Happy Anniverary to Stephen King, 46 years ago the two of us married. So many memories have been made since then. Three kids, six grandchildren, each a blessing. So many ups and downs, mostly ups. So many challenges, mostly met. There is no other man I would have wanted to spend my life with and somehow I knew that the first time we spoke. I just wish I had taken notes along the way, no one would believe the trip we've had.
Tomorrow is another doctor visit for Steve, checking on the rash from the chemo. He continues to be weak, but doesn't appear to have lost more weight. He was losing about 5 pounds a week following his treatments. The past week was difficult for him, my Uncle Bill, one of his best friends passed away. We have lost four family members this year and each visit to the funeral home seems to take a bigger piece of Steve. His own mortality being threatened, he suffers deeply at others' passings. The massacre in Connecticut was a senseless violent act which brought him and our nation to our knees. Steve cannot understand acts such as this against children, but who among us can? He has spoken of little else since Friday. I pull inside myself and keep silent, seeking Peace from faith in God.
Christmas shopping is finished, candy-making and baking this week, I'm hoping. I've learned not to write my plans in stone, but to bend like the willow. If the fudge and cookies get made, hurrah, if something else comes up demanding time and attention, so be it. I will not sweat the small stuff and baring breath and blood - it is all small stuff. Cancer teaches some lessons very well; you must change priorities to deal with it.
The Gagglefest was wonderful, fast and fun. Dex and Eden are perfect babies and I love them both to pieces. Seeing my grad girls was just what I needed, they are truly wonderful ladies. Mackenzie went along and had a good time listening to all our chatter and holding babies. My grandaughters growing up to become women like these would be a blessing. I could proudly claim them all as daughters.
Stephen King plans for our boys to put a new metal roof on the house soon. A clay color like we put on the garage a few years ago. They will also rebuild the back porch and install a ramp. Maybe. I am hoping they aren't considering a deck instead of a covered porch. I want to maintain the bungalowe feeling of our house, not modernize it. But I may have a fight on my hands. We shall see.
Little is being accomplished around here, we go to doctor appointments, stay with Mom once or twice a week and attempt to keep the dirt out. We both are reading quite abit, but finding something to peak our interest is difficult. I find myself becoming more and more silent, not withdrawing but seeking strength. Take care. Talk to me. Bless us all.
Sunday, December 16, 2012
Thursday, November 29, 2012
Another day, another side effect...
Hello Ladies,
Stephen King is on a new treatment, Alimta, and it is less devasting than the Taxol, but has its faults. He is weak as a cat, has trouble breathing and has a raging rash. But the pain in his back and chest has been abolished. He will probably have six of these treatments in the next four months, so it will be another long winter here. For me, the worse side effect is the depression which seems to have come with the Alimta. Steve has handled his diagnosis with his usual wry humor until lately. He is quiet, moody and quick to anger now. I cannot blame him, Heaven knows he has had his world cave in on him this year.
On a happier note, Courtney flew home to surprise us on his first day of treatment. We have so enjoyed having her home. She has been a blessing to me and her dad. I've had cataract surgery on both eyes in the last two weeks and relied on Court for help. She has been our driver, chef and entertainment and we have loved every minute of it. She leaves on Saturday and we are sure to be in mourning for a few days after, I'm sure. OZ is so far from Indiana. But we've had a few family dinners, shopping days, doctor visits together to remember til we are together again. Thanksgiving at Trent and Nina's was wonderful, just wonderful. And we will have a big lasagna dinner before Courtney leaves with all our kiddos too. Have to make as many good memories as possible. Today we are having a "girls' lunch" at the Winery. I have to jump in the shower and get glammed up right now! If that is possible with a black eye, saggy skin and a head full of silver hair.
My Gaggle of Girls is attempting a get-together on Saturday in Indy after I drop Court at the airport. I will need this to help get me through the sadness and I cannot wait to see all my girls again and meet a couple of new little goslings. Nothing like babies to raise the spirit.
Talk to me, Hedy
Stephen King is on a new treatment, Alimta, and it is less devasting than the Taxol, but has its faults. He is weak as a cat, has trouble breathing and has a raging rash. But the pain in his back and chest has been abolished. He will probably have six of these treatments in the next four months, so it will be another long winter here. For me, the worse side effect is the depression which seems to have come with the Alimta. Steve has handled his diagnosis with his usual wry humor until lately. He is quiet, moody and quick to anger now. I cannot blame him, Heaven knows he has had his world cave in on him this year.
