'd be discharged on Thursday or Friday. When he told me I started to freak out - part of me delighted that he'll have a change of scenery, etc. But our reservations for Hope Lodge aren't until November 18th since we were told he'd be hospitalized for at least a month..... We can't cook at the hotel, so I'm trying to figure out what on earth we'll do. I called to see if we can get into the Lodge earlier - there are a few days available, but not the whole block.
Then Ryan's nurse told me he is nowhere near ready for discharge and it will be sometime next week at the earliest. Whew...... I envisioned having to call for help and scramble around to do the deep cleaning that needs to be done within a week of him coming home, which was to b in December. But I'm off the hook for now!
I'm sure Ryan is disappointed, but discharge this early didn't sound medically safe to me. He'll need to be able to eat, off his IV narcotics and able to maintain blood cell production.
Tim has spent the day with his knee iced, but his pain is MUCH less now that the blood has been removed and the brace keeps it stable.
Having Dad oversee the homework is yielding big rewards. Kaia is routinely bringing home 100's, and is actually telling us about quizzes and tests so we can help her review. It's really neat to see her excited about her grades. Pulling Dad's chain isn't as much fun as pulling Mom's ;) !! MeiLin continues to be a perfectionist in school.
I've gotten several nights of good sleep and am grateful that Tim was home for the past few days. Sad it took a painful knee, tho! We've had very little time to talk or be together since all this started, and it's nice to spend time with my best friend.
Back to Boston tomorrow to talk with the experts about what to expect at discharge, and to plan on how to feed Ryan within his food safety guidelines in a hotel room with just a microwave for several days. I think I'll take along my crock pot so it's not all frozen nuked meals.
Thanks to all those who have brought in meals for the family. They're getting spoiled with all the best cooks in my church and at Tim's office cooking for them. But desserts every night really needs to stop!!!
Thanks for all the prayers. We see the fruits every day. The nurses and doctors express amazement at how well Ryan has done. I secretly keep fearing that things are going too well!! The old cup-half-full thing. But I'm beginning to believe that we're in the home stretch.
---Barb
Ryan says his WBC has been steadily increasing since Sunday, but I don't have the numbers. He got his first dose of neupegen today to stimulate WBC production, so I expect we'll start to see significant increases over the next few days.
They've started planning for his discharge. A funny twist to this: someone told Ryan he'd be discharged on Thursday or Friday. When he told me I started to freak out - part of me delighted that he'll have a change of scenery, etc. But our reservations for Hope Lodge aren't until November 18th since we were told he'd be hospitalized for at least a month..... We can't cook at the hotel, so I'm trying to figure out what on earth we'll do. I called to see if we can get into the Lodge earlier - there are a few days available, but not the whole block.
Then Ryan's nurse told me he is nowhere near ready for discharge and it will be sometime next week at the earliest. Whew...... I envisioned having to call for help and scramble around to do the deep cleaning that needs to be done within a week of him coming home, which was to b in December. But I'm off the hook for now!
I'm sure Ryan is disappointed, but discharge this early didn't sound medically safe to me. He'll need to be able to eat, off his IV narcotics and able to maintain blood cell production.
Tim has spent the day with his knee iced, but his pain is MUCH less now that the blood has been removed and the brace keeps it stable.
Having Dad oversee the homework is yielding big rewards. Kaia is routinely bringing home 100's, and is actually telling us about quizzes and tests so we can help her review. It's really neat to see her excited about her grades. Pulling Dad's chain isn't as much fun as pulling Mom's ;) !! MeiLin continues to be a perfectionist in school.
I've gotten several nights of good sleep and am grateful that Tim was home for the past few days. Sad it took a painful knee, tho! We've had very little time to talk or be together since all this started, and it's nice to spend time with my best friend.
Back to Boston tomorrow to talk with the experts about what to expect at discharge, and to plan on how to feed Ryan within his food safety guidelines in a hotel room with just a microwave for several days. I think I'll take along my crock pot so it's not all frozen nuked meals.
Thanks to all those who have brought in meals for the family. They're getting spoiled with all the best cooks in my church and at Tim's office cooking for them. But desserts every night really needs to stop!!!
Thanks for all the prayers. We see the fruits every day. The nurses and doctors express amazement at how well Ryan has done. I secretly keep fearing that things are going too well!! The old cup-half-full thing. But I'm beginning to believe that we're in the home stretch.
---Barb
Monday, November 5, 2012
November 5: T+11
Ryan got his last methotrexate today, plus platelet and red cell transfusions. He has a headache, but his mouth sores have improved. They talked to him today about discharge. Tomorrow he starts the neupegen to stimulate growth of WBCs.
By the end of the day yesterday, Tim could hardly walk. He agreed to see an orthopedist today. They did some X-rays and diagnosed arthritis (and told him on down the road there may be more extensive treatment required - i.e. total knee replacement....).
They drew off a large syringe of blood from the joint - thanks to his coumadin (blood thinner) he had hemorrhaged into the joint. After withdrawing the fluid they injected steroids and fitted him for a brace, and told him to stay at home with it iced and elevated for 3 days. He's in a lot less pain now.
Today's advice: Don't ever wonder what else can go wrong!! Actually, we feel blessed that it wasn't worse and he won't need an arthroscopy in the middle of all this - or at least that's what we're hoping.
Let's see what tomorrow brings...........!!!
---Barb
By the end of the day yesterday, Tim could hardly walk. He agreed to see an orthopedist today. They did some X-rays and diagnosed arthritis (and told him on down the road there may be more extensive treatment required - i.e. total knee replacement....).
They drew off a large syringe of blood from the joint - thanks to his coumadin (blood thinner) he had hemorrhaged into the joint. After withdrawing the fluid they injected steroids and fitted him for a brace, and told him to stay at home with it iced and elevated for 3 days. He's in a lot less pain now.
Today's advice: Don't ever wonder what else can go wrong!! Actually, we feel blessed that it wasn't worse and he won't need an arthroscopy in the middle of all this - or at least that's what we're hoping.
Let's see what tomorrow brings...........!!!
---Barb
Sunday, November 4, 2012
November 4: T+10 - ENGRAFTMENT!!!
Ryan's WBCs have been below 150 for several days, but this morning his WBC was slightly over 300. (Ryan reported 3,000 - but math never was his strong suit!!!)
That means Meghan's cells are growing!!
Tomorrow he'll get his final dose of methotrexate which will most likely drop his WBCs again and cause more mouth sores.
Today he was able to eat part of a grilled cheese sandwich. That's real progress.
On Tuesday, they will start his neupegen - to make him produce WBCs. It's the same medicine they gave Meghan before she donated the cells.
And the nurse says if all goes well by next weekend they'll be talking about discharge.
How exciting is that!!
Grow, little cells, grow!
On the home front, Tim has homework, etc, under control. Kaia is coming home with some of her best grades ever.
Tim twisted his knee earlier this week and it's quite swollen. So painful that he left church before it was over and had ice packs on it for most of the day. He may stay home from work tomorrow. And from the looks of it, I'd like him to see an orthopedist (but my opinion doesn't hold much when it comes to his medical care! Doctors are the worst at taking care of themselves....)
---Barb
That means Meghan's cells are growing!!
Tomorrow he'll get his final dose of methotrexate which will most likely drop his WBCs again and cause more mouth sores.
Today he was able to eat part of a grilled cheese sandwich. That's real progress.
On Tuesday, they will start his neupegen - to make him produce WBCs. It's the same medicine they gave Meghan before she donated the cells.
And the nurse says if all goes well by next weekend they'll be talking about discharge.
How exciting is that!!
Grow, little cells, grow!
On the home front, Tim has homework, etc, under control. Kaia is coming home with some of her best grades ever.
Tim twisted his knee earlier this week and it's quite swollen. So painful that he left church before it was over and had ice packs on it for most of the day. He may stay home from work tomorrow. And from the looks of it, I'd like him to see an orthopedist (but my opinion doesn't hold much when it comes to his medical care! Doctors are the worst at taking care of themselves....)
---Barb
Friday, November 2, 2012
November 2: Day T+8
Ryan slept well with adequate Morphine doses last night. Today the Pain Management Team was consulted to start PCA (Patient Controlled Analgesia) - a pump where Ryan can dose himself with a computer programmed to give a certain amount each time he pushes the button but with limits so he can't overdose.
Now he's getting what he needs. There was a snag in getting the PCA dose right, and I was delighted to see that the nurses and resident were pushing really hard to get him what he needed and really apologetic that there have been so many problems getting him pain relief. Sounds crazy, but even though there was a delay, I felt like I could relax because others were advocating for him and willing to get him what he needs.
Today his platelets hit 5,000 (normal: over 150,000), so he got a platelet transfusion.
His temp hit 100.5 at midnight last night. The resident called to say that they had done cultures and were starting antibiotics. His temp has been below 100 all day today.
He's still able to take some of his medicines by mouth, but is not taking much nutrition at all. I suspect that TPN will be started in the next day or two. The attending says the mouth sores will subside about day 16-18.
All in all, things are progressing exactly as expected. The mouth sores, inability to eat, transfusions and fevers are par for the course. The attending says he couldn't be doing any better.
Knowing this, it's reassuring to watch him relax and sleep now that he's got with adequate pain control. The more of this he can sleep through, the better.
---Barb
Now he's getting what he needs. There was a snag in getting the PCA dose right, and I was delighted to see that the nurses and resident were pushing really hard to get him what he needed and really apologetic that there have been so many problems getting him pain relief. Sounds crazy, but even though there was a delay, I felt like I could relax because others were advocating for him and willing to get him what he needs.
Today his platelets hit 5,000 (normal: over 150,000), so he got a platelet transfusion.
His temp hit 100.5 at midnight last night. The resident called to say that they had done cultures and were starting antibiotics. His temp has been below 100 all day today.
He's still able to take some of his medicines by mouth, but is not taking much nutrition at all. I suspect that TPN will be started in the next day or two. The attending says the mouth sores will subside about day 16-18.
All in all, things are progressing exactly as expected. The mouth sores, inability to eat, transfusions and fevers are par for the course. The attending says he couldn't be doing any better.
Knowing this, it's reassuring to watch him relax and sleep now that he's got with adequate pain control. The more of this he can sleep through, the better.
---Barb
Thursday, November 1, 2012
November 1: T plus 7
I went home for 2 days and went Trick-or-Treating with the girls last night. Back to Boston today.
Ryan has developed the extensive mouth sores right on schedule. His cheeks are so swollen he looks like a squirrel with a mouth full of nuts and he can barely talk. He's unable to eat any solids at all, and is having difficulty drinking as well.
After a little negotiation (Ryan told me not to talk about hospital problems, so that's all I'll say....), he is now getting adequate doses of morphine since it's difficult to swallow pain pills. With the exception of a few meds which can only be given by mouth, all his meds have now been switched to IV.
No headaches for the past 3 days!! I think that's a record since his diagnosis. For the most part the nausea is under control.
Labs: WBC 110, Platelets 17,000, H&H holding firm at 10 & 30. I suspect he'll get platelet transfusions tomorrow.
He'll be getting another dose of methotrexate on Day 11. So the mouth sores will continue for quite a while. And on Day 11 we might start to see signs of engraftment.
Temperatures have been running 99+, with one temp of 100.3 this evening. We were told to expect fevers, so that's right on schedule, too. I'm not sure at what temp they will do blood and urine cultures and start IV antibiotics....
As tough as this is for Ryan, his age and overall health are in his favor. He's lost 10 pounds so far, and he'll probably lose much more since he can't eat now. TPN (total parenteral nutrition - giving him all his required nutrients by IV) may be necessary if his ability to swallow and take fluids continues to deteriorate. This has to be incredibly difficult for those who are older and sicker to begin with.
This is the tough stretch.
I heard a quotation from Winston Churchill today: "If you're going through Hell, keep going." And so we are.
---Barb
Ryan has developed the extensive mouth sores right on schedule. His cheeks are so swollen he looks like a squirrel with a mouth full of nuts and he can barely talk. He's unable to eat any solids at all, and is having difficulty drinking as well.
After a little negotiation (Ryan told me not to talk about hospital problems, so that's all I'll say....), he is now getting adequate doses of morphine since it's difficult to swallow pain pills. With the exception of a few meds which can only be given by mouth, all his meds have now been switched to IV.
No headaches for the past 3 days!! I think that's a record since his diagnosis. For the most part the nausea is under control.
Labs: WBC 110, Platelets 17,000, H&H holding firm at 10 & 30. I suspect he'll get platelet transfusions tomorrow.
