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
Tuesday, November 20, 2012
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
Subscribe to:
Posts (Atom)