Each hour we get closer to Day 0, which is transplant day. Bill finished his chemo. yesterday and was started today on a drug called Tacrolimus which suppresses his immune system. Then when He receives Frank's stem cells on Tuesday ,he will have a whole new immune system. Hopefully all the leukemia cells will be killed and he will never have to revisit this period of his life again. This is what we pray and beg God for.
Houston is getting very hot. We went shopping today for supplies for the apartment. Frank Sr. will stay there while Tess is here. She and I will take turns staying with Bill in his room. It is wonderful to have company and help here. It makes the day go faster and it allows us a break from the room. Poor Bill is confined, but it helps him to have us all here. I can not imagine going through this journey alone. When Bill was first diagnosed and we knew so little about the disease,we were full of questions. We were looking for deadlines, maybe a month, two months, we would have even settled for three months. Little did we know what lay ahead. Dr. Cripe at Indiana University Hospital told us very wisely, to be patient. He told us that this was not a race but a marathon. How right he was.
Today I am happy to report that Bill is still very well. He has less energy and is walking shorter rounds around the unit. Still he is amazing to be so strong this far out. His attitude is so positive, he just wants it to be over and to get along with the rest of his life. That is what we want for him also.
Thank you again for your prayers. Please keep them up.
Sunday, May 31, 2009
Saturday, May 30, 2009
Day -3
Thankfully, today Bill completed his final chemotherapy treatment. So far, we are not seeing any side effects. Truthfully, these do not appear until two, plus days after transplant. We were concerned about a reaction to the new clinical trial. Thank God , we have not seen any to date. It is all to play for!!!
Tess arrived today and will spend the night in the room here at the hospital. This means that Frank and I can sleep in the hotel room. Thank you Tess for a good nights sleep.
Bill surprises us all. His sense of humour is in full swing. Sometimes it is not obvious who the patient is!!!!!!! Thank you Grandad William Deane for the great genes that keep the rest of us going.
At this present moment Bill is taking his third walk of the day with his Dad. His appetite seems to have improved today. We know that there are some dark days ahead as we enter the post transplant days. For now we are just taking one day at a time and thankful to God for each good hour.Please keep the prayers going. The next 102 days will be tricky. We are counting on all your intercessions with The Greater Power. Much Thanks to you all "You are the wind beneath our wings"
Tess arrived today and will spend the night in the room here at the hospital. This means that Frank and I can sleep in the hotel room. Thank you Tess for a good nights sleep.
Bill surprises us all. His sense of humour is in full swing. Sometimes it is not obvious who the patient is!!!!!!! Thank you Grandad William Deane for the great genes that keep the rest of us going.
At this present moment Bill is taking his third walk of the day with his Dad. His appetite seems to have improved today. We know that there are some dark days ahead as we enter the post transplant days. For now we are just taking one day at a time and thankful to God for each good hour.Please keep the prayers going. The next 102 days will be tricky. We are counting on all your intercessions with The Greater Power. Much Thanks to you all "You are the wind beneath our wings"
Friday, May 29, 2009
Day-4
Bill and I just completed 10 rounds of the unit for the third time today. He commented that it was "one way to spend a Friday night" For those of you who enjoyed many Friday night's with Bill in various cities throughout the world, this sure gives a whole new meaning to T.G.I.F. Bill was always quick to locate an Irish Pub in whatever city he was in. We all have our fun stories of Friday night's with Bill.
This morning he received his fifth day of chemo. He also needed some blood as his hemoglobin had dropped below the level they deem appropriate. He was more tired than usual today and slept in between walks. His appetite is still poor and his diet consists mostly of cereal and yogurt. He is receiveing medication for nausea, so at least he is comfortable.
Tess arrives tomorrow , so he will be very happy to see her. We are awaiting Frank's arrival as I type this.
Please keep Bill in your prayers as he approaches the end of the chemo and heads into transplant . We discovered today both he and Frank (his donor) have the same blood type also. That will make the grafting that little bit easier.
We are feeling your prayers and support each and every day and we really appreciate all of it.
This morning he received his fifth day of chemo. He also needed some blood as his hemoglobin had dropped below the level they deem appropriate. He was more tired than usual today and slept in between walks. His appetite is still poor and his diet consists mostly of cereal and yogurt. He is receiveing medication for nausea, so at least he is comfortable.
Tess arrives tomorrow , so he will be very happy to see her. We are awaiting Frank's arrival as I type this.
Please keep Bill in your prayers as he approaches the end of the chemo and heads into transplant . We discovered today both he and Frank (his donor) have the same blood type also. That will make the grafting that little bit easier.
We are feeling your prayers and support each and every day and we really appreciate all of it.
