WooHoo - we're up to 1% neutrophils with WBCs still at 500!! Platelets dropped to 10,000 - the lowest yet. Low enough that spontaneous internal hemorrhage is a risk - and severe hemorrhage with a car accident, etc. We went in for platelets at 1 pm, but there is a critical blood shortage right now, and they didn't have Ryan's blod type - A negative.
Platelets are separated out from whole blood by a phoresis technique - similar to the centrifuge technique they used to reduce Ryan's cancer cells in the ER the first night. But the resultant product is not 100% pure platelets. Some Red Blood Cells (the ones that carry the blood type and Rh factor antigens) are still in the solution, albeit in very small numbers. It's these errant RBCs that can cause problems by invoking an immune response or transfusion reaction. Rh positive cells have a protein (antigen) on their surface that Rh negative cells don't have. So the body of an Rh negative person recognizes the Rh positive cells as invaders and tries to destroy them. In pregnant Rh negative women, these antibodies can cross the placenta and destroy the RBCs with the baby if a baby inherits Rh positive blood from the dad. We are able to prevent this by giving the moms RhoGam - which locks onto the Rh positive antigens of Rh positive RBCs and essentially camoflages them from the immune system.
So guess what Ryan got today - RhoGam! And a unit of A positive donor platelets. Not his usual flavor, but we'll take them!
The siblings who are in the US got their HLA packets today. Sean (working for the US State Department in Albania) is really stressing since they are short-handed at the embassy for much of the summer, and he simply can't take time off or leave Albania. And last minute tickets are outragiously expensive. So we're hoping someone else will be the match.
For those of you who were concerned that I posted in the wee hours last night, I've got to reassure you that it wasn't from insomnia. Since Albania is 6 hours ahead of us, I got up a 1 am to talk to Sean before he went to work today. He had an appointment with the embassy physician to discuss the HLA testing (by blood per the order from Albany Med). He was told the testing couldn't be done there. His swabs kit is on its way, and he should be able to do that easily and FedEx it back.
So I'm praying not only for minimal side effects of the chemo, and a close HLA match from a sibling, but also that it will be someone other than Sean. Am I asking too much?
Thanks to Anjanette Yeager and Denise Stevenson for bailing me out in transporting the girls today. I really appreciate you steipping up at the last minute for me.
Maybe I should let Ryan just go to these things by himself - he is, after all, an adult. But there's still a voice in me that say that I need to be there in case Mama Bear needs to make an appearance.....
Another CBC tomorrow, to Boston for consultation with the transplant team on Thursday. How do people who are working do this? One more evidence of tender mercies, even though I never planned to not be working at this stage of my life, God knew I was needed at home, first by Kaia and now by Ryan.
---Barb
Tuesday, June 26, 2012
Day 49 - June 25th: Zero Neutrophils
ZERO. Zero neutrophils on Ryan's blood work today. His WBC is 500 - pretty low, the differential (breakdown of WBCs by type, expressed as a percentage), shows it's almost all lymphocytes - what we want to get rid of. A few eosinophils (the WBCs involved in allergic reactions) and monocytes (most are stored in the spleen and can move quickly to site of infection to play a part in the bodies immune response). These are at normal levels of less than 5% each.
His platelets are 20,000. He's schedule to go to AMC tomorrow for another CBC and a platelet transfusion.
Which mean Ryan's ability to fight infections is almost zero. His IV site from a week ago was a little bit inflamed this morning - a tiny hard line of superficial thrombophlebitis. This evening, it's a red area in his skin about 1 X 2 cm and quite tender. We notified his oncologist who switched his antibiotic and told him to start taking his temperature. If it's above 100 degrees, he'll need to be admitted for IV antibiotics.
Started the application process for SSI. ALL (Acute Lymphocytic Leukemia) is one of about 80 diagnoses which automatically qualify for SSI benefits - or so it says on the government web site. But the civil servant Ryan met with at the Troy Social Security office wasn't particularly helpful with the application process. So we'll do it on-line. The good news is that it is retroactive to the date of diagnosis, so she can stall all she wants; he should receive the full benefit anyway.
All in all a frustrating day for Ryan.
Although I seem calm on the surface, the minute I have nothing to occupy my mind I feel queasy. I'll go with him for his transfusions tomorrow. Just need to make arrangements for the girls to get home from camp tomorrow if we're delayed at the hospital, and for MeiLin to get a ride from her day camp to her basketball camp at 1:00. Thanks to leftovers and various meals in the freezer, we're all set for food for supper.
Not sure whether our medical knowledge is a curse or a blessing. Probably a blessing for Ryan because we can provide some guidance. But part of me would rather not understand the implications of zero neutrophils with persisting lymphocytes..........
---Barb
His platelets are 20,000. He's schedule to go to AMC tomorrow for another CBC and a platelet transfusion.
Which mean Ryan's ability to fight infections is almost zero. His IV site from a week ago was a little bit inflamed this morning - a tiny hard line of superficial thrombophlebitis. This evening, it's a red area in his skin about 1 X 2 cm and quite tender. We notified his oncologist who switched his antibiotic and told him to start taking his temperature. If it's above 100 degrees, he'll need to be admitted for IV antibiotics.
Started the application process for SSI. ALL (Acute Lymphocytic Leukemia) is one of about 80 diagnoses which automatically qualify for SSI benefits - or so it says on the government web site. But the civil servant Ryan met with at the Troy Social Security office wasn't particularly helpful with the application process. So we'll do it on-line. The good news is that it is retroactive to the date of diagnosis, so she can stall all she wants; he should receive the full benefit anyway.
All in all a frustrating day for Ryan.
Although I seem calm on the surface, the minute I have nothing to occupy my mind I feel queasy. I'll go with him for his transfusions tomorrow. Just need to make arrangements for the girls to get home from camp tomorrow if we're delayed at the hospital, and for MeiLin to get a ride from her day camp to her basketball camp at 1:00. Thanks to leftovers and various meals in the freezer, we're all set for food for supper.
Not sure whether our medical knowledge is a curse or a blessing. Probably a blessing for Ryan because we can provide some guidance. But part of me would rather not understand the implications of zero neutrophils with persisting lymphocytes..........
---Barb
Sunday, June 24, 2012
Day 48, June 26
A very relaxing weekend. Ryan and Sophia went for walks on a nature path, rented a video from Red Box, and did normal things like laundry and dishes.
Ryan's WBC counts were pretty low on Friday - WBC of 700 (normal 6,000 -10,000), with 80% lymphocytes (the bad guys, in Ryan's case). Normally it's about 75% PMNs (not cancerous in Ryan's case) and 20% lymphocytes, and 5% other (WBCs involved in allergic responses, etc). So he is quite susceptible to infection. Dr. Zackon started him on prophylactic antibiotics, and he's avoiding crowds. Although we went to all 3 hours of church meetings today, we had the sacrament at home with Ryan.
We are so proud of Sophia - she's doing an awesome job at work, enjoys her co-workers, and looks like a million bucks when she heads off to work each day. Knowing she is in a reliable car is a relief to all of us, and it's a car Ryan can be in without risk of exposure to fungal infection.
When everybody asks if I'm OK, I have truthfully answered "yes", because I'm really not losing sleep or living in fear of losing Ryan. I have been sleeping surprisingly well, considering I'm prone to insomnia and often have trouble sleeping because of pain in my hands. But I'm learning you can only push stress away so long. I laid down for a few minutes after lunch today and woke up three hours later. Tim has developed dishydrosis in his hands - a stress-related condition he hasn't had for years, and never this bad.
Last night we had a Family Home Evening about the challenges we face as a family - Ryan's illness, Sophia's homesickness, Tim's health challenges, MeiLin's loss of her own room, etc. We showed a 3 minute on-line video (lds.org, search: "Come what may and love it"), and talked about how we can choose our attitude about adversity, stress, frustrations, and changes. People took turns adding family goals to the white board and we ended up with Respect, Humor, Kindness, Benefit of the Doubt, and Forgiveness. Then in big letters, MeiLin wrote, "Come What May and (HEART) IT!!"
As with all adversity, there is something we need to learn from this. None of us would ever have picked this lesson, but we are learning much about ourselves and about our Heavenly Father's love for us. And about the kind hearts and generous spirits of so many people from all aspects of our lives and all faiths.
Prayers are so often answered through other people: "Love one another....". Thanks for the outpouring of love.
---Barb
Ryan's WBC counts were pretty low on Friday - WBC of 700 (normal 6,000 -10,000), with 80% lymphocytes (the bad guys, in Ryan's case). Normally it's about 75% PMNs (not cancerous in Ryan's case) and 20% lymphocytes, and 5% other (WBCs involved in allergic responses, etc). So he is quite susceptible to infection. Dr. Zackon started him on prophylactic antibiotics, and he's avoiding crowds. Although we went to all 3 hours of church meetings today, we had the sacrament at home with Ryan.
We are so proud of Sophia - she's doing an awesome job at work, enjoys her co-workers, and looks like a million bucks when she heads off to work each day. Knowing she is in a reliable car is a relief to all of us, and it's a car Ryan can be in without risk of exposure to fungal infection.
When everybody asks if I'm OK, I have truthfully answered "yes", because I'm really not losing sleep or living in fear of losing Ryan. I have been sleeping surprisingly well, considering I'm prone to insomnia and often have trouble sleeping because of pain in my hands. But I'm learning you can only push stress away so long. I laid down for a few minutes after lunch today and woke up three hours later. Tim has developed dishydrosis in his hands - a stress-related condition he hasn't had for years, and never this bad.
Last night we had a Family Home Evening about the challenges we face as a family - Ryan's illness, Sophia's homesickness, Tim's health challenges, MeiLin's loss of her own room, etc. We showed a 3 minute on-line video (lds.org, search: "Come what may and love it"), and talked about how we can choose our attitude about adversity, stress, frustrations, and changes. People took turns adding family goals to the white board and we ended up with Respect, Humor, Kindness, Benefit of the Doubt, and Forgiveness. Then in big letters, MeiLin wrote, "Come What May and (HEART) IT!!"
As with all adversity, there is something we need to learn from this. None of us would ever have picked this lesson, but we are learning much about ourselves and about our Heavenly Father's love for us. And about the kind hearts and generous spirits of so many people from all aspects of our lives and all faiths.
