It is Easter Sunday and we are still with Cherilyn, Todd and little Phoenix.
Last Sunday, with Chaunda, we decorated the house for their home-coming, streamers, balloons, flowers and Congratulations banners. When we all came home around 8:30 in the evening; they were happily surprised and pleased at our efforts. Then the fun began. Cherilyn and Todd were exhausted, having had very little sleep at the hospital, and Phoenix had quite a time learning to breast feed, so there was lots of newborn crying. The lactation nurses characterized him as a 0-60 baby, meaning he can go from contented to extremely frustrated very quickly. The first 2 days and nights at home were a real challenge for both of them, and I did a little night duty trying to spare Cherilyn and Todd as much as possible. Of course, that is not a lot when baby needs to be nursed.
Cher and Todd had an appointment with a lactation specialist on Tues, and received more pointers on getting a newborn to latch on well, and by Wednesday, things had begun to turn around with Phoenix doing much better with his nursing and Mommy getting a little more rest between feedings. It has been such a joy being a part of all this with Leland feeling well enough to participate in being the happy grandpa.
Todd did the sweetest thing (among many!). He brought a laundry basket to Cherilyn filled with clean baby clothes and asked her to find an item for him. One layer down was a plaque with loving words accompanied by a little black box containing a lovely necklace to match her wedding ring, a green aqua-marine surrounded by little diamonds-a thank you gift from him for their precious little boy. He is a most thoughtful and considerate husband, consistently kind to everyone in his path.
We went to Seattle on Wednesday night for Leland's appointment. Everything looks good. The PSA did not come down, but neither did it double for the first time in 3 months, so it looks as though the Zytiga is working. No one knows for how long, as that varies considerably from patient to patient. Dr. Chen said the cancer is under control for now. We will take every good day and be grateful. We plan to do some travel this summer while he is still feeling well, and making the most of every day we are given.
It was good to see Lorance, Judy and Monte Sabbath afternoon, and visit with
them for a little while, as they welcomed little Phoenix to the family.
Sunday, March 31, 2013
Sunday, March 24, 2013
2013 March 23 -Welcome Phoenix!
2013 March 23, 2013
Yesterday was very long, beginning with the phone call at
5:10 am with the news Cherilyn and Todd were heading to the hospital. We were packed for a week and out of the
house by 6:50, and arrived at Emanuel Hospital in Portland by 9:00 am. It went very slowly, but she did great, with
Phoenix Sky Bertgess getting his first glimpse of his new world about 8:56
pm. He is beautiful and perfect! Looks just like Todd’s baby pictures, and is
weighing in at 7 pounds, 1.9 ounces. Cherilyn was pretty exhausted by the time
it was all over, but the almost instantaneous switch from painful last stage
labor and delivery to radiant brand new mom is amazing to behold. I was privileged to be right there and
witness the whole event, and it will be a treasured memory always.
Tina and Grant, Chaunda, Leland, Dawn and Ena were all
there as well lending support and waiting for to hear of the birth, then
waiting to be able to go in and meet the newest member of the family after
Cherilyn and Todd had spent a few minutes alone with just the three of
them. We all left shortly afterward,
finally falling into bed about midnight or so.
We found out this week the conditional grant has been
officially approved, Praise the Lord, and the generous people who donate to
Chronic Disease Fund! The liver function
tests came out well, all within normal limits, so the next step is the PSA and
other blood work to be done in preparation for his appointment on the 28th,
which should tell us more about whether or not this approach is going to work
for a while. In the meantime, he is still feeling well for which we are
thankful.
Sunday March 24, 2013
We Chaunda, Leland
and I, spent yesterday visiting the new little family and getting to hold
Phoenix for the very first time, an emotional moment for me, a proud and
smiling one for Leland. Phoenix is a
warm and precious little bundle who looks very much like his Daddy’s baby
pictures. I had told Todd that
immediately after the birth, so he brought one into the hospital yesterday, so
I got to say “I told you so!” Baby has a
very nice little dimple in his chin, which definitely came from Cherilyn, so he
is a mix of both of them. They are both so in love with him, it is just a
beautiful sight and we are thanking God for a safe delivery and healthy
outcome. Next, the adjustments that all
parents and babies go through, and we will be here to cook, wash dishes and clean,
and be a general support for them-how fortunate can we be??
We also went for a walk along the downtown Portland
Riverwalk under the blossoming cherry trees.
Beautiful! We then went to Mark
and Tina’s for a nice visit, then back to the hospital to spend more time with
Cher, Todd and Phoenix. A great Sabbath
filled with spring beauty and family.
