Home again!
Bill is home again. The pneumonia that got into his blood system is under control. They were able to identify the exact type of bacteria and give him exact antibiotic to kill it. He began to develop a rash on his hands that we were worried it would develop into that horrific full body rash he had after transplant but luckily they were able to discontinue the drug that did it and rash is gone.
So he is home........feeling almost great and sitting at his desk working.........
So we are praying these viruses that he and I keep getting will stay away......and this crazy cycle will stop!!!!!!
On another happy note...... my trip to Europe to travel with Molly obviously was cancelled but she will be home in 2 days and spend Christmas with her Dad........ God's plan REALLY is better than our plans.
MERRY CHRISTMAS!!!!!
Wednesday, December 12, 2012
Sunday, December 9, 2012
Day +228
Things change on a dime!
So Friday Afternoon Bills' counts were Perfect! By 11:00 Saturday morning he had a temp of 104.8 and escalated white blood count. After a trip to Urgent care followed by ER he was admitted to hospital to receive IV antibiotics. They are testing for flu but we are pretty sure it was the onset of pneumonia.
Today, Sunday. His temp is normal, his heart rate is normal, his blood pressure is normal, white count went up so they did a repeat chest xray. Waiting for his oncologist to make rounds but looks like at least another night here! I had ALMOST forgotten what hospital life was like!
So Friday Afternoon Bills' counts were Perfect! By 11:00 Saturday morning he had a temp of 104.8 and escalated white blood count. After a trip to Urgent care followed by ER he was admitted to hospital to receive IV antibiotics. They are testing for flu but we are pretty sure it was the onset of pneumonia.
Today, Sunday. His temp is normal, his heart rate is normal, his blood pressure is normal, white count went up so they did a repeat chest xray. Waiting for his oncologist to make rounds but looks like at least another night here! I had ALMOST forgotten what hospital life was like!
Friday, December 7, 2012
Day +226
Long Anticipated Blood test.........
Although it has only been a few weeks, it seems like forever since I have posted. Today Bill will be going in for his first blood test in 6 weeks. We will immediately know what his red, white and platelet counts are but will not know his IGM level for a few days. If his counts today are as good as or better than his last check that will give us an indication things are holding well. The IGM is the level of antibodies fighting the cancer. We hope that number continues to be low indicating there is not much cancer to fight! Will let you know later today...... in the meantime Bill and I have been trading respiratory infections for the past couple of weeks. He has been working and even traveling a bit through it all. He never ceases to amaze me his resolve to keep going. He REALLY is an AMAZING man and I am so blessed to be married to! more to follow...
GREAT NEWS!!!!!!!!!!!!
All blood counts were Excellent! Molly said it so well "Best Christmas Gift ever"!!!
Monday, October 22, 2012
Day +180
Well........it looks like this may be my last post for awhile.....
We met today with Bill's transplant doctor to develop a new game plan. In light of his extreme reactions to the latest drugs he was on and his numbers looking so good the new plan is to do NOTHING. We concluded the treatments were causing too many issues for being the icing on the cake after transplant we were hoping for. Bill is thrilled to be drug free for the time being. He will continue to have his blood checked every 6 weeks and if his numbers don't cooperate then we will revisit treatment options with his doctors.
Thank you, thank you, thank you for the many prayers that continue to come our way. Although this journey is in a bit of a recess, Bill and I are ever so grateful for all the love and support we receive from each of you. As Thanksgiving is just around the corner, please know how truly blessed and thankful we are to have each of you along with us on Bill's Journey. We NEVER could have made it through this past year without you!
We met today with Bill's transplant doctor to develop a new game plan. In light of his extreme reactions to the latest drugs he was on and his numbers looking so good the new plan is to do NOTHING. We concluded the treatments were causing too many issues for being the icing on the cake after transplant we were hoping for. Bill is thrilled to be drug free for the time being. He will continue to have his blood checked every 6 weeks and if his numbers don't cooperate then we will revisit treatment options with his doctors.
Thank you, thank you, thank you for the many prayers that continue to come our way. Although this journey is in a bit of a recess, Bill and I are ever so grateful for all the love and support we receive from each of you. As Thanksgiving is just around the corner, please know how truly blessed and thankful we are to have each of you along with us on Bill's Journey. We NEVER could have made it through this past year without you!
Friday, September 28, 2012
Day + 156
Chemo Day......................
9:00 am
Today we met with Bill's doctor to try and map out the new maintenance game plan! We should have a decision today with what to give him in replacement of the oral drug that wiped out not only his immune system but him as well! The GREAT news is his blood test on Monday showed his IGM level NORMAL. This is the antibody that fights the cancer so it tells us things continue to move in the right direction and his body no longer is making an abundance of antibodies. In the meantime he will receive today his Rituxan infusion! He didn't get much sleep last night having anxiety about a repeat of the last episode. And I must admit I didn't either.
10:00 am
So they began today with giving him double the Tylenol, a massive dose if IV Benadryl and a mega dose of a new steroid. Hopefully all of this will convince his body not to reject the chemo! Five minutes into it he couldn't stay awake with all of the benedryl. So we are now waiting for this all to fully kick in before starting the chemo! His chemo nurses are so amazing! They are constantly joking with him while reassuring him everything will be fine, both putting him somewhat at ease. I know I have said this many times before but..............I can't say enough about his chemo nurses. They truly make this journey tolerable!
10:45 am
Ok........... Rituxan has begun at a VERY slow rate. Now we wait and see how his body wants to respond. I have been so fortunate to be able to be with him each and every time he has had chemo. I now know, more than ever, chemo is never routine so keeping a watchful eye is crucial. It always brought me a bit of sadness when I would see a patient going through chemo alone but now I know it is not only important for the patient to not feel that they are in this alone but having someone immediately accessible is equally important.
11:00 am
So far so good.................... I will keep you posted
11:15 am
Blood pressure still good so speeding up the infusion a small bit!
11:22 am
Reaction started......blood pressure this time went sky high as he turned completely red. Team once again jumped into action and took over.
11:31 am
Blood pressure coming down a bit with the help of more drugs and oxygen.
This is definitely the end of Rituxan for Bill.
11:40 am
Blood pressure back to normal, coloring back to normal, state of mind..............still has a way to go!
So back to square one on devising a maintenance plan. Dr. Mehta assured us there are options so we will meet with him again in a couple of weeks to discuss.
I now look back when this journey first began when I asked............ "what is the plan?"
The answer to me was....."today this is the plan but tomorrow it may change." With cancer the plan is always evolving. Every one's cancer is different, everyone reacts differently to drugs, and every one's response to chemo is different. So I now REALLY understand why it is important to be flexible!
So please, keep those prayers coming for Bill and all the millions of people battling this strange disease. Please add to your prayer list pharmaceutical companies that they continue research on this rare cancer and they continue to come up with new drug options. I use to not think very highly of drug companies as I thought they just wanted to make money but now I pray for their success in moving forward.
Kay
9:00 am
Today we met with Bill's doctor to try and map out the new maintenance game plan! We should have a decision today with what to give him in replacement of the oral drug that wiped out not only his immune system but him as well! The GREAT news is his blood test on Monday showed his IGM level NORMAL. This is the antibody that fights the cancer so it tells us things continue to move in the right direction and his body no longer is making an abundance of antibodies. In the meantime he will receive today his Rituxan infusion! He didn't get much sleep last night having anxiety about a repeat of the last episode. And I must admit I didn't either.
10:00 am
So they began today with giving him double the Tylenol, a massive dose if IV Benadryl and a mega dose of a new steroid. Hopefully all of this will convince his body not to reject the chemo! Five minutes into it he couldn't stay awake with all of the benedryl. So we are now waiting for this all to fully kick in before starting the chemo! His chemo nurses are so amazing! They are constantly joking with him while reassuring him everything will be fine, both putting him somewhat at ease. I know I have said this many times before but..............I can't say enough about his chemo nurses. They truly make this journey tolerable!
10:45 am
Ok........... Rituxan has begun at a VERY slow rate. Now we wait and see how his body wants to respond. I have been so fortunate to be able to be with him each and every time he has had chemo. I now know, more than ever, chemo is never routine so keeping a watchful eye is crucial. It always brought me a bit of sadness when I would see a patient going through chemo alone but now I know it is not only important for the patient to not feel that they are in this alone but having someone immediately accessible is equally important.
11:00 am
So far so good.................... I will keep you posted
11:15 am
Blood pressure still good so speeding up the infusion a small bit!
11:22 am
Reaction started......blood pressure this time went sky high as he turned completely red. Team once again jumped into action and took over.
11:31 am
Blood pressure coming down a bit with the help of more drugs and oxygen.
This is definitely the end of Rituxan for Bill.
11:40 am
Blood pressure back to normal, coloring back to normal, state of mind..............still has a way to go!
So back to square one on devising a maintenance plan. Dr. Mehta assured us there are options so we will meet with him again in a couple of weeks to discuss.
I now look back when this journey first began when I asked............ "what is the plan?"
The answer to me was....."today this is the plan but tomorrow it may change." With cancer the plan is always evolving. Every one's cancer is different, everyone reacts differently to drugs, and every one's response to chemo is different. So I now REALLY understand why it is important to be flexible!
So please, keep those prayers coming for Bill and all the millions of people battling this strange disease. Please add to your prayer list pharmaceutical companies that they continue research on this rare cancer and they continue to come up with new drug options. I use to not think very highly of drug companies as I thought they just wanted to make money but now I pray for their success in moving forward.
Kay
Wednesday, September 12, 2012
Day +140
No news to really report except that Bill is feeling GREAT! It would be absolutely wonderful if he could remain off any kind of drug but unfortunately the monster would continue to take over! Friday he will go in for blood tests and maybe the doctors have come up with a new maintenance plan! We will see......... but in the meantime Bill is enjoying having energy and feeling good! His hair is all back but he likes his new short look so much I took out the trimmer yesterday and buzzed it good! Will post again after Friday!
Friday, August 31, 2012
Day +128
Two steps Forward 3 Steps Backwards.......................
Today Bill had his blood counts checked and all looked pretty good. We then met with his Doctor to discuss what to do about his adverse reaction to the oral drug he was on. No final conclusion as he wants to discuss it further with his transplant Doctor but for now he has discontinued using it. Next we went to the back so he could get is chemo infusion. He has received this drug 13 times with absolutely no adverse effects during infusion but not today....................... Less than 30 minutes into it he looked at me and said he was dizzy. The look on his face told me something was not right. I can not say enough about his chemo nurses Ted and Shelly. They stepped into high gear and immediately took action. Bottom line his blood pressure and heart rate took a nose dive. That was the end of chemo for today. I have learned that each person responds differently to the same drug but I now know that each person can respond differently to the same drug each time they take it! The human body is amazing and such a mystery at times. We had hoped by now things would become just a boring routine but it is looking like the new routine will forever be new challenges presenting themselves. We are so very fortunate to be in the hands of extremely wonderful medical professionals!
The Journey continues.................
Today Bill had his blood counts checked and all looked pretty good. We then met with his Doctor to discuss what to do about his adverse reaction to the oral drug he was on. No final conclusion as he wants to discuss it further with his transplant Doctor but for now he has discontinued using it. Next we went to the back so he could get is chemo infusion. He has received this drug 13 times with absolutely no adverse effects during infusion but not today....................... Less than 30 minutes into it he looked at me and said he was dizzy. The look on his face told me something was not right. I can not say enough about his chemo nurses Ted and Shelly. They stepped into high gear and immediately took action. Bottom line his blood pressure and heart rate took a nose dive. That was the end of chemo for today. I have learned that each person responds differently to the same drug but I now know that each person can respond differently to the same drug each time they take it! The human body is amazing and such a mystery at times. We had hoped by now things would become just a boring routine but it is looking like the new routine will forever be new challenges presenting themselves. We are so very fortunate to be in the hands of extremely wonderful medical professionals!
The Journey continues.................
Monday, August 27, 2012
Day +124
Back to Normal..............
After being off the new chemo drug for 1 week Bill's blood counts are ALL back in the normal range. This is the very first time his Red, White and Platelets are all normal together at the same time!
Friday he will have his Rituxan chemo infusion which lasts after 4 hours. We will also meet with his oncologist and work out a game plan for this other drug that did his immune system in. Bill talked with him briefly about possibly lowering the dosage but he was going to conference with his transplant doctor and get his opinion. It is always reassuring that we have 2 oncologists working together. They always say "two heads are better than one".
Bill has been working from home and leary about making travel plans just yet! We will see what Friday brings.
Molly leaves tomorrow to study in Italy for 4 months. It will definately be a bitter sweet day! We are so excited for her to experience the Italian culture she so dearly loves but we will sure miss seeing that smiling face and be sad she is so far away! She is ready and very capable so I will just leave the rest in God's hands!
Will update again once I know our new drug plan!
After being off the new chemo drug for 1 week Bill's blood counts are ALL back in the normal range. This is the very first time his Red, White and Platelets are all normal together at the same time!
Friday he will have his Rituxan chemo infusion which lasts after 4 hours. We will also meet with his oncologist and work out a game plan for this other drug that did his immune system in. Bill talked with him briefly about possibly lowering the dosage but he was going to conference with his transplant doctor and get his opinion. It is always reassuring that we have 2 oncologists working together. They always say "two heads are better than one".
Bill has been working from home and leary about making travel plans just yet! We will see what Friday brings.
Molly leaves tomorrow to study in Italy for 4 months. It will definately be a bitter sweet day! We are so excited for her to experience the Italian culture she so dearly loves but we will sure miss seeing that smiling face and be sad she is so far away! She is ready and very capable so I will just leave the rest in God's hands!
Will update again once I know our new drug plan!
Monday, August 20, 2012
Day +117
Minor Set Back.................
Bill is extremely disappointed today. (he would tell you just pissed off)
Last week, his first week back to work, after feeling great for 3 weeks ended up getting some type of flu. He spent his first week back to work trying to work while fighting off 4 days of fever, aching and night sweats. We at first thought it was a reaction to his chemo drug but now think it was the flu.
This week was to be his first trip out of town. We went this morning to get his blood counts today and he is neutropenic. That means not only are his white cells so low that his baby white cells are almost too low to count! This all means that if he gets around a germ he can't fight it so............ no air travel or large crowds............he had to call his boss with the news! I know he is VERY worried about jobs and insurance etc. but I also know the dear Lord has a plan we just need to figure it out so we can follow it!
The good news in all of this is that his counts are low because of a drug and not because of the disease. We will put together plan B of a maintenance program and will keep you all posted of this ever changing JOURNEY. I just looked up the definition of "journey". It is the process of development and gradual passing from place to place.
Well I can sure say it is a Process...................
Thank you as always for keeping us in your prayers. I am ever reminded that Bill is a person of great faith and we have all of you praying for him!
Bill is extremely disappointed today. (he would tell you just pissed off)
Last week, his first week back to work, after feeling great for 3 weeks ended up getting some type of flu. He spent his first week back to work trying to work while fighting off 4 days of fever, aching and night sweats. We at first thought it was a reaction to his chemo drug but now think it was the flu.