Prayers are so often answered through other people: "Love one another....". Thanks for the outpouring of love.
---Barb
Friday, June 22, 2012
Day 46 - Friday, June 23: Met the managing oncologist
Ryan has been home for 4 days now!!!
We met his new oncologist today. What a relief!! Not only is he a nice guy, he's articulate& thorough and comes highly recommended. He laid out what will transpire over the next few weeks:
-Frequent CBCs (Complete Blood Counts) to follow his chemo response and be sure he doesn't need transfusions of RBCs or platelets
-Bone marrow biopsy in about 2 weeks
-Follow up with him on July 6th
The next steps in chemo will be determined after the marrow biopsy results.
Dr. Zackon informed us he'll be out of town for the next week on vacation, and arranged for follow-up while he is gone to be sure things are done on schedule. I can't tell you how reassuring it is to know that Ryan's out-patient care will be well managed.
He also discussed the benefits of marrow transplant in people in whom they are unable to achieve remission with chemo - the new stem cells recognize the cancer cells as foreign invaders and destroy them!! I hadn't realized that that happened - it's the beneficial part of the graft vs host reaction that occurs with transplants. He says in some people if they look really hard they can still find cancer cells, but because the new immunity can clear them the cancer cells don't occur in large enough numbers to cause problems.
Interesting that the same process that can damage body organs can assist in eliminating the cancer cells. What an incredible balancing act the transplant physicians must do to optimize the beneficial aspects while protecting the recipient from the damaging effects.
We meet with the transplant team next Thursday in Boston. We'll have more details after that.
Yesterday Ryan got their new car insured, inspected and registered; today Sophia got to drive to work in an air conditioned car. With temps in the high 80s, that has to be a lot more comfortable than their old ride.
It was a long day yesterday, but we got Shannon and Tofu delivered to her apartment in Brooklyn, then we went to the Museum of Natural history (air conditioned - the temp was near 100)and saw an IMAX movie about orphaned elephants and orangutans being raised to survive in the wild. Kaia picked the exhibit of the origins of man and MeiLin picked minerals. Both were great. I think MeiLin may be a geologist some day - she was ecstatic dashing from one beautiful stone to the next. Dinner in Chinatown, metro back to Brooklyn and two sleeping girls before we left New Jersey, getting home around midnight.
Grilled supper on the patio. Ryan and Sophia went for a walk on nearby nature trails. No cat yowling (but I actually miss Tofu - she's got lots of personality).
Looking for advice - we need to get rid of our 4 female pet mice before Ryan's transplant. Anybody's kid dying for pet mice? They come complete with food, bedding & cages......
We thought of having Tofu take care of it for us, but she was clearly above expressing any interest in rodents.
Hoping for a quiet weekend at home.
---Barb
We met his new oncologist today. What a relief!! Not only is he a nice guy, he's articulate& thorough and comes highly recommended. He laid out what will transpire over the next few weeks:
-Frequent CBCs (Complete Blood Counts) to follow his chemo response and be sure he doesn't need transfusions of RBCs or platelets
-Bone marrow biopsy in about 2 weeks
-Follow up with him on July 6th
The next steps in chemo will be determined after the marrow biopsy results.
Dr. Zackon informed us he'll be out of town for the next week on vacation, and arranged for follow-up while he is gone to be sure things are done on schedule. I can't tell you how reassuring it is to know that Ryan's out-patient care will be well managed.
He also discussed the benefits of marrow transplant in people in whom they are unable to achieve remission with chemo - the new stem cells recognize the cancer cells as foreign invaders and destroy them!! I hadn't realized that that happened - it's the beneficial part of the graft vs host reaction that occurs with transplants. He says in some people if they look really hard they can still find cancer cells, but because the new immunity can clear them the cancer cells don't occur in large enough numbers to cause problems.
Interesting that the same process that can damage body organs can assist in eliminating the cancer cells. What an incredible balancing act the transplant physicians must do to optimize the beneficial aspects while protecting the recipient from the damaging effects.
We meet with the transplant team next Thursday in Boston. We'll have more details after that.
Yesterday Ryan got their new car insured, inspected and registered; today Sophia got to drive to work in an air conditioned car. With temps in the high 80s, that has to be a lot more comfortable than their old ride.
It was a long day yesterday, but we got Shannon and Tofu delivered to her apartment in Brooklyn, then we went to the Museum of Natural history (air conditioned - the temp was near 100)and saw an IMAX movie about orphaned elephants and orangutans being raised to survive in the wild. Kaia picked the exhibit of the origins of man and MeiLin picked minerals. Both were great. I think MeiLin may be a geologist some day - she was ecstatic dashing from one beautiful stone to the next. Dinner in Chinatown, metro back to Brooklyn and two sleeping girls before we left New Jersey, getting home around midnight.
Grilled supper on the patio. Ryan and Sophia went for a walk on nearby nature trails. No cat yowling (but I actually miss Tofu - she's got lots of personality).
Looking for advice - we need to get rid of our 4 female pet mice before Ryan's transplant. Anybody's kid dying for pet mice? They come complete with food, bedding & cages......
We thought of having Tofu take care of it for us, but she was clearly above expressing any interest in rodents.
Hoping for a quiet weekend at home.
---Barb
Wednesday, June 20, 2012
Day 44 - Wednesday, June 20th
We've had a few days of routines at home. Feels good to simply do laundry, badger the girls to practice piano (a bit derailed over the past month - am I crazy or a kids like sharks: they smell blood and move in for the kill...?). OK - I know that wasn't exactly a loving motherly comment, but I insist that there are some similarities. When our older kids were little, I learned that taking them all to the grocery store after I had been up all night delivering babies was a costly proposition when we got to checkout and there were a gazillion treats in the basket and I didn't have the energy to fight it. So it has been lately with piano practice, flute practice, on-line Chinese lessons, cleaning rooms, chores, etc. They think their vacation starts this week. I think they've already had it, and their vacation ENDS this week!!!!
Ryan found a great used car. The car they drove from Utah to NY is a 1993 Toyota Camry with 286,000 miles (second engine) with a leaky roof and is is full of mildew. Given that fungal infections are lethal in immunocompromised patients, Tim and I were delighted to see the old thing go. Ryan has mixed feelings since he had some emotional attachment to the car. Makes a Mama proud that she's raised a kid (actually a whole bunch) who see it as a badge of honor to make something old suffice. Given the circumstances, I really like seeing Ryan's head shining in the newer cleaner car.
He's getting used to being bald (or is it just the heat?) and isn't wearing the hats to cover up in public much anymore. Sorry, Uncle Larry & Aunt Judy - he's still got some hang-ups about wearing the moose-head hat. Speaking of moose - tomorrow is the 11th anniversary of Missy's successful moose-hunting trip - in our minivan. We were lucky (or was it providence?) that we survived to tell the tale.
I just read a great book, "To Heaven and Back", written by an orthopedic surgeon who shares the story of her near-death experience. It is a wonderful testimony of God's love for all of us, and of the roles we all play in intertwined lives. She confirms that miracles still do occur, and debunks the idea of coincidences in our lives, acknowledging God's hand in all things. VERY uplifting.
I'm driving Shannon back to NYC tomorrow. It's the girls' last day of school, but we decided not to pass up a chance for them to see the city. Or at least an air conditioned part of it - it's going to be in the mid-90s, so we're planning on going to some museums and then eating in Chinatown.
Ryan's going to use Tim's car to take Tim and Sophia to work, then get his blood drawn at Albany Med before coming back to get his new ride registered. Then on Friday we see the new oncologist, Dr. Ira Zackon. We haven't a clue as to what comes after that.
---Barb
Monday, June 18, 2012
Day 42 - June 18, 2012: Back Home!
With his last dose of the second chemo cycle earlier today behid him, Ryan is back home. He'll need some labs later this week and has an appointment with the new oncologist on Friday. He's just happy to be "free"!
Some nausea and persisting headaches, and of course the chronic weakness, but other than that he's doing well and in good spirits.
MeiLin's 5th grade graduation was today. The top 2 students in each class were recognized; her teacher came up after the event to tell her that she came in third - by a very small margin. She was pleased to hear that.
As the end of the school year approaches, Kaia becomes more irritable. She likes her routines, and as much as she relishes the idea of no school, the lack of daily routines is quite unsettling for her.
In the past month, we've lost much of our routine - especially the parts the girls would prefer to drop. Like piano practice, chores, cleaning rooms, etc. We had a pow-wow today and I hope to get back on track. More for me than for Kaia!!!
Shannon is in North Creek (a village up in the Adirondacks where she used to white-water guide and still has friends) until Wednesday evening. Then we will drive to NYC on Thursday to take her home. So we are short a car. There was an accident and a terrible back-up on the way to Sophia's work this morning. I was dropping her off since Shannon has Sophia & Ryan's car. It took us 80 minutes to make what is normally a 15 minute drive.
I was thinking it would be fun to "do something" in the city with the girls since I have to make the drive anyway. But with 95 degrees predicted, I think it will be a museum followed by a meal in China town, then home.
Hopefully we'll have a little lull here before the next crisis............
---Barb
Some nausea and persisting headaches, and of course the chronic weakness, but other than that he's doing well and in good spirits.
MeiLin's 5th grade graduation was today. The top 2 students in each class were recognized; her teacher came up after the event to tell her that she came in third - by a very small margin. She was pleased to hear that.
As the end of the school year approaches, Kaia becomes more irritable. She likes her routines, and as much as she relishes the idea of no school, the lack of daily routines is quite unsettling for her.
In the past month, we've lost much of our routine - especially the parts the girls would prefer to drop. Like piano practice, chores, cleaning rooms, etc. We had a pow-wow today and I hope to get back on track. More for me than for Kaia!!!
Shannon is in North Creek (a village up in the Adirondacks where she used to white-water guide and still has friends) until Wednesday evening. Then we will drive to NYC on Thursday to take her home. So we are short a car. There was an accident and a terrible back-up on the way to Sophia's work this morning. I was dropping her off since Shannon has Sophia & Ryan's car. It took us 80 minutes to make what is normally a 15 minute drive.
I was thinking it would be fun to "do something" in the city with the girls since I have to make the drive anyway. But with 95 degrees predicted, I think it will be a museum followed by a meal in China town, then home.
Hopefully we'll have a little lull here before the next crisis............