Sunday, March 17, 2013
2013 March 17
Today is chilly and cloudy in Goldendale, but we are warm
inside. Leland is working in his office
trying to find out how to sync our new Kindle (Thank you Chaunda) with the
Kindle for Pc which I have on my laptop.
He built a fire earlier, and now we have the windows open to keep it
under 78 degrees.
Last week we spent Sunday morning burning downed limbs
from the other side of the driveway.
There is still a lot more of that to do.
On Wednesday and Thursday we rearranged the garden shed which meant
moving the heat mats and lights for seed starting to a table from the previous
location. This meant Leland needed to
build a shelf from which to hang the lights. It is a nice bonus because now
other equipment can be stored there.
He was tired by the end of the week, but we went to SS
and church then home to dinner with Nancy and Vic and their daughter Amy. Kathy and Dan were there too. We had a great meal, excellent company and a
fine afternoon. We came home around
4:30, and Leland slept for about 2 hours, something he has not done for quite a
while.
We were so busy Friday that we forgot he needed to go
have the blood test done, so will do that first thing Monday morning.
Did anyone read the blog from last week? Did you have any
thoughts regarding your status as a blood relative of someone with Prostate Ca? Just curious. If you would like to comment,
which I would appreciate, and you have difficulty with the blog site, feel free
to jot a quick e-mail even one sentence or a short paragraph would be welcome. eileenvt@wildblue.net.
I am not asking for comment on every blog every week, but it would be nice to
have some feedback especially when I post information such as I posted last
week.
We are all still waiting for the baby, Cherilyn posted on
Face Book this am that Todd is watching her as though she were a ticking time bomb
: )
Friday, March 8, 2013
2013 March 8
So, how is Leland doing on the Zytiga? He is still feeling well, doing chores, running errands, designing flyers and announcements for church and walking nearly every day. Sometimes he feels a little nauseated for a short time before eating breakfast, as the Zytiga must be taken on an empty stomach, an hour before a meal, or two hours afterward. It is easiest and most consistant to take it upon arising, then wait an hour til breakfast.
His hair is getting a little longer so he no longer looks bald, and his fingernails are about half grown out with new, normal looking nails. He keeps them as short as possible, as they are really strange looking, all white and bumpy looking from the chemo. The peripheral neuopathy seems to be gradually improving, but he still has problems doing small tasks such as picking up something flat from a flat surface or buttoning the small buttons on his collar or cuffs. Next Friday he goes in for liver function blood testing, as the Zytiga can be very hard on the liver, so it needs to be monitored.
We received the paperwork from the Chronic Disease Fund, filled out and e-mailed it in. We have a conditional grant which paid for the first dose, but now they have to examine the application to make sure we still qualify. What a blessing an organization such as this is to people struggling with these incredible co-payments. On the forum for Pca wives to which I belong, there are many others in the same situation. One lady posted from France saying that their government pays for theirs, otherwise they would not have it. In the states, Medicare Patients are excluded from most programs which help patients with these costs-hard to understand.
Special Note to blood relatives of Leland: From Dr. Stephan Strum, Medical Oncologist Specializing in Prostate Cancer:
1. Male relatives of a Prostate Cancer Patient, nephews, brothers or sons are all much more likely to also get Pca, and should be sure to have their PSA tested beginning in late 30s or by 40 years old for a benchmark level. They should also be sure to have a DRE (Digital Rectal Exam) every year. Do NOT listen to the advice currently being given not to have a PSA test done-it is wrong headed and in addition, the people on the taskforce who came up with it are not Pathologists, or Oncologists, or Urologists-none of the people on the front lines of Prostate Cancer care were consulted. Dr. Snuffy Myers, another Prostate Oncologist says he is already beginning to see the results of this terrible advice in his practice as some insurance companies are now refusing to pay for the test, and he is seeing more patients coming in with advanced Pca than before this was made public.
It is true that many men were diagnosed with a low grade Pca and overtreated, but better education and research is showing which cancers can be treated with watchful waiting and which ones need immediate treatment. It is tragic to throw the baby out with the bathwater.
2. Daughters are more susceptible to Breast Cancer. I am not sure if that warning also includes sisters and nieces, Dr. Strum did not specifically mention the Breast Cancer connection except for daughters.