He'll be getting another dose of methotrexate on Day 11. So the mouth sores will continue for quite a while. And on Day 11 we might start to see signs of engraftment.
Temperatures have been running 99+, with one temp of 100.3 this evening. We were told to expect fevers, so that's right on schedule, too. I'm not sure at what temp they will do blood and urine cultures and start IV antibiotics....
As tough as this is for Ryan, his age and overall health are in his favor. He's lost 10 pounds so far, and he'll probably lose much more since he can't eat now. TPN (total parenteral nutrition - giving him all his required nutrients by IV) may be necessary if his ability to swallow and take fluids continues to deteriorate. This has to be incredibly difficult for those who are older and sicker to begin with.
This is the tough stretch.
I heard a quotation from Winston Churchill today: "If you're going through Hell, keep going." And so we are.
---Barb
Monday, October 29, 2012
October 29: T plus 4
It's Monday, and I'm back in Boston.
Spent the weekend at home in NY with Tim and the girls. Halloween party Friday night. TaeKwonDo Championship on Saturday. Sunay: Church, help Kaia maky a pumpkin that looks like Thurgood MArshall for a school project. And preparation for Hurricane Sandy's effects - bringing in the patio furniture, turning over the trampoline and basketball hoop, getting out the flashlights, candles, etc - before hitting the road back to Boston. On my way back to Boston Sunday evening, I passed LOTS of utility repair trucks heading east on the Mass Turnpike.
Reassured by numerous calls from Ryan's residents and intern over the weekend updating me on his status. They were on top of everything. I've gotta give it to these young doctors. After my less-than-gracious temper tantrum on Friday it had to take a lot of guts to call me!!!
Relieved when I arrive in Boston to see Ryan doing quite well. Still having some nausea, but minimal headache over the past 2 days.
What's happening to him now?
His RBC counts are fairly stable at Hgb 11 and Hct of 31. Platelets have dropped to 58,000 (83,000 yesterday; normal over 150,000). WBC 150. That's 150 - not thousands. Eeeek!!! Normal is 6,000-10,000. But I guess that's the goal, isn't it? To wipe out his own WBCs which could still hold some cancer cells.
Sometime in the next day or two, he'll need platelet transfusions - when he reaches 10. RBC transfusions will be done when he hits Hct of 21. As a surgeon and OB/Gyn, I'm accustomed to transfusioning when a patient's Hct is around 25 - but that is in patients who may loose more blood and whose cause of anemia is blood loss, and therefore they've also lost the iron necessary to make more red blood cells.
In Ryan's case, he hasn't "lost" blood - he just isn't producing the red cells, and they naturally only live for about 120 days. The difference is that his body still has all his iron from his RBCs, which the body reclaims as cells naturally die, then recycles into new cells (when the marrow is working, that is). So giving him lots of RBCs to get him non-anemic (normal is Hemoglobin/Hgb over 12 and Hematocrit/Hct over 36) could result in too much iron in his body.
His blood chemistries are normal, no signs of organ damage from the chemo or radiation.
He has lost 9 pounds since admission. No appetite, even when he's not having nausea. He's mostly eating cereal and milk (Lactaid rather than normal milk, since the combination of chemo and radiation cause damage to the intestinal lining, which makes most people lactose intolerant until it all heals). Diarrhea is also common due to both the damage to the GI lining and the GI antibiotics. And starting to get itchy skin, which is also common.
Current medications?
--Tacrolimis and methotrexate to minimize graft-versus-host disease, or rejection of his body by Meghan's cells
--Mouth care meds: an antifungal and another med that he swishes around like mouthwash several times a day to keep him mouth lining as healthy as possible
--Antibiotics which are not absorbed but stay in his gastrointestinal tract to minimize his natural intestinal bacteria
--Antifungal pills (swallowed) to prevent fungal infections
--Antivirals to prevent viral infections including "opportunistic" infections such as shingles.
--Antacids and prilosec to minimize gastric acid effect on his stomach and esophagus (the GI tract is very sensitive to both chemo and radiation, and ulcers can develop)
--Magnesium: to replace what his body loses after chemo and radiation
--Multiple nausea meds: scopolamine patch, sublingual Zofran, IV Zofran, Compazine, Ativan
--Pain meds: options of oral or IV if needed
--and probably more I don't know about yet............
(It's going to take a excel program to keep up with his meds when we leave the hospital.....)
What can we expect?
--Mouth sores (mucositis) - chemo and radiation affect the fastest growing cells in the body: cancer cells, blood cells, and the cells that line the GI tract. They told us that almost everybody gets mouth sores and, sure enough, Ryan just texted that he has his first sore. These can be severe enough to prevent eating, and sometimes require serious pain meds and IV nutrition.
--Transfusions of RBCs and platelets
--More diarrhea
--Hair loss which should occur next weekend
--Fevers and infections - hopefully minor, but sometimes serious
--Possibility of severe liver or kidney problems
--And in about 7 days - Day T plus 11 - we should start seeing his WBCs increase as Meghan's stem cells start functioning and producing cells
It is VERY reassuring that things as going precisely according to plan / routine. All of his symptoms seem to be less that many others experience. Whew..........
And I am so grateful for the nurses who are providing so much TLC and emotional support as well as necessary medical care. The team of doctors seems to have gotten past the rough spots and are now very responsive to his needs - probably a valuable lesson for the physicians-in-training, and they have risen to the occasion superbly.
Thanks to the missionaries and temple workers whose names I don't know who came by this weekend after a call from the social worker, and provided love and support in my absence. Sadly for Ryan, he isn't allowed to eat the homemade pumpkin chocolate chip cookies. So Sophia and I stepped up and took care of the problem!!
Thanks to all the church friends and Tim's co-workers who are providing so many meals for Tim and the girls!! But they're all getting spoiled - they really don't need desserts with every meal!!!!!
Also very grateful that Hurricane Sandy chose to come ashore south of Boston. The city is pretty much at a stand-still due to closure of the "T", but I think I can forget the Katrina-like effects on the multitude of huge hospitals so close to the coast here in Boston.
I think I'm starting to relax........
---Barb
Spent the weekend at home in NY with Tim and the girls. Halloween party Friday night. TaeKwonDo Championship on Saturday. Sunay: Church, help Kaia maky a pumpkin that looks like Thurgood MArshall for a school project. And preparation for Hurricane Sandy's effects - bringing in the patio furniture, turning over the trampoline and basketball hoop, getting out the flashlights, candles, etc - before hitting the road back to Boston. On my way back to Boston Sunday evening, I passed LOTS of utility repair trucks heading east on the Mass Turnpike.
Reassured by numerous calls from Ryan's residents and intern over the weekend updating me on his status. They were on top of everything. I've gotta give it to these young doctors. After my less-than-gracious temper tantrum on Friday it had to take a lot of guts to call me!!!
Relieved when I arrive in Boston to see Ryan doing quite well. Still having some nausea, but minimal headache over the past 2 days.
What's happening to him now?
His RBC counts are fairly stable at Hgb 11 and Hct of 31. Platelets have dropped to 58,000 (83,000 yesterday; normal over 150,000). WBC 150. That's 150 - not thousands. Eeeek!!! Normal is 6,000-10,000. But I guess that's the goal, isn't it? To wipe out his own WBCs which could still hold some cancer cells.
Sometime in the next day or two, he'll need platelet transfusions - when he reaches 10. RBC transfusions will be done when he hits Hct of 21. As a surgeon and OB/Gyn, I'm accustomed to transfusioning when a patient's Hct is around 25 - but that is in patients who may loose more blood and whose cause of anemia is blood loss, and therefore they've also lost the iron necessary to make more red blood cells.
In Ryan's case, he hasn't "lost" blood - he just isn't producing the red cells, and they naturally only live for about 120 days. The difference is that his body still has all his iron from his RBCs, which the body reclaims as cells naturally die, then recycles into new cells (when the marrow is working, that is). So giving him lots of RBCs to get him non-anemic (normal is Hemoglobin/Hgb over 12 and Hematocrit/Hct over 36) could result in too much iron in his body.
His blood chemistries are normal, no signs of organ damage from the chemo or radiation.
He has lost 9 pounds since admission. No appetite, even when he's not having nausea. He's mostly eating cereal and milk (Lactaid rather than normal milk, since the combination of chemo and radiation cause damage to the intestinal lining, which makes most people lactose intolerant until it all heals). Diarrhea is also common due to both the damage to the GI lining and the GI antibiotics. And starting to get itchy skin, which is also common.
Current medications?
--Tacrolimis and methotrexate to minimize graft-versus-host disease, or rejection of his body by Meghan's cells
--Mouth care meds: an antifungal and another med that he swishes around like mouthwash several times a day to keep him mouth lining as healthy as possible
--Antibiotics which are not absorbed but stay in his gastrointestinal tract to minimize his natural intestinal bacteria
--Antifungal pills (swallowed) to prevent fungal infections
--Antivirals to prevent viral infections including "opportunistic" infections such as shingles.
--Antacids and prilosec to minimize gastric acid effect on his stomach and esophagus (the GI tract is very sensitive to both chemo and radiation, and ulcers can develop)
--Magnesium: to replace what his body loses after chemo and radiation
--Multiple nausea meds: scopolamine patch, sublingual Zofran, IV Zofran, Compazine, Ativan
--Pain meds: options of oral or IV if needed
--and probably more I don't know about yet............
(It's going to take a excel program to keep up with his meds when we leave the hospital.....)
What can we expect?
--Mouth sores (mucositis) - chemo and radiation affect the fastest growing cells in the body: cancer cells, blood cells, and the cells that line the GI tract. They told us that almost everybody gets mouth sores and, sure enough, Ryan just texted that he has his first sore. These can be severe enough to prevent eating, and sometimes require serious pain meds and IV nutrition.
--Transfusions of RBCs and platelets
--More diarrhea
--Hair loss which should occur next weekend
--Fevers and infections - hopefully minor, but sometimes serious
--Possibility of severe liver or kidney problems
--And in about 7 days - Day T plus 11 - we should start seeing his WBCs increase as Meghan's stem cells start functioning and producing cells
It is VERY reassuring that things as going precisely according to plan / routine. All of his symptoms seem to be less that many others experience. Whew..........
And I am so grateful for the nurses who are providing so much TLC and emotional support as well as necessary medical care. The team of doctors seems to have gotten past the rough spots and are now very responsive to his needs - probably a valuable lesson for the physicians-in-training, and they have risen to the occasion superbly.
Thanks to the missionaries and temple workers whose names I don't know who came by this weekend after a call from the social worker, and provided love and support in my absence. Sadly for Ryan, he isn't allowed to eat the homemade pumpkin chocolate chip cookies. So Sophia and I stepped up and took care of the problem!!
Thanks to all the church friends and Tim's co-workers who are providing so many meals for Tim and the girls!! But they're all getting spoiled - they really don't need desserts with every meal!!!!!
Also very grateful that Hurricane Sandy chose to come ashore south of Boston. The city is pretty much at a stand-still due to closure of the "T", but I think I can forget the Katrina-like effects on the multitude of huge hospitals so close to the coast here in Boston.
I think I'm starting to relax........
---Barb
Sunday, October 28, 2012
October 26: Day "T plus 1"
More problems with medical care.
All is well with the transplant - which is the most important thing. The physicians are the best in the world at transplant, and I am grateful for this. But a patient is more than his disease, and that's what seems to be problematic.
Ryan's persistent symptom since his diagnosis (and actually part of what led to his diagnosis) - has been severe headaches. He has no history of headaches prior to March of this year, even after a significant head injury and concussion in July 2011 due to bicycle accident while he wasn't wearing a helmet.
There are lots of reasons for his headaches:
-severe anemia from his tumor added to living at a high altitude in Utah
-multiple spinal taps and instilling chemo into his cerebrospinal fluid
-a known side-effect of Zofran, a very effective anti-nausea drugs (used to treat the nausea side-effects of the chemo)
-brain irradiation
-sleep deprivation
-stress / anxiety
In teaching hospitals, most of the general care of patients falls to the residents. These are physicians who have completed medical school and are in training in their chosen specialty. They "rotate" onto various clinical services in the hospital, getting exposure and training in various diseases and clinical specialties and learning from a variety of "attendings" physicians - those who are board certified in their specialty and are in teaching positions while they care for patients. Interns are in their first year of residency. At this point, the interns (who graduated in June) are in their fourth month of training and quite inexperienced.
Yesterday evening, a resident asked Ryan if tylenol had ever worked for his headaches. For the milder ones: Yes. So he encouraged Ryan to use only tylenol for 24 hours and see if that worked. Ryan agreed, and the resident promptly cancelled the orders for all other pain meds.