This week was to be his first trip out of town. We went this morning to get his blood counts today and he is neutropenic. That means not only are his white cells so low that his baby white cells are almost too low to count! This all means that if he gets around a germ he can't fight it so............ no air travel or large crowds............he had to call his boss with the news! I know he is VERY worried about jobs and insurance etc. but I also know the dear Lord has a plan we just need to figure it out so we can follow it!
The good news in all of this is that his counts are low because of a drug and not because of the disease. We will put together plan B of a maintenance program and will keep you all posted of this ever changing JOURNEY. I just looked up the definition of "journey". It is the process of development and gradual passing from place to place.
Well I can sure say it is a Process...................
Thank you as always for keeping us in your prayers. I am ever reminded that Bill is a person of great faith and we have all of you praying for him!
Monday, August 13, 2012
Day +110
NORMAL......
Bill's Red Blood Count was normal today for the very first time!!!!! Today he hit a milestone with this news! White count was also normal today! Platelets have gone down but that was expected with the oral chemo drug he is now on!
The bad news is he is running a low grade fever and feels crappy. He has been so fortunate to have escaped any bugs this past year until now. We are hoping it is just something that will pass quickly.
Today was also his first day back to work! A difficult task after being off for over 4 months and not feeling great! It is wonderful that his office is at home so until be begins traveling again he can get back into it slowly!
Thank you again so very much for the continued prayers, phone calls and good wishes. It means more than I could ever express!
Bill's Red Blood Count was normal today for the very first time!!!!! Today he hit a milestone with this news! White count was also normal today! Platelets have gone down but that was expected with the oral chemo drug he is now on!
The bad news is he is running a low grade fever and feels crappy. He has been so fortunate to have escaped any bugs this past year until now. We are hoping it is just something that will pass quickly.
Today was also his first day back to work! A difficult task after being off for over 4 months and not feeling great! It is wonderful that his office is at home so until be begins traveling again he can get back into it slowly!
Thank you again so very much for the continued prayers, phone calls and good wishes. It means more than I could ever express!
Thursday, August 9, 2012
Day +106
Well............. we are now well over the 100 day mark.
Bill had his 1st round of maintenance Rituxan Chemo last week and all went smoothly. He also has been taking an oral chemo which hasn't gone quite as well.
He has been getting hives the day after he takes it and it appears to be making him very tired. So we may be rethinking this program but we will see what his doctor says.
Our very dear friends from California did a Route 66 road trip and came and spent a few days with us. We laughed and laughed and laughed some more. One of the greatest blessings in life TRUE FRIENDS! Safe journey home, Picco, Carol and Matt!!!!!
Bill is still planning on trying to return to work next week.
I am still looking for work
Molly is studying non stop for her MCAT next Thursday!
Update on our friend Aimee: Biopsy results show Leukemia free!!!!!!!!!!!!!!!!!!!!!!!!!!! and her bone marrow is now more than 98% donor which is as good as it gets!!!!! Thank you God!
Bill had his 1st round of maintenance Rituxan Chemo last week and all went smoothly. He also has been taking an oral chemo which hasn't gone quite as well.
He has been getting hives the day after he takes it and it appears to be making him very tired. So we may be rethinking this program but we will see what his doctor says.
Our very dear friends from California did a Route 66 road trip and came and spent a few days with us. We laughed and laughed and laughed some more. One of the greatest blessings in life TRUE FRIENDS! Safe journey home, Picco, Carol and Matt!!!!!
Bill is still planning on trying to return to work next week.
I am still looking for work
Molly is studying non stop for her MCAT next Thursday!
Update on our friend Aimee: Biopsy results show Leukemia free!!!!!!!!!!!!!!!!!!!!!!!!!!! and her bone marrow is now more than 98% donor which is as good as it gets!!!!! Thank you God!
Friday, July 27, 2012
Day +94
Bill is still doing GREAT!
Hair is growing back and needs to shave! Taking a little rest on the couch (probably watching a game show or 2)
He and I went to a small par 3 golf course Wednesday to see how he would do! It was not a smart day to go out given that the heat index was so high! But non the less we took out a cart, I drove and he play about 10 holes.
Thursday he went out on his own and played the short course again this time 18 holes, of course, with a cart! His goal is to play 18 on a more challenging course without the cart! I know he will attain his goal, may be not this season but in many to come!
Monday he will get his first round of the targeted drug Rituxan and hopefully the insurance has approved his oral drug. These together will keep the monster at bay!
He has decided to make some fleece blankets to take to the Chemo Center. He always took one that Molly made him because he always got so cold. It was very fun to see him working with fabric and it turned out great!
He is still planning on returning to work on August 13th. His first trip out, to Atlanta, at the end of the month I will go along.
Update on other issues:
Our newest friends we met at Northwestern:
Scott is home in Wisconsin, just celebrated his 50th Birthday, Leukemia free and doing great!
Don is also doing great! He, like Bill, received his own stem cells and his test results are showing he is in complete remission! We met him and his wife, Sue, for Coffee last week to catch up and compare notes!
Aimee is home in Chicago. We met her at the clinic last week for a real hug and to catch up in person! She was struggling with severe fatigue but they adjusted some of her meds and she is doing much MUCH better! She had her Biopsy this week so we are anxiously awaiting some good news!
House still on the market with not much activity! We have lowered the price as much as possible and St. Joseph is buried! Not much else we can do!
Molly is studying 6-8 hours per day getting ready for the MCAT on August 16th. Please keep her in your prayers! Her nails are getting shorter and shorter!
I am still looking for employment, enjoying being home with Bill and Molly and trying to loose a few pounds!
Our very dear friends from California are setting out tomorrow driving Route 66 to see us!!!! Can't wait!!!!!!!
We continue to be so so BLESSED!
Thanks for keeping up with this crazy Journey and please know that ALL of you remain in our prayers!
Hair is growing back and needs to shave! Taking a little rest on the couch (probably watching a game show or 2)
He and I went to a small par 3 golf course Wednesday to see how he would do! It was not a smart day to go out given that the heat index was so high! But non the less we took out a cart, I drove and he play about 10 holes.
Thursday he went out on his own and played the short course again this time 18 holes, of course, with a cart! His goal is to play 18 on a more challenging course without the cart! I know he will attain his goal, may be not this season but in many to come!
Monday he will get his first round of the targeted drug Rituxan and hopefully the insurance has approved his oral drug. These together will keep the monster at bay!
He has decided to make some fleece blankets to take to the Chemo Center. He always took one that Molly made him because he always got so cold. It was very fun to see him working with fabric and it turned out great!
He is still planning on returning to work on August 13th. His first trip out, to Atlanta, at the end of the month I will go along.
Update on other issues:
Our newest friends we met at Northwestern:
Scott is home in Wisconsin, just celebrated his 50th Birthday, Leukemia free and doing great!
Don is also doing great! He, like Bill, received his own stem cells and his test results are showing he is in complete remission! We met him and his wife, Sue, for Coffee last week to catch up and compare notes!
Aimee is home in Chicago. We met her at the clinic last week for a real hug and to catch up in person! She was struggling with severe fatigue but they adjusted some of her meds and she is doing much MUCH better! She had her Biopsy this week so we are anxiously awaiting some good news!
House still on the market with not much activity! We have lowered the price as much as possible and St. Joseph is buried! Not much else we can do!
Molly is studying 6-8 hours per day getting ready for the MCAT on August 16th. Please keep her in your prayers! Her nails are getting shorter and shorter!
I am still looking for employment, enjoying being home with Bill and Molly and trying to loose a few pounds!
Our very dear friends from California are setting out tomorrow driving Route 66 to see us!!!! Can't wait!!!!!!!
We continue to be so so BLESSED!
Thanks for keeping up with this crazy Journey and please know that ALL of you remain in our prayers!
Friday, July 20, 2012
Day +87
Progress.................Progress......................Progress!!!!!!!!!!!!
Each day Bill gets a little bit stronger, a little less tired and a little more like his old self!
Yesterday Molly and I took him out to the driving range and we all shared a bucket of balls! He did Great, Molly did Amazing and well........ we won't talk about my results! haha It finally cooled off a bit so it was a very nice time!
Today we made the full circle back to Bill's original oncologist! He will be handling his after transplant followup! We are waiting for the insurance company to approve a new oral drug that will continue to target the little bit of cancer still left in his bone marrow. Since his type of cancer is very VERY rare there are very few drug protocols for Waldenstrom. This drug is extremely expensive because it is still considered new on the market and currently used for a similar cancer to his so our doctor may have to convince them. We are not concerned as the insurance so far has been fabulous!
So the plan is:
Oral drug Revlimid 3 times per week
Infusion of Rituxan 1 time per month (takes about 4-5 hours)
He will do this for the next six months. At that point his two doctors will evaluate and then we see where we go from there!!!.
Bill is planning to return to work on August 13th. We are still trying to sell the house and planning to move more toward retirement at least for him, Insurance right now is what is dictating some of our decisions.
Each day it seems more and more things continue to move in the right direction and we are so thankful for God's continued blessings!
Each day Bill gets a little bit stronger, a little less tired and a little more like his old self!
Yesterday Molly and I took him out to the driving range and we all shared a bucket of balls! He did Great, Molly did Amazing and well........ we won't talk about my results! haha It finally cooled off a bit so it was a very nice time!
Today we made the full circle back to Bill's original oncologist! He will be handling his after transplant followup! We are waiting for the insurance company to approve a new oral drug that will continue to target the little bit of cancer still left in his bone marrow. Since his type of cancer is very VERY rare there are very few drug protocols for Waldenstrom. This drug is extremely expensive because it is still considered new on the market and currently used for a similar cancer to his so our doctor may have to convince them. We are not concerned as the insurance so far has been fabulous!
So the plan is:
Oral drug Revlimid 3 times per week
Infusion of Rituxan 1 time per month (takes about 4-5 hours)
He will do this for the next six months. At that point his two doctors will evaluate and then we see where we go from there!!!.
Bill is planning to return to work on August 13th. We are still trying to sell the house and planning to move more toward retirement at least for him, Insurance right now is what is dictating some of our decisions.
Each day it seems more and more things continue to move in the right direction and we are so thankful for God's continued blessings!
Monday, July 2, 2012
Day + 69 A Day to Celebrate
A Day to Celebrate.
We received the results of Bill's biopsy. His cancer is now detected in less than 5 % of his bone marrow!!!!!!!!!
YAY!!!!!!!!!!!
When this Journey began is bone marrow was 90 % cancer. The intensive chemo knocked out a huge portion of it and the transplant took care of almost all of it. So YES he is now considered in REMISSION!
He now begins the maintenance part of the journey to keep him in this state of remission for a long LONG time.
Thank you Thank you Thank you for all the positive vibes and prayers!!!!
I have felt such a strong connection as a result of keeping this blog. You reading it has and continues to give us all strength in so many many ways. I plan on continuing to post updates but PLEASE bear with me as they may be simply what we had for dinner!
We received the results of Bill's biopsy. His cancer is now detected in less than 5 % of his bone marrow!!!!!!!!!
YAY!!!!!!!!!!!
When this Journey began is bone marrow was 90 % cancer. The intensive chemo knocked out a huge portion of it and the transplant took care of almost all of it. So YES he is now considered in REMISSION!
He now begins the maintenance part of the journey to keep him in this state of remission for a long LONG time.
Thank you Thank you Thank you for all the positive vibes and prayers!!!!
I have felt such a strong connection as a result of keeping this blog. You reading it has and continues to give us all strength in so many many ways. I plan on continuing to post updates but PLEASE bear with me as they may be simply what we had for dinner!
Saturday, June 30, 2012
Day +67
LESS AND MORE...........
LESS
napping
tiredness
bruising
fear of being around too many people
MORE
getting out
energy
walking
hair
hope
thankfulness
As this journey continues we realize it is just part of the bigger picture! Life brings us all many ups and downs but it is how we face them that can make a difference. So Much easier to handle the ups but because of all the LOVE, SUPPORT and PRAYERS the difficulties of this past year have brought us many blessings, that have made everything so much easier.
Monday we will be getting the results of Bill's bone marrow biopsy. This will tell us exactly how well the transplant worked. We hope and pray to hear the word REMISSION! Regardless of the results it will put this part of the journey behind us so we can move forward and continue to plan for the future.
Thank you for all the continued prayers. It means so very very much.
LESS
napping
tiredness
bruising
fear of being around too many people
MORE
getting out
energy
walking
hair
hope
thankfulness
As this journey continues we realize it is just part of the bigger picture! Life brings us all many ups and downs but it is how we face them that can make a difference. So Much easier to handle the ups but because of all the LOVE, SUPPORT and PRAYERS the difficulties of this past year have brought us many blessings, that have made everything so much easier.
Monday we will be getting the results of Bill's bone marrow biopsy. This will tell us exactly how well the transplant worked. We hope and pray to hear the word REMISSION! Regardless of the results it will put this part of the journey behind us so we can move forward and continue to plan for the future.
Thank you for all the continued prayers. It means so very very much.
Friday, June 22, 2012
Day +59
Biopsy yesterday went well! This was the first one at Northwestern and Bill was very happy!!!!! Not only did he have his usual anti-anxiety drugs but they gave him some iv pain meds. When he was all finished he was a BIT woosie!!!! We let him sleep some of it off before I tried getting him to the car! Jenny received an A+ for her excellent care of Bill. They also have a lab technician there who makes the slides right on the spot as well as an additional nurse practitioner for an extra set of hands. We are so very very blessed in having Northwestern for his care.
Now................ we wait until week after next for the results!
Tonight Bill and I are participating in a RELAY FOR LIFE event! Molly was the Fundraising chairman at her University, Xavier, for their event this past spring and is now volunteering at various other RELAY FOR LIFE events over the summer. She encouraged us so we are going to walk the survivor lap at the opening ceremonies!!!!!!!!!!! Thanks Molly for your commitment in not only fighting for a cancer cure but in your dedication to helping others and making our world a better place!
Now................ we wait until week after next for the results!
Tonight Bill and I are participating in a RELAY FOR LIFE event! Molly was the Fundraising chairman at her University, Xavier, for their event this past spring and is now volunteering at various other RELAY FOR LIFE events over the summer. She encouraged us so we are going to walk the survivor lap at the opening ceremonies!!!!!!!!!!! Thanks Molly for your commitment in not only fighting for a cancer cure but in your dedication to helping others and making our world a better place!
Wednesday, June 20, 2012
Day + 57
Sorry I have not posted in awhile but we don't have too much going on! Bill seems to be getting back to his old self a little more each day!. Tomorrow he goes for his bone marrow biopsy. Not a pleasant procedure so he gets pretty nervous each time. We have drugs to help him through it! Then we wait................. until July 3rd for the results. This biopsy will tell us exactly the extent of the cancer. We are praying for complete remission. It will be a very long week+ so I will try and keep him as busy as his energy permits.