Last Sunday, Del, Kathy and I went to Portland for the day to help Cherilyn get the nursery ready. They had recently moved, and were in need of help. They had washed all the tiny little clothes, but everything needed to be sorted by size, folded and put away. Del did a great job with that. Kathy spent the time working on a porta crib which needed some repair. She is very patient and persistent ,and had it in working order by the time we left. I worked on setting up the changing tables, one upstairs and one down stairs, unwrapping pacifiers, toys and equipment. Then Del and I washed everything that had been unwrapped, all the little dishes, spoons, bottles, rattles, toys and misc. stuff as Kathy finished the crib. We left them prepared to bring the baby home and be able to smoothly take care of him-at least as smoothly as can be done with a newborn! We had a great time-thank you Del and Kathy.
Cherilyn is now 37.5 weeks along, and has begun to dilate and efface, and is having contractions. So we should have a new little grandson most any day now. We will be going to Portland as soon as we get the call to support and help them, and love on that little boy. Will let you all know when it happens!
His hair is getting a little longer so he no longer looks bald, and his fingernails are about half grown out with new, normal looking nails. He keeps them as short as possible, as they are really strange looking, all white and bumpy looking from the chemo. The peripheral neuopathy seems to be gradually improving, but he still has problems doing small tasks such as picking up something flat from a flat surface or buttoning the small buttons on his collar or cuffs. Next Friday he goes in for liver function blood testing, as the Zytiga can be very hard on the liver, so it needs to be monitored.
We received the paperwork from the Chronic Disease Fund, filled out and e-mailed it in. We have a conditional grant which paid for the first dose, but now they have to examine the application to make sure we still qualify. What a blessing an organization such as this is to people struggling with these incredible co-payments. On the forum for Pca wives to which I belong, there are many others in the same situation. One lady posted from France saying that their government pays for theirs, otherwise they would not have it. In the states, Medicare Patients are excluded from most programs which help patients with these costs-hard to understand.
Special Note to blood relatives of Leland: From Dr. Stephan Strum, Medical Oncologist Specializing in Prostate Cancer:
1. Male relatives of a Prostate Cancer Patient, nephews, brothers or sons are all much more likely to also get Pca, and should be sure to have their PSA tested beginning in late 30s or by 40 years old for a benchmark level. They should also be sure to have a DRE (Digital Rectal Exam) every year. Do NOT listen to the advice currently being given not to have a PSA test done-it is wrong headed and in addition, the people on the taskforce who came up with it are not Pathologists, or Oncologists, or Urologists-none of the people on the front lines of Prostate Cancer care were consulted. Dr. Snuffy Myers, another Prostate Oncologist says he is already beginning to see the results of this terrible advice in his practice as some insurance companies are now refusing to pay for the test, and he is seeing more patients coming in with advanced Pca than before this was made public.
It is true that many men were diagnosed with a low grade Pca and overtreated, but better education and research is showing which cancers can be treated with watchful waiting and which ones need immediate treatment. It is tragic to throw the baby out with the bathwater.
2. Daughters are more susceptible to Breast Cancer. I am not sure if that warning also includes sisters and nieces, Dr. Strum did not specifically mention the Breast Cancer connection except for daughters.
Last Sunday, Del, Kathy and I went to Portland for the day to help Cherilyn get the nursery ready. They had recently moved, and were in need of help. They had washed all the tiny little clothes, but everything needed to be sorted by size, folded and put away. Del did a great job with that. Kathy spent the time working on a porta crib which needed some repair. She is very patient and persistent ,and had it in working order by the time we left. I worked on setting up the changing tables, one upstairs and one down stairs, unwrapping pacifiers, toys and equipment. Then Del and I washed everything that had been unwrapped, all the little dishes, spoons, bottles, rattles, toys and misc. stuff as Kathy finished the crib. We left them prepared to bring the baby home and be able to smoothly take care of him-at least as smoothly as can be done with a newborn! We had a great time-thank you Del and Kathy.
Cherilyn is now 37.5 weeks along, and has begun to dilate and efface, and is having contractions. So we should have a new little grandson most any day now. We will be going to Portland as soon as we get the call to support and help them, and love on that little boy. Will let you all know when it happens!
Friday, March 1, 2013
2013 March 1 We got it!
This week began with a trip to Indianola Wa, near Bainbridge Island with Del and Chuck to spend three nights at Raspberry Cottage. It is a very attractive and comfortable retirement home for Chuck's brother and his wife, which they have purchased and furnished for later. They graciously invited us to stay there and we had a great time, exploring, walking on piers among saling and fishing boats, shopping in interesting little stores and just sight seeing.
On Wednesday morning we packed up and left for Seattle on the Ferry, had our lunch watching the beautiful scenery, went for Leland's blood draw at the clinic, then went to the Boeing Flight Museum. We really enjoyed seeing a retired Air Force One Jet, a British Airways Concorde, a MD21 Blackbird Spy Plane and scores of retired fighter planes from World War I onward. It is a great museum. Leland says it is considerably larger than it was several years ago when he was there last.