---Barb
Saturday, June 16, 2012
Day 40 - June 16, 2012
Ryan starts treatment with etoposide today. Wikipedia summary:
"Etoposide forms a ternary complex with DNA and the topoisomerase II enzyme (which aids in DNA unwinding), prevents re-ligation of the DNA strands, and by doing so causes DNA strands to break. Cancer cells rely on this enzyme more than healthy cells, since they divide more rapidly. Therefore, this causes errors in DNA synthesis and promotes apoptosis of the cancer cell"
"Its chemical make-up derives from podophyllotoxin, a toxin found in the American Mayapple."
I continue to be amazed at the level of understanding scientists have about the differences between cancer cells and normal cells. My mind doesn't work at all on that level - how can they figure these things out? In any case I am grateful for those who spend their lives in labs, persisting probably in spite of many years of minimal results, until they discover something new that contributes another piece to the puzzle.
I mean really - who would think to look into the "American Mayapple" for a cancer treatment? Yet it's more confirmation that God has given us all that we need, and that science and religion are irrevocably intertwined rather than mutually exclusive!
Ryan has had severe nausea most of the day, worsened by side effects of Fioricet which he was given for persisting severe headaches. Add that to orders for less effective nausea meds, and a resident (physician in training) who was reluctant to change the pain med order because he didn't "know the patient", and it was a miserable day for him.
He finally got his etoposide around 5 pm, with the infusion lasting 3 hours. He has tolerated it well so far. Two more doses of this and he'll be home. He is hoping for a discharge early Monday, but the reality of hospital discharges is that it will be mid to late afternoon by the time he gets the chemo and is observed and ready to go. This time I'm going to push hard to have all his follow-up appointments made and the planned follow-up arranged before we leave.
MeiLin and her friend set up a lemonade stand in the front yard today - complete with a lemon juicer, knife & cutting board, ice, sugar, bottled water, gloves, etc. They made two big signs to be seen from each direction on our busy road. All their business came from our immediate neighbors - they made $5 including tips, and split it. Little entrepreneurs!!
Fathers Day tomorrow. We'll all go to have sacrament with Ryan in the hospital, and have a little celebration there. Whether we bring the triple decker gourmet chocolate cake I bought will depend on how Ryan is feeling.
---Barb
"Etoposide forms a ternary complex with DNA and the topoisomerase II enzyme (which aids in DNA unwinding), prevents re-ligation of the DNA strands, and by doing so causes DNA strands to break. Cancer cells rely on this enzyme more than healthy cells, since they divide more rapidly. Therefore, this causes errors in DNA synthesis and promotes apoptosis of the cancer cell"
"Its chemical make-up derives from podophyllotoxin, a toxin found in the American Mayapple."
I continue to be amazed at the level of understanding scientists have about the differences between cancer cells and normal cells. My mind doesn't work at all on that level - how can they figure these things out? In any case I am grateful for those who spend their lives in labs, persisting probably in spite of many years of minimal results, until they discover something new that contributes another piece to the puzzle.
I mean really - who would think to look into the "American Mayapple" for a cancer treatment? Yet it's more confirmation that God has given us all that we need, and that science and religion are irrevocably intertwined rather than mutually exclusive!
Ryan has had severe nausea most of the day, worsened by side effects of Fioricet which he was given for persisting severe headaches. Add that to orders for less effective nausea meds, and a resident (physician in training) who was reluctant to change the pain med order because he didn't "know the patient", and it was a miserable day for him.
He finally got his etoposide around 5 pm, with the infusion lasting 3 hours. He has tolerated it well so far. Two more doses of this and he'll be home. He is hoping for a discharge early Monday, but the reality of hospital discharges is that it will be mid to late afternoon by the time he gets the chemo and is observed and ready to go. This time I'm going to push hard to have all his follow-up appointments made and the planned follow-up arranged before we leave.
MeiLin and her friend set up a lemonade stand in the front yard today - complete with a lemon juicer, knife & cutting board, ice, sugar, bottled water, gloves, etc. They made two big signs to be seen from each direction on our busy road. All their business came from our immediate neighbors - they made $5 including tips, and split it. Little entrepreneurs!!
Fathers Day tomorrow. We'll all go to have sacrament with Ryan in the hospital, and have a little celebration there. Whether we bring the triple decker gourmet chocolate cake I bought will depend on how Ryan is feeling.
---Barb
Friday, June 15, 2012
Day 39 - Friday, June 15
Third dose of AraC this morning. As well as nausea and hair loss (like it matters anymore) this drug can cause cerebral (brain) side effects. Before every dose, Ryan has to sign his name. I guess differences in the signature can signal toxicity, and the next dose would be withheld or delayed.
Tomorrow he starts another chemo drug - one I'm not familiar with (I had no pen & paper with me to write it down this morning). Both of these drugs interfere with cellular reproduction. I would guess that the effect is not specific to lymphocytes, but I don't know for sure.
The bladder symptoms lessen somewhat after his steroid dose, and increase before the next dose. The doctors told Ryan they would be using less toxic drugs for his future intrathecal chemo.
Ryan is hungry from the steroids, so he's eating everything in sight again. We took a walk this morning around the unit several times.
Shannon is felling almost normal. She's working with some friends on a silent movie while she is here in the Albany area. She's written the "script" and is gathering props, etc. Should be interesting!
I've delegated (?abdicated?) most of my YW presidency responsibilities to my counselors who are fantastic - many thanks to Gretchen, Cindy and Megan!
I'm trying to be upbeat, but this time around I feel even more helpless. We watched an IMAX movie yesterday on MeiLin's field trip about how changes in the polar ice cap are affecting polar bears. A lot of the movie was about a polar bear mother trying to protect her cubs. I relate.
Part of my problem is simple fatigue. We've been pushing pretty hard on all fronts for the past month. A recent General Conference address comes to mind - the one where Pres. Uchtdorf recommended slowing down and pacing yourself during times of stress - he compared it to what a pilot does when he hits turbulence. My default mode is to push myself harder. I don't think that will help since there's really nothing I can do. Learning......... Or trying to.
The current plan is for Ryan to come home on Monday. Nor sure when the follow up biopsies will be done or when the next chemo will happen. Not exactly the course I was hoping for when we left Dana Farber on Tuesday.
Thanks for all the prayers.
---Barb
Tomorrow he starts another chemo drug - one I'm not familiar with (I had no pen & paper with me to write it down this morning). Both of these drugs interfere with cellular reproduction. I would guess that the effect is not specific to lymphocytes, but I don't know for sure.
The bladder symptoms lessen somewhat after his steroid dose, and increase before the next dose. The doctors told Ryan they would be using less toxic drugs for his future intrathecal chemo.
Ryan is hungry from the steroids, so he's eating everything in sight again. We took a walk this morning around the unit several times.
Shannon is felling almost normal. She's working with some friends on a silent movie while she is here in the Albany area. She's written the "script" and is gathering props, etc. Should be interesting!
I've delegated (?abdicated?) most of my YW presidency responsibilities to my counselors who are fantastic - many thanks to Gretchen, Cindy and Megan!
I'm trying to be upbeat, but this time around I feel even more helpless. We watched an IMAX movie yesterday on MeiLin's field trip about how changes in the polar ice cap are affecting polar bears. A lot of the movie was about a polar bear mother trying to protect her cubs. I relate.
Part of my problem is simple fatigue. We've been pushing pretty hard on all fronts for the past month. A recent General Conference address comes to mind - the one where Pres. Uchtdorf recommended slowing down and pacing yourself during times of stress - he compared it to what a pilot does when he hits turbulence. My default mode is to push myself harder. I don't think that will help since there's really nothing I can do. Learning......... Or trying to.
The current plan is for Ryan to come home on Monday. Nor sure when the follow up biopsies will be done or when the next chemo will happen. Not exactly the course I was hoping for when we left Dana Farber on Tuesday.
Thanks for all the prayers.
---Barb
Thursday, June 14, 2012
Thursday, June 14
Ryan was re-admitted yesterday because his marrow showed 43% "blasts" - immature lymphocytes. The goal of the initial 32 day regimen was to bring the count way down - normal marrow has ~5% blasts. So he didn't achieve the goal of the first regimen. This puts him in a higher risk category, and means he will most likely need the marrow transplant sooner rather than later.
The MRI last night was normal - meaning there is no hematoma from the LP and his bladder dysfunction is probably temporary inflammation due to the intrathecal chemo. Since the initiation of mega-dose steroid therapy he is able to urinate today, but it's not completely normal yet.
He started the first of 4 chemo treatments given at 12 hour intervals this morning, to be followed by 3 more days of chemo with a different drug (don't know the drug names off-hand. More on that later).
I went on the 5th grade field trip to Boston today and went to the aquarium and IMAX with MeiLin. Even though the bus was full of excited and noisy kids, it was nice not to be driving that long drive. I have a neighbor whose daughter needs frequent visits to the children's hospital there - I now see how draining this trip must be for her.
Tomorrow I'll contact the transplant unit at Dana Farber and find out how they want the siblings tested. I think they said it would be by buccal swabs, which will be much easier than blood work. Two days ago, I thought the marrow transplant was a year down the road. Now it looks like I can scratch that idea.
My sense of euphoria over Ryan tolerating the first chemo so well is gone. Apparently his cancer tolerated it well, too.
Today was the girls' last full day of school. I will probably need to start taking people up on all those gracious offers to watch the girls beginning next week. The following 6 weeks they have a day camp sponsored by our town - for $120 apiece they get bussed to the camp from 9-3. Good deal or what! The following week MeiLin has a basketball camp for two hours a day, and they have some other half-day things like Chinese camp in July.
With everyone else in the family working, I will need to be at the hospital more. Sophia puts in an 8 hour day, then goes to visit Ryan. She is a real trooper. Still I worry about her being so far away from family and friends with only us in-laws for support while she deals with all this.
---Barb
The MRI last night was normal - meaning there is no hematoma from the LP and his bladder dysfunction is probably temporary inflammation due to the intrathecal chemo. Since the initiation of mega-dose steroid therapy he is able to urinate today, but it's not completely normal yet.
He started the first of 4 chemo treatments given at 12 hour intervals this morning, to be followed by 3 more days of chemo with a different drug (don't know the drug names off-hand. More on that later).