Smart move!! - change an order for medication which has been working when you won't be readily available to fix it if it doesn't work. (Rule number one of medical order writing: don't make unnecessary order changes in the afternoon before you go home...).
Needless to say, Ryan got a severe headache in the wee hours of the morning. The nurse got an order for an oral medication which Ryan promptly threw up - but because she "couldn't see the pill" in what he threw up, she told him he couldn't have anytihng more for 4 hours. Just because a pill isn't visible, doesn't mean that it has gotten absorbed into the blood steam and has reached adequate tissue levels to be effective!! Arghhhh.............
A new nurse came on at change of shift and tried for several hours to reach the resident for an order for something IV without success. I called Ryan about this time and he was extremely frustrated and just about in tears from the pain. So I called and talked to his nurse (who, by the way is wonderful!!). He confirmed what Ryan had told me and that he had been unsuccessful in reaching a resident for several hours, he had just gotten a response minutes before I called, but it wasn't going to do Ryan any good.
Knowing from the nurse's voice that he was as frustrated as we were, I asked what had been ordered. Morphine 1 mg IV. An absolutely worthless dosage! I asked who on earth had ordered that. The intern.
Now I'm ballistic.
Luckily for me (and unluckily for her), when I was speaking with Ryan a few minutes later the whole team came into his room. I told Ryan to hand the phone to the attending and let's say I "shared my concerns". She got the full force of all my frustrations with the lack of communication, indifference on the part of residents, interns who are clueless writing orders without apparent supervision, etc, etc, etc.
I asked if there was a concern that Ryan was using to much narcotics - the answer: an emphatic "No". "Then why are we playing these power games of withholding pain medication?!"
I demanded that the attending put a note with her signature on the front of his chart stating that I was to be called and informed of any order changes. Sounds crazy, but how many times do I need to struggle to get orders for adequate pain relief only to have some resident with a narcotic phobia change the order?!
While I was talking to the attending (or was I yelling?), Ryan had a discussion with all the housestaff (residents & interns) - telling them that they were about his age, asking them how they thought it felt to being facing what he's facing, how they would feel to be kept in a single room for a month, completely dependent on others for every little thing, completely at the mercy of them for pain relief. How they would feel if they were in pain for hours and those responsible for their care withheld pain meds and didn't return nurse's calls. They were silent and sheepish.
It'll be a miracle if I don't either have an ulcer or get arrested for assault before this is over.
Interesting observation: The hardest place in the USA to get narcotics is in a hospital. I could go to most any street corner in any city in the US and get narcotics more easily that Ryan can in one of the best hospitals in the country.
---Barb
All is well with the transplant - which is the most important thing. The physicians are the best in the world at transplant, and I am grateful for this. But a patient is more than his disease, and that's what seems to be problematic.
Ryan's persistent symptom since his diagnosis (and actually part of what led to his diagnosis) - has been severe headaches. He has no history of headaches prior to March of this year, even after a significant head injury and concussion in July 2011 due to bicycle accident while he wasn't wearing a helmet.
There are lots of reasons for his headaches:
-severe anemia from his tumor added to living at a high altitude in Utah
-multiple spinal taps and instilling chemo into his cerebrospinal fluid
-a known side-effect of Zofran, a very effective anti-nausea drugs (used to treat the nausea side-effects of the chemo)
-brain irradiation
-sleep deprivation
-stress / anxiety
In teaching hospitals, most of the general care of patients falls to the residents. These are physicians who have completed medical school and are in training in their chosen specialty. They "rotate" onto various clinical services in the hospital, getting exposure and training in various diseases and clinical specialties and learning from a variety of "attendings" physicians - those who are board certified in their specialty and are in teaching positions while they care for patients. Interns are in their first year of residency. At this point, the interns (who graduated in June) are in their fourth month of training and quite inexperienced.
Yesterday evening, a resident asked Ryan if tylenol had ever worked for his headaches. For the milder ones: Yes. So he encouraged Ryan to use only tylenol for 24 hours and see if that worked. Ryan agreed, and the resident promptly cancelled the orders for all other pain meds.
Smart move!! - change an order for medication which has been working when you won't be readily available to fix it if it doesn't work. (Rule number one of medical order writing: don't make unnecessary order changes in the afternoon before you go home...).
Needless to say, Ryan got a severe headache in the wee hours of the morning. The nurse got an order for an oral medication which Ryan promptly threw up - but because she "couldn't see the pill" in what he threw up, she told him he couldn't have anytihng more for 4 hours. Just because a pill isn't visible, doesn't mean that it has gotten absorbed into the blood steam and has reached adequate tissue levels to be effective!! Arghhhh.............
A new nurse came on at change of shift and tried for several hours to reach the resident for an order for something IV without success. I called Ryan about this time and he was extremely frustrated and just about in tears from the pain. So I called and talked to his nurse (who, by the way is wonderful!!). He confirmed what Ryan had told me and that he had been unsuccessful in reaching a resident for several hours, he had just gotten a response minutes before I called, but it wasn't going to do Ryan any good.
Knowing from the nurse's voice that he was as frustrated as we were, I asked what had been ordered. Morphine 1 mg IV. An absolutely worthless dosage! I asked who on earth had ordered that. The intern.
Now I'm ballistic.
Luckily for me (and unluckily for her), when I was speaking with Ryan a few minutes later the whole team came into his room. I told Ryan to hand the phone to the attending and let's say I "shared my concerns". She got the full force of all my frustrations with the lack of communication, indifference on the part of residents, interns who are clueless writing orders without apparent supervision, etc, etc, etc.
I asked if there was a concern that Ryan was using to much narcotics - the answer: an emphatic "No". "Then why are we playing these power games of withholding pain medication?!"
I demanded that the attending put a note with her signature on the front of his chart stating that I was to be called and informed of any order changes. Sounds crazy, but how many times do I need to struggle to get orders for adequate pain relief only to have some resident with a narcotic phobia change the order?!
While I was talking to the attending (or was I yelling?), Ryan had a discussion with all the housestaff (residents & interns) - telling them that they were about his age, asking them how they thought it felt to being facing what he's facing, how they would feel to be kept in a single room for a month, completely dependent on others for every little thing, completely at the mercy of them for pain relief. How they would feel if they were in pain for hours and those responsible for their care withheld pain meds and didn't return nurse's calls. They were silent and sheepish.
It'll be a miracle if I don't either have an ulcer or get arrested for assault before this is over.
Interesting observation: The hardest place in the USA to get narcotics is in a hospital. I could go to most any street corner in any city in the US and get narcotics more easily that Ryan can in one of the best hospitals in the country.
---Barb
October 25: Transplant Day!!!
Today Ryan got a bag of Meghan's stem cells at 1 pm and another at 5 pm. Simply an IV infusion just like any other IV fluid or transfusion. But these are the precious cells that will rebuild his marrow and minimize the chances of his leukemia recurring.
Swim, little cells, swim. Find a new home. Grow and grow!!
The nurses say that about Day 11 we'll start to see a "bump" up in Ryan's WBCs that tells us the cells have "engrafted" - that they have found their way to his marrow and are actively growing and replacing his marrow.
Full of gratitude for living in a place and time where this is possible, and for Meghan who shared her cells.
Meghan is uncomfortable with all the expressions of gratitude and admiration for her sacrifice on Ryan's behalf. She sees it simply as something that needed to be done and is glad that there was a match for him and that she could do this for him.
Yet it was uncomfortable for her (she has lousy veins!!!) and we are grateful for her lack of hesitation and for her cells.
Home to Albany to finish Halloween costumes and be a mom to my younger daughters.
---Barb
Swim, little cells, swim. Find a new home. Grow and grow!!
The nurses say that about Day 11 we'll start to see a "bump" up in Ryan's WBCs that tells us the cells have "engrafted" - that they have found their way to his marrow and are actively growing and replacing his marrow.
Full of gratitude for living in a place and time where this is possible, and for Meghan who shared her cells.
Meghan is uncomfortable with all the expressions of gratitude and admiration for her sacrifice on Ryan's behalf. She sees it simply as something that needed to be done and is glad that there was a match for him and that she could do this for him.
Yet it was uncomfortable for her (she has lousy veins!!!) and we are grateful for her lack of hesitation and for her cells.
Home to Albany to finish Halloween costumes and be a mom to my younger daughters.
---Barb
Wednesday, October 24, 2012
Oct 24: Day "minus 1" and doing GREAT!!
Ryan has completed 6 of the planned 7 TBI treatments. The last will be tomorrow morning. He is doing remarkably well. Some nausea, some headaches, but still able to eat cereal and a sandwich. Napped much of the day. And is in good spirits!!
We've joked for a few months about him getting radiated until he glows. Surprisingly, the staff here says most TBI patients actually do get a bit of color to their skin. Our nurses say that he has this glow about him now! And he does - both physically and spiritually. As he feels more secure, the smile is back and so is his sense of humor.
Everyone on the Transplant Unit says he is doing so much better than most patients at this point.
I'm getting some feedback on what happened on Saturday, and I am beginning to feel satisfied.
Many of us (my fellow Mormons, anyway) are familiar with recent church leaders' addresses on forgiveness and the phrase, "Let it go!". I've felt like the proverbial dog-with-a-bone for the past few days, unable to "Let if go". Trying to search my heart and figure out whether my motivation to get answers is simply me hanging onto anger (unfairly lashing out over this as a release for all my frustrations and anger over Ryan's illness?), or real motivation to prevent a similar circumstance from happening to another patient. I've been praying and praying for help to "Let it go". It's scary how angry I have been feeling.
Now that I know the leadership here is seriously looking into what happened and at adjusting processes and procedures in the future, I feel like I can relax.
The past few posts have been largely about my struggles. For the first time in this 6 month journey, I feel like I have lost control of my emotions. Up to this point I've been able to push aside everything I've been feeling to support Ryan emotionally. Now I feel like the "drag" on the emotional momentum.
This really isn't and shouldn't be all about me. When I started this blog, my primary goal was to give friends and family updates. As it has progressed, I wanted to give others who may follow an un-sugarcoated picture of our journey.
In my medical practice it was not unusual to see women who in caring for others failed to take care of themselves and we're completely burned out. I was full of great advice, encouraging them to take care of themselves so that they can help others. Time to practice what I preach!! So I'm off to take a long hot bath. And to count my blessings........
Tomorrow is D(elivery) Day!!!!!! All those beautiful little baby cells of Meghan's will be delivered into Ryan's bloodstream and find their way to his marrow, put down roots, and grow, grow grow! "What could I ask more?"
---Barb
We've joked for a few months about him getting radiated until he glows. Surprisingly, the staff here says most TBI patients actually do get a bit of color to their skin. Our nurses say that he has this glow about him now! And he does - both physically and spiritually. As he feels more secure, the smile is back and so is his sense of humor.
Everyone on the Transplant Unit says he is doing so much better than most patients at this point.
I'm getting some feedback on what happened on Saturday, and I am beginning to feel satisfied.
Many of us (my fellow Mormons, anyway) are familiar with recent church leaders' addresses on forgiveness and the phrase, "Let it go!". I've felt like the proverbial dog-with-a-bone for the past few days, unable to "Let if go". Trying to search my heart and figure out whether my motivation to get answers is simply me hanging onto anger (unfairly lashing out over this as a release for all my frustrations and anger over Ryan's illness?), or real motivation to prevent a similar circumstance from happening to another patient. I've been praying and praying for help to "Let it go". It's scary how angry I have been feeling.
Now that I know the leadership here is seriously looking into what happened and at adjusting processes and procedures in the future, I feel like I can relax.
The past few posts have been largely about my struggles. For the first time in this 6 month journey, I feel like I have lost control of my emotions. Up to this point I've been able to push aside everything I've been feeling to support Ryan emotionally. Now I feel like the "drag" on the emotional momentum.
This really isn't and shouldn't be all about me. When I started this blog, my primary goal was to give friends and family updates. As it has progressed, I wanted to give others who may follow an un-sugarcoated picture of our journey.
In my medical practice it was not unusual to see women who in caring for others failed to take care of themselves and we're completely burned out. I was full of great advice, encouraging them to take care of themselves so that they can help others. Time to practice what I preach!! So I'm off to take a long hot bath. And to count my blessings........
Tomorrow is D(elivery) Day!!!!!! All those beautiful little baby cells of Meghan's will be delivered into Ryan's bloodstream and find their way to his marrow, put down roots, and grow, grow grow! "What could I ask more?"