On a happier note, Courtney flew home to surprise us on his first day of treatment. We have so enjoyed having her home. She has been a blessing to me and her dad. I've had cataract surgery on both eyes in the last two weeks and relied on Court for help. She has been our driver, chef and entertainment and we have loved every minute of it. She leaves on Saturday and we are sure to be in mourning for a few days after, I'm sure. OZ is so far from Indiana. But we've had a few family dinners, shopping days, doctor visits together to remember til we are together again. Thanksgiving at Trent and Nina's was wonderful, just wonderful. And we will have a big lasagna dinner before Courtney leaves with all our kiddos too. Have to make as many good memories as possible. Today we are having a "girls' lunch" at the Winery. I have to jump in the shower and get glammed up right now! If that is possible with a black eye, saggy skin and a head full of silver hair.
My Gaggle of Girls is attempting a get-together on Saturday in Indy after I drop Court at the airport. I will need this to help get me through the sadness and I cannot wait to see all my girls again and meet a couple of new little goslings. Nothing like babies to raise the spirit.
Talk to me, Hedy
Friday, November 9, 2012
GOOD NEWS/BAD NEWS
Hello all,
Stephen King saw Dr. K on Wednesday to get the results from the CT scan. The good news is the liver and pancreas look clear, the bad news is the tumor in his spleen has enlarged alot as ha the lung tumor. He will have a bone scan on Tuesday to assess the bone tumors, since he is having increased back pain. A new regiment of chemotherapy begins on Wednesday morning. So begins The Battle II. The new drug shouldn't cause the hair loss he had with taxol, but might cause nausea, vomiting and blood disorders. He hates to vomit (but who doesn't), and after the last experience isn't thrilled to get started. But he is a good patient and does what the doctor orders.
Another bit of good news- he felt good enough to go coon hunting with his friend Joe last night. He wasn't able to go any last year and has been so excited to hunt this season. Luckily, Hoss and Bruce, the coon dogs, didn't run the hills of Northwest township, but stayed on the few strips of flat, walkable land. They treed a couple of raccoons, barked their lovely barks and returned to the truck to be easily reloaded. Only a 2 hour hunt, but it meant the world to that old man and his dog. They were buddies out on the hunt once again. I do believe Hoss was smiling when they got home, I know Steve was. Of course that outing cost him, his back is really screaming this morning, but he is laughing as he recounts their big adventure to me over our coffee. It is the little things that give us such joy, Ladies, don't forget this. We mustn't wait for the big events, but should enjoy these little moments. Look for the fleeting, sweet snatches of happiness each day. Life is full of them if we keep our eyes and hearts open.
All of the news happened on Stephen King's 67th birthday, by the way. Happy _ing Birthday, huh? But yesterday we celebrated with The Sisters at Hagens, our favorite restaurant on the famed Valley Hill Course. The Sisters are, of course, Steve's four older sisters. For the uninformed, Stephen King is the only boy in a family of six kids and is younger than all but one of them. Certainly the Special Golden child, presented to his father upon his return from WWII. A beautiful red haired wonder, according to his oldest sister who remember his birth as the Second Coming. My in-laws had six kids in seven years, I'm not sure how any birth can be remembered. The girls and Steve have monthly lunches together since they have all retired and look forward to seeing each other and sharing old times. Steve becomes the brunt of lots of jokes when all these girls get together and he loves it. I've always been included as one of the girls in this family from day one. And day one was many, many years ago. In December, we will have been married 46 years. Shocking, I know.
Our family is shaken by the latest development, but not down and out. Mackenzie continues to recover smoothly, Mom continues to decline, life goes on as it should. Courtney and Ken won a tremendous amount of money on a series of horse races in OZ and they are as giggly as children, offering to fly us over (down under?) when her dad feels up to the long voyage. I'm working on passports, but keep dropping the ball and having to start over. So far it has taken me three years and I'm not getting past the entering info stage. We both want to see where Courtney makes her life now, but cannot fully imagine being there. Or flying there, 24 hours inside a metal tube, thousands of feet in the air, at breakneck speed. Yes, Xanax will be in use, and maybe alcohol. We are both inclined to sleep after a glass of wine so maybe it won't be too stressful.
Oh Ladies, the chores are calling, vaccum is sitting in the parlor, laundry is in the basket, I best break up the party and return to my real life. :-). Talk to me.
Love to all.
Stephen King saw Dr. K on Wednesday to get the results from the CT scan. The good news is the liver and pancreas look clear, the bad news is the tumor in his spleen has enlarged alot as ha the lung tumor. He will have a bone scan on Tuesday to assess the bone tumors, since he is having increased back pain. A new regiment of chemotherapy begins on Wednesday morning. So begins The Battle II. The new drug shouldn't cause the hair loss he had with taxol, but might cause nausea, vomiting and blood disorders. He hates to vomit (but who doesn't), and after the last experience isn't thrilled to get started. But he is a good patient and does what the doctor orders.