In the evening we met Chaunda for dinner and went to an Indian Restaurant which is very attractive with excellent food. It was really great to spend some time with her and hear more about her new job.
We stayed at our usual hotel, then on Thursday morning went for Leland's appointment. Dr. Chen, back from vacation, says Leland's cancer is not behaving predictably, that it is rare not to have a good response at least for a while to the hormone therapy, that it is possible the cancer has mutated into a small cell type which does not respond to the usual Prostate therapies. However, we will not know this for sure until we see his response to the Zytiga. His PSA was higher again, up to 51 now, but the Alkaline Phosphatase (an indicator of bone cancer activity) was within normal limits for the first time in 4 months. So the picture is a little confusing. He feels pretty well, and has a decent amount of energy, for which we are always grateful.
While we were sight seeing Monday morning, we got a call from the pharmacy telling us that the Chronic Disease Fund had just opened up again, and if we got an application in immediately, which she would submit as soon as she finished our conversation, we would find out if Leland was accepted within 24-48 hours. Tuesday morning she called again and said he was accepted! The grant will cover the co-pays except for 50 dollars until we get to the catastrophic stage, and we can handle that. We had decided that if God wanted him to have that medicine, He would provide it, and if He did not, it probably would not work for him anyway. We received the package by UPS today, and he has taken his first dose. He will have to have blood tests for liver function in two weeks, and then have the PSA checked a week later at which time perhaps we will have a clearer picture of the course this beast is taking.
It is enlightening to seek funding for these expensive medicines. It seems that if one wishes their donation to directly benefit cancer patients, it is best to donate to foundations which exist for that purpose. Eventually I will do some research to disover where the millions donated to cancer actually end up. In the meantime, we are grateful for the Chronic Disease Fund and the timely efficient manner in which they have helped us. The other foundation to which we applied has yet to respond, and the others were all closed, as their funds have already been distributed.
This is a lesson in patience and trust, and other qualities which we have yet to discover, yet there is peace in knowing God is in control; will meet our needs, and walk with us every step of the way.
On Wednesday morning we packed up and left for Seattle on the Ferry, had our lunch watching the beautiful scenery, went for Leland's blood draw at the clinic, then went to the Boeing Flight Museum. We really enjoyed seeing a retired Air Force One Jet, a British Airways Concorde, a MD21 Blackbird Spy Plane and scores of retired fighter planes from World War I onward. It is a great museum. Leland says it is considerably larger than it was several years ago when he was there last.
In the evening we met Chaunda for dinner and went to an Indian Restaurant which is very attractive with excellent food. It was really great to spend some time with her and hear more about her new job.
We stayed at our usual hotel, then on Thursday morning went for Leland's appointment. Dr. Chen, back from vacation, says Leland's cancer is not behaving predictably, that it is rare not to have a good response at least for a while to the hormone therapy, that it is possible the cancer has mutated into a small cell type which does not respond to the usual Prostate therapies. However, we will not know this for sure until we see his response to the Zytiga. His PSA was higher again, up to 51 now, but the Alkaline Phosphatase (an indicator of bone cancer activity) was within normal limits for the first time in 4 months. So the picture is a little confusing. He feels pretty well, and has a decent amount of energy, for which we are always grateful.
While we were sight seeing Monday morning, we got a call from the pharmacy telling us that the Chronic Disease Fund had just opened up again, and if we got an application in immediately, which she would submit as soon as she finished our conversation, we would find out if Leland was accepted within 24-48 hours. Tuesday morning she called again and said he was accepted! The grant will cover the co-pays except for 50 dollars until we get to the catastrophic stage, and we can handle that. We had decided that if God wanted him to have that medicine, He would provide it, and if He did not, it probably would not work for him anyway. We received the package by UPS today, and he has taken his first dose. He will have to have blood tests for liver function in two weeks, and then have the PSA checked a week later at which time perhaps we will have a clearer picture of the course this beast is taking.
It is enlightening to seek funding for these expensive medicines. It seems that if one wishes their donation to directly benefit cancer patients, it is best to donate to foundations which exist for that purpose. Eventually I will do some research to disover where the millions donated to cancer actually end up. In the meantime, we are grateful for the Chronic Disease Fund and the timely efficient manner in which they have helped us. The other foundation to which we applied has yet to respond, and the others were all closed, as their funds have already been distributed.
This is a lesson in patience and trust, and other qualities which we have yet to discover, yet there is peace in knowing God is in control; will meet our needs, and walk with us every step of the way.
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