I went on the 5th grade field trip to Boston today and went to the aquarium and IMAX with MeiLin. Even though the bus was full of excited and noisy kids, it was nice not to be driving that long drive. I have a neighbor whose daughter needs frequent visits to the children's hospital there - I now see how draining this trip must be for her.
Tomorrow I'll contact the transplant unit at Dana Farber and find out how they want the siblings tested. I think they said it would be by buccal swabs, which will be much easier than blood work. Two days ago, I thought the marrow transplant was a year down the road. Now it looks like I can scratch that idea.
My sense of euphoria over Ryan tolerating the first chemo so well is gone. Apparently his cancer tolerated it well, too.
Today was the girls' last full day of school. I will probably need to start taking people up on all those gracious offers to watch the girls beginning next week. The following 6 weeks they have a day camp sponsored by our town - for $120 apiece they get bussed to the camp from 9-3. Good deal or what! The following week MeiLin has a basketball camp for two hours a day, and they have some other half-day things like Chinese camp in July.
With everyone else in the family working, I will need to be at the hospital more. Sophia puts in an 8 hour day, then goes to visit Ryan. She is a real trooper. Still I worry about her being so far away from family and friends with only us in-laws for support while she deals with all this.
---Barb
Wednesday, June 13, 2012
Wednesday June 13 - emergency admission
Just a quick note - more details in the next few days. The marrow from Monday shows incomplete remission - meaning Ryan needs more chemo ASAP. He was admitted this afternoon with the intent of getting chemo this evening. But he's had trouble emptying his bladder since his spinal tap on Monday, progressively worsening. After he was admitted he couldn't empty his bladder and had to be catheterized. Right now he's getting an MRI to see if there is a hematoma (blood collection) pressing on the nerves to the bladder. Another possibility is either inflammation or toxicity from the intrathecal chemo. The chemo is on hold until they know what needs to be done.
I committed months ago to going along on MeiLin's 5th grade trip to Boston tomorrow, and MeiLin has asked nearly every day, "Are you sure you're going to come?" After much deliberation, I've decided since there isn't much I can do here I will go on the 6 am bus trip with her. Shannon is feeling better, and she will go to be with Ryan part of the day tomorrow.
Please keep Ryan in your prayers.
---Barb
I committed months ago to going along on MeiLin's 5th grade trip to Boston tomorrow, and MeiLin has asked nearly every day, "Are you sure you're going to come?" After much deliberation, I've decided since there isn't much I can do here I will go on the 6 am bus trip with her. Shannon is feeling better, and she will go to be with Ryan part of the day tomorrow.
Please keep Ryan in your prayers.
---Barb
Tuesday, June 12: Dana Farber and more info on ALL
Up at the crack of down - little girls get themselves on the bus - Ryan and I are off to Boston. We didn't receive the patient instruction packet e-mail but we have an appointment time and a doctor's name, so we're off. Thanks to Sara Carpenter whose hubby and mom are both receiving care at Dana Farber, we know got some guidance about parking, etc.
On arrival at Dana Farber, we found a parking space deep in the garage (how deep does that thing go?!), then went to the 8th floor where we were given a itinerary for the day. Wow - these guys have their act together!! Appointments with registration, lab and physicians.
First stop: new patient registration on Floor 2. A pleasant greeter directs lost newcomers to the right area. The usual info was recorded (what, no forms to fill out?), Ryan was given a "blue card" with his patient number in bar code to bring each time we come and a bracelet for the day. He was asked to participate in a study where any extra blood, CSF or other specimens can be studied to create a databank of info for leukemia research - he agreed to participate.
Then lunch - the registration staff noted that we had 30 minutes before our lab appointment and suggested we grab lunch in the dining pavilion on the 3rd floor. The food was great. And Ryan wasn't the only baldy in town.
Off to the lab for 9 vials of blood to be drawn.
The back to the 8th floor to meet Dr. Steensma and the oncology fellow, Justin. A "fellow" is a physician who has completed medical school and residency (specialty training) and is training as a sub-specialist - in this case in oncology.
Justin came into the appointment having reviewed Ryan's records from Albany Med. He asked appropriate questions about the symptoms leading up to the diagnosis, Ryan's past medical history, how he tolerated the chemo so far, how he is feeling now. He asked whether we were there for a second opinion or to transfer. We told him we were primarily there for a second opinion and also of our concerns about going forward with an oncologist with whom we couldn't communicate.
Justin gave us an overview of leukemia and specifically of Acute Lymphocytic Leukemia, and of the standard general treatment plan. It was like coming out of darkness.
(DISCLAIMER: although I am a retired physician and I am sharing details which I think may be helpful to friends and relatives following this blog and to other patients who may read this someday, I am not by any means an expert in oncology. I hope my background will enable me to take what I am learning as a mother with a medical background and translate it into understandable terms. In my descriptions to follow I am very much paraphrasing from memory what I learned and I am not directly quoting the physicians. Any attempt to extrapolate what I say and apply it to another patient would be a mistake - medicine will change over time as more knowledge is gained, and patients need to be treated individually.)
Dr. Justin's Description of ALL:
-There is a factory in our bodies that makes blood cells: red, white & platelets
-In the factory, the cells grow and mature and are sent out to do their jobs
-Sometimes a cell will mutate into an abnormal cell that never matures but remains a teenager forever.
-This cells reproduces, making lots of teenage cells that never mature
-The teenage cells behave badly, and over run the factory, crowding out the mature cells and the red cells and platelets.
-The "induction" phase of chemo is to destroy as many of these immature cells as possible, and is usually successful in getting rid of most of them, but even though a look into the factory (the marrow biopsy) shows no more of the cells, oncologists know that there are always more hiding under the furniture or in the closet waiting to come out again later
-the "consolidation" phase of therapy is to go after those remaining hiding cells
Dr. Steensma was running behind, so we had a few hours in the exam room. After running out of reading material, I made phone calls to the insurance company to clarify the co-pay situation from yesterday. And found out that the CT scan done with the marrow biopsy hadn't been pre-certified by the oncologist's office and needed to be certified within 24 hours. Phone calls to the Albany Med radiology department, billing office, etc. Unable to get through to the oncologist's secretary whom everyone agrees is the person who needs to get the pre-cert. I swear dealing with all of the nuances of Ryan's care could be a full time job...........
Dr. Steensma arrives - asks and answers more questions. Gives us an outline - including showing us a powerpoint slide with a graphic of what lies ahead. More light on the subject!! Yesterday's discouragement vanishes as a logical and clear plan is revealed.
We learned that ALL patients fall into 3 groups:
1) Those with negative prognostic indicators - genetic markers that tell the oncologists that the cancer will be aggressive and less likely to respond to chemo. These patients will need bone marrow transplantation earlier because it will be harder to suppress their cancer with chemo. Ryan is not in this group.
2) Those with positive prognostic indicators - genetic makers that tell oncologists that they are likely to get a "cure" (or prolonged remission) with chemo alone. Ryan is not in this group.
3) Those with neither negative nor positive prognostic indicators - the larger group in which Ryan's tumor falls. These patients will respond to chemo, but often have relapses - this group has an overall 50% chance of a "cure". They may or may not benefit from Bone Marrow transplant. The medical jury is out as to whether these patients should undergo transplant. There are significant risks inherent in transplantation. Yet many of the patients do receive marrow transplants after completion of their consolidation chemo.
Brief Overview of Management of Acute Lymphocytic Leukemia:
1) Induction Chemotherapy: Intensive multi-drug chemo regimen for a month designed to kill of the bulk of the leukemia cells. Month 1. Usually requires hospitalization. Check! We've completed this step.
2) Consolidation I : divided in IA, IB & IC - designed to "mop up" the straggler cancer cells and put patient into prolonged remissions. Some of this is in-patient and some out-patients. Months 2-6.
3) Central Nervous System (CNS) Treatment: Follows Consolidation I and includes intrathecal chemo (injected by spinal tap into the cerebrospinal fluid) and radiation of the brain and spinal cord. This is designed to minimize the risk of cancer recurrences in the CNS - the brain and spinal cord - tissues which aren't treated adequately with IV or oral chemo agents since they can't cross the blood-brain barrier, a natural protective mechanism which prevents many substances from getting into the brain - essentially the brain's "firewall". White cells can cross the BBB because nature needs to be able to send in WBCs to fight infection, etc. So cancer cells can cross the BBB and grow in the brain unaffected by the barrage of chemo reaching the rest of the body. ~Month 7.
4) Consolidation II - More chemo. A few more months, roughly months 8-12. After this step marrow transplant may be considered in Ryan's case. So his siblings will get tested through Dana Farber's Transplant Service. As it looks right now, they have about a year before one of them may be called on for actual donation.
5) Maintenance Chemo. Long term oral with some intermittent IV treatments for 2 years. Designed to prevent relapse.
Whew..........
That's a LOT of treatment. And a lot of time. As Dr. Steensma concluded his description, he looked at Ryan and said that he knew it was a lot to face. Ryan just shrugged and said, "It sucks." We all kinda of chuckled and agreed that that's the bottom line. Ryan's ready to tackle it, and we once again feel like we have the leadership it will take to get this done.
We got the name of a local oncologist who has worked with the Dana Farber leukemia team. My mission for tomorrow is to get an appointment with him. Lots of prayers that he will accept Ryan as a patient. Barring that, I'll make the drive to Boston as often as I need to in order to get what Ryan needs. Much more convenient to do it locally. But we'll do whatever we need to do.
And we feel blessed to have health insurance (however confusing it may be to sort it all out sometimes) which covers all this, including mileage to Dana Farber, meals for the trips, parking expenses, etc.
What a roller coaster. I am beginning to realize how much this will need my time and support, and how much I will need to organize my home and family so that everyone gets what they need.
Ryan is frustrated at his weakness and lack of stamina. He'd really like to exercise and get his strength back but we're both slowly coming to the realization that although he needs to try to maintain his muscle tone, this is not the time to be doing much cardio, etc. He will need to let his body put all its energy into healing and surviving the chemo. We will all need to focus on getting enough rest and nutrition. And we're all learning that what seemed important 2 months ago is quite trivial now. We're adapting to new living arrangements, new "normal", new levels of love and acceptance.
Today's trip gave us a new dose of reality, yet at the same time the understanding of what lies ahead enables us to feel some sense of control (as if there really is any). And the professionalism and compassion of those in charge has given us renewed hope and comfort.