Another bit of good news- he felt good enough to go coon hunting with his friend Joe last night. He wasn't able to go any last year and has been so excited to hunt this season. Luckily, Hoss and Bruce, the coon dogs, didn't run the hills of Northwest township, but stayed on the few strips of flat, walkable land. They treed a couple of raccoons, barked their lovely barks and returned to the truck to be easily reloaded. Only a 2 hour hunt, but it meant the world to that old man and his dog. They were buddies out on the hunt once again. I do believe Hoss was smiling when they got home, I know Steve was. Of course that outing cost him, his back is really screaming this morning, but he is laughing as he recounts their big adventure to me over our coffee. It is the little things that give us such joy, Ladies, don't forget this. We mustn't wait for the big events, but should enjoy these little moments. Look for the fleeting, sweet snatches of happiness each day. Life is full of them if we keep our eyes and hearts open.
All of the news happened on Stephen King's 67th birthday, by the way. Happy _ing Birthday, huh? But yesterday we celebrated with The Sisters at Hagens, our favorite restaurant on the famed Valley Hill Course. The Sisters are, of course, Steve's four older sisters. For the uninformed, Stephen King is the only boy in a family of six kids and is younger than all but one of them. Certainly the Special Golden child, presented to his father upon his return from WWII. A beautiful red haired wonder, according to his oldest sister who remember his birth as the Second Coming. My in-laws had six kids in seven years, I'm not sure how any birth can be remembered. The girls and Steve have monthly lunches together since they have all retired and look forward to seeing each other and sharing old times. Steve becomes the brunt of lots of jokes when all these girls get together and he loves it. I've always been included as one of the girls in this family from day one. And day one was many, many years ago. In December, we will have been married 46 years. Shocking, I know.
Our family is shaken by the latest development, but not down and out. Mackenzie continues to recover smoothly, Mom continues to decline, life goes on as it should. Courtney and Ken won a tremendous amount of money on a series of horse races in OZ and they are as giggly as children, offering to fly us over (down under?) when her dad feels up to the long voyage. I'm working on passports, but keep dropping the ball and having to start over. So far it has taken me three years and I'm not getting past the entering info stage. We both want to see where Courtney makes her life now, but cannot fully imagine being there. Or flying there, 24 hours inside a metal tube, thousands of feet in the air, at breakneck speed. Yes, Xanax will be in use, and maybe alcohol. We are both inclined to sleep after a glass of wine so maybe it won't be too stressful.
Oh Ladies, the chores are calling, vaccum is sitting in the parlor, laundry is in the basket, I best break up the party and return to my real life. :-). Talk to me.
Love to all.
Wednesday, October 24, 2012
Vacation report, Down to the Sea
Hello all, I can't believe it's been a month since I've posted here, but it has been a busy October. Actually the kids and I returned from 10 days in Florida late Sunday night. After our long challenge of summmer, we really enjoyed the peace and serenity of the coast. I slept with my bedroom door open to listen to the waves hitting the shore. The birds were amazingly vocal, I don't remember them being so chatty during my spring or summer visits. I love listening to birds calling back an forth to each other. The weather was just about perfect this trip, October is THE month to vacation on the Gulf Coast. We sat on the beach more than ever, spent time on the decks and even watched the meteor shower laying on the pool deck. A new experience for my grandkids, a couple of them (no names) freaked abit in the dark.
You can bet it wasn't Madeleine. That girl has nerves of steel. One night Trent found a tiny gecko under his bathroom sink, Maddie was amazed that his underside was transparent and his heart and intestines were visible. The others were grossed out by the little guy. Not surprisingly he had lots of cousins outside, on the drive, the garage door, the pool... Gavin and Caleb loved the jungle-like yard surrounding the house, they are very into Army games. They wore camo most of the time we were there. Full fatigues, helmets, shorts, hiking boots and t-shirts, they stormed the beach, then stripped down, jumped into the pool for SEAL training. Not since our boys were that age have I seen such action. Even Maddie couldn't keep up with them. Trent and Nina took the 3 littles on a geo-caching adventure that lasted all day, they even visited an old cemetary which held the spirits of the victims of a malaria epidemic which wiped out Post St. Joe a couple of centuris ago. This is according to the Ghost Radar on Trent's Smart Phone!!!
Mostly we just relaxed, ate and breathed in the sea during our vacation. Caleb was spitting on the beach and Shawn told him to stop, he replied, "I have to Mom, my mouth is full of the sea". I loved that. Full of the sea, indeed. That is exactly what I needed; to be full of the sights, the smells and the sounds of the sea. Weird, since I have always been afraid of water, but I feel able to breathe when at the edge of the sea. At times I feel as if my lungs will burst, needing that wind in my face and yet I'm landbound here in Indiana for all but two or three weeks a year.
Steve has been having daily back pain but has controlled it fairly well with OTC meds. The neuropathy in his feet continues to be his worst complaint and the tiredness. Even after eight months without chemo his strength has not returned. Facing another round really concerns us both. Today he had to cut his walk short because he was short of breath. When I question him about how he is feeling, he laughingly says, "I think I have cancer or something bad". His feeble attempt to convince me he isn't worried. After all these years together, he still tries to protect me.