---Barb
Tuesday, October 23, 2012
October 23: New day, new attitude
I came back to Boston today. Ryan has now completed all of his high dose chemo, and 4 of his 7 total body irradiation sessions. He's experiencing continual mild nausea, but it seems to be under pretty good control most of the time. He's gotten a lot of naps. Feels weak, but not especially tired.
And he looks good!! The smile is back. His color is good - although the nurse says that TBI patients tend to look like they've been on vacation in Florida, i.e. slightly sunburned. He ate some Cheerios & milk, followed by chicken fingers and bacon.
He still has intermittent severe headaches, which no one seems to know the cause of. The doctors asked him lots of questions about the headaches today.
His blood counts are good - his WBC is down to 1.6, but his red blood cells and platelets are completely normal (RBCs live for about 120 days). His nurse pointed out that many of their patients come to them "transfusion dependent" after aggressive chemo, and require lots of transfusions throughout. From what he sees in Ryan's labs right now, he anticipates that he probably won't need any transfusions until next week.
All in all, he looks worlds better than I though he would at this point. We're still early in the process, but so far, so good.
He is getting excellent care on the transplant unit. I could feel my suppressed (well at least partly suppressed) rage dissipate after I saw him.
There is a family from Chandler, AZ, staying in our hotel whose 4 y.o. adopted Chinese daughter is at Childrens Hospital for heart surgery. They don't know if her heart can be repaired or not - a previous attempt in Phoenix failed. They have 4 older "made in the USA" kids and 2 Chinese daughters - very similar to our family. The whole family is here to surround Ivy with love while she goes through all the tests, procedures and surgery.
I read their blog tonight (sammonsfamily7.blogspot.com), and I was sobered and chastened. I have a 23 y.o. son who most likely will survive, and I've been on a three day pity party, mad at the whole world. Mary's blog about her daughter is all about choosing joy. I have a lot to learn........
---Barb
And he looks good!! The smile is back. His color is good - although the nurse says that TBI patients tend to look like they've been on vacation in Florida, i.e. slightly sunburned. He ate some Cheerios & milk, followed by chicken fingers and bacon.
He still has intermittent severe headaches, which no one seems to know the cause of. The doctors asked him lots of questions about the headaches today.
His blood counts are good - his WBC is down to 1.6, but his red blood cells and platelets are completely normal (RBCs live for about 120 days). His nurse pointed out that many of their patients come to them "transfusion dependent" after aggressive chemo, and require lots of transfusions throughout. From what he sees in Ryan's labs right now, he anticipates that he probably won't need any transfusions until next week.
All in all, he looks worlds better than I though he would at this point. We're still early in the process, but so far, so good.
He is getting excellent care on the transplant unit. I could feel my suppressed (well at least partly suppressed) rage dissipate after I saw him.
There is a family from Chandler, AZ, staying in our hotel whose 4 y.o. adopted Chinese daughter is at Childrens Hospital for heart surgery. They don't know if her heart can be repaired or not - a previous attempt in Phoenix failed. They have 4 older "made in the USA" kids and 2 Chinese daughters - very similar to our family. The whole family is here to surround Ivy with love while she goes through all the tests, procedures and surgery.
I read their blog tonight (sammonsfamily7.blogspot.com), and I was sobered and chastened. I have a 23 y.o. son who most likely will survive, and I've been on a three day pity party, mad at the whole world. Mary's blog about her daughter is all about choosing joy. I have a lot to learn........
---Barb
Monday, October 22, 2012
October 20th: Falling through the cracks
I've raved and raved to everyone and praised God for the excellent care Ryan has gotten at Dana Farber.
And then he was admitted to Brigham & Women's Hospital.
It's terrifying to fall through the racks at a world-renowned "Center of Excellence".
And then he was admitted to Brigham & Women's Hospital.
It's terrifying to fall through the racks at a world-renowned "Center of Excellence".
I can't tell you how confident we felt going into this, and knowing that this transplant program is one of the best in the world. Reading the booklet I felt the program was so well organized, and I felt safe and secure with Ryan in their hands. Everything at DFCI was supportive and reassuring.
The problems began the minute we came to BWH. Ryan's ER care on the 11th was excellent. Except the fact that the Transplant team - who should have been the most interested in his care and in communicating with us - left us in the ER for hours NPO (i.e. prohibited from eating or drinking before a procedure) waiting to have lines placed and be admitted, after having decided to cancel the procedure and postpone the transplant - and didn't bother to tell us. I found out from Meghan at 4:30 on a Friday after the donor nurse called to tell her. I told myself that they were busy taking care of sicker patients.
OK - water under the bridge, busy Friday, these things happen, let's move on.
We go home for a week, come back with a really positive attitude, ready for "the best of the best" to do their stuff.
On Friday evening we were admitted quite late - Ryan ate in the morning when he wasn't supposed to eat. For safety reasons I fully support, they made him the last case of the day for his line placement under IV sedation. So although Ryan was frustrated I kept reassuring him and telling him to quit complaining.
I asked the nurse what time he would get his chemo on Saturday and she looked surprised and said she didn't have any chemo orders, and was I sure he was to get chemo? I described the plan given us by Dr. Cutler which included high dose cytoxan on Sat and Sun followed by TBI Mon - Thursday. She replied that sometimes there are changes and we should just wait until the morning.
Ryan asked for something for pain at the procedure site and was offered only tylenol, the nurse saying it was probably just the tape that was bothering him. Really? With 4 incisions in his neck and chest and a line tunneling under the skin on each side? Plus: Ryan was told by Dr. Cutler last week not to take any tylenol because of liver concerns.
Saturday morning I arrived about 8:30 - certain that I had overslept and missed rounds. Ryan had been given some dilaudid for pain at 6 am which triggered a severe headache. Honestly, I'm not terribly concerned about this because it's just pain. Sounds crazy, but if the nurse is busy with something more pressing with a sicker patient delays sometimes occur. Surely when he needs the "real" care we came here for, the response will be better. He asks for some morphine (now the headache hurts worse than the incisions), and is told he'll get some right away. Two hours pass, and several calls later another nurse gives him 2 mg since his nurse is too busy. No relief. An hour later his nurse tells him he should wait a few hours to see if it "kicks in". Are you kidding me? IV morphine is usually gone by an hour or so. At noon, he again asks for pain relief, and the nurse says she'll be back in when the doctors make rounds in a little bit and maybe they will order something then. Ryan is in agony (maybe partly anxiety - but even so, shouldn't that still be addressed?) and retching into a basin.
12:30: the attending comes in with the team and nurse and cheerfully says, "So how are we today?" (didn't the nurse bother to mention that he was requesting pain relief and retching?)
Ryan responds, "pissed off" - not great way to open communications with a doctor you don't know. The visit lasted about 2 minutes with the attending telling him they'd get him something. No discussion whatsoever of his cancer, plan of management, what will be happening today. Why did she even bother to make rounds on him?
But now he's been 4 hours without relief, and with a nurse who has been giving me the impression she can't get a response or orders from a physician. I grabbed the resident with the chart as she headed for the door and begged her to write an order with a range of dosage so the nurse wouldn't have to bother her if the dose needed adjustments. She looked hesitant, so I played the doctor card and told her as a physician I knew that such orders could be written and worked well for patients and house staff alike. She wrote the order.
The afternoon passed hour by hour and I began asking the nurse when Ryan would be getting his chemo. She said there were no orders for chemo, but that she was sure he'd get his radiation next week since radiation oncology doesn't work on weekends. I stressed that Ryan was supposed to get chemo today asked her to call the resident and she assured me that she had. I became more and more uneasy.
Around 5 pm I told her I really needed to speak in person to a physician who could tell us what was happening and explain if there was a change of plans. No response.
At 6:30, I told the nurse if there wasn't a physician in my room by 7 pm, all hell was going to break loose. (Do I really need to do that to get care?) Then I overheard her talking to someone at the nurses station saying chemo orders needed to be in to the pharmacy by 9 pm and asking for orders. I went out and asked if the conversation was about Ryan (believing that most patients had probably received their chemo much earlier in the day). She reassured me that chemo orders "were being written" and he'd still get his chemo today.
By now I am completely exasperated. After he had no pain relief and little sleep last night, and was in pain and unable to rest most of the day, we're going to wait until 10 pm to start chemo that has to be given with large volumes of IV fluid and will have him urinating hourly for the next two days? Really?
Oh - And by the way, no doctor would be available to come in.
Now I'm ballistic - I demanded that some physician come and speak to us. Immediately. (foaming at the mouth, transforming into a strange combination of the increidble hulk and wolverine with rabies)
Dr. X, to her credit, did come in from home and talk to us and took responsibility for the situation. She was under the impression that another attending was covering Dr. Cutler's patients and that that doctor was responsible for the chemo orders. (What? She made rounds at 12:30 and there were no orders on the chart and she didn't follow up? - precisely what did she do on her "rounds"?) As she stood near the door talking to us, I told her to grab a chair and come sit down. We needed to talk. I was very frank/blunt (while trying not to get a label as the bitchy/doctor/mother) about my concerns. She wrote the orders and Ryan finally received his chemo - at 1 am. Ughhhhh..............
One explanation Dr. X gave for the day's errors was that Ryan was not on the usual transplant floor - 6A - so the nurses on 6D where we were may not be as familiar with transplant protocols. Again - really???? The housestaff (residents - physicians in training who are in the hospital round the clock and do much of the hands-on patient care in teaching hospitals) was on the same floor (6D is just around the corner) and they couldn't come see him when (if?) the nurse called them?
I tell her that I want Ryan in the next available bed on the Transplant Unit.
All of these things are huge potential sources of medical error. If I wasn't a physician and willing to raise heck, what would have happened today? How can I leave the hospital at night or even go home to my family in Albany for a day or two and ever again feel confident that people here have their act together?
All of these things are huge potential sources of medical error. If I wasn't a physician and willing to raise heck, what would have happened today? How can I leave the hospital at night or even go home to my family in Albany for a day or two and ever again feel confident that people here have their act together?
I feel violated. My trust and sense of security is decimated. How on earth can we feel confident that he will even survive this if this comedy of errors continues? My feeling all day was that we needed to take the cells and run to another facility as fast as I could!!
Although I fully understand a patient's first day in the hospital is not his riskiest day medically, it IS risky emotionally. It sets the stage psychologically for all that follows. Relationships are established. Trust is built. And if it's this messed up when he's not sick, the stakes are stronimically higher in a few days when he is sick!
Again unable to sleep, I spend most of the night in the hotel cafe so I don't disturb Meghan's sleep, writing a scathing e-mail to our transplant nurse coordinator and playing solitaire. I took Meghan to the airport, went to bed and got 3 hours of sleep and went back to the hospital. When I arrived the less-than-helpful-yesterday-nurse asked if I was feeling better today. Controlling my urge to re-arrange her dentition, I walked past her into Ryan's room without a reply.
This is really challenging. I'm really trying to control my anger, no-make that rage, I want to tuck him into my arms and run away. Trying to be calm and read my book - same page for most of the morning.
Ryan tolerated the first day of Cytoxan pretty well. Tongue sores are beginning. He's tired from no sleep, but he is upbeat. For his sake I'm trying to smile and be positive. But I can't help feeling my face probably looks more like a grimace. I'm still so angry (and scared for what lies ahead) that I'm trembling.
At 2 pm he's transferred to 6A - the "real" transplant unit. Dr X is there with orders. She stops in and discusses his care. The nurse on this unit is upbeat and informative. She orients Ryan to the unit, showing him where the snacks and drinks are. She tells him what time he is to go for TBI in the morning. What time he will get his chemo tonight (midnight again, since it needs to be 24 hours after the first dose). That in precisely 2 weeks his hair will fall out again. That his GVH (graft-versus-host) meds will start tomorrow on "Day -3". Transplant day - Thursday Oct 25 - is Day Zero. The days counting down to it are negative, and the days after it are positive. Certain things happen predictably on certain days, and certain treatments are given at certain times in the process.
I slump into the chair to read my book. I feel the tension starting to leave my body. I think maybe I feel safe again. Then I feel my rage over yesterday resurface. Gotta get over this. This isn't doing anybody any good. Need some rest. Need to put some space between me and this place and pull myself together.
Confident (or at least hopeful) that Ryan is finally in good hands, I decide to go home for a couple of days. Sophia is here with him, and she's much better than I at cheering him and entertaining him. Back to the hotel to pick up all of our laundry. Scalp is crawling. Shoulder & neck are tight. Stress. A few Motrin and a large diet Coke from the nearby McDonald's to keep me awake and I hit the road hoping to not fall asleep on the drive.