Realizing that ultimately God is in charge gives us hope as well. We are learning to heed the promptings. Ryan and I have both been concerned for several weeks about the assigned outpatient physician. And in the past 24 hours, the Lord has not only confirmed to us that those feelings were correct, but has given us another path.
We're preparing for the next battle in Ryan's war. When we started this blog, a friend suggested the title - and although I liked it, somehow "Private" Ryan didn't seem to fit. In my mind, I didn't want to trivialize the horrors of D-Day and what was suffered there. But I keep finding so many parallels: "D"iagnosis Day, 50% chance of long-term survival, the prospect of more battles if you survive the last one, etc.
I'm just a spectator. Ryan has to face all this fear, pain, discomfort and uncertainty armed with nothing but our collective love and his faith. I want to scream and kick and more. Ryan is calm and patient and faithful and brave. How proud I am of him.
---Barb
On arrival at Dana Farber, we found a parking space deep in the garage (how deep does that thing go?!), then went to the 8th floor where we were given a itinerary for the day. Wow - these guys have their act together!! Appointments with registration, lab and physicians.
First stop: new patient registration on Floor 2. A pleasant greeter directs lost newcomers to the right area. The usual info was recorded (what, no forms to fill out?), Ryan was given a "blue card" with his patient number in bar code to bring each time we come and a bracelet for the day. He was asked to participate in a study where any extra blood, CSF or other specimens can be studied to create a databank of info for leukemia research - he agreed to participate.
Then lunch - the registration staff noted that we had 30 minutes before our lab appointment and suggested we grab lunch in the dining pavilion on the 3rd floor. The food was great. And Ryan wasn't the only baldy in town.
Off to the lab for 9 vials of blood to be drawn.
The back to the 8th floor to meet Dr. Steensma and the oncology fellow, Justin. A "fellow" is a physician who has completed medical school and residency (specialty training) and is training as a sub-specialist - in this case in oncology.
Justin came into the appointment having reviewed Ryan's records from Albany Med. He asked appropriate questions about the symptoms leading up to the diagnosis, Ryan's past medical history, how he tolerated the chemo so far, how he is feeling now. He asked whether we were there for a second opinion or to transfer. We told him we were primarily there for a second opinion and also of our concerns about going forward with an oncologist with whom we couldn't communicate.
Justin gave us an overview of leukemia and specifically of Acute Lymphocytic Leukemia, and of the standard general treatment plan. It was like coming out of darkness.
(DISCLAIMER: although I am a retired physician and I am sharing details which I think may be helpful to friends and relatives following this blog and to other patients who may read this someday, I am not by any means an expert in oncology. I hope my background will enable me to take what I am learning as a mother with a medical background and translate it into understandable terms. In my descriptions to follow I am very much paraphrasing from memory what I learned and I am not directly quoting the physicians. Any attempt to extrapolate what I say and apply it to another patient would be a mistake - medicine will change over time as more knowledge is gained, and patients need to be treated individually.)
Dr. Justin's Description of ALL:
-There is a factory in our bodies that makes blood cells: red, white & platelets
-In the factory, the cells grow and mature and are sent out to do their jobs
-Sometimes a cell will mutate into an abnormal cell that never matures but remains a teenager forever.
-This cells reproduces, making lots of teenage cells that never mature
-The teenage cells behave badly, and over run the factory, crowding out the mature cells and the red cells and platelets.
-The "induction" phase of chemo is to destroy as many of these immature cells as possible, and is usually successful in getting rid of most of them, but even though a look into the factory (the marrow biopsy) shows no more of the cells, oncologists know that there are always more hiding under the furniture or in the closet waiting to come out again later
-the "consolidation" phase of therapy is to go after those remaining hiding cells
Dr. Steensma was running behind, so we had a few hours in the exam room. After running out of reading material, I made phone calls to the insurance company to clarify the co-pay situation from yesterday. And found out that the CT scan done with the marrow biopsy hadn't been pre-certified by the oncologist's office and needed to be certified within 24 hours. Phone calls to the Albany Med radiology department, billing office, etc. Unable to get through to the oncologist's secretary whom everyone agrees is the person who needs to get the pre-cert. I swear dealing with all of the nuances of Ryan's care could be a full time job...........
Dr. Steensma arrives - asks and answers more questions. Gives us an outline - including showing us a powerpoint slide with a graphic of what lies ahead. More light on the subject!! Yesterday's discouragement vanishes as a logical and clear plan is revealed.
We learned that ALL patients fall into 3 groups:
1) Those with negative prognostic indicators - genetic markers that tell the oncologists that the cancer will be aggressive and less likely to respond to chemo. These patients will need bone marrow transplantation earlier because it will be harder to suppress their cancer with chemo. Ryan is not in this group.
2) Those with positive prognostic indicators - genetic makers that tell oncologists that they are likely to get a "cure" (or prolonged remission) with chemo alone. Ryan is not in this group.
3) Those with neither negative nor positive prognostic indicators - the larger group in which Ryan's tumor falls. These patients will respond to chemo, but often have relapses - this group has an overall 50% chance of a "cure". They may or may not benefit from Bone Marrow transplant. The medical jury is out as to whether these patients should undergo transplant. There are significant risks inherent in transplantation. Yet many of the patients do receive marrow transplants after completion of their consolidation chemo.
Brief Overview of Management of Acute Lymphocytic Leukemia:
1) Induction Chemotherapy: Intensive multi-drug chemo regimen for a month designed to kill of the bulk of the leukemia cells. Month 1. Usually requires hospitalization. Check! We've completed this step.
2) Consolidation I : divided in IA, IB & IC - designed to "mop up" the straggler cancer cells and put patient into prolonged remissions. Some of this is in-patient and some out-patients. Months 2-6.
3) Central Nervous System (CNS) Treatment: Follows Consolidation I and includes intrathecal chemo (injected by spinal tap into the cerebrospinal fluid) and radiation of the brain and spinal cord. This is designed to minimize the risk of cancer recurrences in the CNS - the brain and spinal cord - tissues which aren't treated adequately with IV or oral chemo agents since they can't cross the blood-brain barrier, a natural protective mechanism which prevents many substances from getting into the brain - essentially the brain's "firewall". White cells can cross the BBB because nature needs to be able to send in WBCs to fight infection, etc. So cancer cells can cross the BBB and grow in the brain unaffected by the barrage of chemo reaching the rest of the body. ~Month 7.
4) Consolidation II - More chemo. A few more months, roughly months 8-12. After this step marrow transplant may be considered in Ryan's case. So his siblings will get tested through Dana Farber's Transplant Service. As it looks right now, they have about a year before one of them may be called on for actual donation.
5) Maintenance Chemo. Long term oral with some intermittent IV treatments for 2 years. Designed to prevent relapse.
Whew..........
That's a LOT of treatment. And a lot of time. As Dr. Steensma concluded his description, he looked at Ryan and said that he knew it was a lot to face. Ryan just shrugged and said, "It sucks." We all kinda of chuckled and agreed that that's the bottom line. Ryan's ready to tackle it, and we once again feel like we have the leadership it will take to get this done.
We got the name of a local oncologist who has worked with the Dana Farber leukemia team. My mission for tomorrow is to get an appointment with him. Lots of prayers that he will accept Ryan as a patient. Barring that, I'll make the drive to Boston as often as I need to in order to get what Ryan needs. Much more convenient to do it locally. But we'll do whatever we need to do.
And we feel blessed to have health insurance (however confusing it may be to sort it all out sometimes) which covers all this, including mileage to Dana Farber, meals for the trips, parking expenses, etc.
What a roller coaster. I am beginning to realize how much this will need my time and support, and how much I will need to organize my home and family so that everyone gets what they need.
Ryan is frustrated at his weakness and lack of stamina. He'd really like to exercise and get his strength back but we're both slowly coming to the realization that although he needs to try to maintain his muscle tone, this is not the time to be doing much cardio, etc. He will need to let his body put all its energy into healing and surviving the chemo. We will all need to focus on getting enough rest and nutrition. And we're all learning that what seemed important 2 months ago is quite trivial now. We're adapting to new living arrangements, new "normal", new levels of love and acceptance.
Today's trip gave us a new dose of reality, yet at the same time the understanding of what lies ahead enables us to feel some sense of control (as if there really is any). And the professionalism and compassion of those in charge has given us renewed hope and comfort.
Realizing that ultimately God is in charge gives us hope as well. We are learning to heed the promptings. Ryan and I have both been concerned for several weeks about the assigned outpatient physician. And in the past 24 hours, the Lord has not only confirmed to us that those feelings were correct, but has given us another path.
We're preparing for the next battle in Ryan's war. When we started this blog, a friend suggested the title - and although I liked it, somehow "Private" Ryan didn't seem to fit. In my mind, I didn't want to trivialize the horrors of D-Day and what was suffered there. But I keep finding so many parallels: "D"iagnosis Day, 50% chance of long-term survival, the prospect of more battles if you survive the last one, etc.
I'm just a spectator. Ryan has to face all this fear, pain, discomfort and uncertainty armed with nothing but our collective love and his faith. I want to scream and kick and more. Ryan is calm and patient and faithful and brave. How proud I am of him.
---Barb
Day 35 - Monday, June 11
Ryan had his spinal tap with more intrathecal vincristine and his final bone marrow biopsy of the "induction" phase (explantion of this term later in tomorrow's post). All went well with the procedures, but no communication with his assigned oncologist. Dr. Rauch did the chemo injection and asked when he was scheduled to see the other oncologist - he was surprised and seemed a bit dismayed that we had had no contact with the other physician and no scheduled follow up. All the tests since discharge got scheduled because of our pushing for them rather that because a physician was directing his care.
Since Ryan had such a severe spinal headache after the last LP (lumbar puncture) and had no pain meds left, I called the office to ask for a prescription for pain meds and refills on his antibiotic and antifungal meds which Dr. Rauch said he should continue. The response from the nurse was that since he hadn't been seen in the office she doubted she could get a prescription for him. And it was 45 minutes until the office was to close. The Mama Bear in me rose to the surface and I headed out of the recovery room to deal with this in person. Saved by the bell - by the time I got to the other end of the hospital (a brisk hike), the nurse called back to say she had the prescriptions but I needed to pick them up soon before the office closed at 5. Good thing since it would probably have been pretty ugly given how frustrated I was.