We have had only 1 showing of our house. Not a big surprise and the feedback is exactly what we already knew......over priced and no basement! We are loosing a ton at this price so not sure how much more we can lower it and I can't dig a basement so........ someone will have to come along like us who don't care about basements and love the big windows and backing up to nothing!
Molly is studying like crazy for her MCAT in August as well as busy working and shadowing a pediatrician this summer......busy busy girl!
I have decided I have no more excuses for not exercising so I am trying....... we will see how long I can keep up with it.
Thank you for keeping us all in your prayers. It truly keeps us going knowing how many people are supporting us emotionally and spiritually.
Kay
We have had only 1 showing of our house. Not a big surprise and the feedback is exactly what we already knew......over priced and no basement! We are loosing a ton at this price so not sure how much more we can lower it and I can't dig a basement so........ someone will have to come along like us who don't care about basements and love the big windows and backing up to nothing!
Molly is studying like crazy for her MCAT in August as well as busy working and shadowing a pediatrician this summer......busy busy girl!
I have decided I have no more excuses for not exercising so I am trying....... we will see how long I can keep up with it.
Thank you for keeping us all in your prayers. It truly keeps us going knowing how many people are supporting us emotionally and spiritually.
Kay
Monday, June 11, 2012
Day + 48
Out in the Public.............
Bill went to church yesterday for the first time in many weeks!!!! It was indeed a very special day as after mass they had an adoration procession for the feast of Corpus Christi. One of the many blessings we discovered shortly after his diagnosis was the adoration chapel at our parish. It was something we knew existed but like so many things we took it for granted and never took the time to visit. It became a frequent stop for us either before or after doctor visits and provided both of us with great peace.
He had his blood draw today and platelets and white cells are still on the rise!!! Red counts are proving to be VERY stubborn but holding steady!
On the way home we picked up his bike at the bike shop after having it tuned up! New chain, new brakes, plenty of air in the tires and clean of cob webs so he is all set! It made me VERY nervous to see him ride it home the 2 blocks.........he made it all the way to the bottom of our hill. That took some walking to get it home but he made it home safe and sound and seems to be really looking forward to his evening rides with Molly! Over the past many years during the summer they would ride to the candy store every night on their bikes! Since our local candy store is now closed I am hoping for a healthier destination and know he will be in good hands with Molly by his side!
Bill went to church yesterday for the first time in many weeks!!!! It was indeed a very special day as after mass they had an adoration procession for the feast of Corpus Christi. One of the many blessings we discovered shortly after his diagnosis was the adoration chapel at our parish. It was something we knew existed but like so many things we took it for granted and never took the time to visit. It became a frequent stop for us either before or after doctor visits and provided both of us with great peace.
He had his blood draw today and platelets and white cells are still on the rise!!! Red counts are proving to be VERY stubborn but holding steady!
On the way home we picked up his bike at the bike shop after having it tuned up! New chain, new brakes, plenty of air in the tires and clean of cob webs so he is all set! It made me VERY nervous to see him ride it home the 2 blocks.........he made it all the way to the bottom of our hill. That took some walking to get it home but he made it home safe and sound and seems to be really looking forward to his evening rides with Molly! Over the past many years during the summer they would ride to the candy store every night on their bikes! Since our local candy store is now closed I am hoping for a healthier destination and know he will be in good hands with Molly by his side!
Saturday, June 9, 2012
Day + 46
Surprise Surprise...............
Nothing is better than an unspoiled surprise. Bill's sister Barbara from Arizona came in to surprise Bill for his birthday "63"!!!!
He was totally shocked!!!!!!! What a wonderful few days of relaxing, laughing, and reminiscing!
Everyday seems to be getting better and better!
Nothing is better than an unspoiled surprise. Bill's sister Barbara from Arizona came in to surprise Bill for his birthday "63"!!!!
He was totally shocked!!!!!!! What a wonderful few days of relaxing, laughing, and reminiscing!
Everyday seems to be getting better and better!
Monday, June 4, 2012
Day +41
NORMAL!!!!!!!
White Blood Count today was 3.5 which is is the "Normal" RangeAbsolute Neutrophils are also normal!!!!
Translation = Bill now has an immune system back in place.
Red Blood Count and Platelets are still below normal but much higher than when this Journey began.......
We now wait 3 weeks and then they will do another Bone Marrow Biopsy to see where the disease is after the transplant.
The waiting is always the difficult part but today is definitely a day to CELEBRATE!
Today we thank God and celebrate Bill's progress and for all of the amazing family and friends who continue to strengthen us on this Journey!
Saturday, June 2, 2012
Day +39
New Milestones....................
Bill got on the treadmill today and walked 1 mile, a new milestone!
Yesterday I left my position after 6 VERY long years......... now looking to do something worthwhile!
Possibly in Cleveland????
Just listed our house..........should be interesting with the housing market the way it is.
Bill got on the treadmill today and walked 1 mile, a new milestone!
Yesterday I left my position after 6 VERY long years......... now looking to do something worthwhile!
Possibly in Cleveland????
Just listed our house..........should be interesting with the housing market the way it is.
Wednesday, May 30, 2012
Day + 36
"Patience is a Virtue"........
These words I heard over and over again growing up from my Mother! I am so very grateful to her for teaching me how in the heat of a moment or while facing difficulty to take a deep breath!
Some of Bill's numbers today took another slight dip! In today's world of immediate gratification, I am so reminded of her reassuring voice " take a deep breath and remember all in God's time not ours"!
Thanks mom, for your wonderful example of a strong woman despite being in the midst of dealing with great challenges!
These words I heard over and over again growing up from my Mother! I am so very grateful to her for teaching me how in the heat of a moment or while facing difficulty to take a deep breath!
Some of Bill's numbers today took another slight dip! In today's world of immediate gratification, I am so reminded of her reassuring voice " take a deep breath and remember all in God's time not ours"!
Thanks mom, for your wonderful example of a strong woman despite being in the midst of dealing with great challenges!
Monday, May 28, 2012
Day +34
We have had a couple of nice relaxing days at home. Bill got on the treadmill for a few minutes today.
Molly fixed a nice dinner tonight in celebration of our 24th Anniversary! Amazing how fast 24 years can go!!!!
Molly fixed a nice dinner tonight in celebration of our 24th Anniversary! Amazing how fast 24 years can go!!!!
Wednesday, May 23, 2012
Day +29
Northwestern Visit...............
Platelets up to 49,000 White up to 2.9 Red holding at 10.7
Bill is inching his way toward normal.........
Next blood check in 7 days Next Doctor visit in 14 days Next Biopsy in about 30 days
Platelets up to 49,000 White up to 2.9 Red holding at 10.7
Bill is inching his way toward normal.........
Next blood check in 7 days Next Doctor visit in 14 days Next Biopsy in about 30 days
Monday, May 21, 2012
Day +27
Happy Monday...........
White count up a little more which means Bill's immune system is coming back. Red count stayed basically the same down 1/10 of a percent and his platelets went up a few thousand.
So all in all still headed in the right direction. Next check will be on Wednesday with Dr. Mehta at Northwestern!
Saturday, May 19, 2012
Day +25
Dream day…
Bill woke up feeling pretty great! Molly and I are enjoying the gift Bill gave me for Mothers Day.
Lunch at the Walnut Room, Jersey Boys and dessert at Grahams 318! How spoiled and truly blessed I am to have such an amazing and thoughtful husband!
Bill woke up feeling pretty great! Molly and I are enjoying the gift Bill gave me for Mothers Day.
Lunch at the Walnut Room, Jersey Boys and dessert at Grahams 318! How spoiled and truly blessed I am to have such an amazing and thoughtful husband!
Friday, May 18, 2012
Day +24
Bit by Bit.............
White count up a bit
Red count up a bit
Platelets down a bit (but not low enough for a transfusion)
As my friend Betty reminds me....... Slow and steady wins the race!!!!! Things are going in the right direction. Platelets we expected to be down because they take the longest to kick back into gear.
So next check will be on Monday and then Wednesday we will go back to Northwestern for a more comprehensive check!
Thanks for keeping those positive thoughts coming!!!!!
Hope you all have a wonderful, relaxing and blessed weekend!!!!!!!
White count up a bit
Red count up a bit
Platelets down a bit (but not low enough for a transfusion)
As my friend Betty reminds me....... Slow and steady wins the race!!!!! Things are going in the right direction. Platelets we expected to be down because they take the longest to kick back into gear.
So next check will be on Monday and then Wednesday we will go back to Northwestern for a more comprehensive check!
Thanks for keeping those positive thoughts coming!!!!!
Hope you all have a wonderful, relaxing and blessed weekend!!!!!!!
Wednesday, May 16, 2012
Day +22
Went for more blood tests................ I think this is going to be the new story of our lives.
Everything is basically holding steady! We would like to see a continual up swing but know that may take some time! We did get a chance to visit today with Bill's original Chemo nurses, Ted, Lisa, Shelly and Janet. For many weeks we were seeing them each and every week, so it was nice to catch up with them.
Will keep you posted on Friday's blood results!!
Everything is basically holding steady! We would like to see a continual up swing but know that may take some time! We did get a chance to visit today with Bill's original Chemo nurses, Ted, Lisa, Shelly and Janet. For many weeks we were seeing them each and every week, so it was nice to catch up with them.
Will keep you posted on Friday's blood results!!
Monday, May 14, 2012
Day +20
First Out-Patient Checkup after Transplant................
Went into the city today for the first out patient followup after transplant. Labs were interesting....Hemoglobin is the highest it has ever been since beginning this journey. 11.0!!!!!!!!!
White count is 2.0, platelets were at 12. Bill then saw Dr. Mehta and everything looks good except platelets. Those are always the slowest to start functioning again. We then went for a followup with the Allergist. They have now labeled him as allergic to 5 different drugs although they really don't know which drug he reacted to. After that we went to the Blood Center so he could get his transfusion of platelets. It was a long day..... left at 9 this morning and returned home at 5 pm.
He will have his labs drawn locally on Wed, Fri and Mon. We will then return to see Dr. Mehta next Week on Wednesday. We all agreed to not try and get into the city next Monday because of the NATO Summit!!
So everything is still moving in the right direction!!!!!!!!!!!!!
When we arrived home a lovely box was on our front porch from one of our Arizona Angels!!!!!!!!!!!!!!!! filled with amazing and thoughtful items. We are continued to be blessed with angels watching over us!!!!
Went into the city today for the first out patient followup after transplant. Labs were interesting....Hemoglobin is the highest it has ever been since beginning this journey. 11.0!!!!!!!!!
White count is 2.0, platelets were at 12. Bill then saw Dr. Mehta and everything looks good except platelets. Those are always the slowest to start functioning again. We then went for a followup with the Allergist. They have now labeled him as allergic to 5 different drugs although they really don't know which drug he reacted to. After that we went to the Blood Center so he could get his transfusion of platelets. It was a long day..... left at 9 this morning and returned home at 5 pm.
He will have his labs drawn locally on Wed, Fri and Mon. We will then return to see Dr. Mehta next Week on Wednesday. We all agreed to not try and get into the city next Monday because of the NATO Summit!!
So everything is still moving in the right direction!!!!!!!!!!!!!
When we arrived home a lovely box was on our front porch from one of our Arizona Angels!!!!!!!!!!!!!!!! filled with amazing and thoughtful items. We are continued to be blessed with angels watching over us!!!!
Sunday, May 13, 2012
Day +19
Remarkable and Unremarkable........
Recently I learned the medical terminology of unremarkable meaning "nothing to worry or be concerned about". Today seemed to be pretty unremarkable for Bill. He is still sleeping a lot but seems to be getting stronger every day. We walked this afternoon down AND around the corner!
It was an extremely remarkable day for me in the good sense! Bill getting stronger and looking healthier. Lovely day at church with Molly, very thought filled gifts from all my children. Texts or calls from everyone! A day to give thanks for so many REMARKABLE people in our lives!
Thank you Lord for a beautiful, beautiful day!
Saturday, May 12, 2012
Day +18
Battle Zone!
This was the projected day for Bill to come home so we are grateful he was able to leave the hospital a few days early! It is difficult to be home though without the safety net of all the nurses keeping their eye on him! He has been getting light headed in the mornings which worries me! We monitor his blood pressure which seems ok. His heart rate is still low( in the 40's) so that may be the culprit. Cardiology said nothing to worry about (easy for them to say). This morning the sheets looked like a battle zone. His platelets were 22 on Thursday so my guess is they are now back into the single digits. He has a skin tear on in arm and scratch on his hand. For the rest of us these would just scab over but his lack of clotting ability just keeps them oozing! Molly said we should have stock in Bleach the way I am constantly bleaching everything!!!!! I will be glad when Monday comes and we go back to Northwestern for his first followup!
This was the projected day for Bill to come home so we are grateful he was able to leave the hospital a few days early! It is difficult to be home though without the safety net of all the nurses keeping their eye on him! He has been getting light headed in the mornings which worries me! We monitor his blood pressure which seems ok. His heart rate is still low( in the 40's) so that may be the culprit. Cardiology said nothing to worry about (easy for them to say). This morning the sheets looked like a battle zone. His platelets were 22 on Thursday so my guess is they are now back into the single digits. He has a skin tear on in arm and scratch on his hand. For the rest of us these would just scab over but his lack of clotting ability just keeps them oozing! Molly said we should have stock in Bleach the way I am constantly bleaching everything!!!!! I will be glad when Monday comes and we go back to Northwestern for his first followup!
Friday, May 11, 2012
Day +17
No News is Good News............
I really have nothing much to report today. Bill continues to rest a great deal. He is beginning to adapt to his new life style of relaxing. Initially it was difficult for him to realize he can not start cleaning the kitchen, do the laundry, or take out the trash. I assured him once his immune system is back I will GLADLY let him take back all of the household chores! I keep using July 1st as an arbitrary date but we will see! I am so extremely grateful for Molly. She has been truly amazing in stepping up to help. We continue to be Blessed in so many ways!!!!
I really have nothing much to report today. Bill continues to rest a great deal. He is beginning to adapt to his new life style of relaxing. Initially it was difficult for him to realize he can not start cleaning the kitchen, do the laundry, or take out the trash. I assured him once his immune system is back I will GLADLY let him take back all of the household chores! I keep using July 1st as an arbitrary date but we will see! I am so extremely grateful for Molly. She has been truly amazing in stepping up to help. We continue to be Blessed in so many ways!!!!
Thursday, May 10, 2012
Day +16
Yesterday was a Beautiful Day........
The sun was shinning when Bill got his first breath of fresh air after almost three weeks locked on the 15th floor of Prentice Hospital.
We arrived home about 3:00 p.m.
Drove up to a beautifully manicured yard compliments of our amazing neighbor, John.
Greeted by our 4 legged friend, Maxwell all happy and groomed compliments of Pat and Elaine, more neighbors and friends and Molly our amazing daughter.