Thursday, May 28, 2009
Day -5
Hello to everyone,
Today marks the fourth day of Bill's six day treatment with chemo. He is in a special clinical trial which is in its second phase. There are four people in total in the trial, two pediatric patients, a 22year old young man and Bill. When Dr. Champlin spoke to us about the trial, we were a little reticent at first. Frank Sr. spoke to all his experts and got their medical input. In the end it was Bill who decided to go for it. His logic was "Why did we decide to come to M.D. Anderson, if we are not going to listen to the doctors and be as aggressive with the treatment as they think we should be." The protocol for all of you that are interested, is a combination of three chemo drugs; Thiotepa, Bulsufan and Clofarabine. Each of the drugs have been used before ,but not in this combination. He has been having his blood tested hourly at first and then by-hourly all of Tuesday and today. This is to get the exact quantities for his particular tolerance level. At the end of the fourth day I can say that he is tolerating it very well so far. He is currently watching a basketball game Cleveland V Orlando. His appetite has decreased a little and he has a little nausea - other than that he is doing really well. He walks for 20 minutes three times a day around the unit. He is not allowed leave the unit and must wear a mask and gloves when outside his room. It forces me to get my exercise also!!
On the home front, Kaitlyn had her first monthly check up today and is gaining weight and doing really well. Bill and I were able to Skype with Karen and Liam and Katherine and Kaitlyn today. For someone who hesitated to use a computer for the longest time, I sure have been thrown in at the deep end!!
Frank arrives tomorrow for two weeks. It is very difficult to believe that we will already have been in Houston five weeks on Sunday.
Thank you all again for your prayers and concern for Bill and our family. Tough and all as this dreadful disease is, it bring the very best out in all of us as we rush to support each other. Hilary Clinton said "It takes a village to raise a child", well it also takes community to support families going through cancer. For that support we are eternally grateful.
Today marks the fourth day of Bill's six day treatment with chemo. He is in a special clinical trial which is in its second phase. There are four people in total in the trial, two pediatric patients, a 22year old young man and Bill. When Dr. Champlin spoke to us about the trial, we were a little reticent at first. Frank Sr. spoke to all his experts and got their medical input. In the end it was Bill who decided to go for it. His logic was "Why did we decide to come to M.D. Anderson, if we are not going to listen to the doctors and be as aggressive with the treatment as they think we should be." The protocol for all of you that are interested, is a combination of three chemo drugs; Thiotepa, Bulsufan and Clofarabine. Each of the drugs have been used before ,but not in this combination. He has been having his blood tested hourly at first and then by-hourly all of Tuesday and today. This is to get the exact quantities for his particular tolerance level. At the end of the fourth day I can say that he is tolerating it very well so far. He is currently watching a basketball game Cleveland V Orlando. His appetite has decreased a little and he has a little nausea - other than that he is doing really well. He walks for 20 minutes three times a day around the unit. He is not allowed leave the unit and must wear a mask and gloves when outside his room. It forces me to get my exercise also!!
On the home front, Kaitlyn had her first monthly check up today and is gaining weight and doing really well. Bill and I were able to Skype with Karen and Liam and Katherine and Kaitlyn today. For someone who hesitated to use a computer for the longest time, I sure have been thrown in at the deep end!!
Frank arrives tomorrow for two weeks. It is very difficult to believe that we will already have been in Houston five weeks on Sunday.
Thank you all again for your prayers and concern for Bill and our family. Tough and all as this dreadful disease is, it bring the very best out in all of us as we rush to support each other. Hilary Clinton said "It takes a village to raise a child", well it also takes community to support families going through cancer. For that support we are eternally grateful.
Wednesday, May 27, 2009
3rd day of chemo also known as Day -6
This is Bill's mother and assigned caregiver. Each patient must have a pre-assigned caregiver with them at all times during the 100 days of transplant. I will be updating the blog together with Katherine from time to time, as I am on the ground here and know first hand how things are progressing
We arrived in Houston on April 25th. During the past four weeks, Bill has been undergoing testing and radiation treatments. This was all done as an outpatient. We stayed at The Rotary House, which is a hotel attached and owned by M.D.Anderson Hospital. It is a very nice hotel run by The Marriot chain and very convenient for early and late evening appointments. Unfortunately, it is also a very sad place,as every room has a cancer sufferer.It is impossible to get away from the sadness. One is constantly reminded of it in the dining room, bar, corridors, entry hallway and outdoor garden area. I never would have believed so many young and not so young lives are stopped short in their tracks by this dreadful disease. I have called it "Hotel California" after the song by the Eagles,as there is the pervasive feeling of "will we ever get out of here"? That said, we have had a very lovely stay and feel grateful for the convenience of being so close to hospital and doctors,and for the staff who go out of their way to help everyone.