Ryan and I both came to the conclusion that we need to change outpatient oncologists ASAP.
More frustration earlier when the hospital charged a co-pay for a procedure that doesn't require a co-pay and my call to the insurance company got bounced back and forth between the Blue Cross portion (in-patient services) and the Cancer Resource Center (covers care at designated "centers of excellence").
The good news of the day was that Dana Farber called with an appointment for Ryan to be seen there on Tuesday. Wouldn't you know I missed their first two calls because I was tied up on calls to the insurance company! They apologized for the short notice, but I jumped at the opportunity.
Tim was away in Malone for some meetings he couldn't miss and Sophia had to work, but Ryan and I desperately needed to be seen by a physician who could tell us what is going on. I called to tell Tim what was going on, and he was frustrated that I was talking too fast, etc. I was frustrated that he wasn't coming back to go to Boston with us since inevitably there will be questions he has that I don't think to ask. Yet I understand that the whole world can't stop because of Ryan's illness and that Tim has responsibilities beyond home & hearth.
Shannon had a miserable day - her throat is still very sore and she can only speak in a whisper. And her poor cat is so traumatized by the change in environment that it won't let her sleep at night. So with Tim out of town, I went to bed with two insecure little girls in sleeping bags on my floor and Shannon sharing my bed and the cat closed in a nearby bedroom crying away.
Road trip tomorrow.
---Barb
Since Ryan had such a severe spinal headache after the last LP (lumbar puncture) and had no pain meds left, I called the office to ask for a prescription for pain meds and refills on his antibiotic and antifungal meds which Dr. Rauch said he should continue. The response from the nurse was that since he hadn't been seen in the office she doubted she could get a prescription for him. And it was 45 minutes until the office was to close. The Mama Bear in me rose to the surface and I headed out of the recovery room to deal with this in person. Saved by the bell - by the time I got to the other end of the hospital (a brisk hike), the nurse called back to say she had the prescriptions but I needed to pick them up soon before the office closed at 5. Good thing since it would probably have been pretty ugly given how frustrated I was.
Ryan and I both came to the conclusion that we need to change outpatient oncologists ASAP.
More frustration earlier when the hospital charged a co-pay for a procedure that doesn't require a co-pay and my call to the insurance company got bounced back and forth between the Blue Cross portion (in-patient services) and the Cancer Resource Center (covers care at designated "centers of excellence").
The good news of the day was that Dana Farber called with an appointment for Ryan to be seen there on Tuesday. Wouldn't you know I missed their first two calls because I was tied up on calls to the insurance company! They apologized for the short notice, but I jumped at the opportunity.
Tim was away in Malone for some meetings he couldn't miss and Sophia had to work, but Ryan and I desperately needed to be seen by a physician who could tell us what is going on. I called to tell Tim what was going on, and he was frustrated that I was talking too fast, etc. I was frustrated that he wasn't coming back to go to Boston with us since inevitably there will be questions he has that I don't think to ask. Yet I understand that the whole world can't stop because of Ryan's illness and that Tim has responsibilities beyond home & hearth.
Shannon had a miserable day - her throat is still very sore and she can only speak in a whisper. And her poor cat is so traumatized by the change in environment that it won't let her sleep at night. So with Tim out of town, I went to bed with two insecure little girls in sleeping bags on my floor and Shannon sharing my bed and the cat closed in a nearby bedroom crying away.
Road trip tomorrow.
---Barb
Sunday, June 10, 2012
Day 34 - Sunday, June 10
We're kind of in a lull on Ryan's care. He has a spinal tap with more intrathecal chemo tomorrow, then a bone marrow. Then we wait for the results and the decision about which chemo is next.
Ryan got a "spinal headache" after his last spinal tap. The needles used for spinal taps are quite small, and his are done under fluoroscopy (video X-ray) to increase the probability of getting through the "dura" (a tough membrane which holds encases the brain and spinal cord and cerebrospinal fluid) into the spinal fluid space on the first pass with the needle since he will need to have lots of them. Even with the small needles, patients need to lie flat for at least an hour after the tap to allow the tiny hole to close. If you can picture a tube of water with a tiny hole at the bottom of the tube, you can envision how the weight of the column of fluid causes the water to leak out. Lying flat for a while allows the hole to close.
Even though he did stay flat for an hour last time, he got a spinal headache - a headache caused by decreased cerebrospinal fluid (CSF). The treatment is to rest and hydrate. In cases of severe headaches, they can do a "blood patch" - where they put a slightly larger needle into the area outside the dura and inject some of the patient's own blood; the blood clots and seals off the hole in the dura. But the risk is that the larger needle could make a bigger hole.....
So the decision was to do nothing and treat his headaches with pain meds. The H/A's are better in the morning, but by early afternoon they get pretty severe. And Ryan is so happy to be out of the hospital he wants to be up and going. So he has been needing daily pain meds by early afternoon. Today it's quite a bit better, but still there. And tomorrow there's another spinal tap, followed by a bone marrow biopsy. I'll need to have them leave him on the gurney between procedures to see if we can minimize the likelihood of a spinal headache. The vincristine chemo will be put into the CSF, and that also causes headaches.
He has been sleeping better the past few nights. His spirits remain good.
He had CBCs (complete blood counts) on last Wednesday and Friday which show a steady increase in his neutrophils - the main infection-fighting WBCs. He was told he can go out in public without a mask. After much consideration, he decided to go to Sacrament meeting in church today. We had Tim and Sophia save seats in the front corner and slipped in late to avoid being in the crowded halls or near potentially infectious children.
Steak on the grill was a highlight of Ryan's day - one of the few things he wanted us to fix when he came home from school. It was scheduled for dinner on May 7th - Ryan's D-Day (Diagnosis Day), but didn't happen for obvious reasons.
Shannon is doing pretty well after her tonsillectomy in NYC on Friday. Still speaks in a whisper, but the pain and nausea are subsiding.
Her procedure was scheduled for noon. I went to her apartment in NJ to pick up her luggage, cat, litter box and cat carrier. "Tofu" wasn't happy that I crammed her into her carrier. I was stuck in traffic for close to 2 hours (2:30 pm on Friday) just going the one mile from the apartment to the Lincoln Tunnel, with the cat drying the whole time. Finally got into the city and the traffic was fairly light. By then the recovery room had called twice to say the Shannon was ready to leave. I called them back to recommend she empty her bladder (after lots of IV fluids) before we started our drive in case I got stuck in traffic again, and asked that they give her extra anti-nausea meds since she tends to get car sick on a good day, much less after anesthesia.
Once Shannon got in the car, we let the cat out of her carrier. She was getting hoarse from 2 hours of continual crying. Shannon did well on the drive, and we got home a little after 10 pm. The cat has been in hiding ever since, too traumatized by the carrier, the drive and the dog.....
A pet mouse escaped during the weekly cage cleaning today, and took a while to capture. Darn thing is quick on her feet! Should have just gotten the cat......but she was in hiding. Where's a mouser when you need one?
Sophia is adjusting to being a working girl. She's fixed up their room look very nice. Ryan fixed her lunch on Friday and she cam home during her lunch break. We're so proud of her. Ryan really misses having her around all day.
Kaia's dance recital was on Saturday - and we really enjoyed the show. Afterward we went out to eat with just Tim and I and Kaia. It's rare for her to get alone time with Mom & Dad. And today she gave a talk on tithing in Primary (the children's Sunday School class).
MeiLin went to a basketball tournament in CT and rode with another mom who graciously volunteered to take her along on the overnight trip. She had a great time, and returned tired today just in time to go to church with Ryan and I.
We skype'd Sean & Shauna today. HAPPY BELATED BIRTHDAY, SEAN!!!! 31 YEARS OLD!!!!
We're recognizing the challenges of being the donor from overseas. He will be saving his time off so he can travel here for the donation if he's the donor. Emergency leave is officially only allowed for parents, spouse or child of the employee - much like the military. Although he's pretty sure his supervisor will allow him to leave, the timing can be problematic if other people are already on leave, etc. We'll just hope that if Sean is the donor, God will have a plan for all the logistics.
As for me - a relaxing day yesterday, and a nap today. Enjoying the peaceful moments when they come!
---Barb
Ryan got a "spinal headache" after his last spinal tap. The needles used for spinal taps are quite small, and his are done under fluoroscopy (video X-ray) to increase the probability of getting through the "dura" (a tough membrane which holds encases the brain and spinal cord and cerebrospinal fluid) into the spinal fluid space on the first pass with the needle since he will need to have lots of them. Even with the small needles, patients need to lie flat for at least an hour after the tap to allow the tiny hole to close. If you can picture a tube of water with a tiny hole at the bottom of the tube, you can envision how the weight of the column of fluid causes the water to leak out. Lying flat for a while allows the hole to close.
Even though he did stay flat for an hour last time, he got a spinal headache - a headache caused by decreased cerebrospinal fluid (CSF). The treatment is to rest and hydrate. In cases of severe headaches, they can do a "blood patch" - where they put a slightly larger needle into the area outside the dura and inject some of the patient's own blood; the blood clots and seals off the hole in the dura. But the risk is that the larger needle could make a bigger hole.....
So the decision was to do nothing and treat his headaches with pain meds. The H/A's are better in the morning, but by early afternoon they get pretty severe. And Ryan is so happy to be out of the hospital he wants to be up and going. So he has been needing daily pain meds by early afternoon. Today it's quite a bit better, but still there. And tomorrow there's another spinal tap, followed by a bone marrow biopsy. I'll need to have them leave him on the gurney between procedures to see if we can minimize the likelihood of a spinal headache. The vincristine chemo will be put into the CSF, and that also causes headaches.
He has been sleeping better the past few nights. His spirits remain good.
He had CBCs (complete blood counts) on last Wednesday and Friday which show a steady increase in his neutrophils - the main infection-fighting WBCs. He was told he can go out in public without a mask. After much consideration, he decided to go to Sacrament meeting in church today. We had Tim and Sophia save seats in the front corner and slipped in late to avoid being in the crowded halls or near potentially infectious children.
Steak on the grill was a highlight of Ryan's day - one of the few things he wanted us to fix when he came home from school. It was scheduled for dinner on May 7th - Ryan's D-Day (Diagnosis Day), but didn't happen for obvious reasons.