Mackenzie had a check-up in Indy today, great news she can now wait two months between trips. She will continue the weekly labs and all her meds but this is a big step. The child has been to Riley or IU Med Center every month for over nine years. She has had a rapid weight gain that is normal for transplant patients. Today they told her to walk more and begin some exercise. She isn't thrilled by the idea of working out, she is as non-athletic as her gma. Poor girl. But all is good, she will do whatever she has to do. Strong genes in this girl. Bless her heart.
Poor Mom continues to lose reality plus her physical health seems to fail each week. We share taking care of her with mixed emotions, my sister, aunts and I hate to leave her but have to get rest and relief from the strain being there brings. While our brothers deny the depth of her illness and breeze in and out refusing to admit to themselves that we are losing Mom. It hurts so much to see their hurt. They have both shared a special relationship with her, one her first born son, the other her baby boy. Life is hard, my friends, you have to be strong. And sometimes being strong is the pits.
Sorry, this wasn't meant to end on a down note. Day-to-day we are ok and God is good. Love.
You can bet it wasn't Madeleine. That girl has nerves of steel. One night Trent found a tiny gecko under his bathroom sink, Maddie was amazed that his underside was transparent and his heart and intestines were visible. The others were grossed out by the little guy. Not surprisingly he had lots of cousins outside, on the drive, the garage door, the pool... Gavin and Caleb loved the jungle-like yard surrounding the house, they are very into Army games. They wore camo most of the time we were there. Full fatigues, helmets, shorts, hiking boots and t-shirts, they stormed the beach, then stripped down, jumped into the pool for SEAL training. Not since our boys were that age have I seen such action. Even Maddie couldn't keep up with them. Trent and Nina took the 3 littles on a geo-caching adventure that lasted all day, they even visited an old cemetary which held the spirits of the victims of a malaria epidemic which wiped out Post St. Joe a couple of centuris ago. This is according to the Ghost Radar on Trent's Smart Phone!!!
Mostly we just relaxed, ate and breathed in the sea during our vacation. Caleb was spitting on the beach and Shawn told him to stop, he replied, "I have to Mom, my mouth is full of the sea". I loved that. Full of the sea, indeed. That is exactly what I needed; to be full of the sights, the smells and the sounds of the sea. Weird, since I have always been afraid of water, but I feel able to breathe when at the edge of the sea. At times I feel as if my lungs will burst, needing that wind in my face and yet I'm landbound here in Indiana for all but two or three weeks a year.
Steve has been having daily back pain but has controlled it fairly well with OTC meds. The neuropathy in his feet continues to be his worst complaint and the tiredness. Even after eight months without chemo his strength has not returned. Facing another round really concerns us both. Today he had to cut his walk short because he was short of breath. When I question him about how he is feeling, he laughingly says, "I think I have cancer or something bad". His feeble attempt to convince me he isn't worried. After all these years together, he still tries to protect me.
Mackenzie had a check-up in Indy today, great news she can now wait two months between trips. She will continue the weekly labs and all her meds but this is a big step. The child has been to Riley or IU Med Center every month for over nine years. She has had a rapid weight gain that is normal for transplant patients. Today they told her to walk more and begin some exercise. She isn't thrilled by the idea of working out, she is as non-athletic as her gma. Poor girl. But all is good, she will do whatever she has to do. Strong genes in this girl. Bless her heart.
Poor Mom continues to lose reality plus her physical health seems to fail each week. We share taking care of her with mixed emotions, my sister, aunts and I hate to leave her but have to get rest and relief from the strain being there brings. While our brothers deny the depth of her illness and breeze in and out refusing to admit to themselves that we are losing Mom. It hurts so much to see their hurt. They have both shared a special relationship with her, one her first born son, the other her baby boy. Life is hard, my friends, you have to be strong. And sometimes being strong is the pits.
Sorry, this wasn't meant to end on a down note. Day-to-day we are ok and God is good. Love.
Saturday, September 22, 2012
Back to the Battle
It sure is beginning to look like fall in Southern Indiana this week and I am glad. This has been such a long, hot, dry summer it is a relief to see it going. Of course we don't know what fall and winter hold for us either. Hopefully a return to normalcy... maybe. I just don't do well in heat, but have been loving the bright, cool days we have had this week.