Walked into a clean and organized house compliments of our amazing daughter, Molly.
Had a delicious home cooked meal prepared by again of our amazing Molly.
Complete with one of her delicious cakes!!!!!
Today Bill slept in late then we headed to get his blood draw from our local oncology office. A bit of a confusion as to which tests needed to be run. Linda, Bill's favorite phlebotomist, took enough tubs to cover everything. I then called the transplant team so hopefully we now have that covered for next week. His hemoglobin went UP! TO 10.1 and this is without a transfusion yesterday! Platelets at 22 which is a bit low considering he had 2 units transfused yesterday. Hoping they will hold up until Monday when we head back into the city.
He was able to stay awake for the Family Feud so is napping now getting ready for dinner and Wheel of Fortune!
All in all a pretty darn good day!!!!!
I just received a text from Aimee's husband. She is Day +8 today and he said had a very rough day! The good news for her is Justin, her husband, is now well and able to be by her side! Please keep those prayers coming for Aimee to get through these very rough days quickly and start seeing her numbers go up!!!!!!
Kay
The sun was shinning when Bill got his first breath of fresh air after almost three weeks locked on the 15th floor of Prentice Hospital.
We arrived home about 3:00 p.m.
Drove up to a beautifully manicured yard compliments of our amazing neighbor, John.
Greeted by our 4 legged friend, Maxwell all happy and groomed compliments of Pat and Elaine, more neighbors and friends and Molly our amazing daughter.
Walked into a clean and organized house compliments of our amazing daughter, Molly.
Had a delicious home cooked meal prepared by again of our amazing Molly.
Complete with one of her delicious cakes!!!!!
Today Bill slept in late then we headed to get his blood draw from our local oncology office. A bit of a confusion as to which tests needed to be run. Linda, Bill's favorite phlebotomist, took enough tubs to cover everything. I then called the transplant team so hopefully we now have that covered for next week. His hemoglobin went UP! TO 10.1 and this is without a transfusion yesterday! Platelets at 22 which is a bit low considering he had 2 units transfused yesterday. Hoping they will hold up until Monday when we head back into the city.
He was able to stay awake for the Family Feud so is napping now getting ready for dinner and Wheel of Fortune!
All in all a pretty darn good day!!!!!
I just received a text from Aimee's husband. She is Day +8 today and he said had a very rough day! The good news for her is Justin, her husband, is now well and able to be by her side! Please keep those prayers coming for Aimee to get through these very rough days quickly and start seeing her numbers go up!!!!!!
Kay
Wednesday, May 9, 2012
Day +15
GOING HOME!!!!!!!!!!!!!!
The team just came in!!! After examining Bill, Dr. Mehta started walking out and said "see you tomorrow" then turned around with a big grin!!!!! Nice to have a Doctor who is really smart, personable and with a sense of humor.
They are going to give him 2 units of platelets this morning to tank him up before leaving. So breakfast, platelets, good byes to the amazing medical staff and some of our new patient friends. We are leaving behind Scott and Aimie who are Day +7 and Don day +6.
Hoping when they see Bill going home it will encourage them as they bottom out and struggle with the side effects.
I can not adequately put in to words how this experience has changed our lives. It has been difficult, emotional, scary, etc but it has also been a blessing. We have been blessed with so much love and support, we have seen the goodness in some many people, God has provided us strength and the realization of how very fortunate we are. Thank you seems so trite but we both thank you from the bottom of our hearts for your continued prayers and love as we now move into the next phase of Bill's Journey.
Bill and Kay
The team just came in!!! After examining Bill, Dr. Mehta started walking out and said "see you tomorrow" then turned around with a big grin!!!!! Nice to have a Doctor who is really smart, personable and with a sense of humor.
They are going to give him 2 units of platelets this morning to tank him up before leaving. So breakfast, platelets, good byes to the amazing medical staff and some of our new patient friends. We are leaving behind Scott and Aimie who are Day +7 and Don day +6.
Hoping when they see Bill going home it will encourage them as they bottom out and struggle with the side effects.
I can not adequately put in to words how this experience has changed our lives. It has been difficult, emotional, scary, etc but it has also been a blessing. We have been blessed with so much love and support, we have seen the goodness in some many people, God has provided us strength and the realization of how very fortunate we are. Thank you seems so trite but we both thank you from the bottom of our hearts for your continued prayers and love as we now move into the next phase of Bill's Journey.
Bill and Kay
Tuesday, May 8, 2012
Day +14
Good News:
His white count with the help of Neupogen is 2.1
He is coming off all IV medication because he can now swallow well.
His rash is improving
His toe is looking better.
He is back to watching his game shows!
Not so Good News:
We have decided to stay at least one more day.
His heart rate is still low with some dipping into the 30's (getting a cardiology consult today)
He needs a platelet transfusion
So today we will get all our ducks in a row for going home!
His white count with the help of Neupogen is 2.1
He is coming off all IV medication because he can now swallow well.
His rash is improving
His toe is looking better.
He is back to watching his game shows!
Not so Good News:
We have decided to stay at least one more day.
His heart rate is still low with some dipping into the 30's (getting a cardiology consult today)
He needs a platelet transfusion
So today we will get all our ducks in a row for going home!
Monday, May 7, 2012
Day +13 Add On
Well a bit of a glitch today!
Bill's heart rate dipped a bit so now they are hooking him up to a portable EKG that someone is monitoring at all times. This may delay going home but it is very reassuring to double check that everything is good to go before going home!!! My guess is that with all the pre meds they give him before transfusions he is just VERY relaxed!
Will keep you posted!
Bill's heart rate dipped a bit so now they are hooking him up to a portable EKG that someone is monitoring at all times. This may delay going home but it is very reassuring to double check that everything is good to go before going home!!! My guess is that with all the pre meds they give him before transfusions he is just VERY relaxed!
Will keep you posted!
Day +13
GREAT NEWS!!!!! white count .8 so we are 75% sure we will be homeward bound tomorrow!!!!
The rash has gotten a bit better where it started and a bit worse where it is traveling. They believe it will continue to resolve with the help of steroids and the fact his white count is going up.
They are giving him transfusions all day today in anticipation of leaving tomorrow and lasic to get rid of some of the fluids.
We are going to meet with the discharge coordinator to make sure I have the right meds to take home since they have changed them frequently due to the rash.
Since he needs blood draws every other day I also need to make sure we have that in place before leaving.
Chaplin Jeannie just stopped by because she heard the good news. She saw the concern about leaving our well monitored environment on my face but assured me they are all only a phone call away!
I know Bill can't wait to sleep in his own bed.
Thank you again and again and again for all the prayers that have helped get him through this phase. As we transition back home I will continue to blog as frequently as there is something to report. It is my hope and prayer that as time goes on I will have less and less to report but will always keep any information flowing. We will ALWAYS hold each and everyone of you deep within our hearts and in our daily prayers of Thanksgiving!
Love,
Bill and Kay
The rash has gotten a bit better where it started and a bit worse where it is traveling. They believe it will continue to resolve with the help of steroids and the fact his white count is going up.
They are giving him transfusions all day today in anticipation of leaving tomorrow and lasic to get rid of some of the fluids.
We are going to meet with the discharge coordinator to make sure I have the right meds to take home since they have changed them frequently due to the rash.
Since he needs blood draws every other day I also need to make sure we have that in place before leaving.
Chaplin Jeannie just stopped by because she heard the good news. She saw the concern about leaving our well monitored environment on my face but assured me they are all only a phone call away!
I know Bill can't wait to sleep in his own bed.
Thank you again and again and again for all the prayers that have helped get him through this phase. As we transition back home I will continue to blog as frequently as there is something to report. It is my hope and prayer that as time goes on I will have less and less to report but will always keep any information flowing. We will ALWAYS hold each and everyone of you deep within our hearts and in our daily prayers of Thanksgiving!
Love,
Bill and Kay
Day +12
Sorry this is getting posted the day after. Yesterday was busy white count went up to .3. So Dr. Mehta said if white count continues to go up and no other complications Bill can probably come home early in the week. I panicked a bit because I still had not had the carpet cleaned. I jumped on the train back to Geneva to get the house ready! So all the linens are washed, every surface disinfected, and carpets cleaned. I brought the car back so will be be ready to leave! Molly drove home last night! SOOOOOOO glad she is home! Put a GIANT smile on Bill's face!
Saturday, May 5, 2012
Day +11
Upward Bound..........but a Rash of a Day!!!!
When the team made rounds this morning Dr. Mehta walked in with a big smile and said well your white cell count has improved 100%. Yesterday he was .1 today .2!!!!! Normal is between 3.5 and 10.5 so there is a way to go. His platelets were down to 10 and Hemoglobin up to 9.5. These are distorted numbers since he has been receiving transfusions so they really are not his cells we are counting but the donor's cells. All of his neutrophils, lymphocytes, etc are still tltc (too low to count).
Today's major challenge is his rash. He has had a small rash on and off for about 4 days. They have changed his antibiotics several times. This morning it was taking over his neck and upper back. The team feels confident it is a reaction to a drug but trying to determine which one may take some doing. By noon today the rash has taken over completely covering his head, chest and arms and back to the point where his back is completely one red blotch. They are loading him with IV Benadryl and increased his dosage on his pain meds for the throat ulcers so he is sleeping a lot. This is a good thing to help pass the time quickly.
Hospital Allergist just came and now she is going to speak to the attending physician and together they will make a recommendation to the transplant team of which medication to stop. The balancing act here is to find another medication to cover the same bacteria group. Hopefully they figure this out soon! The good news is they have him so loaded with antihistamines so he is not scratching so they not too worried about this becoming an infection yet.
Here is some stem cell transplant trivia:
The preservative they use to freeze the stem cells has a VERY strange smell. It is referred to as Creamed Corn. The really strange thing is this smell stays with the recipient for about 24hours. The entire room reeks of this smell but the person can not smell it themselves. When we are walking the halls is is very obvious passing each room who just received a new immune system! People receiving donor transplants are very lucky if their donor is local and the cells do not need to be frozen saving those around them from this unusual odor!
Bill is all comfy in bed under his blanket awaiting the Kentucky Derby!!!!!
When the team made rounds this morning Dr. Mehta walked in with a big smile and said well your white cell count has improved 100%. Yesterday he was .1 today .2!!!!! Normal is between 3.5 and 10.5 so there is a way to go. His platelets were down to 10 and Hemoglobin up to 9.5. These are distorted numbers since he has been receiving transfusions so they really are not his cells we are counting but the donor's cells. All of his neutrophils, lymphocytes, etc are still tltc (too low to count).
Today's major challenge is his rash. He has had a small rash on and off for about 4 days. They have changed his antibiotics several times. This morning it was taking over his neck and upper back. The team feels confident it is a reaction to a drug but trying to determine which one may take some doing. By noon today the rash has taken over completely covering his head, chest and arms and back to the point where his back is completely one red blotch. They are loading him with IV Benadryl and increased his dosage on his pain meds for the throat ulcers so he is sleeping a lot. This is a good thing to help pass the time quickly.
Hospital Allergist just came and now she is going to speak to the attending physician and together they will make a recommendation to the transplant team of which medication to stop. The balancing act here is to find another medication to cover the same bacteria group. Hopefully they figure this out soon! The good news is they have him so loaded with antihistamines so he is not scratching so they not too worried about this becoming an infection yet.
Here is some stem cell transplant trivia:
The preservative they use to freeze the stem cells has a VERY strange smell. It is referred to as Creamed Corn. The really strange thing is this smell stays with the recipient for about 24hours. The entire room reeks of this smell but the person can not smell it themselves. When we are walking the halls is is very obvious passing each room who just received a new immune system! People receiving donor transplants are very lucky if their donor is local and the cells do not need to be frozen saving those around them from this unusual odor!
Bill is all comfy in bed under his blanket awaiting the Kentucky Derby!!!!!
Friday, May 4, 2012
Day +10
Today is the Bottom!!!!!! That means in theory now everything starts looking better! Bill's blood counts should start going up, his side effects should start diminishing, and they should start talking about going home. He said it seemed a little easier to swallow this morning and refused to be put on a pain pump. Although when I mentioned ordering breakfast I got a HUGE dirty look! It is a combination of being repulsed by the thought of food and the painful throat! I must say my skin has definitely thickened up these past 2 weeks!!!!!I told him going into this he gets a pass on everything until July 1st!!!!
He got a big smile on his face this morning when he saw his day nurse is Alex. She was his nurse for several nights earlier and he loves her thorough, quiet nature. I call her the church mouse. She is the only night nurse that would already be at work in the room before I would wake up.
So....... today he gets a red blood transfusion, hemoglobin is 8.0. His absolute neutrofils are still too low to count. white blood is .01 and platelets 12. These are the magic numbers we monitor and once they start approaching a normal range consistently is when they start talking about going home. We have spent 11 days and nights here so far. Bill's coping mechanism is to get in the zone! Mine is to envision this is a luxury hotel without room keys!
Thank you for all the prayers!!!! Please know how much they are appreciated and I see their power. Bill's throat is improving and I was able to walk a few laps with Amy last night!
Kay
He got a big smile on his face this morning when he saw his day nurse is Alex. She was his nurse for several nights earlier and he loves her thorough, quiet nature. I call her the church mouse. She is the only night nurse that would already be at work in the room before I would wake up.
So....... today he gets a red blood transfusion, hemoglobin is 8.0. His absolute neutrofils are still too low to count. white blood is .01 and platelets 12. These are the magic numbers we monitor and once they start approaching a normal range consistently is when they start talking about going home. We have spent 11 days and nights here so far. Bill's coping mechanism is to get in the zone! Mine is to envision this is a luxury hotel without room keys!
Thank you for all the prayers!!!! Please know how much they are appreciated and I see their power. Bill's throat is improving and I was able to walk a few laps with Amy last night!
Kay
Thursday, May 3, 2012
Day + 9
Ok............ sorry for the detour yesterday but we are back on track today! .
Today is looking a little better than yesterday. The team decided to put Bill on all IV medication so he does not need to swallow the millions of pills. They changed his antibiotic in hopes that his hives would improve and it seems to be working. He was able to eat some jello and soup today so that is a definite improvement from yesterday. He is struggling to keep his eyes open today but I am hoping when Family Feud comes on that might change. His blood pressure is back to normal and his temperature has improved.
It is my hope that yesterday was the bottom and he is now on his way back up!
So please keep those prayers coming and please add a special prayer for Amy. She received her transplant yesterday. Her husband started running a fever a few days ago so he had to leave and she is going through this by herself. She is REALLY struggling with side effects from her chemo and radiation. Despite how completely horrible she feels when I peek in on her she still can manage a smile and always thanks me for coming to check on her. What an inspiration Bill, Amy and others here are to those of us who wish so very much we can help them feel better but can only sit by and pray their discomfort passes quickly.