M.D. Anderson is an amazing and intimidating place. It is huge!!!!People come here from all over the world to be treated for cancer.I dare not guess the size,but it must be in the miles and miles of hospital space and treatment areas. For one with a sense of direction like mine, it has been a challenge!
Bill's brother and twin came down last week and donated his stem cells for Bill's transplant. We will never be able to thank Frank enough for the selfless way he has supported his brother. It is at times like this one realizes the true value of a loving and devoted family. Donating stem cells is not without pain. Frank had to take shots to help promote growth of his stem cells. This causes alot of pain to his entire body as his stem cells multiply. Thank you Frank, and thank you Karen and Liam and Sophie for sharing him. I know you missed him. Thanks also to Leerink Swann for being so generous in allowing Frank ttime off to come down .
As the title suggests, this is day-6. This is the language of bone marrow transplants!!!!! The days are counted down from the day you become an inpatient until the day you leave. Day-9 being admission day and so on until day 0 which is transplant day, followed by day 1etc. Day 0 for Bill is June 2nd. He has been having chemotherapy since day-9 and will continue until day-3 which is sat. May30th. Day -2 and -1 will be rest days as his body prepares for the transplant on June 2nd. He has completed three days of chemo and so far has had no side effects except tiredness, which may be caused by the constant interruptions of hospital life as much as it is by the chemo.The effects of chemo generally start a few days after the transplant. He will also have to be concerned about ''Graft Versus Host Disease " as Frank's stem cells establish themselves in Bill's body. Of course the dreaded infections are always a loomimg threat as his own bone marrow is wiped out and leave him with no protection to fight off bugs, even the naturally occurring ones in his own body.
Each day bring us closer to going home to Indianapolis,with a completely cured Bill. I know Frank Sr. and Katherine and Ryan and baby Kaitlyn miss us, as we miss them also. Frank is coming to Houston this Friday for 2 weeks, to be here during the important day of the transplant and the potential side effects that follow. Tess also plans to come down on Friday and will stay until after the transplant. Ryan and Katherine and Kaitlyn plan to visit when Bill gets out of the hospital (about 3-4 weeks) and Frank and Karen and Liam and Sophie are coming in August. Ryan and Katherine and Kaitlyn are also coming in August. So we will have alot to look forward to once Bill get's out of the hospital.
Words can never express our gratitude to you for your constant prayers and concern for Bill and our family. It is this that has carried us through these tough few months.Your prayers and words of encouragement have been life giving to all of us. Please continue to keep Bill in your prayers as he approaches D-day. The first 100 days after the transplant are the most critical, please keep him in your prayers. A million thanks to you all. We will keep you posted on his progress.
We arrived in Houston on April 25th. During the past four weeks, Bill has been undergoing testing and radiation treatments. This was all done as an outpatient. We stayed at The Rotary House, which is a hotel attached and owned by M.D.Anderson Hospital. It is a very nice hotel run by The Marriot chain and very convenient for early and late evening appointments. Unfortunately, it is also a very sad place,as every room has a cancer sufferer.It is impossible to get away from the sadness. One is constantly reminded of it in the dining room, bar, corridors, entry hallway and outdoor garden area. I never would have believed so many young and not so young lives are stopped short in their tracks by this dreadful disease. I have called it "Hotel California" after the song by the Eagles,as there is the pervasive feeling of "will we ever get out of here"? That said, we have had a very lovely stay and feel grateful for the convenience of being so close to hospital and doctors,and for the staff who go out of their way to help everyone.
M.D. Anderson is an amazing and intimidating place. It is huge!!!!People come here from all over the world to be treated for cancer.I dare not guess the size,but it must be in the miles and miles of hospital space and treatment areas. For one with a sense of direction like mine, it has been a challenge!
Bill's brother and twin came down last week and donated his stem cells for Bill's transplant. We will never be able to thank Frank enough for the selfless way he has supported his brother. It is at times like this one realizes the true value of a loving and devoted family. Donating stem cells is not without pain. Frank had to take shots to help promote growth of his stem cells. This causes alot of pain to his entire body as his stem cells multiply. Thank you Frank, and thank you Karen and Liam and Sophie for sharing him. I know you missed him. Thanks also to Leerink Swann for being so generous in allowing Frank ttime off to come down .