Stephen King's PetScan revealed more cancer in his spine, which explains the discomfort he has been experiencing lately. But the good news is the lung tumor is unchanged. Dr. K says we will continue with the support drug regime for 6 weeks then get another scan to access the situation. He will probably need another round of chemo by year's end. She cannot use the Taxol from his last treatments and we are glad. Finding a new combination of drugs should be simple, but we won't know how he will be affected by them. Just praying the effects will not be as devastating as the Taxol. Steve feels good and is now walking ove a mile at a time each day. Hank loves their outings and is learning not to pull him down the road too fast! The neuropathy in his feet is still an issue, but Steve walks anyway. He is so tired of being held back by this, he pushes past the pain. Then he rests most of the afternoon. He has gained so much weight since his appetite is enormous. The last weigh-in really got his attention and he has cut back on his cookies abit. Still loving his pie and persimmon pudding though. The doctor doesn't recommend losing much weight with chemo looming over him. He will need that to help fight. Oh, cancer is such a challenge, I cannot find a word which describes what it is. Stephen King says, "it sucks", but I do not think that is a strong enough sentiment. My sister calls it "Evil", and it is that. It certainly calls for flexibility, you have to be ready for anything all the time. I've always considered myself as a go-with-the-flow gal, but sometimes feel stressed by the requirements. Poor Steve doesn't like change and struggles with the reality of his situation. He holds on to the hope his case will be the exception to the rule. It may, but we do not know that and have to be prepared for anything required of us to ensure his health. Sometimes we both want to choose to flee instead of fighting, but we will not.
The kids and I are going to Cape San Blas in October since we didn't get a vacation this summer. We are all so anxious to be back on the beach. This time our house is next to St. Joseph State Park, as well as oceanfront. The Bay will will to our back and we can explore all the hidden places. Our little boys love this, finding shells and crabs and even bigger sealife while wading in calm water is exciting. I once caught a horseshoe crab with my sandal. Surprised us both, but Gavin thought is was sooo cooool. Steve and Stephen say they aren't going, but we are still working on that. Stephen has a blacksmithing committment that he needs to keep and Steve just doesn't like Florida. So it is Gma and the girls and boys and we love it.
An organization in the county is having a Benefit for Mackenzie tonight to help on her medical expenses. Orange County has the biggest heart in Indiana. People have been so supportive through all of her trials. The Benefit has an Ice Cream Social theme, local musicians and a silent auction. Several friends are singing or baking cakes or donating items for auction. It should be a wonderful evening. I have made three cakes to add to the 27 made by others. The local Hardees is donating all the ice cream, Lisa and Denny are good people, always there for others. Next weekend the group has a Benefit for the wife of the high school football coach who has been hospitalized for months with something they cannot diagnose. No one ever seems to tire of helping others in need. I love small towns.
Our boys are doing well in school, inspite of a shaky start for Caleb. He had an emotional summer and wasn't quite sure Mom and Kenz would be OK at home without him. It only took a few days for him to settle in and he really likes his teacher and classmates now. Gavin protests, as always, that he doesn't like school, but he is an excellent student. This year his teacher is a lovely young woman I had as a student. She was always a favorite of mine, bright and responsible. She has grown into a creative and loving teacher for my youngest. Madeleine struggles abit with 7th grade, as we feared. The junior high isn't ready for our fuzzy haired, non-speaking sweetie, with her ADD, OCD, MMI issues. Poor baby takes her own temperature daily just in case she can stay home. Maddie has always loved school and it is heartbreaking to witness her dread of going to school this year. We have considered home schooling, but Madd thrives on the interaction with other kids and it wouldn't be fair to take that away. She can learn and do her work but needs so much more time to process info because of the communication disorder. Shawn called a Case Conference a couple of weeks ago and thought everything was settled but someone dropped the ball and we seem to be back to square one. Please share any bits of advice you might have for us. By the way, I really hate Indiana's new education path.
Lots to do today to get ready for the Benefit, I'd best get out of this chair and get to work. I miss you all and hope we can get together soon. Talk to me, Ladies. Love
Stephen King's PetScan revealed more cancer in his spine, which explains the discomfort he has been experiencing lately. But the good news is the lung tumor is unchanged. Dr. K says we will continue with the support drug regime for 6 weeks then get another scan to access the situation. He will probably need another round of chemo by year's end. She cannot use the Taxol from his last treatments and we are glad. Finding a new combination of drugs should be simple, but we won't know how he will be affected by them. Just praying the effects will not be as devastating as the Taxol. Steve feels good and is now walking ove a mile at a time each day. Hank loves their outings and is learning not to pull him down the road too fast! The neuropathy in his feet is still an issue, but Steve walks anyway. He is so tired of being held back by this, he pushes past the pain. Then he rests most of the afternoon. He has gained so much weight since his appetite is enormous. The last weigh-in really got his attention and he has cut back on his cookies abit. Still loving his pie and persimmon pudding though. The doctor doesn't recommend losing much weight with chemo looming over him. He will need that to help fight. Oh, cancer is such a challenge, I cannot find a word which describes what it is. Stephen King says, "it sucks", but I do not think that is a strong enough sentiment. My sister calls it "Evil", and it is that. It certainly calls for flexibility, you have to be ready for anything all the time. I've always considered myself as a go-with-the-flow gal, but sometimes feel stressed by the requirements. Poor Steve doesn't like change and struggles with the reality of his situation. He holds on to the hope his case will be the exception to the rule. It may, but we do not know that and have to be prepared for anything required of us to ensure his health. Sometimes we both want to choose to flee instead of fighting, but we will not.