I just had a long conversation with Lauren, a relatively new nurse on this floor about how difficult it is to not be able to really do anything to help someone sometimes. It is difficult for me to put into words what a life changing experience this has been and continues to be for us. Sometimes I forget how unimportant the silly, sometimes pathetic work stuff really is. But then I look at Bill or Amy or Scott or Don and see them fighting through some REALLY tough stuff and it sure puts thing into prospective.
Thank you all so VERY much for those prayers, love and never ending support!
Today is looking a little better than yesterday. The team decided to put Bill on all IV medication so he does not need to swallow the millions of pills. They changed his antibiotic in hopes that his hives would improve and it seems to be working. He was able to eat some jello and soup today so that is a definite improvement from yesterday. He is struggling to keep his eyes open today but I am hoping when Family Feud comes on that might change. His blood pressure is back to normal and his temperature has improved.
It is my hope that yesterday was the bottom and he is now on his way back up!
So please keep those prayers coming and please add a special prayer for Amy. She received her transplant yesterday. Her husband started running a fever a few days ago so he had to leave and she is going through this by herself. She is REALLY struggling with side effects from her chemo and radiation. Despite how completely horrible she feels when I peek in on her she still can manage a smile and always thanks me for coming to check on her. What an inspiration Bill, Amy and others here are to those of us who wish so very much we can help them feel better but can only sit by and pray their discomfort passes quickly.
I just had a long conversation with Lauren, a relatively new nurse on this floor about how difficult it is to not be able to really do anything to help someone sometimes. It is difficult for me to put into words what a life changing experience this has been and continues to be for us. Sometimes I forget how unimportant the silly, sometimes pathetic work stuff really is. But then I look at Bill or Amy or Scott or Don and see them fighting through some REALLY tough stuff and it sure puts thing into prospective.
Thank you all so VERY much for those prayers, love and never ending support!
Wednesday, May 2, 2012
Day +8
Sorry I am late in getting today's information out. It has just been one of those days........ One that we expected but hoping would not come.
To quote my guardian angel "Things have to get worse before they get better. Fever and sores developed today as the doctor predicted. Please say a little prayer this all passes quickly."
They do an amazing job here at Northwestern and kick into high gear. As a precaution they put Bill on iv antibiotics, took blood cultures and chest x-ray to rule out anything other than this just being a typical result of his white blood count being too low to count so his body is fighting back.
Bill's answer: Sleep and wake me up when I am all better!!!!!
Thank you everyone for those continued prayers.
Bill and Kay
To quote my guardian angel "Things have to get worse before they get better. Fever and sores developed today as the doctor predicted. Please say a little prayer this all passes quickly."
They do an amazing job here at Northwestern and kick into high gear. As a precaution they put Bill on iv antibiotics, took blood cultures and chest x-ray to rule out anything other than this just being a typical result of his white blood count being too low to count so his body is fighting back.
Bill's answer: Sleep and wake me up when I am all better!!!!!
Thank you everyone for those continued prayers.
Bill and Kay
Tuesday, May 1, 2012
Day +7
Well today the shoe dropped but so far it appears to be only a slipper!!!!
Bill's hemoglobin dropped below 8 so he is receiving a couple units of blood today. His platelets are still at 17 so they will probably give him those tomorrow. Platelets are nice because they can transfuse them rapidly. The Hemoglobin takes about 2 hours per unit so he has been napping all day while receiving those. Hopefully after this long nap he will be ready to hit the hall for a few laps!
His white count is down to 0.3 so this is where they now monitor him very closely for any sign of infection.
His appetite is pretty much non existent but he does seem to still like his salty snacks every once in awhile.
During his nap I ran across the street to have coffee with ,Carolyn, the previous transplant patient I referred to in an earlier blog. It was so wonderful to see her in person and how well she is doing. She filled me in on some of her experiences and I caught her up with Bill. She just recently made contact with her stem cell donor! What a beautiful gift this complete stranger has given her. Every time Bill receives blood I am so grateful to the person for taking the time to do the selfless act that is keeping him going! It turns out she was in the same room Bill is in now!!!!! What a very small world we live in.
So from here on out we wait .............and watch for his numbers to go up and stay up!
So MANY people have asked us "How can I help? What can I do?" You all are providing us with so many prayers, an abundance of love and incredible support. We continue to be Blessed! Perhaps, though you might consider going to donate blood! It is such an amazing gift to the person on the receiving end!
Bill and Kay
Bill's hemoglobin dropped below 8 so he is receiving a couple units of blood today. His platelets are still at 17 so they will probably give him those tomorrow. Platelets are nice because they can transfuse them rapidly. The Hemoglobin takes about 2 hours per unit so he has been napping all day while receiving those. Hopefully after this long nap he will be ready to hit the hall for a few laps!
His white count is down to 0.3 so this is where they now monitor him very closely for any sign of infection.
His appetite is pretty much non existent but he does seem to still like his salty snacks every once in awhile.
During his nap I ran across the street to have coffee with ,Carolyn, the previous transplant patient I referred to in an earlier blog. It was so wonderful to see her in person and how well she is doing. She filled me in on some of her experiences and I caught her up with Bill. She just recently made contact with her stem cell donor! What a beautiful gift this complete stranger has given her. Every time Bill receives blood I am so grateful to the person for taking the time to do the selfless act that is keeping him going! It turns out she was in the same room Bill is in now!!!!! What a very small world we live in.
So from here on out we wait .............and watch for his numbers to go up and stay up!
So MANY people have asked us "How can I help? What can I do?" You all are providing us with so many prayers, an abundance of love and incredible support. We continue to be Blessed! Perhaps, though you might consider going to donate blood! It is such an amazing gift to the person on the receiving end!
Bill and Kay
Monday, April 30, 2012
Day +6
Well I have been waiting all day for some sort of inspiration but.......
I guess the good news is nothing much is happening with Bill.... the bad news is I have nothing much to blog about!
Today was another day of the about the same. A little more sleeping and a little less appetite. The nurses all love Bill because he is so low maintenance. He did have a visit from a Eucharistic Minister from Holy Name Cathedral which was very nice for him to be able to receive communion. I know one of biggest things Bill has missed is being able to go to church regularly. There have been many weeks when his white counts have been too low to chance being out in public. I have been bringing him home communion but my homilies have a lot to be desired!
We did have a moment of great excitement last night when Drea sent a text to his phone with a picture of an ultrasound and the caption: You are going to be GRANDPARENTS!!!!! It put a big smile on his face and definitely made my day!
Bill and Kay
I guess the good news is nothing much is happening with Bill.... the bad news is I have nothing much to blog about!
Today was another day of the about the same. A little more sleeping and a little less appetite. The nurses all love Bill because he is so low maintenance. He did have a visit from a Eucharistic Minister from Holy Name Cathedral which was very nice for him to be able to receive communion. I know one of biggest things Bill has missed is being able to go to church regularly. There have been many weeks when his white counts have been too low to chance being out in public. I have been bringing him home communion but my homilies have a lot to be desired!
We did have a moment of great excitement last night when Drea sent a text to his phone with a picture of an ultrasound and the caption: You are going to be GRANDPARENTS!!!!! It put a big smile on his face and definitely made my day!
Bill and Kay
Sunday, April 29, 2012
Day +5
Well........ I have been trying to come up with something interesting to report but........as Dr. Olga said this morning "Sir, there is nothing interesting about you". Of course she was referring to his medical condition and not his personality.
He is still doing remarkably well. His hemoglobin held so he escaped one more day without receiving blood products. He is extremely tired so the walk around the hall was a little slower than yesterday and he is on his 2nd nap of the day. Other than that no real news to report. I took advantage of him feeling pretty good along with the light Sunday traffic and took the car home. It has been sitting in the parking garage racking up a nice bill so I dashed home, did 2 quick loads of laundry and took the train back into the city.
As Bill and I were walking the hall this afternoon we met a gentleman receiving treatment with his wife helping him try to get around a few laps. We were once again stuck by the incredible positive attitudes all the patients seem to have. He had a joke each time we passed him in the hall and he told us he loved having a captive audience for his 1 line jokes!
The theme of the stem cell transplant program here is "Celebrate Life". Bill received a goodie bag filled with some fun things so I thought you might like to see the note of explanation.
Poster signed by the transplant team.
This group of individuals truly work together as a team from the housekeeping staff, patient care techs, nurses, to the laboratory staff who take care of the precious stem cells. It is very uplifting to see this amazing group working together in ensure the comfort of these very special patients!
Blessings,
Kay and Bill
He is still doing remarkably well. His hemoglobin held so he escaped one more day without receiving blood products. He is extremely tired so the walk around the hall was a little slower than yesterday and he is on his 2nd nap of the day. Other than that no real news to report. I took advantage of him feeling pretty good along with the light Sunday traffic and took the car home. It has been sitting in the parking garage racking up a nice bill so I dashed home, did 2 quick loads of laundry and took the train back into the city.
As Bill and I were walking the hall this afternoon we met a gentleman receiving treatment with his wife helping him try to get around a few laps. We were once again stuck by the incredible positive attitudes all the patients seem to have. He had a joke each time we passed him in the hall and he told us he loved having a captive audience for his 1 line jokes!
The theme of the stem cell transplant program here is "Celebrate Life". Bill received a goodie bag filled with some fun things so I thought you might like to see the note of explanation.
Poster signed by the transplant team. This group of individuals truly work together as a team from the housekeeping staff, patient care techs, nurses, to the laboratory staff who take care of the precious stem cells. It is very uplifting to see this amazing group working together in ensure the comfort of these very special patients!
Blessings,
Kay and Bill
Saturday, April 28, 2012
Day +4
Happy Saturday!!!
Bill woke up this morning with a big smile and said " It is the weekend so we can just relax today"
I received a lovely compliment yesterday about how positive it is that I am numbering the days! I had to confess that this is the way the transplant program works. Everyone is not only connected with a name but also what day in the transplant process they are at. So today is related to 4 days after the transplant. But, thanks Barb for the beautiful compliment!
Bill is still doing well. He escaped a transfusion today by .3 so tomorrow he will definitely begin receiving blood products to get him through til his body starts making those blood cells again. He is getting some IV fluid today so he is connected to his IV pole for some of the day. So far he has been pretty IV free which makes getting around and showering much easier.
He is slowing down a bit more so I fear that I may need to motivate him to walk those halls. So far the stickers have worked because if I forget to put one up after our walk he definitely lets me know!
We received a visit today from the head of the Oncology department wanting to know our thoughts about the hospital, staff etc. She asked Bill what he would change if he could and he struggled because we have been so pleased with the care he has been receiving both physically, spiritually and emotionally. I did suggest a few things: A small chapel on the floor since the patients can't leave to go downstairs; coffee and shower for family on this floor. I have to go up to the 16th floor and it is a bit of a pain to go through 5 sets of doors and wash my hands twice for my morning coffee and the doors are locked until 7:00 a.m.
So the rest of Bill's day will be spent relaxing, watching some television, a few walks and maybe a a game or 2 of poker! Wishing you all a very relaxing weekend as well!!!!
Bill and Kay
Bill woke up this morning with a big smile and said " It is the weekend so we can just relax today"
I received a lovely compliment yesterday about how positive it is that I am numbering the days! I had to confess that this is the way the transplant program works. Everyone is not only connected with a name but also what day in the transplant process they are at. So today is related to 4 days after the transplant. But, thanks Barb for the beautiful compliment!
Bill is still doing well. He escaped a transfusion today by .3 so tomorrow he will definitely begin receiving blood products to get him through til his body starts making those blood cells again. He is getting some IV fluid today so he is connected to his IV pole for some of the day. So far he has been pretty IV free which makes getting around and showering much easier.
He is slowing down a bit more so I fear that I may need to motivate him to walk those halls. So far the stickers have worked because if I forget to put one up after our walk he definitely lets me know!
We received a visit today from the head of the Oncology department wanting to know our thoughts about the hospital, staff etc. She asked Bill what he would change if he could and he struggled because we have been so pleased with the care he has been receiving both physically, spiritually and emotionally. I did suggest a few things: A small chapel on the floor since the patients can't leave to go downstairs; coffee and shower for family on this floor. I have to go up to the 16th floor and it is a bit of a pain to go through 5 sets of doors and wash my hands twice for my morning coffee and the doors are locked until 7:00 a.m.
So the rest of Bill's day will be spent relaxing, watching some television, a few walks and maybe a a game or 2 of poker! Wishing you all a very relaxing weekend as well!!!!
Bill and Kay
Friday, April 27, 2012
Day +3
Things have been going so well I keep waiting for the shoe to drop.............
Bill became walking buddies today with Scott, a fellow patient. I met his wife, Betty, the first time we were here when Bill received his 2nd round of inpatient chemo. Betty and I have stayed in contact these past few weeks so it was nice to see a familiar face.
I asked Bill what he wanted to do today. Passing the time, so far, has been the hardest part of this process. Game shows can only take up so much of the day! During his morning nap a nice volunteer stopped by: She brought Courage, Strength, Hope, Warm Thoughts, Determination, Angel Wishes, an Original Poem, and many well wishes.
Thank you for taking the time out of your busy day to lift Bill's spirits with your cards, emails, texts, facebook postings and calls. We feel surrounded with love!
Bill became walking buddies today with Scott, a fellow patient. I met his wife, Betty, the first time we were here when Bill received his 2nd round of inpatient chemo. Betty and I have stayed in contact these past few weeks so it was nice to see a familiar face.
I asked Bill what he wanted to do today. Passing the time, so far, has been the hardest part of this process. Game shows can only take up so much of the day! During his morning nap a nice volunteer stopped by: She brought Courage, Strength, Hope, Warm Thoughts, Determination, Angel Wishes, an Original Poem, and many well wishes.
Thank you for taking the time out of your busy day to lift Bill's spirits with your cards, emails, texts, facebook postings and calls. We feel surrounded with love!
Thursday, April 26, 2012
Day +2
Today looks like it will be another pretty good day!
Maintenance adjusted the temperature so the room last night was not so stifling hot! The filtration system here is I believe is what they call a negative air flow? The air is EXTREMELY dry! My challenge today is to keep Bill hydrated. His doctor confirmed today what I have been telling him that he needs to drink more! He told his nurse that he needed a case of beer!!!! Pretty funny coming from a man who doesn't drink!
His numbers although still going down are still pretty good! It takes until day 10 or 11 for these new stem cells to get where they needed to go and do their thing! So the longer his numbers are still in the good range the shorter the time he will feel crappy and need transfusions!
This game show routine I fear will drive me crazy!!!! I found though while they are on it gives me time to get some work done!
I will check back in this afternoon...............