Driving home, I feel like I need to vent to somebody or I'll explode, and poor Sean calls from Albania. So he hears my whole rant. I can feel the love and support through the phone, and it comforts me. Through the front door and both girls attack me with hugs. Fighting back tears. The house looks great - Tim knew I was coming home to surprise the girls and had them all help clean the house. Snuggle with the girls, sing silly bedtime songs, relax into my bed hoping for sleep. But the minute it's quiet and my lids close everything comes pouring back - the plight of the characters in the book I'm reading (maybe I should switch to romance novels for a while), problems with tenants, details of refinancing the mortgage on a rental place I own, what's left to be done before Ryan comes home, is Ryan getting any rest?, need to get the dog shaved to minimize dog hair in the house, need to schedule an orthodontist appt to replace MeiLin's spacer and fix Kaia's retainer where it's cutting into her gums, is Ryan safe? are they giving him his treatments on time? what if the night nurse on the new unit isn't as responsive as the day nurse? Got up, took an Ativan (a weaker cousin of valium), watched some mind-numbing TV in the recliner until I fell asleep.
Tim got the girls off to school today without waking me up. Guilt. I wanted to get them breakfast and kiss them before they got on the bus.
The book I'm reading is about a young mother in Germany who struggles to protect, clothe and feed her child during WWII. So much is completely beyond her control. She does whatever she has to do, yet it never seems enough. I relate.
Yup - time to switch to romance novels........
---Barb
Thursday, October 18, 2012
October 18th: Meghan's stem cells are in the bag.......
Meghan's first shot of neupegen was on Sunday soon after her flight arrived. She was exhausted so she napped while I worked out at the hotel (yes - you read that correctly.....). She woke up with a bad headache and over the evening had gradual increasing discomfort in her back.
She had additional injections on Monday, Tuesday and Wednesday mornings - following which she felt really tired and slept for a while each day. Hard to tell how much of this was due to the medication and how much was baseline tiredness coupled with a red-eye and a time zone change. In the afternoons, we walked the Freedom Trail and explored the city with Meghan's former BYU roommate who now lives in Boston. On Monday she went to FHE with a singles ward in Boston and encountered a few people she knew from BYU who are here working on Romney's campaign.
Her bone pain has gotten progressively worse daily - a lot of chest pain last night. This is all due to stimulation and "swelling" of the marrow.
Every evening as she groans in bed beside me I feel so conflicted as a mother. Part of me has my fingers crossed that her discomfort means her marrow is churning out lots of lovely little stem cells ready to be adopted by her brother to keep him alive indefinitely. Part of me wishes I could do something to ease her pain (she refuses pain meds). All of me is grateful for her willingness to do this.
Yesterday (Wed, Oct 17th), I drove back home to be with the girls while Tim was on his last out of town trip for a while, and to bring Ryan and Sophia back to Boston today. Both girls slept in my bedroom last night, and the dog whined out in the dark for my attention. I fell asleep surrounded by kids and a dog who needed attention. After Kaia got on the bus this morning, we hit the road for Boston yet again.
Ryan and Sophia went to the Boston Temple, then we went to pick up Meghan. She had a large bore IV in each arm - one in the right antecubital (in the bend of the elbow), the other in the left forearm. She couldn't bend the right arm all day, making it pretty painful by the end of the day.
The medicine which prevents clots during the process also lowers the body's calcium. This causes tingling in the fingertips and lips, and muscle cramps. It was pretty pronounced in Meghan's case. She didn't tell them about it until it was pretty bad, thinking it just came with the territory. They slowed down the filtering and gave her calcium in her IV to minimize it, but she was still pretty miserable. And then there was the necessity of using the bedside commode to urinate.......
We all went out to dinner - Ryan and Sophia took us to a Mexican restaurant - and then to a local cupcake shop (famous for a TV show about it's founders). Meghan toughed it out, but feels pretty miserable. I insisted she take some pain meds tonight and she's sleeping while I type this.
Tomorrow she will have another 8-10 hours on the machine collecting stem cells. And Ryan will have his central lines placed and be admitted for the barrage of chemo and total body radiation over the next week to wipe out his marrow before receiving Meghan's stem cells via IV next Thursday.
I've grown pretty "hard" over the years. Empathizing with my patients and caring deeply about them, but keeping up enough of a wall to protect me from the bad stuff. And this is bad stuff. Keeping busy helps me protect myself from the pain and keep functioning. Hanging on to that "to do" list. It's as if I'm not really experiencing this - like I'm at a distance watching someone else go through it. Sometimes that distance and tendency to block out the pain makes me wonder about myself and what I have become. I wonder what it would be like to have a couple days of pitty-party, but fear opening that flood gate. My style has always been to simply push through the hard things and get to the other side. For now, I'm simply trying to make the right decisions in the balance between meeting the needs of all my kids and my hubby, and to provide support as best I can to Ryan, Sophia & Meghan.
Tonight as I listen to Meghan's quiet breathing as she sleeps across the hotel room, and picture Ryan as he will inevitably look next week, and remember the girls clinging to me last night, the tears are welling up. Strangely, it's not just for the pain, but also for the love.
"there must needs be opposition in all things" (-from The Book of Mormon)
---Barb
She had additional injections on Monday, Tuesday and Wednesday mornings - following which she felt really tired and slept for a while each day. Hard to tell how much of this was due to the medication and how much was baseline tiredness coupled with a red-eye and a time zone change. In the afternoons, we walked the Freedom Trail and explored the city with Meghan's former BYU roommate who now lives in Boston. On Monday she went to FHE with a singles ward in Boston and encountered a few people she knew from BYU who are here working on Romney's campaign.
Her bone pain has gotten progressively worse daily - a lot of chest pain last night. This is all due to stimulation and "swelling" of the marrow.
Every evening as she groans in bed beside me I feel so conflicted as a mother. Part of me has my fingers crossed that her discomfort means her marrow is churning out lots of lovely little stem cells ready to be adopted by her brother to keep him alive indefinitely. Part of me wishes I could do something to ease her pain (she refuses pain meds). All of me is grateful for her willingness to do this.
Yesterday (Wed, Oct 17th), I drove back home to be with the girls while Tim was on his last out of town trip for a while, and to bring Ryan and Sophia back to Boston today. Both girls slept in my bedroom last night, and the dog whined out in the dark for my attention. I fell asleep surrounded by kids and a dog who needed attention. After Kaia got on the bus this morning, we hit the road for Boston yet again.
Ryan and Sophia went to the Boston Temple, then we went to pick up Meghan. She had a large bore IV in each arm - one in the right antecubital (in the bend of the elbow), the other in the left forearm. She couldn't bend the right arm all day, making it pretty painful by the end of the day.
The medicine which prevents clots during the process also lowers the body's calcium. This causes tingling in the fingertips and lips, and muscle cramps. It was pretty pronounced in Meghan's case. She didn't tell them about it until it was pretty bad, thinking it just came with the territory. They slowed down the filtering and gave her calcium in her IV to minimize it, but she was still pretty miserable. And then there was the necessity of using the bedside commode to urinate.......
We all went out to dinner - Ryan and Sophia took us to a Mexican restaurant - and then to a local cupcake shop (famous for a TV show about it's founders). Meghan toughed it out, but feels pretty miserable. I insisted she take some pain meds tonight and she's sleeping while I type this.
Tomorrow she will have another 8-10 hours on the machine collecting stem cells. And Ryan will have his central lines placed and be admitted for the barrage of chemo and total body radiation over the next week to wipe out his marrow before receiving Meghan's stem cells via IV next Thursday.
I've grown pretty "hard" over the years. Empathizing with my patients and caring deeply about them, but keeping up enough of a wall to protect me from the bad stuff. And this is bad stuff. Keeping busy helps me protect myself from the pain and keep functioning. Hanging on to that "to do" list. It's as if I'm not really experiencing this - like I'm at a distance watching someone else go through it. Sometimes that distance and tendency to block out the pain makes me wonder about myself and what I have become. I wonder what it would be like to have a couple days of pitty-party, but fear opening that flood gate. My style has always been to simply push through the hard things and get to the other side. For now, I'm simply trying to make the right decisions in the balance between meeting the needs of all my kids and my hubby, and to provide support as best I can to Ryan, Sophia & Meghan.
Tonight as I listen to Meghan's quiet breathing as she sleeps across the hotel room, and picture Ryan as he will inevitably look next week, and remember the girls clinging to me last night, the tears are welling up. Strangely, it's not just for the pain, but also for the love.
"there must needs be opposition in all things" (-from The Book of Mormon)
---Barb
October 11: Brain radiation; transplant postponed
Acute Lymphoblastic Leukemia recurrences often are in the Central Nervous System - the brain. For this reason, pre-transplant brain radiation is done at a dosage known to be effective for leukemia. This preventative therapy involves a significantly lower dose than than is used to treat brain tumors.
Today Ryan started his brain radiation. It took less than 10 minutes, and he felt great afterwards - well enough that he want to go to Salem for the afternoon. We made the 20 minute trip, only for him to develop a severe headache. After no response to a couple of Tylenol with codeine, he called his doctor and we headed back to Dana Farber to fill the prescription.
Hoping a nap would help, I took them to their hotel. I had reserved an inexpensive room via Priceline.com in a different hotel so they could have their last night together without me around. In my room I savored the warm chocolate chip cookie given to me on admission along with a cup of herbal tea, and crawled under the covers.
Then Ryan called to say he was throwing up and his headache was worse than ever.
So I got out of the cozy bed and packed up. We headed to the ER for IV fluids, nausea meds and some IV morphine. Since he was scheduled to be admitted the next day the decision was made to just go ahead and admit him. Sophia and I left at midnight to get some rest.
Friday morning, Ryan was still in the ER. No beds were available for admission. Plan B was to have his central lines placed as scheduled at 12:30, followed by brain radiation, then admission. At 1:00 he was still waiting, so Sophia and I went to grab some lunch. While we were gone, the transplant doctor on duty (Dr. Cutler was out of town) came to see him and noted that he had a cough (tail end of a virus MeiLin shared with all of us...), and told Ryan that although they wouldn't be giving him cytoxan while he had an possible infection, they would proceed with the line placement and last dose of brain radiation.
Then Meghan called to ask what was happening because she had gotten a voice mail saying that they were going ahead with her donation "anyway". When she reached the donor nurse she was told that Ryan had been postponed a week, but her collection was to proceed as scheduled.
Two more hours of waiting in the ED with nothing happening. I called our transplant nurse who confirmed the postponement and apologized - she thought the doctor on duty had informed Ryan. Although Ryan was to proceed with the brain radiation, the line placement would wait until his admission next week (makes sense since the longer the lines or any foreign body is in place, the higher the risk of infection). We asked that Ryan be admitted overnight for pain and nausea control.
Ryan tolerated the second radiation dose better than the first, but was glad to be where he got adequate pain relief and nausea control.
Home to New York on Saturday afternoon with Ryan and Sophia, dinner with the family, tucked the girls in, then drove back to Boston to get some rest before meeting Meghan's red-eye from Phoenix at 10 am Sunday morning.
There is no doubt that the decision to delay was the correct one medically. But it kinda took the wind out of our sails. We were all geared up to "git 'er done", and it was disheartening to wait another week.
I had to ask if there was a downside to having a week between the donation and the transplant. Meghan's cells will be cryopreserved (frozen), where up to 50% may not survive the freezing and defrosting. So she will undergo collection for two days for sure, rather than one day with a possible second day. They'll simply collect twice as many cells. The amount of cells transplanted in Ryan will be the same, and will be just as healthy, with just as good results.
---Barb
Today Ryan started his brain radiation. It took less than 10 minutes, and he felt great afterwards - well enough that he want to go to Salem for the afternoon. We made the 20 minute trip, only for him to develop a severe headache. After no response to a couple of Tylenol with codeine, he called his doctor and we headed back to Dana Farber to fill the prescription.
Hoping a nap would help, I took them to their hotel. I had reserved an inexpensive room via Priceline.com in a different hotel so they could have their last night together without me around. In my room I savored the warm chocolate chip cookie given to me on admission along with a cup of herbal tea, and crawled under the covers.
Then Ryan called to say he was throwing up and his headache was worse than ever.
So I got out of the cozy bed and packed up. We headed to the ER for IV fluids, nausea meds and some IV morphine. Since he was scheduled to be admitted the next day the decision was made to just go ahead and admit him. Sophia and I left at midnight to get some rest.