The kids and I are going to Cape San Blas in October since we didn't get a vacation this summer. We are all so anxious to be back on the beach. This time our house is next to St. Joseph State Park, as well as oceanfront. The Bay will will to our back and we can explore all the hidden places. Our little boys love this, finding shells and crabs and even bigger sealife while wading in calm water is exciting. I once caught a horseshoe crab with my sandal. Surprised us both, but Gavin thought is was sooo cooool. Steve and Stephen say they aren't going, but we are still working on that. Stephen has a blacksmithing committment that he needs to keep and Steve just doesn't like Florida. So it is Gma and the girls and boys and we love it.
An organization in the county is having a Benefit for Mackenzie tonight to help on her medical expenses. Orange County has the biggest heart in Indiana. People have been so supportive through all of her trials. The Benefit has an Ice Cream Social theme, local musicians and a silent auction. Several friends are singing or baking cakes or donating items for auction. It should be a wonderful evening. I have made three cakes to add to the 27 made by others. The local Hardees is donating all the ice cream, Lisa and Denny are good people, always there for others. Next weekend the group has a Benefit for the wife of the high school football coach who has been hospitalized for months with something they cannot diagnose. No one ever seems to tire of helping others in need. I love small towns.
Our boys are doing well in school, inspite of a shaky start for Caleb. He had an emotional summer and wasn't quite sure Mom and Kenz would be OK at home without him. It only took a few days for him to settle in and he really likes his teacher and classmates now. Gavin protests, as always, that he doesn't like school, but he is an excellent student. This year his teacher is a lovely young woman I had as a student. She was always a favorite of mine, bright and responsible. She has grown into a creative and loving teacher for my youngest. Madeleine struggles abit with 7th grade, as we feared. The junior high isn't ready for our fuzzy haired, non-speaking sweetie, with her ADD, OCD, MMI issues. Poor baby takes her own temperature daily just in case she can stay home. Maddie has always loved school and it is heartbreaking to witness her dread of going to school this year. We have considered home schooling, but Madd thrives on the interaction with other kids and it wouldn't be fair to take that away. She can learn and do her work but needs so much more time to process info because of the communication disorder. Shawn called a Case Conference a couple of weeks ago and thought everything was settled but someone dropped the ball and we seem to be back to square one. Please share any bits of advice you might have for us. By the way, I really hate Indiana's new education path.
Lots to do today to get ready for the Benefit, I'd best get out of this chair and get to work. I miss you all and hope we can get together soon. Talk to me, Ladies. Love
Thursday, August 30, 2012
Good morning all, sorry to have been away for awhile. Our lives are returning to a somewhat normal order. Stephen King is much better after months of foot pain from neuropathy. He has tried acupuncture, increased meds and worn Crocs and something is working :-) Although he has regained his hair and weight, his strength hasn't returned and he spends most afternoons resting. But he can mow and walk abit in the mornings which is wonderful. Another PetScan has been scheduled for next week to check out the tumor situation. We feel that all is well, but do get anxious waiting for results. Please keep him in your prayers.
Mackenzie is thriving in these weeks following the transplant. She has progressed to clinic visits every two weeks. The most obvious change has been in her weight gain and color. For so many years our redhead has been a pasty green hued shadow of herself, but is now glowing peaches and cream. She's gained around 10 pounds and no longer wears Madeleine's clothing. She is tickled to be back into a small junior rather than a girls 12. She will probably start at Hanover second semester, but maybe at IUS. The insecure feelings which persisted all during her illness haven't completely gone. Leaving home is a big deal for any college freshman, but for Mack it is a major change. She has made their home into her secure haven, keeping out fears of hospitals, medicines, and illness. Stepping away from home and parents will be a giant leap. I pray she will take that leap into her new independence and experience life.
Our mom is experiencing some heart failure, we have an appointment with her cardiologist today. She continues to retreat into the past and have pain from arthritis, making her days a slow circle repeated again and again. Keeping closer and closer to home, she refuses offers to eat out or visit family. Our world shrinks with hers and we require quiet time to recenter ourselves after our shift with her. My aunt, sister, sisters-in-law and brothers have been so supportive of Mom, it is heartwarming to watch and be part of.