7:00 pm
Bill had another number of laps around the halls followed by a nap. During his nap I decided to talk a walk outside and headed toward Holy Cathedral Church. Sitting there reflecting I couldn't take my mind off of this wing we are on in the hospital. It has a total of 18 rooms. 18 completely occupied rooms. Everyone here is either getting a transplant or chemo for some type of blood cancer. Every once in awhile someone leaves and immediately the room is thoroughly cleaned, disinfected and a new patient is moved in. Every one's treatment is different because I am learning how many different types of blood cancers there are and how each person responds differently to the treatments. What has hit Bill and me so hard is the many young patients here. Today we met Amy, a beautiful young woman in her 20's as we were walking. Her transplant is scheduled for next week. She reminded us so much of our neighbor Kelly who lost her battle with Leukemia not very long ago. Kelly was also a beautiful young woman both inside and out and was the first to welcome us to the neighborhood. We also were blessed today to witness a young man in his 30's going home after his transplant. What a joy that was to see the excitement on his and his wife's faces as they were leaving the wing. It is difficult not to question the whys of this disease. Earlier in the week when we were speaking with Chaplin Jeanie and discussing some of this she shared with us a quote, " Leave the unknown to the known God". As Bill is anticipating his body to start feeling the side effects of the very potent chemo he received and his fear of the unknown we try and remember to leave this in God's hands.
Maintenance adjusted the temperature so the room last night was not so stifling hot! The filtration system here is I believe is what they call a negative air flow? The air is EXTREMELY dry! My challenge today is to keep Bill hydrated. His doctor confirmed today what I have been telling him that he needs to drink more! He told his nurse that he needed a case of beer!!!! Pretty funny coming from a man who doesn't drink!
His numbers although still going down are still pretty good! It takes until day 10 or 11 for these new stem cells to get where they needed to go and do their thing! So the longer his numbers are still in the good range the shorter the time he will feel crappy and need transfusions!
This game show routine I fear will drive me crazy!!!! I found though while they are on it gives me time to get some work done!
I will check back in this afternoon...............
7:00 pm
Bill had another number of laps around the halls followed by a nap. During his nap I decided to talk a walk outside and headed toward Holy Cathedral Church. Sitting there reflecting I couldn't take my mind off of this wing we are on in the hospital. It has a total of 18 rooms. 18 completely occupied rooms. Everyone here is either getting a transplant or chemo for some type of blood cancer. Every once in awhile someone leaves and immediately the room is thoroughly cleaned, disinfected and a new patient is moved in. Every one's treatment is different because I am learning how many different types of blood cancers there are and how each person responds differently to the treatments. What has hit Bill and me so hard is the many young patients here. Today we met Amy, a beautiful young woman in her 20's as we were walking. Her transplant is scheduled for next week. She reminded us so much of our neighbor Kelly who lost her battle with Leukemia not very long ago. Kelly was also a beautiful young woman both inside and out and was the first to welcome us to the neighborhood. We also were blessed today to witness a young man in his 30's going home after his transplant. What a joy that was to see the excitement on his and his wife's faces as they were leaving the wing. It is difficult not to question the whys of this disease. Earlier in the week when we were speaking with Chaplin Jeanie and discussing some of this she shared with us a quote, " Leave the unknown to the known God". As Bill is anticipating his body to start feeling the side effects of the very potent chemo he received and his fear of the unknown we try and remember to leave this in God's hands.
Wednesday, April 25, 2012
Day +1
Getting into the Routine! I am glad Bill is a morning person because the day starts between 5 and 6 just like home!
5:30 am Weight Check
7:30 8 laps around the halls
8:30 Transplant team visit ( Doctor, Nurse practioner, pharmacist and PA)
addiing general antibiotics, something to lower his phosphorus, and new antibiotic for his toe
9:00 Breakfast
DEAL OR NO DEAL
10:00 PRICE IS RIGHT
more to come......................
11:00 nap
12:30 6 laps around the hall
1:00 Lunch
2:00 JUDGE JUDY
2:30 8 more laps
3:00 Afternoon smoothie
4:00 FAMILY FEUD
THIS IS GOING TO BE A LONGGGGGGGGG COUPLE OF WEEKS!
5:30 am Weight Check
7:30 8 laps around the halls
8:30 Transplant team visit ( Doctor, Nurse practioner, pharmacist and PA)
addiing general antibiotics, something to lower his phosphorus, and new antibiotic for his toe
9:00 Breakfast
DEAL OR NO DEAL
10:00 PRICE IS RIGHT
more to come......................
11:00 nap
12:30 6 laps around the hall
1:00 Lunch
2:00 JUDGE JUDY
2:30 8 more laps
3:00 Afternoon smoothie
4:00 FAMILY FEUD
THIS IS GOING TO BE A LONGGGGGGGGG COUPLE OF WEEKS!
Tuesday, April 24, 2012
Day 0 "This is the Day the Lord has made. Let us Rejoice and be Glad!"
Today is the day we have been waiting for!!!!!!
They are giving Bill back his stem cells at 4:00 p.m. today!!! The chaplain is going to bless them first!
They will start an IV of hydration at noon and continue it until about 8 pm. This helps his kidneys handle the preservative they are stored in better. The actual transplant will only take about 1 hour! Pretty amazing stuff!
Blood counts today:
White 6.1
Red 8.7
Platelets 185
Down a bit from yesterday but still in a normal range which tells us the previous 2 chemo's helped reduce the disease. The chemo yesterday will wipe them all out so they will start giving him transfusions when he drops dangerously low.
More to follow........ It is time for a few laps around the hall.
4:00 pm
PICTURES OF TRANSPLANT
Stem Cell Storage:
Coming out of Storage
Defrosting Stem Cells
Ready to GO
Stem Cells being Infused
Bill enjoying a popcicle during transplant
Transplant Team
Chaplin Jeanie Blessed Bill's Stem Cells before Transplant
They are giving Bill back his stem cells at 4:00 p.m. today!!! The chaplain is going to bless them first!
They will start an IV of hydration at noon and continue it until about 8 pm. This helps his kidneys handle the preservative they are stored in better. The actual transplant will only take about 1 hour! Pretty amazing stuff!
Blood counts today:
White 6.1
Red 8.7
Platelets 185
Down a bit from yesterday but still in a normal range which tells us the previous 2 chemo's helped reduce the disease. The chemo yesterday will wipe them all out so they will start giving him transfusions when he drops dangerously low.
More to follow........ It is time for a few laps around the hall.
4:00 pm
PICTURES OF TRANSPLANT
Stem Cell Storage:
Coming out of StorageDefrosting Stem CellsReady to GOStem Cells being Infused Bill enjoying a popcicle during transplant
Transplant TeamChaplin Jeanie Blessed Bill's Stem Cells before Transplant
Monday, April 23, 2012
Day -1
9:00 a.m.
He is all checked in to Northwestern Prentice Hospital room 1563. A beautiful view of Lake Michigan.
3:00 p.m.
They inserted his pic line and just began his chemo. This is a short infusion, only 30 minutes, but very potent. It will take out his entire bone marrow. He started chewing on ice chips 30 minutes before they began the chemo which is suppose to help limit the mouth sores associated with this chemo. They also brought him some orange sherbet. Carolyn was the chemo nurse that delivered his chemo. She was his very first nurse when he was here 3 weeks ago for his 2nd round of chemo. There is something reassuring about seeing a familiar face. Wow I guess I am a super slow typist because chemo is already finished!!!!!! They said to try and keep the mouth cold for at least 2 hours again to limit the extent of mouth sores down the road! This is a bit of a challenge because all Bill wants to do is sleep! He didn't get much sleep last night with the anticipation of everything! So..........when I see the snore start I know it is time for more ice chips!!!! :) Well they are kicking me out so they can give him a breathing treatment. I will check back in later!
6:00 p.m.
I think Bill is still feeling pretty good because he asked me to bring him chocolate and potato chips!!!
Nothing else for the rest of tonight except for this bad chemo to work it's magic killing everything off and anticipation for the BIG DAY tomorrow. They will give him approximately 4 million of his stem cells at roughly 3:00 p.m. tomorrow and that will be the BEGINNING of his new immune system!
Wish us luck on getting some sleep tonight!
Love,
Kay
He is all checked in to Northwestern Prentice Hospital room 1563. A beautiful view of Lake Michigan.
3:00 p.m.
They inserted his pic line and just began his chemo. This is a short infusion, only 30 minutes, but very potent. It will take out his entire bone marrow. He started chewing on ice chips 30 minutes before they began the chemo which is suppose to help limit the mouth sores associated with this chemo. They also brought him some orange sherbet. Carolyn was the chemo nurse that delivered his chemo. She was his very first nurse when he was here 3 weeks ago for his 2nd round of chemo. There is something reassuring about seeing a familiar face. Wow I guess I am a super slow typist because chemo is already finished!!!!!! They said to try and keep the mouth cold for at least 2 hours again to limit the extent of mouth sores down the road! This is a bit of a challenge because all Bill wants to do is sleep! He didn't get much sleep last night with the anticipation of everything! So..........when I see the snore start I know it is time for more ice chips!!!! :) Well they are kicking me out so they can give him a breathing treatment. I will check back in later!
6:00 p.m.
I think Bill is still feeling pretty good because he asked me to bring him chocolate and potato chips!!!
Nothing else for the rest of tonight except for this bad chemo to work it's magic killing everything off and anticipation for the BIG DAY tomorrow. They will give him approximately 4 million of his stem cells at roughly 3:00 p.m. tomorrow and that will be the BEGINNING of his new immune system!
Wish us luck on getting some sleep tonight!
Love,
Kay
Sunday, April 22, 2012
Address
I was asked to post the address of the hospital where Bill will be residing temporarily:
Prentice Hospital
250 E. Superior St. Room 1563
Chicago, IL 60611
He won't be allowed to have any flowers or food sent but he sure enjoys receiving cards.
Prentice Hospital
250 E. Superior St. Room 1563
Chicago, IL 60611
He won't be allowed to have any flowers or food sent but he sure enjoys receiving cards.
Day -2
MIRACLES!
The miracle of modern medicine is giving Bill a future with a stem cell transplant, which is amazing.
But today I want to tell you about the REAL miracle in Bill's life. 24 years ago we were told we wouldn't be able to have children. Bill looked at me and said "That is OK. You have 3 beautiful kids that I love and if Gods wants us to have a baby He will give us one." Well 20 years ago tomorrow, with only help from God, Molly was born. We have always referred to Molly as our Miracle Baby! She has brought a special joy to Bill's life that is indescribable. For those who have spent considerable time with us have witnessed that certain twinkle in his eye when Molly is around. There is nothing that gives him more joy than being able to do something for her. Whether it was to take her to a festival, finding buckeye trees,playing catch in the yard or now giving her advice he truly loves every minute of it. I know there is always something about little girls and their dads but I see a unique mutual respect and admiration between the two of them. We recognize how fortunate we have been as parents that Molly has not only embraced the many geographical moves we put her through but learned from them how to be independent and flexible. Molly is just finishing her second year at Xavier University in Cincinnati. When she began she wasn't quite sure what she wanted to study but her love for science and math put her on a biology track. It didn't take long for her to declare her intent to become a physician. Everyday we are amazed at how hard she is working to attain this goal. She learned this strong work ethic, her strong sense of faith, and getting back up after being told no from her dad. I often tease her and call her Little Bill, especially when she tells me she is 100% Italian. I know our Miracle will be successful no matter what because she has had a beautiful and loving example in her dad.
Tomorrow will be one of those bitter sweet days. It will be the first time we have not been with Molly on her birthday. But we truly believe in miracles and wish our Miracle a very blessed day tomorrow and pray that she experiences the kind of joy in her life that she has brought to ours.
The miracle of modern medicine is giving Bill a future with a stem cell transplant, which is amazing.
But today I want to tell you about the REAL miracle in Bill's life. 24 years ago we were told we wouldn't be able to have children. Bill looked at me and said "That is OK. You have 3 beautiful kids that I love and if Gods wants us to have a baby He will give us one." Well 20 years ago tomorrow, with only help from God, Molly was born. We have always referred to Molly as our Miracle Baby! She has brought a special joy to Bill's life that is indescribable. For those who have spent considerable time with us have witnessed that certain twinkle in his eye when Molly is around. There is nothing that gives him more joy than being able to do something for her. Whether it was to take her to a festival, finding buckeye trees,playing catch in the yard or now giving her advice he truly loves every minute of it. I know there is always something about little girls and their dads but I see a unique mutual respect and admiration between the two of them. We recognize how fortunate we have been as parents that Molly has not only embraced the many geographical moves we put her through but learned from them how to be independent and flexible. Molly is just finishing her second year at Xavier University in Cincinnati. When she began she wasn't quite sure what she wanted to study but her love for science and math put her on a biology track. It didn't take long for her to declare her intent to become a physician. Everyday we are amazed at how hard she is working to attain this goal. She learned this strong work ethic, her strong sense of faith, and getting back up after being told no from her dad. I often tease her and call her Little Bill, especially when she tells me she is 100% Italian. I know our Miracle will be successful no matter what because she has had a beautiful and loving example in her dad.
Tomorrow will be one of those bitter sweet days. It will be the first time we have not been with Molly on her birthday. But we truly believe in miracles and wish our Miracle a very blessed day tomorrow and pray that she experiences the kind of joy in her life that she has brought to ours.
Saturday, April 21, 2012
Day -3
Yesterday was a busy day of getting the house in order for Bill's return from the hospital trying to get everything as clean as possible. Today it is the yard and garage's turn followed by a few little errands. Then we are just going to RELAX and enjoy being home.
Today I just want to say THANK YOU. Thank you for the emails expressing your love and prayers. Thank you for the phone calls offering your help. Thank you to our wonderful neighbors who are taking care of our dog and yard while we are away. Thank you for the text telling us you are thinking of us. Thank you for supporting Molly. Thank you for all the cards being sent. Thank YOU for being here for us. One of my biggest concerns about this journey was how can we get through this with just the 2 of us. Your emails, calls, and texting continue to remind us that we are not in this alone. We know YOU are right there for us giving us just what we need, peace of mind, moral support, love and prayers.
Friday, April 20, 2012
Day -4
Super Hero!
One of Bill's goals while in the hospital is to walk the halls as much as possible. He knows there will be days which he won't feel up to it but knows how important it is to help him recover quicker.
One day I jokingly said "How about if I make you a sticker chart like we use to do with the kids to give them incentives to to their chores? What kind of stickers do you want?" He actually liked the idea and said "Super Hero stickers" I mentioned this to our very dear friend, who shall remain anonymous, and a few days later in the mail arrived Super Hero Stickers!!! So .........
We had a bit of a concern Wednesday when I discovered my throat was getting scratchy. I wasn't sure if it was allergies or I was getting sick. The last thing we need right now is for Bill to pick up something. I am 99.9% sure it is allergies but will continue to see what happens. We certainly don't want to postpone the transplant but if need be will to be on the safe side! I am having the house power washed and the windows and screens cleaned today so we will see if getting rid of the pollen helps!
The chart is ready and Bill is already a SUPER HERO in my book!
One of Bill's goals while in the hospital is to walk the halls as much as possible. He knows there will be days which he won't feel up to it but knows how important it is to help him recover quicker.