Friday morning, Ryan was still in the ER. No beds were available for admission. Plan B was to have his central lines placed as scheduled at 12:30, followed by brain radiation, then admission. At 1:00 he was still waiting, so Sophia and I went to grab some lunch. While we were gone, the transplant doctor on duty (Dr. Cutler was out of town) came to see him and noted that he had a cough (tail end of a virus MeiLin shared with all of us...), and told Ryan that although they wouldn't be giving him cytoxan while he had an possible infection, they would proceed with the line placement and last dose of brain radiation.
Then Meghan called to ask what was happening because she had gotten a voice mail saying that they were going ahead with her donation "anyway". When she reached the donor nurse she was told that Ryan had been postponed a week, but her collection was to proceed as scheduled.
Two more hours of waiting in the ED with nothing happening. I called our transplant nurse who confirmed the postponement and apologized - she thought the doctor on duty had informed Ryan. Although Ryan was to proceed with the brain radiation, the line placement would wait until his admission next week (makes sense since the longer the lines or any foreign body is in place, the higher the risk of infection). We asked that Ryan be admitted overnight for pain and nausea control.
Ryan tolerated the second radiation dose better than the first, but was glad to be where he got adequate pain relief and nausea control.
Home to New York on Saturday afternoon with Ryan and Sophia, dinner with the family, tucked the girls in, then drove back to Boston to get some rest before meeting Meghan's red-eye from Phoenix at 10 am Sunday morning.
There is no doubt that the decision to delay was the correct one medically. But it kinda took the wind out of our sails. We were all geared up to "git 'er done", and it was disheartening to wait another week.
I had to ask if there was a downside to having a week between the donation and the transplant. Meghan's cells will be cryopreserved (frozen), where up to 50% may not survive the freezing and defrosting. So she will undergo collection for two days for sure, rather than one day with a possible second day. They'll simply collect twice as many cells. The amount of cells transplanted in Ryan will be the same, and will be just as healthy, with just as good results.
---Barb
Wednesday, October 17, 2012
October 10: Busy week before the transplant
It's been a crazy week as I scramble to get everything ready for my absence and Ryan enjoys the things that he won't be able to do for quite a while after his transplant. Sophia has been at home and they've been able to do things together.
The Halloween costumes for the girls are nearly done - for the first time in my life I was trembling as I threaded the needle. While I recognize that stress in as inherent part of this journey, I've kept so busy doing what needs to be done that I haven't taken time to recognize the always-present stress and fear that lies beneath the surface.
Ryan has been remarkably upbeat through this whole thing, but this week he's irritable - especially with Kaia. And she responds by making remarks about him not being in our "family" anyway - wishing that things were back to "normal" with just the four of us at home. I also suspect that it's Kaia's way of protecting herself from the hurt of possibly losing Ryan. The trauma of her adoption still surfaces sometimes in a reluctance to trust and allow herself to make bonds that could end (like her attachment to her Chinese nannies betrayed her trust as they gave her away to strangers - us). So she's had a few meltdowns as well.
In our "life happens" update: car problems. The passenger side visor starting flopping down - an annoyance to whoever is seated there, and the air bag light came on. Of course, the only day the shops could fit me in was the day before we leave for Boston. Visor fixed - no problem. But the airbag sensor in the passenger seat bottom is malfunctioning and the seat bottom needs to be sent to California for repairs. So they give me a rental car, but want it back in 3 days while I will still be in Boston. So Tim will drive the rental and I will take his car to Boston. The tender mercy in all this is that it didn't cost anything. Whew!!!
In the humor department: The poor guys who did my first-ever car detailing earned their pay! My car is the ultimate "cheerio-mobile". Pretty dirty - even after taking out the raisins, French fries and hair ties. When I went to pick it up, they said they had removed 5 1/2 pounds of birdseed from the spare tire well under the trunk!! I had forgotten that a 5 gallon pail of birdseed for a second grade class birdfeeder project spilled in the trunk 2 years ago!! Another tender mercy - realizing that I didn't have a flat tire in the past 2 years.......
(if anyone needs a car detailed, give the guys at Carlito's Extreme Detailing in Clifton Park a shot - I highly recommend them!) But I'm so embarassed, I
Packing for a prolonged stay in Boston, appreciating those who will be bringing some meals to Tim and the girls, feeling conflicted about where my time should be spent - with my young daughters or my son with leukemia - not to mention my stalwart husband. This, too, shall pass.
---Barb
The Halloween costumes for the girls are nearly done - for the first time in my life I was trembling as I threaded the needle. While I recognize that stress in as inherent part of this journey, I've kept so busy doing what needs to be done that I haven't taken time to recognize the always-present stress and fear that lies beneath the surface.
Ryan has been remarkably upbeat through this whole thing, but this week he's irritable - especially with Kaia. And she responds by making remarks about him not being in our "family" anyway - wishing that things were back to "normal" with just the four of us at home. I also suspect that it's Kaia's way of protecting herself from the hurt of possibly losing Ryan. The trauma of her adoption still surfaces sometimes in a reluctance to trust and allow herself to make bonds that could end (like her attachment to her Chinese nannies betrayed her trust as they gave her away to strangers - us). So she's had a few meltdowns as well.
In our "life happens" update: car problems. The passenger side visor starting flopping down - an annoyance to whoever is seated there, and the air bag light came on. Of course, the only day the shops could fit me in was the day before we leave for Boston. Visor fixed - no problem. But the airbag sensor in the passenger seat bottom is malfunctioning and the seat bottom needs to be sent to California for repairs. So they give me a rental car, but want it back in 3 days while I will still be in Boston. So Tim will drive the rental and I will take his car to Boston. The tender mercy in all this is that it didn't cost anything. Whew!!!
In the humor department: The poor guys who did my first-ever car detailing earned their pay! My car is the ultimate "cheerio-mobile". Pretty dirty - even after taking out the raisins, French fries and hair ties. When I went to pick it up, they said they had removed 5 1/2 pounds of birdseed from the spare tire well under the trunk!! I had forgotten that a 5 gallon pail of birdseed for a second grade class birdfeeder project spilled in the trunk 2 years ago!! Another tender mercy - realizing that I didn't have a flat tire in the past 2 years.......
(if anyone needs a car detailed, give the guys at Carlito's Extreme Detailing in Clifton Park a shot - I highly recommend them!) But I'm so embarassed, I
Packing for a prolonged stay in Boston, appreciating those who will be bringing some meals to Tim and the girls, feeling conflicted about where my time should be spent - with my young daughters or my son with leukemia - not to mention my stalwart husband. This, too, shall pass.
---Barb
Tuesday, October 16, 2012
October 2nd: More stress and blessings
Driving home from our counseling session feeling glum already, Ryan got a call from Sophia that she had been laid off. At first it felt like one more painful blow. Ryan was totally exasperated. Already overwhelmed with the scary medical details discussed in Boston, he looked like he'd been sucker-punched.
As the miles passed, the realization hit that this may be a blessing in disguise. Notwithstanding the hurt Sophia was feeling and the loss of income for them, there are several advantages. Sophia will be able to be with him in Boston. With Sophia as the "caretaker", reduced cost hotel rooms ($40/day rather than $169 for the same room at the same hotel) will now be available since Sophia meets the "means testing" for income eligibility for the program and I don't. Not that we are hurting, and we know that we are very blessed financially compared to most people who experience this - but the constant travel, meals away from home, gas & lodging really do add up. Now Sophia will be able to stay in a hotel within the allotted per diem the insurance pays (which in itself is another incredible blessing), with a little left for food.
And I will be able to be home more with the girls and Tim. Although Tim is remarkably self-sufficient, there are things that moms do that dads don't, and some things that are a priority to me that aren't to him (practicing piano, doing Chinese lessons on-line, etc). And let's face it - having Mommie tuck you in is something that just can't be replaced. And it's good for Mom, too!
I'll be putting on more milage, but at this point the car is on auto-pilot between home and Boston. Thanks to some great audiobooks, the miles fly by pretty quickly.
So we'll change to plan B and appreciate that Ryan and Sophia can be together. Unlike my little girls, he is at the point in his life where someone other than Mom is his rock and his cheerleader.
---Barb
As the miles passed, the realization hit that this may be a blessing in disguise. Notwithstanding the hurt Sophia was feeling and the loss of income for them, there are several advantages. Sophia will be able to be with him in Boston. With Sophia as the "caretaker", reduced cost hotel rooms ($40/day rather than $169 for the same room at the same hotel) will now be available since Sophia meets the "means testing" for income eligibility for the program and I don't. Not that we are hurting, and we know that we are very blessed financially compared to most people who experience this - but the constant travel, meals away from home, gas & lodging really do add up. Now Sophia will be able to stay in a hotel within the allotted per diem the insurance pays (which in itself is another incredible blessing), with a little left for food.
And I will be able to be home more with the girls and Tim. Although Tim is remarkably self-sufficient, there are things that moms do that dads don't, and some things that are a priority to me that aren't to him (practicing piano, doing Chinese lessons on-line, etc). And let's face it - having Mommie tuck you in is something that just can't be replaced. And it's good for Mom, too!
I'll be putting on more milage, but at this point the car is on auto-pilot between home and Boston. Thanks to some great audiobooks, the miles fly by pretty quickly.
So we'll change to plan B and appreciate that Ryan and Sophia can be together. Unlike my little girls, he is at the point in his life where someone other than Mom is his rock and his cheerleader.
---Barb
Monday, October 15, 2012
Cot 2: Pre-transplant counseling......
(This post is late - the counseling was two weeks ago, but I want to include it here for those who may follow on this path - then I'll update on what's happened since then)
Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11. Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details. In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.
Bottom line: it's SCARY. He had previously discussed some of the risks, such as hepatic occlusive disease, with us. And of course infectious risk seems obvious. I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat.
The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition. That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.
I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures. The doctor asked whether he wanted breathing tubes, etc. Ryan's initial reaction was that he'd rather not have them. The doctor replied that of course no one wants them and these aren't used unless necessary. Ryan repeated that he'd rather not have them. I unstantly recognized that we were talking life support.
I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying. And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering. At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary. Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway). Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.
Ryan signed the consents.
The ride home was somber. The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.
The weather was gray, and so was our mood.
Until this point, we had been sailing forward toward this future, happy to have survived to this point. Once again: what choice do we have? Going boldly where we never wanted to go. Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.
---Barb
Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11. Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details. In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.
Bottom line: it's SCARY. He had previously discussed some of the risks, such as hepatic occlusive disease, with us. And of course infectious risk seems obvious. I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat.
The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition. That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.
I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures. The doctor asked whether he wanted breathing tubes, etc. Ryan's initial reaction was that he'd rather not have them. The doctor replied that of course no one wants them and these aren't used unless necessary. Ryan repeated that he'd rather not have them. I unstantly recognized that we were talking life support.
I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying. And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering. At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary. Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway). Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.
Ryan signed the consents.
The ride home was somber. The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.
The weather was gray, and so was our mood.
Until this point, we had been sailing forward toward this future, happy to have survived to this point. Once again: what choice do we have? Going boldly where we never wanted to go. Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.
---Barb
Saturday, October 6, 2012
October 2 - Sobering details of what lies ahead
We went to Boston last weekend for a mini family vacation at a hotel with a pool - timed to coincide with Meghan's trip for her preliminary testing. The "kids" (everybody but Tim) and I went on the MBTA to the Aquarium and Quincy Market, and the little girls spent a lot of time in the pool. Tim and Sophia and the girls left for Albany on Monday.
Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect. She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections. She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days. On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells. The lab will "count" them and then they will be infused into Ryan very soon thereafter. If they were unable to harvest enough, the process will be repeated on Friday.
Meghan has some friends in Boston. She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.
Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday. His first appointment was with the radiation oncologist. She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday. To stabilize his head during the radiation he was fitted for a mask. To do this, they heat a plastic mesh sheet and press it down over his head. When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard.
And the TBI - total body irradiation, which will be divided into 7 doses over four days. Sobering discussion of the side effects and potential complications. Short-term, Ryan can expect to be extremely weak and tired. Long-term: expect development of cataracts at a younger age, and thyroid failure. My understanding was that both are pretty much expected rather than possibilities. There can be swelling of the parotid gland and mouth sores. Consents signed - what choice do we have, really? Glad he'll be alive to have cataracts and hypothyroidism.
(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)
Then on to meet with a social worker. They offer emotional support and practical support such as help finding housing for the "Caretaker". Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her. Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far. Yet this is the first time any kind of emotional support has been offered. Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network.
Next we met with Pat Byrne - our transplant nurse case manager. Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control. So we can't help but be very fond of Pat. Pat explained the procedure from start to finish:
Thursday, October 11: Ryan receives out-patient CNS radiation - just a few minutes.
Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology. These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc. Then he receives his second and final dose of CNS radiation.
Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy. It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently. This will also be given on Sunday. He'll lose his hair again.
Sunday, October 14 - Second day of Cytoxan for Ryan. Megan arrives and starts her Neupegen.
Monday through Wednesday: Ryan gets twice daily TBI - total body radiation. Meghan gets daily injections - she might feel well, and might have flu-like symptoms.
Thursday - Ryan get his last TBI. Meghan has phoresis. Ryan receives the transplant. The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.
Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells. Ryan's new cells start to find their way to his marrow.
Pat told us what we need to do before and after to protect Ryan from infection. The dietary and social restrictions. And more. He needs to change his clothes daily. Keep visitors to a minimum. Visitors will need to wear masks. Luggage, etc, that might have germs can't enter the room. There will be very close monitoring by his nurses. He'll have frequent blood tests to follow his progress.
She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them. They're all rooting for him.
For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber. The positivity and personal care we've received has been really impressive.
Then labs.
Then his appointment with Dr. Cutler - his transplant physician. But it's getting late, so that's a story for another post.........
---Barb
Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect. She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections. She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days. On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells. The lab will "count" them and then they will be infused into Ryan very soon thereafter. If they were unable to harvest enough, the process will be repeated on Friday.
Meghan has some friends in Boston. She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.
Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday. His first appointment was with the radiation oncologist. She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday. To stabilize his head during the radiation he was fitted for a mask. To do this, they heat a plastic mesh sheet and press it down over his head. When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard.
And the TBI - total body irradiation, which will be divided into 7 doses over four days. Sobering discussion of the side effects and potential complications. Short-term, Ryan can expect to be extremely weak and tired. Long-term: expect development of cataracts at a younger age, and thyroid failure. My understanding was that both are pretty much expected rather than possibilities. There can be swelling of the parotid gland and mouth sores. Consents signed - what choice do we have, really? Glad he'll be alive to have cataracts and hypothyroidism.
(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)
Then on to meet with a social worker. They offer emotional support and practical support such as help finding housing for the "Caretaker". Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her. Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far. Yet this is the first time any kind of emotional support has been offered. Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network.
Next we met with Pat Byrne - our transplant nurse case manager. Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control. So we can't help but be very fond of Pat. Pat explained the procedure from start to finish:
Thursday, October 11: Ryan receives out-patient CNS radiation - just a few minutes.
Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology. These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc. Then he receives his second and final dose of CNS radiation.
Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy. It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently. This will also be given on Sunday. He'll lose his hair again.
Sunday, October 14 - Second day of Cytoxan for Ryan. Megan arrives and starts her Neupegen.
Monday through Wednesday: Ryan gets twice daily TBI - total body radiation. Meghan gets daily injections - she might feel well, and might have flu-like symptoms.
Thursday - Ryan get his last TBI. Meghan has phoresis. Ryan receives the transplant. The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.
Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells. Ryan's new cells start to find their way to his marrow.
Pat told us what we need to do before and after to protect Ryan from infection. The dietary and social restrictions. And more. He needs to change his clothes daily. Keep visitors to a minimum. Visitors will need to wear masks. Luggage, etc, that might have germs can't enter the room. There will be very close monitoring by his nurses. He'll have frequent blood tests to follow his progress.
She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them. They're all rooting for him.
For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber. The positivity and personal care we've received has been really impressive.
Then labs.
Then his appointment with Dr. Cutler - his transplant physician. But it's getting late, so that's a story for another post.........
---Barb
Wednesday, September 26, 2012
September 26th - The Check List and The Bucket List
Duct cleaning - check
Flu shots - check (except Tim and Sophia - they're still on the list)
Car detailing - scheduled for tomorrow (time to clean up the Cheeriomobile)
Oil change - check
Window sills - check
Garbage disposal installed - check (well almost - the installer couldn't wire it, so that's yet to be done)
Kaia's new glasses - check
My glasses - check
My annual exam - check (drove all the way to Malone and back today; probably time to consider getting a doctor closer to home.....)
Eviction notice to problem tenant - check
Arrange to have parent teacher conferences by phone - check
My list is getting shorter and so is the time to transplant.
Meghan's preliminary labs, counseling, exam and consent forms are scheduled for Monday morning. She flies into Boston on Saturday and we're all going over to spend the weekend together and enjoy the city a little bit. We'll familiarize Sophia with the metro system so she can park at a park-n-ride outside the city and take the metro to the hospital or Hope Lodge to see Ryan. Meghan will fly out Monday after her appoinments to minimize her time away from work.
Ryan's final pre-admission testing and counseling and consents will be on Tuesday, so he and I will stay over until Tuesday. He had spinal taps and intrathecal chemo the past 2 Mondays and (.....need to be careful not to jinx him here.....) he made it through with minimal headaches this time. He's also had his EKG, cardiac Echo, chest X-ray and enough tubes of blood to make me wonder if he'll need a transfusion! His labs are still wonderful and he's feeling pretty good.
While I'm working on my checklist, Ryan's working on his pre-transplant bucket list: movies, meals out with Sophia, visiting people with the missionaries, eating things he won't be able to eat after the transplant.
Sophia and I dumped the girls at TaeKwonDo yesterday and sneaked away to have pedicures. I always wonder what the staff is saying when they speak Chinese and laugh. Guess I'm going to need to work harder on my Chinese! Or maybe I don't want to know.......
Sophia's feet are really ticklish, and she was trying hard to hold still but turning red and giggling. Pretty soon everybody in the shop was laughing along since she was so funny!
MeiLin had a virus this week with a sore throat and fever - crawled in our bed Monday morning at 4:30 coughing like crazy. She always gets bronchospasm ('reactive airway disease" - like asthma) whenever she gets a virus. I started the nebulizer treatment, and laid in bed trying to figure out how I was going to get Ryan to Boston and get MeiLin taken care of since she needed to stay home from school. MeiLin can do the nebulizer treatments herself, but I felt bad leaving her home alone.
Tim can do a lot of his work from home via the computer, so he took a "snow day" - working from home as he has done a few times when he's been snowed in. He always feels a little guilty when he doesn't go in to work. Interestingly, there was a problem with his building filling with smoke and having to be evacuated, then everyone was sent home for the day. So it sounds like he worked more than anyone at the office!!
I was fearful all week that MeiLin would infect Ryan - we banned her from setting the table, emptying the dishwasher, using the hall bathroom, using the main computer that Ryan uses. I even took her to the pediatrician to have a strep test. I warned them that I'd probably be a bit neurotic this year, pulling the trigger much more quickly than I normally would if the girls are a little sick. They were very supportive.
Then there was Kaia's annual check-up. She had a captive audience with the PA, and as she put on her one-woman comedy act I was a little worried that they'd call in child protective services, with answers suggesting that she only eats Ramen noodles and Nutella, she doesn't wear any protective gear when she roller blades (she doesn't even have a pair!), mom doesn't care about seat belts, we beat her if she gets in trouble, etc. Thankfully, MeiLin was also in the audience and was falling off her chair laughing, interspersed with patient reassurances to the PA that Kaia was just pulling her chain.
Sixteen days and counting to admission. Still need to finish the Halloween costumes, rug cleaning, de-cluttering (the bane of my existance). Need to fix the broken visor in my car, get it detailed. Prepare a few freezer meals for Tim and the girls. Make arrangements for rides to Chinese classes in Saratoga Springs. And a few other miscellaneous things. All in all, I think things are coming together and we're just about set.
We're getting boarded up for the other wall of that hurricane. Although I know this will probably be tougher on Ryan than the chemo has been, I feel confident that he will come through it well. But it's going to be hard to watch him lose weight, have more radiation and medication side-effects, and be so very limited in what he can do. I thankful for technology that will allow him to keep in touch with friends and help to ease the boredom and isolation.
Please continue to keep Ryan in your prayers - this won't be easy.
Thanks!!
---Barb
Flu shots - check (except Tim and Sophia - they're still on the list)
Car detailing - scheduled for tomorrow (time to clean up the Cheeriomobile)
Oil change - check
Window sills - check
Garbage disposal installed - check (well almost - the installer couldn't wire it, so that's yet to be done)
Kaia's new glasses - check
My glasses - check
My annual exam - check (drove all the way to Malone and back today; probably time to consider getting a doctor closer to home.....)
Eviction notice to problem tenant - check
Arrange to have parent teacher conferences by phone - check
My list is getting shorter and so is the time to transplant.
Meghan's preliminary labs, counseling, exam and consent forms are scheduled for Monday morning. She flies into Boston on Saturday and we're all going over to spend the weekend together and enjoy the city a little bit. We'll familiarize Sophia with the metro system so she can park at a park-n-ride outside the city and take the metro to the hospital or Hope Lodge to see Ryan. Meghan will fly out Monday after her appoinments to minimize her time away from work.
Ryan's final pre-admission testing and counseling and consents will be on Tuesday, so he and I will stay over until Tuesday. He had spinal taps and intrathecal chemo the past 2 Mondays and (.....need to be careful not to jinx him here.....) he made it through with minimal headaches this time. He's also had his EKG, cardiac Echo, chest X-ray and enough tubes of blood to make me wonder if he'll need a transfusion! His labs are still wonderful and he's feeling pretty good.
While I'm working on my checklist, Ryan's working on his pre-transplant bucket list: movies, meals out with Sophia, visiting people with the missionaries, eating things he won't be able to eat after the transplant.
Sophia and I dumped the girls at TaeKwonDo yesterday and sneaked away to have pedicures. I always wonder what the staff is saying when they speak Chinese and laugh. Guess I'm going to need to work harder on my Chinese! Or maybe I don't want to know.......
Sophia's feet are really ticklish, and she was trying hard to hold still but turning red and giggling. Pretty soon everybody in the shop was laughing along since she was so funny!
MeiLin had a virus this week with a sore throat and fever - crawled in our bed Monday morning at 4:30 coughing like crazy. She always gets bronchospasm ('reactive airway disease" - like asthma) whenever she gets a virus. I started the nebulizer treatment, and laid in bed trying to figure out how I was going to get Ryan to Boston and get MeiLin taken care of since she needed to stay home from school. MeiLin can do the nebulizer treatments herself, but I felt bad leaving her home alone.
Tim can do a lot of his work from home via the computer, so he took a "snow day" - working from home as he has done a few times when he's been snowed in. He always feels a little guilty when he doesn't go in to work. Interestingly, there was a problem with his building filling with smoke and having to be evacuated, then everyone was sent home for the day. So it sounds like he worked more than anyone at the office!!
I was fearful all week that MeiLin would infect Ryan - we banned her from setting the table, emptying the dishwasher, using the hall bathroom, using the main computer that Ryan uses. I even took her to the pediatrician to have a strep test. I warned them that I'd probably be a bit neurotic this year, pulling the trigger much more quickly than I normally would if the girls are a little sick. They were very supportive.
Then there was Kaia's annual check-up. She had a captive audience with the PA, and as she put on her one-woman comedy act I was a little worried that they'd call in child protective services, with answers suggesting that she only eats Ramen noodles and Nutella, she doesn't wear any protective gear when she roller blades (she doesn't even have a pair!), mom doesn't care about seat belts, we beat her if she gets in trouble, etc. Thankfully, MeiLin was also in the audience and was falling off her chair laughing, interspersed with patient reassurances to the PA that Kaia was just pulling her chain.
Sixteen days and counting to admission. Still need to finish the Halloween costumes, rug cleaning, de-cluttering (the bane of my existance). Need to fix the broken visor in my car, get it detailed. Prepare a few freezer meals for Tim and the girls. Make arrangements for rides to Chinese classes in Saratoga Springs. And a few other miscellaneous things. All in all, I think things are coming together and we're just about set.
We're getting boarded up for the other wall of that hurricane. Although I know this will probably be tougher on Ryan than the chemo has been, I feel confident that he will come through it well. But it's going to be hard to watch him lose weight, have more radiation and medication side-effects, and be so very limited in what he can do. I thankful for technology that will allow him to keep in touch with friends and help to ease the boredom and isolation.
Please continue to keep Ryan in your prayers - this won't be easy.
Thanks!!
---Barb
Saturday, September 15, 2012
September 15 - the eye of the storm
We're in the "lull" - the eye of the hurricane so to speak. We've made it through the first wall, now it's relatively quiet, but we're gearing up for the next barrage.
On September 4th, Ryan had his bone marrow biopsy at the conclusion of the second cycle of the CD22 antibody chemo. On Friday, September 7th, we saw Dr. Cutler - the transplant specialist. He told us that the marrow at the completion of Cycle one showed not only cellular remission, but also biochemical remission - meaning that all the specialized stains that can tell normal lymphocytes from cancerous ones failed to detect any cancer cells! Although the results of the marrow biopsy from 3 days earlier were not complete, he anticipated that it would confirm remission as well.