Janelle messaged us of Brian's accident, we are praying for them all. It sounds as if this may be a long process of healing and restoring. Eden will benefit from having both parents at home all day, that is for sure. I don't envy Janelle the duty of nursing Brian, from experience I know the quirkiness of a sick male. All commonsense seems to leave them. They want to Overdo and then Whine about the repercussions. Don't want to be trouble but insist on meals in front of the TV and speaking of meals; they never want to miss one. Even if their day is not 6AM to 6PM during their recovery, three meals and two snacks are a strict requirement. Good Luck, Sweet Girl. Stand strong, it may be a lonnnngggg fall.
Seriously, I do wish we could all get together while Janelle is on maternity leave. It has been so long and there are now 3 little goslings I haven't seen. Caleb, Dexter and Eden. I watch on FB how Avery and Olivia, Abi and Sam, Trent and Jordan, and Kendra are growing but would love to see them again too. As well as Elaine's other 3. We really need to get her on FB, just to post pictures!
Take care, my friends. Talk to me. Hedy
Mackenzie is thriving in these weeks following the transplant. She has progressed to clinic visits every two weeks. The most obvious change has been in her weight gain and color. For so many years our redhead has been a pasty green hued shadow of herself, but is now glowing peaches and cream. She's gained around 10 pounds and no longer wears Madeleine's clothing. She is tickled to be back into a small junior rather than a girls 12. She will probably start at Hanover second semester, but maybe at IUS. The insecure feelings which persisted all during her illness haven't completely gone. Leaving home is a big deal for any college freshman, but for Mack it is a major change. She has made their home into her secure haven, keeping out fears of hospitals, medicines, and illness. Stepping away from home and parents will be a giant leap. I pray she will take that leap into her new independence and experience life.
Our mom is experiencing some heart failure, we have an appointment with her cardiologist today. She continues to retreat into the past and have pain from arthritis, making her days a slow circle repeated again and again. Keeping closer and closer to home, she refuses offers to eat out or visit family. Our world shrinks with hers and we require quiet time to recenter ourselves after our shift with her. My aunt, sister, sisters-in-law and brothers have been so supportive of Mom, it is heartwarming to watch and be part of.
Janelle messaged us of Brian's accident, we are praying for them all. It sounds as if this may be a long process of healing and restoring. Eden will benefit from having both parents at home all day, that is for sure. I don't envy Janelle the duty of nursing Brian, from experience I know the quirkiness of a sick male. All commonsense seems to leave them. They want to Overdo and then Whine about the repercussions. Don't want to be trouble but insist on meals in front of the TV and speaking of meals; they never want to miss one. Even if their day is not 6AM to 6PM during their recovery, three meals and two snacks are a strict requirement. Good Luck, Sweet Girl. Stand strong, it may be a lonnnngggg fall.
Seriously, I do wish we could all get together while Janelle is on maternity leave. It has been so long and there are now 3 little goslings I haven't seen. Caleb, Dexter and Eden. I watch on FB how Avery and Olivia, Abi and Sam, Trent and Jordan, and Kendra are growing but would love to see them again too. As well as Elaine's other 3. We really need to get her on FB, just to post pictures!
Take care, my friends. Talk to me. Hedy
Monday, July 23, 2012
Life Is Good!
Hello, we are good here. I'm so excited to get to Stephen's house each morning and see my girl. Kenzie is a new person 10 days out from surgery and the new kidney is kicking butt! Her eyes shine, her voice is strong, her face glows, she laughs, she doesn't cough or gasp for breath, she is WELL.
I cannot thank our God enough for this blessing. For nine years, we have watched this child struggle and succeed inspite of her illness. Now, hopefully, the way will be easier for her, the path happier, more exciting. I cannot wait for her to experience life. Kenzie is a special person; strong, full of grace and humor, intelligent and witty. She is going to make a difference in this world, I know God has special plans for her.
Poor Shawn (The Donor) isn't having an easy recovery. She has many incisions and insults to her body. It is more difficult to remove a kidney from a healthy body than to place it into a weak one. She also had a hernia repair done which is major on it's own. Still Shawn is our hero and if she needs more time to heal, more pampering will be hers. I try to push fluids and good food, but so far she isn't very interested in much more than her bed. She was blindsided by the reality of surgery and recovery, never having been a patien before. Mama Shawn has been a rock throughout all the trials her kids have experienced, never faltering, head up, smiling strong. I know she needs tough love to get up and at'em but my maternal side wants to rock her in my arms and spoon feed her ice cream. Stephen is amazing with them both, especially Shawn. He can encourage her to get up move, eat, walk, whatever she needs to do.
The only creature I can bully is Lucy the dog. She think I am the wicked witch. I've kept her from jumping on the girls, eating from dinner plates, the waste baskets and my hand. She has seen more time outs since I've been there than in her full 5 years. She has been the Queen of the household til now. Gma Hedy is showing her a whole new world. Heeheehee.