One day I jokingly said "How about if I make you a sticker chart like we use to do with the kids to give them incentives to to their chores? What kind of stickers do you want?" He actually liked the idea and said "Super Hero stickers" I mentioned this to our very dear friend, who shall remain anonymous, and a few days later in the mail arrived Super Hero Stickers!!! So .........
We had a bit of a concern Wednesday when I discovered my throat was getting scratchy. I wasn't sure if it was allergies or I was getting sick. The last thing we need right now is for Bill to pick up something. I am 99.9% sure it is allergies but will continue to see what happens. We certainly don't want to postpone the transplant but if need be will to be on the safe side! I am having the house power washed and the windows and screens cleaned today so we will see if getting rid of the pollen helps!
The chart is ready and Bill is already a SUPER HERO in my book!
Thursday, April 19, 2012
Day -5
It is the Little Things that can mean so much!
A phone call hearing the love and affirmation from our niece!
Getting the mail and finding Super Hero stickers
Coming home to find your garbage cans put away
A text message.....
A coworker just there to listen
A smile from a complete stranger
Knowing your children and siblings are there for whatever you need....
A neighbor bringing flowers or food
It seems so strange that it takes the REALLY BIG things in life for us to sometimes take the time to appreciate the little things!
A phone call hearing the love and affirmation from our niece!
Getting the mail and finding Super Hero stickers
Coming home to find your garbage cans put away
A text message.....
A coworker just there to listen
A smile from a complete stranger
Knowing your children and siblings are there for whatever you need....
A neighbor bringing flowers or food
It seems so strange that it takes the REALLY BIG things in life for us to sometimes take the time to appreciate the little things!
Wednesday, April 18, 2012
Day -6
Afternoon at Northwestern!
Met with Lucy, the transplant coordinator first. She went over all the details of the chemo and transplant. A lot of information, some a bit scary, but also some very reassuring answers to our MANY questions.
Upon arriving we had a wonderful gift bag from Carolyn, a fellow transplant recipient, waiting for us before our appointments! It contained an example of a modified t-shirt that her sister made her with snaps to help make showering and dressing easier, along with Bill's favorite hard candy. ( I am not sure how she knew). And a beautiful card of support filled with tips for Bill to survive the hospital stay and tips for me of nearby places in case I need a change of atmosphere from the hospital. How extremely thoughtful and so very much appreciated! You never know how the people you meet one day will greatly touch your life years later!
Next he had his blood drawn and was so happy to have Sam in the clinic to do it. Sam gave him his mozabil shots everyday during the harvesting! Sometimes I wonder if these clinicians realize how much their kindness, their reassuring smiles, or taking just an extra minute of time can mean the world to the patient . We have experienced the most amazing nurses, technicians, doctors, volunteers, etc who have made this journey so much easier!
Finally appointment with Dr. Mehta, the transplant doctor. He is an extremely intelligent and personable doctor. And also very patient with my 101 questions! So they collected 11.16 million stem cells during 4 days. These cells have been separated into 8 bags ranging from 1.5 - 2.5 million in each bag. Then doctor Mehta decides which bags to infuse for the transplant. He explained they can transplant as few as 2 million or as many as 5 million. Any thing over that is overkill. The difference is how fast of a jump start they give your immune system before it kicks back into gear. He has decided to transplant 3 bags totalling just over 4 million. This then allows the other 7 million to stay frozen for 2 more future transplants if needed. So I am sure you are wondering , just like me, how they defrost the bags of frozen stem cells! Dr. Mehta's response was "VERY carefully", with a slight chuckle! They put them in bath water of exactly what your body temperature is for about 15 minutes!
So............ we are a GO for Monday morning!
On the way home we stopped for dinner ( white blood count in the normal range) at Uncle Julios followed with a stop at Marshals for bargain T-shirts that I can put snaps in. We had more fun at the clearance shirt rack. We found a lot of VERY ugly shirts but some that will work great! Even found a Northwestern t-shirt!!!! How very appropriate and only $5.00.
Sorry for rambling tonight but thank you for joining us on Bill's journey! We could not do this without each and everyone of you!
Kay
Met with Lucy, the transplant coordinator first. She went over all the details of the chemo and transplant. A lot of information, some a bit scary, but also some very reassuring answers to our MANY questions.
Upon arriving we had a wonderful gift bag from Carolyn, a fellow transplant recipient, waiting for us before our appointments! It contained an example of a modified t-shirt that her sister made her with snaps to help make showering and dressing easier, along with Bill's favorite hard candy. ( I am not sure how she knew). And a beautiful card of support filled with tips for Bill to survive the hospital stay and tips for me of nearby places in case I need a change of atmosphere from the hospital. How extremely thoughtful and so very much appreciated! You never know how the people you meet one day will greatly touch your life years later!
Next he had his blood drawn and was so happy to have Sam in the clinic to do it. Sam gave him his mozabil shots everyday during the harvesting! Sometimes I wonder if these clinicians realize how much their kindness, their reassuring smiles, or taking just an extra minute of time can mean the world to the patient . We have experienced the most amazing nurses, technicians, doctors, volunteers, etc who have made this journey so much easier!
Finally appointment with Dr. Mehta, the transplant doctor. He is an extremely intelligent and personable doctor. And also very patient with my 101 questions! So they collected 11.16 million stem cells during 4 days. These cells have been separated into 8 bags ranging from 1.5 - 2.5 million in each bag. Then doctor Mehta decides which bags to infuse for the transplant. He explained they can transplant as few as 2 million or as many as 5 million. Any thing over that is overkill. The difference is how fast of a jump start they give your immune system before it kicks back into gear. He has decided to transplant 3 bags totalling just over 4 million. This then allows the other 7 million to stay frozen for 2 more future transplants if needed. So I am sure you are wondering , just like me, how they defrost the bags of frozen stem cells! Dr. Mehta's response was "VERY carefully", with a slight chuckle! They put them in bath water of exactly what your body temperature is for about 15 minutes!
So............ we are a GO for Monday morning!
On the way home we stopped for dinner ( white blood count in the normal range) at Uncle Julios followed with a stop at Marshals for bargain T-shirts that I can put snaps in. We had more fun at the clearance shirt rack. We found a lot of VERY ugly shirts but some that will work great! Even found a Northwestern t-shirt!!!! How very appropriate and only $5.00.
Sorry for rambling tonight but thank you for joining us on Bill's journey! We could not do this without each and everyone of you!
Kay
Tuesday, April 17, 2012
Day -7
Looks like everything is still a go for next week. We have an appointment tomorrow with the transplant coordinator followed by blood tests and appointment with transplant doctor. So another big day in the big city! Bill is beginning to get a bit anxious about the process! The sooner next week gets here the better!
Thanks for keeping those prayers coming!
Thanks for keeping those prayers coming!
Monday, April 16, 2012
Count down to Transplant!
Well I wasn't going to post anything today but.......
This week we are just tying up loose ends before heading back to Northwestern. Windows washed, screens cleaned, house power washed, dog groomed, etc. I went to work this morning and Bill was going to spend the day relaxing and trying to get some mild exercise in. Early in the afternoon while sitting at my desk I received this beautiful basket of flowers. How very lucky I am to be married to such a wonderful man. In the midst of EVERYTHING he is going through he still takes the time to spoil me! On my way home I spoke with a Northwestern transplant recipient from March of 2011. She gave me some wonderful tips to help make the hospital stay more comfortable and ways to pass the time!
This week we are just tying up loose ends before heading back to Northwestern. Windows washed, screens cleaned, house power washed, dog groomed, etc. I went to work this morning and Bill was going to spend the day relaxing and trying to get some mild exercise in. Early in the afternoon while sitting at my desk I received this beautiful basket of flowers. How very lucky I am to be married to such a wonderful man. In the midst of EVERYTHING he is going through he still takes the time to spoil me! On my way home I spoke with a Northwestern transplant recipient from March of 2011. She gave me some wonderful tips to help make the hospital stay more comfortable and ways to pass the time!
Sunday, April 15, 2012
Good Day!
Wow...... Bill has started feeling a bit more like his "old" self today! His toe is on the mend, his neck is healing and his energy level is up! He isn't quite up to the crowds at church but I did take him out for a brief trip to the grocery store. In case you don't know grocery shopping is one of his greatest pleasures in life! We kept our distance from people so as not to take any chances of him getting sick at this point. After returning home he wanted to make a new recipe he found "Meatball Stew". It smells absolutely delicious! The day has worn him out a bit as he is now snoring on the couch!
It has been such a nice day, seeing Bill once again in the kitchen. It feels almost like everything is back to normal! I know our new "normal" is very different than before but in so many ways better! We have been and continue to be blessed with so many people sending warm thoughts and kind gestures. Last night just as I was trying to figure out what to fix for dinner our neighbor stops by with bratwurst! How truly blessed we are!
It has been such a nice day, seeing Bill once again in the kitchen. It feels almost like everything is back to normal! I know our new "normal" is very different than before but in so many ways better! We have been and continue to be blessed with so many people sending warm thoughts and kind gestures. Last night just as I was trying to figure out what to fix for dinner our neighbor stops by with bratwurst! How truly blessed we are!
Saturday, April 14, 2012
Home after the Harvest
Simple Pleasures in Life:
Sleeping in your own bed!
Having man's best friend home!
Driving up to the house to find the mulch has been spread!
A quiet day to catch up on work!
A care package from Phil Friends!
Bill has been enjoying a nice relaxing day watching some television and an afternoon catnap. What he is REALLY looking forward to now is a real shower. He was unable to get his catheter wet so his showers were a bit of a challenge this past week. He is anxiously awaiting the 24 hours to remove the dressing and take a long hot shower!
I probably won't have any updates until we go back to Northwestern on Wednesday afternoon and meet with his transplant doctor. But please continue to keep us in your prayers!
Love,
Kay
Sleeping in your own bed!
Having man's best friend home!
Driving up to the house to find the mulch has been spread!
A quiet day to catch up on work!
A care package from Phil Friends!
Bill has been enjoying a nice relaxing day watching some television and an afternoon catnap. What he is REALLY looking forward to now is a real shower. He was unable to get his catheter wet so his showers were a bit of a challenge this past week. He is anxiously awaiting the 24 hours to remove the dressing and take a long hot shower!
I probably won't have any updates until we go back to Northwestern on Wednesday afternoon and meet with his transplant doctor. But please continue to keep us in your prayers!
Love,
Kay
Friday, April 13, 2012
FINAL RESULTS
11.16 Million Grand TotalJust getting a transfusion of platelets then they will take out his catheter and we will pack up and go home! Just in time for the Friday night rush hour traffic!!!!!
Final Day of Harvest
Today is the final day for Bill to harvest his stem cells. His transplant doctor, Dr. Mehta decided to run an extra 5 liters through the harvesting machine in hopes of getting some extra cells on this last day. Today's estimate based on a formula of his white blood and the cd34 marker is somewhere between 1.7 and 3.75 million. I am hoping with the extra 5 liters we will be at that upper end or maybe even more!!! His platelets have been rebounding each night which has been wonderful that he hasn't needed any transfusions all week. They will check them one more time and make sure they are high enough before removing the temporary catheter that was placed in his neck for the harvesting process. I am suspecting he will need a transfusion first by the looks of the bleeding from the skin tear on his neck. The good news is platelets can be transfused at a rapid pace to it will only add maybe an hour on to the day!
It has been a long week and I know Bill is ready to be home and sleep in his own bed. We have enjoyed some nice time together in the big city with some walking down Michigan Avenue and a very nice Italian lunch yesterday. When this is all said and done we will return for a weekend of pure enjoyment without the medical interruptions! Will post later on the FINAL stem cell count collection!
As always, thank you for your continued support and prayers!
Kay
It has been a long week and I know Bill is ready to be home and sleep in his own bed. We have enjoyed some nice time together in the big city with some walking down Michigan Avenue and a very nice Italian lunch yesterday. When this is all said and done we will return for a weekend of pure enjoyment without the medical interruptions! Will post later on the FINAL stem cell count collection!
As always, thank you for your continued support and prayers!
Kay
Thursday, April 12, 2012
Thursday Results
Well..... not quite what we were hoping for! But another 2.62 million today!!!!!
Total collected 8.24 million.
So....... today's plan: Bill will get his last dose of mozabil today. 4 days is the maximum one can take mozabil. So the doctor said tomorrow is definitely the last day for harvesting. Stem cell collection typically goes down each day of harvesting and without the help of mozabil there is not a good likelyhood of collecting very many cells. So even though he wasn't able to collect the 20 million there will be more than enough for the transplant and enough in storage for 1 more transplant if needed in the future.
So the prayer for the night is for mozabil and neupogen to work their magic and help produce at least 1.76 million cells tomorrow!
Total collected 8.24 million.
So....... today's plan: Bill will get his last dose of mozabil today. 4 days is the maximum one can take mozabil. So the doctor said tomorrow is definitely the last day for harvesting. Stem cell collection typically goes down each day of harvesting and without the help of mozabil there is not a good likelyhood of collecting very many cells. So even though he wasn't able to collect the 20 million there will be more than enough for the transplant and enough in storage for 1 more transplant if needed in the future.
So the prayer for the night is for mozabil and neupogen to work their magic and help produce at least 1.76 million cells tomorrow!
Harvesting Week Day 4
Well........it is beginning to feel a little bit like Ground Hog Day!!! Machine is going! We are waiting for Doctor to advise whether or not after tomorrow we should keep going! The magic number we want is 20 million! Today's estimate is about 1.5 - 3 million. After today he may be close to 10 million. They will transplant 5 million but want the reserve for future transplants. The chemo they will give him before the transplant will make it impossible to ever harvest again so the more they can get now the better. I am praying the estimate is low and we see a better result! Bill's skin is extremely thin and sensitive from all the chemo drugs. When changing the dressing on his neck today the skin ripped and now he has a very sore looking wound. We keep being reminded, by seeing others here, as difficult as things are for him they could be much worse! I will post the actual numbers later!
Kay
p.s. The ipad that I thought was a big mistake is now getting well used! He loves listening to the music Molly put on it and he is becoming fond of solitaire and angry birds. I am still working on getting him to play Words with Friends!
Kay
p.s. The ipad that I thought was a big mistake is now getting well used! He loves listening to the music Molly put on it and he is becoming fond of solitaire and angry birds. I am still working on getting him to play Words with Friends!
Wednesday, April 11, 2012
Harvesting Week Day 3
Bill is back on this amazing machine! His white count is up nicely and platelets holding their own! His calcium and magnesium are down so they add those into the mix of blood returning to his body. They are estimating he will be able to collect about 2.5 million today. Yesterday he collected almost double the estimate so if that holds true he should be able to collect about 5 million today. They give us a new plan everyday. Today's plan is....... be on the machine just under 4 hours. His body is retaining fluids again. The good news with that is the more you weigh the faster they can run the machine so less time connected. After that we go back to the clinic for another shot of mozabil (they can only give him a total of 4, this will be #3) and tonight 3 more injections of neupogen. Keeping our fingers crossed he will be able to collect close to the 20 million by Friday. If not they will need to admit him into the hospital and keep going.