Shannon is doing pretty well after her tonsillectomy in NYC on Friday. Still speaks in a whisper, but the pain and nausea are subsiding.
Her procedure was scheduled for noon. I went to her apartment in NJ to pick up her luggage, cat, litter box and cat carrier. "Tofu" wasn't happy that I crammed her into her carrier. I was stuck in traffic for close to 2 hours (2:30 pm on Friday) just going the one mile from the apartment to the Lincoln Tunnel, with the cat drying the whole time. Finally got into the city and the traffic was fairly light. By then the recovery room had called twice to say the Shannon was ready to leave. I called them back to recommend she empty her bladder (after lots of IV fluids) before we started our drive in case I got stuck in traffic again, and asked that they give her extra anti-nausea meds since she tends to get car sick on a good day, much less after anesthesia.
Once Shannon got in the car, we let the cat out of her carrier. She was getting hoarse from 2 hours of continual crying. Shannon did well on the drive, and we got home a little after 10 pm. The cat has been in hiding ever since, too traumatized by the carrier, the drive and the dog.....
A pet mouse escaped during the weekly cage cleaning today, and took a while to capture. Darn thing is quick on her feet! Should have just gotten the cat......but she was in hiding. Where's a mouser when you need one?
Sophia is adjusting to being a working girl. She's fixed up their room look very nice. Ryan fixed her lunch on Friday and she cam home during her lunch break. We're so proud of her. Ryan really misses having her around all day.
Kaia's dance recital was on Saturday - and we really enjoyed the show. Afterward we went out to eat with just Tim and I and Kaia. It's rare for her to get alone time with Mom & Dad. And today she gave a talk on tithing in Primary (the children's Sunday School class).
MeiLin went to a basketball tournament in CT and rode with another mom who graciously volunteered to take her along on the overnight trip. She had a great time, and returned tired today just in time to go to church with Ryan and I.
We skype'd Sean & Shauna today. HAPPY BELATED BIRTHDAY, SEAN!!!! 31 YEARS OLD!!!!
We're recognizing the challenges of being the donor from overseas. He will be saving his time off so he can travel here for the donation if he's the donor. Emergency leave is officially only allowed for parents, spouse or child of the employee - much like the military. Although he's pretty sure his supervisor will allow him to leave, the timing can be problematic if other people are already on leave, etc. We'll just hope that if Sean is the donor, God will have a plan for all the logistics.
As for me - a relaxing day yesterday, and a nap today. Enjoying the peaceful moments when they come!
---Barb
Thursday, June 7, 2012
June 7, 2012 - Once month post diagnosis
One month ago today, we got the sucker punch that has Ryan fighting for his life. A lot has happened.
Ryan has been home for 3 days, and is relaxing a little bit. He still has the severe headaches, and isn't sleeping well. But he has a constant grin on his face. He tires quickly but is still determined to be up and doing all the time.
Yesterday he had a CBC - his WBC is 2.8 (2800), with 2500 healthy "PMNs", the infection-fighting cells. So he can go out in public. His hemoglobin is up to 10 - woohoo!! Normal is 12, but we'll take it! And his platelets are now in normal range.
He has a follow-up CBC tomorrow, and a spinal tap with more intrathecal chemo on Monday. And a bone marrow biopsy sometime next week.
Sophia had an interview yesterday and landed the job! She will be a receptionist for a law office that handles intellectual property, copyright & patent cases. She looked like a million bucks dressed professionally for the interview - even though she was on pins and needles. Last week she wrote a very professional resume.
So this morning Sophia was up at the crack of dawn and off to work. And Tim is off to an overnight business trip in the North Country - way upstate NY.
Ryan & Sophia's car is a 1973 Toyota Camry with over 280,000 miles (but on it's second engine). It drives well, but the A/C doesn't work, and the roof leaks. So the interior smells of mildew.
Fungal infections can be quite difficult to fight in immuno-compromised people. They need a reliable car to get Sophia to & from work - and one without spores that could endanger Ryan. Our dear friend Fran's brother Ned was a car salesman for many years and is very knowledgeable about cars. So he is going to take Ryan out with him today to find a good car.
Then there are all the financial concerns - student loan payments, etc. We found out that Ryan is eligible for SSI since he is disabled. So he will apply for that and contact the lenders to postpone the payments which would normally come due when you leave school. Our real blessing is that the health insurance coverage is excellent. No co-pays with this diagnosis.
School is winding down for MeiLin & Kaia. End of year picnics, field days, etc. They will probably miss the last few days of school to fly out and spend a few days with Missy and Meghan in AZ. Then a busy summer of basketball & chinese camps. And maybe a tennis camp for Kaia.
MeiLin is off to CT for a BB tournament this weekend. One of the other moms on the team graciously volunteered to take her. Shannon is having her tonsils out tomorrow in NYC. I will drive down to pick her (and her cat, "Tofu") up so she can recuperate at home for the next week.
So we're settling into a routine with 4 adults and 2 kids sharing the house. Shower times & hot water. Shared cooking. Shared dishes. More drivers for kids activities. Different, but rremarkably comfortable. Feels like all my chicks are safe...........for the moment.
---Barb
Ryan has been home for 3 days, and is relaxing a little bit. He still has the severe headaches, and isn't sleeping well. But he has a constant grin on his face. He tires quickly but is still determined to be up and doing all the time.
Yesterday he had a CBC - his WBC is 2.8 (2800), with 2500 healthy "PMNs", the infection-fighting cells. So he can go out in public. His hemoglobin is up to 10 - woohoo!! Normal is 12, but we'll take it! And his platelets are now in normal range.
He has a follow-up CBC tomorrow, and a spinal tap with more intrathecal chemo on Monday. And a bone marrow biopsy sometime next week.
Sophia had an interview yesterday and landed the job! She will be a receptionist for a law office that handles intellectual property, copyright & patent cases. She looked like a million bucks dressed professionally for the interview - even though she was on pins and needles. Last week she wrote a very professional resume.
So this morning Sophia was up at the crack of dawn and off to work. And Tim is off to an overnight business trip in the North Country - way upstate NY.
Ryan & Sophia's car is a 1973 Toyota Camry with over 280,000 miles (but on it's second engine). It drives well, but the A/C doesn't work, and the roof leaks. So the interior smells of mildew.
Fungal infections can be quite difficult to fight in immuno-compromised people. They need a reliable car to get Sophia to & from work - and one without spores that could endanger Ryan. Our dear friend Fran's brother Ned was a car salesman for many years and is very knowledgeable about cars. So he is going to take Ryan out with him today to find a good car.
Then there are all the financial concerns - student loan payments, etc. We found out that Ryan is eligible for SSI since he is disabled. So he will apply for that and contact the lenders to postpone the payments which would normally come due when you leave school. Our real blessing is that the health insurance coverage is excellent. No co-pays with this diagnosis.
School is winding down for MeiLin & Kaia. End of year picnics, field days, etc. They will probably miss the last few days of school to fly out and spend a few days with Missy and Meghan in AZ. Then a busy summer of basketball & chinese camps. And maybe a tennis camp for Kaia.
MeiLin is off to CT for a BB tournament this weekend. One of the other moms on the team graciously volunteered to take her. Shannon is having her tonsils out tomorrow in NYC. I will drive down to pick her (and her cat, "Tofu") up so she can recuperate at home for the next week.
So we're settling into a routine with 4 adults and 2 kids sharing the house. Shower times & hot water. Shared cooking. Shared dishes. More drivers for kids activities. Different, but rremarkably comfortable. Feels like all my chicks are safe...........for the moment.
---Barb
Tuesday, June 5, 2012
Saturday, June 2, 2012
Day 27 - Saturday, June 2nd
I'm beginning to get a bit self-conscious about this blog. So many of you call after I have a whiny day. But simply putting it on paper at the end of each day is quite therapeutic - kind of like de-fragging my brain. And if another mother wants to read about our journey, like I have been privileged to read about others', a sanitized version would be a disservice. So I'll keep it real - complete with my little rants as well as the many tender mercies we experience along the way.
This morning all of us went to the Saratoga Sparks - sponsored basketball tournament. MeiLin plays on a Sparks basketball team for 5th graders. At the beginning of the year, she could barely dribble or shoot, much less understand the nuances of the game. But the coaches must have seen something in her during try-outs, because she made the team. After the first game, she told me disapprovingly that those girls on the other team just took the ball away from people when they were dribbling. She had a lot to learn. The coaches, girls and their families have been wonderfully welcoming to us as newcomers to the organization.
Sophia and I worked concessions this morning, and Tim worked the clock for games for most of the day. It was great to feel normal for a change. The biggest trauma of the day was when MeiLin was in the game immediately after half-time and didn't realize the teams had changed baskets. She got the ball and headed the wrong way - much to her embarrassment - and dissolved into tears on the bench. She was put back in at the end of the half, and "caught and shot" a pass and got her first field goal of the season. After she walked off the court she again dissolved into tears when she reached me and was hard to console. I reassured her that LOTS of players have done that at least once. She didn't believe me. But a meal at McD's and her dad's tale of his similar trip the wrong way down the court in HS which resulted in 2 points for the other team cheered her up!
Tim stayed to run the clock, and Sophia and I headed to the hospital. Ryan had celebrated the birthday of another leukemia patient with a pizza party, so he had no food request today (quick - check his temperature!!!). Or so we thought. The rest of the story is that his friend Nathan brought him a burrito from Rocket's on Lark Street which he rather enjoyed.
He took off his hat while we were there - actually looks quite handsome bald if you ask me. Gotta do something about the stubborn patchy remnants of brown hair in the back. Looks a bit mangy. But we can't shave his right now because of the risk of nicks & infection.
Ryan got a chance to talk with Dr. Rauch this morning and was able to share his concerns. He felt that they had a good conversation and is much more comfortable with future care plans. And hopeful that he will be able to come home sometime next week.
We're talking about changes of habits we'll need to make to protect Ryan once he gets home. No more drinking out of bottles in the fridge (actually Ryan and Sean were our main offenders in that area), no licking serving utensils, etc. I'm not sure if the 4 mice are a real concern or not - but I'm tired of cleaning cages weekly with everything else I have going on. So I'm taking advantage (probably unfairly) of this opportunity to look for a new home for the mice. There're really cute....... This may be more challenging than the stuffed animals.......