Kenzie has Clinic in Indy each Tuesday and Friday to keep check on her meds and kidney function, Stephen King and I will be taking her tomorrow. We have to be there at 7:00 AM for labs. Then she can have breakfast and her meds before seeing doctors at 10:00. We will get used to this routine eventually, but this week it will be a challenge, I'm sure.
Mom continues along her path with Alzheimers, losing more each day, living more in the past. My sister, brothers, sisters-in-law and aunt are taking up the slack while I attend to my girls. Soon we can get back to the routine of 24 on once a week. I did run over for a couple of hours on Saturday to visit with Mom and my brother Mike. I explained again about the transplant and how great the girls are doing, but Mom forgets before I'm finished and we replay it once more. Sad, sad, sad.
Stephen King is doing well, proving yet again he can take care of himself while I'm elsewhere. My house is clean and calm when I return each night. He cooks and cleans the kitchen after his meals, aweeps the floor and has the AC on for me. Our new washing machine has him over a barrel. But I can handle the laundry as long as he keeps the kitchen clean! Five years ago, he would not have done anything but fix sausage n eggs and leave his mess. My man has grown so much since retirement. Steve has lots of foot pain from the neuropothy but otherwise is feeling better. The doctor has changed his meds and we hope to see improvement soon. He is determined to beat this too.
We did get a rain last week, so the garden is bouncing back abit. We've had some tomatoes and peppers this weekend, which were wonderful. The corn and green beans are probably shot and our sunflowers are blooming while only 3 feet tall. Some cosmos are budding but the marigolds and zinnias I sowed haven't made a showing yet. My flower row is pretty skimpy this year. But it will be better next year, I'm sure. God is Good All the Time.
Keep in touch, Ladies.
I cannot thank our God enough for this blessing. For nine years, we have watched this child struggle and succeed inspite of her illness. Now, hopefully, the way will be easier for her, the path happier, more exciting. I cannot wait for her to experience life. Kenzie is a special person; strong, full of grace and humor, intelligent and witty. She is going to make a difference in this world, I know God has special plans for her.
Poor Shawn (The Donor) isn't having an easy recovery. She has many incisions and insults to her body. It is more difficult to remove a kidney from a healthy body than to place it into a weak one. She also had a hernia repair done which is major on it's own. Still Shawn is our hero and if she needs more time to heal, more pampering will be hers. I try to push fluids and good food, but so far she isn't very interested in much more than her bed. She was blindsided by the reality of surgery and recovery, never having been a patien before. Mama Shawn has been a rock throughout all the trials her kids have experienced, never faltering, head up, smiling strong. I know she needs tough love to get up and at'em but my maternal side wants to rock her in my arms and spoon feed her ice cream. Stephen is amazing with them both, especially Shawn. He can encourage her to get up move, eat, walk, whatever she needs to do.
The only creature I can bully is Lucy the dog. She think I am the wicked witch. I've kept her from jumping on the girls, eating from dinner plates, the waste baskets and my hand. She has seen more time outs since I've been there than in her full 5 years. She has been the Queen of the household til now. Gma Hedy is showing her a whole new world. Heeheehee.
Kenzie has Clinic in Indy each Tuesday and Friday to keep check on her meds and kidney function, Stephen King and I will be taking her tomorrow. We have to be there at 7:00 AM for labs. Then she can have breakfast and her meds before seeing doctors at 10:00. We will get used to this routine eventually, but this week it will be a challenge, I'm sure.
Mom continues along her path with Alzheimers, losing more each day, living more in the past. My sister, brothers, sisters-in-law and aunt are taking up the slack while I attend to my girls. Soon we can get back to the routine of 24 on once a week. I did run over for a couple of hours on Saturday to visit with Mom and my brother Mike. I explained again about the transplant and how great the girls are doing, but Mom forgets before I'm finished and we replay it once more. Sad, sad, sad.
Stephen King is doing well, proving yet again he can take care of himself while I'm elsewhere. My house is clean and calm when I return each night. He cooks and cleans the kitchen after his meals, aweeps the floor and has the AC on for me. Our new washing machine has him over a barrel. But I can handle the laundry as long as he keeps the kitchen clean! Five years ago, he would not have done anything but fix sausage n eggs and leave his mess. My man has grown so much since retirement. Steve has lots of foot pain from the neuropothy but otherwise is feeling better. The doctor has changed his meds and we hope to see improvement soon. He is determined to beat this too.
We did get a rain last week, so the garden is bouncing back abit. We've had some tomatoes and peppers this weekend, which were wonderful. The corn and green beans are probably shot and our sunflowers are blooming while only 3 feet tall. Some cosmos are budding but the marigolds and zinnias I sowed haven't made a showing yet. My flower row is pretty skimpy this year. But it will be better next year, I'm sure. God is Good All the Time.
Keep in touch, Ladies.
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