Today we met Mike. He is staying at the same place we are and his wife, Kay, received her transplant 14 days ago and doing so well they may be able to return home in a few days. He was very encouraging about the transplant process and experience. She was one of the very fortunate ones who was able to collect 53 million stem cells her very first day of harvesting! All of us who know and love Bill know he likes to take his sweet time with everything he does!!!!! But that is ok he will get there eventually! We have a bet going on the number of cells collected today. The winner gets to choose what we have for dinner tonight! I will post later what the actual collected count is! Please know how very much we continue to appreciate every one's good thoughts and prayers!!!!! Love Kay and Bill
Today we met Mike. He is staying at the same place we are and his wife, Kay, received her transplant 14 days ago and doing so well they may be able to return home in a few days. He was very encouraging about the transplant process and experience. She was one of the very fortunate ones who was able to collect 53 million stem cells her very first day of harvesting! All of us who know and love Bill know he likes to take his sweet time with everything he does!!!!! But that is ok he will get there eventually! We have a bet going on the number of cells collected today. The winner gets to choose what we have for dinner tonight! I will post later what the actual collected count is! Please know how very much we continue to appreciate every one's good thoughts and prayers!!!!! Love Kay and Bill
Tuesday, April 10, 2012
Let the Harvest Begin!
After 9 injections of Neupogen and 1 super booster of Mozobil, Bill's stem cell count is still low but high enough to start collecting. 
They expect to collect about 1.5 million stem cells today with a total goal of 20 million by the end of the week. He may not reach the total goal but they only need 5 million to transplant. The extras are for future usage. They circulate 20 liters of his blood which I guess is about 4 times his total blood volume through this machine which separates the stem cells and they collect in a separate bag. He should be finished about 4 this afternoon then we will go back to the clinic for another super duper booster shot and 3 more Neupogen injections tonight. He is resting comfortably through this process and doing GREAT! There is a sense of relief that they have finally begun the process of collecting his stem cells and although not plentiful they are sufficient to collect! They will call us tonight with an actual count of each and every cell collected! Pretty amazing stuff!
They expect to collect about 1.5 million stem cells today with a total goal of 20 million by the end of the week. He may not reach the total goal but they only need 5 million to transplant. The extras are for future usage. They circulate 20 liters of his blood which I guess is about 4 times his total blood volume through this machine which separates the stem cells and they collect in a separate bag. He should be finished about 4 this afternoon then we will go back to the clinic for another super duper booster shot and 3 more Neupogen injections tonight. He is resting comfortably through this process and doing GREAT! There is a sense of relief that they have finally begun the process of collecting his stem cells and although not plentiful they are sufficient to collect! They will call us tonight with an actual count of each and every cell collected! Pretty amazing stuff!
Monday, April 9, 2012
Disappointing Day
Today started bright and early for Bill to get his special catheter inserted for the harvesting process. As he was getting ready one of his toe nails ripped off. All his nails are thin and brittle. Not knowing how low his platelets or white blood count is we always worry about excessive bleeding and infection. Molly and I did a bit of make shift first aid to stop the bleeding and proceeded to the hospital. All went fine with the procedure and then they took some blood work to see if his stem cell count was up high enough to begin harvesting. A disappointing phone call was received that said counts are too low. We will go over to the clinic this afternoon for a shot of some super duper drug to tell these stem cells to quit hanging on and spill into the bloodstream! We will try again tomorrow. As our friend Elaine told him "Don't be stingy with those cells so you can hurry up and get home" After that I think we will take a short walk along Lake Michigan and find a nice place for dinner. His white count is high so it is safe to go out in public as long as he is careful. Molly is on her way back to Cincinnati for a very busy and intense 3 weeks of studying before finals! Please say a couple of extra little prayers today for her safe journey back to school and this new drug to do it's thing!
Saturday, April 7, 2012
Holy Saturday
What a joy to wake up and see the clarity on Bill's face. The chemo fog has finally lifted!!
Still waiting for the plumber............... I know he will show up eventually since I have not paid him yet!
What a joy too to have such wonderful neighbors. Georgia and Wayne have an Easter get together every year for the neighborhood. Molly and I walked down to for a quick hello and thank all our neighbors for their continued prayers. All of our neighbors are amazing, each and everyone have asked "How can we help? What can we do?". I wish I could adequately express how appreciative we are for taking care of Maxwell, the help with the yard, coming over and praying with us, and just knowing they are there to call for anything! How very blessed we are!
Molly is off to training for work this summer, meeting friends for lunch, Starbucks to finish her paper( too many distractions at home), then home to dye Easter eggs with her dad! Nice no matter how old she is traditions are sacred!
Monday Bill goes in to begin his stem cell harvesting process. I will update sometime on Monday!
Thank you ALL for all the prayers and support! Wishing everyone a very Blessed Easter!
Still waiting for the plumber............... I know he will show up eventually since I have not paid him yet!
What a joy too to have such wonderful neighbors. Georgia and Wayne have an Easter get together every year for the neighborhood. Molly and I walked down to for a quick hello and thank all our neighbors for their continued prayers. All of our neighbors are amazing, each and everyone have asked "How can we help? What can we do?". I wish I could adequately express how appreciative we are for taking care of Maxwell, the help with the yard, coming over and praying with us, and just knowing they are there to call for anything! How very blessed we are!
Molly is off to training for work this summer, meeting friends for lunch, Starbucks to finish her paper( too many distractions at home), then home to dye Easter eggs with her dad! Nice no matter how old she is traditions are sacred!
Monday Bill goes in to begin his stem cell harvesting process. I will update sometime on Monday!
Thank you ALL for all the prayers and support! Wishing everyone a very Blessed Easter!
Friday, April 6, 2012
Good Friday
Trying to focus on what TODAY is really all about! Bill had his blood checked today. After 2 units of platelets yesterday he now has 34,000. Not quite enough to start harvesting but we will see what Monday brings. They need to be at least 40,000. His white count is still .7 and undetectable neutrofils so......... still no defense system. Translation is housebound. Hoping effects of chemo will begin to wear off and his body will start making some blood cells!
Plumber is coming back today to hydro flush our pipes. Keeping our fingers crossed this does the trick and we have no more back ups!
On a happy note..... went to the grocery store with Molly last night. How much fun it is to hang out with her! Can't wait for her to be home in the summer for 3 whole months. Not that we will get to see her much but just knowing she is in town always brightens our day! She has really appreciated the opportunity to take her dad for blood tests and transfusions! I have really appreciated having her back in the kitchen, delicious blueberry coffee cake!
Plumber is coming back today to hydro flush our pipes. Keeping our fingers crossed this does the trick and we have no more back ups!
On a happy note..... went to the grocery store with Molly last night. How much fun it is to hang out with her! Can't wait for her to be home in the summer for 3 whole months. Not that we will get to see her much but just knowing she is in town always brightens our day! She has really appreciated the opportunity to take her dad for blood tests and transfusions! I have really appreciated having her back in the kitchen, delicious blueberry coffee cake!
Wednesday, April 4, 2012
Roller Coaster 2
Well no transfusion! They didn't order irradiated platelets. I thought both the docs were communicating but I guess not completely! I asked what they were giving him before they started and when they didn't say irradiated I said stop. I called the transplant coordinator and she said they should be to be on the safe side. So tonight we are careful....... no falling or bleeding and tomorrow they will tank him up.
Please dear Lord let this be the bottom of the dip!
Please dear Lord let this be the bottom of the dip!
Roller Coaster
Well..............there is a reason this is called a roller coaster!!! Yesterday was such an up day but today...... As I am sitting in the computer room this morning waiting for the washer to finish I heard our toilets gurgling! That means only one thing! I run to the mud room only to see sewage coming up the drain! Now normally this is just a royal pain to get someone to come out and rod our main drain. But Bill has no immune system so the thought of bacteria in the house was enough to set me in a tail spin! I jumped into action, we stopped the washer and I grabbed the bleach! Long story short I have someone coming out tomorrow to take care of it so we are just rationing our waste water today!
Next the trip to get Bill's blood checked was not unexpected but.... White Blood .7( meaning no defense system) Red was still decent but platelets were only 11 thousand. Normal is between 145 and 400 thousand. So they ordered platelets and we will go back to the infusion center at 5 today!
I hope this is the bottom of the dip and we are on our way back up! Molly is on the road coming home so that for sure makes a brighter day! I haven't told her yet she can't take a shower!
Next the trip to get Bill's blood checked was not unexpected but.... White Blood .7( meaning no defense system) Red was still decent but platelets were only 11 thousand. Normal is between 145 and 400 thousand. So they ordered platelets and we will go back to the infusion center at 5 today!
I hope this is the bottom of the dip and we are on our way back up! Molly is on the road coming home so that for sure makes a brighter day! I haven't told her yet she can't take a shower!
Tuesday, April 3, 2012
A Day of Surprises
I got up this morning and to my surprise found Bill already up and reading the news on the computer! He has ALWAYS been the early riser in our family until recently. I had a moment when I felt like this has all been just a bad dream! Today was the first day he has felt good enough for me to give him some alone time. I was able to get into my office and begin some much needed catch up work!
Upon arriving at my office the next wonderful surprise was one of my dear coworkers brought me home made soup and chili! I call her one of my angels because when I least expect it there is a meal to bring home! We have been so blessed with the staff I work with. When this journey first began each of our clinics provided us meals for a week. With 12 departments we were set for 12 weeks! How wonderful it is to be surrounded by goodness!
So then I arrive home and a box was delivered today! Bill's nieces put together a care package full of the most thoughtful surprises! Not only surprises for him but for me too!!!! Complete with bubbles and both of our favorite candies! Wow Wow Wow!!!
It is so amazing how SURPRISES no matter how big or small have a way of brightening up your day and can't help but put a smile on your face!
Thank you to all of our surprise angels!
Upon arriving at my office the next wonderful surprise was one of my dear coworkers brought me home made soup and chili! I call her one of my angels because when I least expect it there is a meal to bring home! We have been so blessed with the staff I work with. When this journey first began each of our clinics provided us meals for a week. With 12 departments we were set for 12 weeks! How wonderful it is to be surrounded by goodness!
So then I arrive home and a box was delivered today! Bill's nieces put together a care package full of the most thoughtful surprises! Not only surprises for him but for me too!!!! Complete with bubbles and both of our favorite candies! Wow Wow Wow!!!
It is so amazing how SURPRISES no matter how big or small have a way of brightening up your day and can't help but put a smile on your face!
Thank you to all of our surprise angels!
Monday, April 2, 2012
A Good Day on the Journey
Just returned home from Dr. Menini's office ( our local oncologist). Hemoglobin is stable and platelets were down to 26 so we are putting off transfusion. We will recheck first thing Wednesday morning and anticipate needing the transfusion then.
The latest biopsy results were very encouraging!!!!!!! The first round of chemo knocked out a significant amount of the cancer. We are even more encouraged, now more than ever, that the transplant will be able to put Bill into remission!
Thank you everyone for those continued prayers. There is no doubt God is hearing us and choosing to answer!
The only food that Bill has wanted to eat for the past few days was noodles with chicken broth! I was so excited when he said how about a steak tonight! Not sure if he said that because he really wants it or he is worried about me getting tired of fixing the same thing!!!
The trip outside to the doctor totally wore him out so he is napping. I know he is looking forward to watching the NCAA finals tonight so I hope the nap will do the trick!
The latest biopsy results were very encouraging!!!!!!! The first round of chemo knocked out a significant amount of the cancer. We are even more encouraged, now more than ever, that the transplant will be able to put Bill into remission!
Thank you everyone for those continued prayers. There is no doubt God is hearing us and choosing to answer!
The only food that Bill has wanted to eat for the past few days was noodles with chicken broth! I was so excited when he said how about a steak tonight! Not sure if he said that because he really wants it or he is worried about me getting tired of fixing the same thing!!!
The trip outside to the doctor totally wore him out so he is napping. I know he is looking forward to watching the NCAA finals tonight so I hope the nap will do the trick!
Sunday, April 1, 2012
Not much to Talk About
Today has been a day of "From the bed to the couch from the couch to the bed"... His appetite appears to be coming back a bit. I did see one BIG smile today when Molly was texting him. She can ALWAYS bring a smile to his face!!!
Tomorrow we will visit our local oncologist and get the result of the bone marrow biopsy that was recently done. It will tell us how much the first round of this 24/7 chemo cleared out the cancer! The more they can get rid of the cleaner his stem cells will be when they harvest them of the 9th!!!!!
They will also check his counts on his red blood and platelets to see if he needs a transfusion yet and his white blood to see how much his defense system is compromised at this point!
Will let you know tomorrow how everything is looking!!!!
Tomorrow we will visit our local oncologist and get the result of the bone marrow biopsy that was recently done. It will tell us how much the first round of this 24/7 chemo cleared out the cancer! The more they can get rid of the cleaner his stem cells will be when they harvest them of the 9th!!!!!
They will also check his counts on his red blood and platelets to see if he needs a transfusion yet and his white blood to see how much his defense system is compromised at this point!
Will let you know tomorrow how everything is looking!!!!
Saturday, March 31, 2012
Day 2 after Chemo
Bill was very brave letting me poke him as I gave my first injection! All went fine but next time it will be much easier!!!!!
Today I ask the dear Lord to help me not pass judgement on those who have no sense of compassion. I ask Him to bring peace to their lives so they may share that peace with others.
Chemo fog has set in today. Hoping lots of rest and fluids will help begin to clear it!
Today I ask the dear Lord to help me not pass judgement on those who have no sense of compassion. I ask Him to bring peace to their lives so they may share that peace with others.
Chemo fog has set in today. Hoping lots of rest and fluids will help begin to clear it!
Friday, March 30, 2012
How Blessed we are
Before I run off to take a VERY needed shower and get some sleep,I can't stop thinking about how very blessed we are. The strength we have is coming from the amazing family and friends God has blessed us with. The calls, the cards, the food, the texts, the hugs whether in person or across the miles, taking care of Maxwell, mass being offered, the constant chain of prayers, the incredible compassionate medical professionals we have encountered...... this is how we gather the strength to keep moving forward. There are no words to express how grateful we are!
Back Home
We are home from Northwestern!!!!! Bill is resting trying to catch on some missed sleep. One of his chemo drugs is notorious for getting air bubbles in the tubing causing the pump to stop and alarm to go off. So at least 15 times a day we were resetting the pump meaning not more than 2 hours of sleep at any given time. My challenge is keeping all his medications straight and getting up the nerve to give him daily injections! Wish me luck......or I should say wish him luck.
His blood counts today were still ok....so we will recheck them on Monday.
Glad to be home....We check back in on Easter Sunday to begin the harvest process bright and early Monday morning!
His blood counts today were still ok....so we will recheck them on Monday.
Glad to be home....We check back in on Easter Sunday to begin the harvest process bright and early Monday morning!
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