He discussed the potential liver damage from the chemo, and although Ryan's liver function has been normal throughout, there have been some cases of hepatic vascular occlusive disease after transplant in patients treated with this chemo. It appears that the combination of this particular chemo and one of the medications used to prevent graft versus host disease ("GVH" disease - where the "new" marrow from the donor recognizes the recipient's body as being "foreign" and attacks it) results in a higher incidence of this severe liver condition. The GVH drug is used frequently at Dana Farber in addition to the standard protocols for GVH. So in patients like Ryan, they avoid the use of that particular GVH drug.
We also met with the housing coordinator from the transplant service, and filled out an application to stay at the Hope House - sponsored by a pharmaceutical company, it is specially designed for patients immediately post transplant, with suites for the patient and a caretaker, who is required to be with the patient at all times. Each patients has a suite and their own refrigerator, etc. There is no cost to stay at the facility!!
At that point the transplant was planned for November, and Ryan was scheduled to start the third cycle of the chemo starting on the 10th.
On the drive to Boston on the 10th, I got the strong impression that I was uncomfortable with Ryan having the additional chemo, fearing that it might further increase the risk of hepatic vascular occlusive disease and wondering - since he was already in remission - what benefit we gained. Yet I was so thankful that the clinical trial drug had saved Ryan's life, that I didn't want to be unreasonable demanding removal from the protocol or offending those who had saved his life. I asked Ryan if it was OK if I asked Dr. Steensma about the pros and cons. Ryan voiced the same concerns. So we went into the appointment with a list of questions - somewhat apprehensive to be questioning the additional chemo, yet feeling that we shouldn't do it.........
Dr. Steensma came into the room and immediately told us that he and Dr. Cutler had been discussing Ryan's care, and that they would prefer to fore go the third cycle of chemo and move the transplant up to October. Within half an hour we were back on the schedule for October. I immediately called Meghan to let her know, assuming that she had rearranged her work schedule and her life based on the November dates. And, of course, she had. Then we called the housing coordinator to let her know there was a change in the dates we would need to be there.
Ryan had the first of two intrathecal chemo injections (chemo in the spinal fluid via spinal tap), and we left for home hours earlier that we had planned since the clinical trial chemo was not done.
Since then we've been working out the logistics of getting Ryan back for his pre-transplant tests earlier than planned because of a Catch 22 with the insurance. He can't be officially approved for the stem cell transplant until his testing is complete. This means that his donor - Meghan - can't be seen at Boston for her physical exam and testing. If we wait until Ryan's October 2nd appointment, the insurance approval may not come until days before the transplant, necessitating Meghan be here a lot longer that she had planned.
Of course, we didn't discover this problem until Friday afternoon. We left messages for the transplant coordinator, expecting they would deal with it on Monday. They called today and have moved Ryan's appointment to this coming Monday. That are so fantastic at working with us and accommodating our needs and requests.
Meghan's job is as an advertising account executive - and she is in charge of the LDS Church's social media, including mormon.org. Because of Mitt Romney's candidacy, there has been a huge upsurge in interest in the church, so her job has been in really high gear, and will continue to be until after the election (or maybe even longer if he's elected). So she is trying to make a quick trip here on a Friday or Monday for the initial physical, catching a red-eye to minimize the time away from work. And she'll be planning to do a lot of work while she's here for the donation.
At home we're preparing in a number of ways - got a second fridge/freezer to put in the garage so we can separate things for Ryan from things like onions that my have mold of microbes, and we can freeze and store single servings of food for lunches, etc. After the transplant he will have significant restrictions for a while to prevent food borne infections. He can't eat anything raw: fresh veggies and most fruits are out' no deli meat, no bakery bread, no food more than 24 hours after preparation, etc. He can only drink certain types of bottled water, no rare meats, etc. And no eating out.
The well water was tested and is OK. We're having the heating / AC ducts cleaned out next week. Throwing away and area rug that was a hand-me-down (Kathy Hanson would call it "free-licious), and replacing it with a new one. Deep cleaning bathrooms, window sills, fridge, walls, bedding, etc.
Ryan will lose a significant amount of weight with the transplant - the radiation and additional drugs often cause loss of appetite and mouth sores. So we're trying to fatten him up now. It's kinda funny - Sophia and I are watching what we eat to try to lose the stress weight we've gained, and at the same time looking for ways to increase Ryan's caloric intake with nutritious foods.
For the two of them this is a time when they can get out a little bit, eat out at the favorite places, and check off Ryan's "bucket list" of things he wants to do and eat that will be prohibited for much of the next year.
Sophia is going to take courses to become a paralegal, and Ryan is taking a couple of BYU courses.
Mei:Lin and Kaia are back in school and seem to like their teachers, classes and classmates. They are both taking gymnastics, and Kaia is taking hiphop and tap dance. The tested for their "bo-dan" belts in TaeKwonDo this week - next is black belt. We're putting the Chinese language tutoring on hold until after I get home from Boston. Ryan will be in the hospital from Nov 12 - the end of November, then 30 days at Hope House. Maybe we'll be home for Thanksgiving or soon thereafter. It sounds like Christmas will be at home.
For those who are interested, our children are a case study in Mendelian genetics. The gene codes for the proteins in our stem cells involved in marrow transplant are located on a single chromosome, and we each have 2 involved chromosomes - one from our father and one from our mother. So if Tim had A and B, and I have C and D, our children could be AC, AD, BC or BD. By the roll of the dice each child has a 25% chance of being any of these. And, if you take hundreds of offspring (which, thankfully none of us actually have) 1/4 will have each type.
Of our four older children, we have: AC, AD, BC and BD. Pretty amazing!! Ryan is our 5th child - and that's why there is only one match. If Ryan is AC, Missy is BD - no stem cell chromosomes similarity at all. Sean and Shannon each share on strand with Ryan, but that means they only have half the same genetic material as Ryan. And Meghan is indeed a "perfect" match - also an AD.
That means none of the other three could be a match for each other. So you'd better all not follow Ryan's footsteps!!
On September 4th, Ryan had his bone marrow biopsy at the conclusion of the second cycle of the CD22 antibody chemo. On Friday, September 7th, we saw Dr. Cutler - the transplant specialist. He told us that the marrow at the completion of Cycle one showed not only cellular remission, but also biochemical remission - meaning that all the specialized stains that can tell normal lymphocytes from cancerous ones failed to detect any cancer cells! Although the results of the marrow biopsy from 3 days earlier were not complete, he anticipated that it would confirm remission as well.
He discussed the potential liver damage from the chemo, and although Ryan's liver function has been normal throughout, there have been some cases of hepatic vascular occlusive disease after transplant in patients treated with this chemo. It appears that the combination of this particular chemo and one of the medications used to prevent graft versus host disease ("GVH" disease - where the "new" marrow from the donor recognizes the recipient's body as being "foreign" and attacks it) results in a higher incidence of this severe liver condition. The GVH drug is used frequently at Dana Farber in addition to the standard protocols for GVH. So in patients like Ryan, they avoid the use of that particular GVH drug.
We also met with the housing coordinator from the transplant service, and filled out an application to stay at the Hope House - sponsored by a pharmaceutical company, it is specially designed for patients immediately post transplant, with suites for the patient and a caretaker, who is required to be with the patient at all times. Each patients has a suite and their own refrigerator, etc. There is no cost to stay at the facility!!
At that point the transplant was planned for November, and Ryan was scheduled to start the third cycle of the chemo starting on the 10th.
On the drive to Boston on the 10th, I got the strong impression that I was uncomfortable with Ryan having the additional chemo, fearing that it might further increase the risk of hepatic vascular occlusive disease and wondering - since he was already in remission - what benefit we gained. Yet I was so thankful that the clinical trial drug had saved Ryan's life, that I didn't want to be unreasonable demanding removal from the protocol or offending those who had saved his life. I asked Ryan if it was OK if I asked Dr. Steensma about the pros and cons. Ryan voiced the same concerns. So we went into the appointment with a list of questions - somewhat apprehensive to be questioning the additional chemo, yet feeling that we shouldn't do it.........
Dr. Steensma came into the room and immediately told us that he and Dr. Cutler had been discussing Ryan's care, and that they would prefer to fore go the third cycle of chemo and move the transplant up to October. Within half an hour we were back on the schedule for October. I immediately called Meghan to let her know, assuming that she had rearranged her work schedule and her life based on the November dates. And, of course, she had. Then we called the housing coordinator to let her know there was a change in the dates we would need to be there.
Ryan had the first of two intrathecal chemo injections (chemo in the spinal fluid via spinal tap), and we left for home hours earlier that we had planned since the clinical trial chemo was not done.
Since then we've been working out the logistics of getting Ryan back for his pre-transplant tests earlier than planned because of a Catch 22 with the insurance. He can't be officially approved for the stem cell transplant until his testing is complete. This means that his donor - Meghan - can't be seen at Boston for her physical exam and testing. If we wait until Ryan's October 2nd appointment, the insurance approval may not come until days before the transplant, necessitating Meghan be here a lot longer that she had planned.
Of course, we didn't discover this problem until Friday afternoon. We left messages for the transplant coordinator, expecting they would deal with it on Monday. They called today and have moved Ryan's appointment to this coming Monday. That are so fantastic at working with us and accommodating our needs and requests.
Meghan's job is as an advertising account executive - and she is in charge of the LDS Church's social media, including mormon.org. Because of Mitt Romney's candidacy, there has been a huge upsurge in interest in the church, so her job has been in really high gear, and will continue to be until after the election (or maybe even longer if he's elected). So she is trying to make a quick trip here on a Friday or Monday for the initial physical, catching a red-eye to minimize the time away from work. And she'll be planning to do a lot of work while she's here for the donation.
At home we're preparing in a number of ways - got a second fridge/freezer to put in the garage so we can separate things for Ryan from things like onions that my have mold of microbes, and we can freeze and store single servings of food for lunches, etc. After the transplant he will have significant restrictions for a while to prevent food borne infections. He can't eat anything raw: fresh veggies and most fruits are out' no deli meat, no bakery bread, no food more than 24 hours after preparation, etc. He can only drink certain types of bottled water, no rare meats, etc. And no eating out.
The well water was tested and is OK. We're having the heating / AC ducts cleaned out next week. Throwing away and area rug that was a hand-me-down (Kathy Hanson would call it "free-licious), and replacing it with a new one. Deep cleaning bathrooms, window sills, fridge, walls, bedding, etc.
Ryan will lose a significant amount of weight with the transplant - the radiation and additional drugs often cause loss of appetite and mouth sores. So we're trying to fatten him up now. It's kinda funny - Sophia and I are watching what we eat to try to lose the stress weight we've gained, and at the same time looking for ways to increase Ryan's caloric intake with nutritious foods.
For the two of them this is a time when they can get out a little bit, eat out at the favorite places, and check off Ryan's "bucket list" of things he wants to do and eat that will be prohibited for much of the next year.
Sophia is going to take courses to become a paralegal, and Ryan is taking a couple of BYU courses.
Mei:Lin and Kaia are back in school and seem to like their teachers, classes and classmates. They are both taking gymnastics, and Kaia is taking hiphop and tap dance. The tested for their "bo-dan" belts in TaeKwonDo this week - next is black belt. We're putting the Chinese language tutoring on hold until after I get home from Boston. Ryan will be in the hospital from Nov 12 - the end of November, then 30 days at Hope House. Maybe we'll be home for Thanksgiving or soon thereafter. It sounds like Christmas will be at home.
For those who are interested, our children are a case study in Mendelian genetics. The gene codes for the proteins in our stem cells involved in marrow transplant are located on a single chromosome, and we each have 2 involved chromosomes - one from our father and one from our mother. So if Tim had A and B, and I have C and D, our children could be AC, AD, BC or BD. By the roll of the dice each child has a 25% chance of being any of these. And, if you take hundreds of offspring (which, thankfully none of us actually have) 1/4 will have each type.
Of our four older children, we have: AC, AD, BC and BD. Pretty amazing!! Ryan is our 5th child - and that's why there is only one match. If Ryan is AC, Missy is BD - no stem cell chromosomes similarity at all. Sean and Shannon each share on strand with Ryan, but that means they only have half the same genetic material as Ryan. And Meghan is indeed a "perfect" match - also an AD.
That means none of the other three could be a match for each other. So you'd better all not follow Ryan's footsteps!!
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