Ryan was cheerful and upbeat today. Sophia is excited about a job possibility. My washer is hanging in there. MeiLin scored a basket. Kaia and I snuggled and read together. Tim enjoyed a day of BB in Saratoga, and an evening of NBA playoffs. Life is good!
---Barb
This morning all of us went to the Saratoga Sparks - sponsored basketball tournament. MeiLin plays on a Sparks basketball team for 5th graders. At the beginning of the year, she could barely dribble or shoot, much less understand the nuances of the game. But the coaches must have seen something in her during try-outs, because she made the team. After the first game, she told me disapprovingly that those girls on the other team just took the ball away from people when they were dribbling. She had a lot to learn. The coaches, girls and their families have been wonderfully welcoming to us as newcomers to the organization.
Sophia and I worked concessions this morning, and Tim worked the clock for games for most of the day. It was great to feel normal for a change. The biggest trauma of the day was when MeiLin was in the game immediately after half-time and didn't realize the teams had changed baskets. She got the ball and headed the wrong way - much to her embarrassment - and dissolved into tears on the bench. She was put back in at the end of the half, and "caught and shot" a pass and got her first field goal of the season. After she walked off the court she again dissolved into tears when she reached me and was hard to console. I reassured her that LOTS of players have done that at least once. She didn't believe me. But a meal at McD's and her dad's tale of his similar trip the wrong way down the court in HS which resulted in 2 points for the other team cheered her up!
Tim stayed to run the clock, and Sophia and I headed to the hospital. Ryan had celebrated the birthday of another leukemia patient with a pizza party, so he had no food request today (quick - check his temperature!!!). Or so we thought. The rest of the story is that his friend Nathan brought him a burrito from Rocket's on Lark Street which he rather enjoyed.
He took off his hat while we were there - actually looks quite handsome bald if you ask me. Gotta do something about the stubborn patchy remnants of brown hair in the back. Looks a bit mangy. But we can't shave his right now because of the risk of nicks & infection.
Ryan got a chance to talk with Dr. Rauch this morning and was able to share his concerns. He felt that they had a good conversation and is much more comfortable with future care plans. And hopeful that he will be able to come home sometime next week.
We're talking about changes of habits we'll need to make to protect Ryan once he gets home. No more drinking out of bottles in the fridge (actually Ryan and Sean were our main offenders in that area), no licking serving utensils, etc. I'm not sure if the 4 mice are a real concern or not - but I'm tired of cleaning cages weekly with everything else I have going on. So I'm taking advantage (probably unfairly) of this opportunity to look for a new home for the mice. There're really cute....... This may be more challenging than the stuffed animals.......
Ryan was cheerful and upbeat today. Sophia is excited about a job possibility. My washer is hanging in there. MeiLin scored a basket. Kaia and I snuggled and read together. Tim enjoyed a day of BB in Saratoga, and an evening of NBA playoffs. Life is good!
---Barb
Day 26 - Friday, June 1st
There is very little chemo for Ryan this week - mainly steroids and the tests which were done 3 days ago. The schedule ahead holds more Vincristine on Chemo Day 25 (Sunday), and a spinal tap on chemo Day 30 - a week from today. Understandably, Ryan would prefer to be out of the hospital, especially when so little is happening.
Unfortunately, he's getting confusing messages from his physicians. They rotate hospital weeks, and the doctor who was on earlier this week talked about him going home Sunday. But no "discharge planning" was taking place to prepare him to go home, so I doubted it would happen. When his regular doctor returned this evening to tell Ryan about his marrow results (as we were warned earlier, it did still contain cancer cells), Ryan asked about going home on Sunday. The doctor's preference is to keep the patients admitted for the whole 32 day regimen. Ryan was very disappointed.
Dr. Rauch is very busy - and when his is on hospital duty he is in very early and stays quite late, seeing his patients multiple times daily. He told Ryan that he would need to make arrangements for another physician to manage his care when he is discharged. Of the two other physicians Ryan has seen, one is leaving and the other barely speaks to Ryan. So my mission for Monday is to advocate for getting a physician Ryan feels comfortable with.
Lessons for physicians: *don't tell a patient he'll go home, then drop the ball *no matter how brilliant or knowledgeable you are, if you can't communicate with your patients you fall short *it's important for all members of the team to be on the same page - while you have hundreds of other things to do every day, all the hospitalized patient has to do is think, think, and think some more - hanging on your every word.
Miscommunications can be emotionally devastating for patients.
The physician part of me understands fully what is happening. There is no absolute for most decisions in medicine. That's the "art" of it. Two doctors may have different feelings about providing care on an inpatient versus outpatient basis. Neither is wrong or right - just different. But to the patients, it's day and night. As I tried to explain the different perspectives to Ryan, I realized how difficult it is for the patient.
Ryan was angry. Understandably. And a bit shaken at the possibility - no probability - that he won't have Dr. Rauch caring for him when he leaves the hospital.
And this morning I was angry. Why didn't the doctor who told him he could go home either make the arrangements or step up to the plate and tell him the had decided against it? Why did the ER doc in Utah get CTs not only of the head but also of the abdomen and pelvis when Ryan presented with a severe headache, but not get a simple blood count? Anemia is on the list of causes of headaches - and surely higher on the list at high altitudes. So he got a $1500 CT scan and not a $10 CBC? Would diagnosing this a month earlier have made a difference?
Down girl. They did the best they could. And how could I care for Ryan if he was in Utah? Just recognize that it is what it is. And support Ryan and Sophia as best you can. It doesn't help anybody if you lose it.
On a more positive note...........
A few angels from my church came by yesterday morning to help me clean out my garage. These are sisters with whom I had worked in Schoharie after the floods. I warned them that this may be a similar task! And they still came! Now I can walk in my garage, all the Christmas stuff is together, all the camping stuff is together, the grown kids souvenirs are together (awaiting the day I brutally attack each box discarding the junk and shipping the important memorabilia to each of them).
And the 2 shelving units are assembled - well almost. Except for the parts that are defective. So I need to call the company and get them to send replacement parts. Joy.
Oh, and the washer repairman (national A&E company that services Sears & Maytag) didn't show up during the 5 hour morning window but had a computer call to say he'd be arriving later - during MeiLin's Spelling Bee time. And when I called to re-schedule the jerk on the line told me I needed to re-schedule 24 hours before the scheduled time and he couldn't re-schedule me. So I "escalated" (new speak for talking to his supervisor), gave him a lecture on customer service telling him the proper response was, "I'd be happy to re-schedule that for you ma'am", and after several repetitions - each "escalating" in terseness of the tone of my voice - he said (!) "I'll be happy to re-schedule that for you ma'am" & I was able to re-schedule.
Yup - I'm in the anger phase......
"the sun'll come up tomorrow, bet your bottom dollar that tomorrow there'll be sun....."
---Barb
Unfortunately, he's getting confusing messages from his physicians. They rotate hospital weeks, and the doctor who was on earlier this week talked about him going home Sunday. But no "discharge planning" was taking place to prepare him to go home, so I doubted it would happen. When his regular doctor returned this evening to tell Ryan about his marrow results (as we were warned earlier, it did still contain cancer cells), Ryan asked about going home on Sunday. The doctor's preference is to keep the patients admitted for the whole 32 day regimen. Ryan was very disappointed.
Dr. Rauch is very busy - and when his is on hospital duty he is in very early and stays quite late, seeing his patients multiple times daily. He told Ryan that he would need to make arrangements for another physician to manage his care when he is discharged. Of the two other physicians Ryan has seen, one is leaving and the other barely speaks to Ryan. So my mission for Monday is to advocate for getting a physician Ryan feels comfortable with.
Lessons for physicians: *don't tell a patient he'll go home, then drop the ball *no matter how brilliant or knowledgeable you are, if you can't communicate with your patients you fall short *it's important for all members of the team to be on the same page - while you have hundreds of other things to do every day, all the hospitalized patient has to do is think, think, and think some more - hanging on your every word.
Miscommunications can be emotionally devastating for patients.
The physician part of me understands fully what is happening. There is no absolute for most decisions in medicine. That's the "art" of it. Two doctors may have different feelings about providing care on an inpatient versus outpatient basis. Neither is wrong or right - just different. But to the patients, it's day and night. As I tried to explain the different perspectives to Ryan, I realized how difficult it is for the patient.
Ryan was angry. Understandably. And a bit shaken at the possibility - no probability - that he won't have Dr. Rauch caring for him when he leaves the hospital.
And this morning I was angry. Why didn't the doctor who told him he could go home either make the arrangements or step up to the plate and tell him the had decided against it? Why did the ER doc in Utah get CTs not only of the head but also of the abdomen and pelvis when Ryan presented with a severe headache, but not get a simple blood count? Anemia is on the list of causes of headaches - and surely higher on the list at high altitudes. So he got a $1500 CT scan and not a $10 CBC? Would diagnosing this a month earlier have made a difference?
Down girl. They did the best they could. And how could I care for Ryan if he was in Utah? Just recognize that it is what it is. And support Ryan and Sophia as best you can. It doesn't help anybody if you lose it.
On a more positive note...........
A few angels from my church came by yesterday morning to help me clean out my garage. These are sisters with whom I had worked in Schoharie after the floods. I warned them that this may be a similar task! And they still came! Now I can walk in my garage, all the Christmas stuff is together, all the camping stuff is together, the grown kids souvenirs are together (awaiting the day I brutally attack each box discarding the junk and shipping the important memorabilia to each of them).
And the 2 shelving units are assembled - well almost. Except for the parts that are defective. So I need to call the company and get them to send replacement parts. Joy.
Oh, and the washer repairman (national A&E company that services Sears & Maytag) didn't show up during the 5 hour morning window but had a computer call to say he'd be arriving later - during MeiLin's Spelling Bee time. And when I called to re-schedule the jerk on the line told me I needed to re-schedule 24 hours before the scheduled time and he couldn't re-schedule me. So I "escalated" (new speak for talking to his supervisor), gave him a lecture on customer service telling him the proper response was, "I'd be happy to re-schedule that for you ma'am", and after several repetitions - each "escalating" in terseness of the tone of my voice - he said (!) "I'll be happy to re-schedule that for you ma'am" & I was able to re-schedule.
Yup - I'm in the anger phase......
"the sun'll come up tomorrow, bet your bottom dollar that tomorrow there'll be sun....."
---Barb
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