As the title suggests, this is day-6. This is the language of bone marrow transplants!!!!! The days are counted down from the day you become an inpatient until the day you leave. Day-9 being admission day and so on until day 0 which is transplant day, followed by day 1etc. Day 0 for Bill is June 2nd. He has been having chemotherapy since day-9 and will continue until day-3 which is sat. May30th. Day -2 and -1 will be rest days as his body prepares for the transplant on June 2nd. He has completed three days of chemo and so far has had no side effects except tiredness, which may be caused by the constant interruptions of hospital life as much as it is by the chemo.The effects of chemo generally start a few days after the transplant. He will also have to be concerned about ''Graft Versus Host Disease " as Frank's stem cells establish themselves in Bill's body. Of course the dreaded infections are always a loomimg threat as his own bone marrow is wiped out and leave him with no protection to fight off bugs, even the naturally occurring ones in his own body.
Each day bring us closer to going home to Indianapolis,with a completely cured Bill. I know Frank Sr. and Katherine and Ryan and baby Kaitlyn miss us, as we miss them also. Frank is coming to Houston this Friday for 2 weeks, to be here during the important day of the transplant and the potential side effects that follow. Tess also plans to come down on Friday and will stay until after the transplant. Ryan and Katherine and Kaitlyn plan to visit when Bill gets out of the hospital (about 3-4 weeks) and Frank and Karen and Liam and Sophie are coming in August. Ryan and Katherine and Kaitlyn are also coming in August. So we will have alot to look forward to once Bill get's out of the hospital.
Words can never express our gratitude to you for your constant prayers and concern for Bill and our family. It is this that has carried us through these tough few months.Your prayers and words of encouragement have been life giving to all of us. Please continue to keep Bill in your prayers as he approaches D-day. The first 100 days after the transplant are the most critical, please keep him in your prayers. A million thanks to you all. We will keep you posted on his progress.
Bill's Contact Info in Houston
Hello Everyone! Many of you have asked for Bill's mailing address in Houston. This is the address to the apartment that my Mom and Bill will be staying at for the 3 months. Thanks for your continued support!!
Dominion Post Oak
2323 McCue Road, Apt. 2310
Houston, Texas 77056
Dominion Post Oak
2323 McCue Road, Apt. 2310
Houston, Texas 77056
Tuesday, May 26, 2009
Chemo has Started!
Below is an update from my Dad who was in Houston with Bill over the weekend...
Bill continues to do well. He completed two weeks of cranial radiation on May 15 without any adverse effects..a BM biopsy on May 14 and a lumbar puncture test on May 15 were both clear, as was his blood test this morning. These are last tests prior to transplant and means he is still in complete remission on the bone marrow front. This is VERY GOOD news as it gives him the best chance of a successful transplant and an ultimate cure. This is Memorial Day weekend in US and is a holiday weekend. We had a good time this weekend prior to Bill going back into hospital as scheduled on Sunday night to start chemotherapy preparative regimen for the stem cell transplant on June 2. He will have six days of chemo, followed by two "rest"days with day zero for transplant scheduled for Tuesday week (June 2). He had first chemo today (day -8) without mishap. He will be getting three different drugs and is participating in a clinical trial. Today's chemo was focused on the CNS (Central Nervous System).
The next month will be a tough period for Bill and all of us. First he has to get his immune system "demolished" and then grow a new one while avoiding any infections in the process!! He has decided to adopt a Winston Churchill quotation for the journey.."When you are going through Hell, just keep going".!! The low point will be about one week after actual transplant (week of June 8th) which is prior to new blood cells and immune system coming back. He will probably be in hospital for one month. He remains in good spirits and just wants to "plough on".
We have rented an apartment here in Houston for three months and spent Saturday setting it up. It is located within walking distance of the Galleria district which has many restaurants (and stores). It is well removed from the hospital environment. I returned to Indy yesterday but will return for two weeks on Friday. Noreen also has a hotel room which is connected to hospital for day naps. She plans to spend nights with Bill in his room. He is due to get a bigger room today with a Murphy bed. Tess was here this weekend and is coming back next weekend for Bill's new birthday on June 2.!! We were celebrating Katherine and Ryan's wedding on June 2 two years ago. How times change!!
Kaitlyn and mother continue to do well.!! Unfortunately, we had to put our family dog to sleep last Wednesday - Reggie, our yellow lab was 15 and a half years old (108 in human years!) and was suffering from severe hip problems. See picture below - We miss her!! Our family remains in good spirits and are very grateful to get Bill this far. We are very fortunate to have a perfect match,, to have a complete remission and to have got to transplant so fast. Bill is very happy with MD Anderson and the medical staff. They are very professional and leave nothing to chance. Please keep up the prayers.
Saturday, May 23, 2009
Memorial Day Update
Hi All - My dad is visiting Houston this weekend and Bill's girlfriend Tess is visiting for the weekend as well. Bill starts his chemotherapy treatment on Monday so please continue to pray for him that the chemo therapy treatment goes well. He is participating in a clinical trial that is being conducted at MD Anderson and is considered to be a very aggressive chemo treatment. Bill has handled chemo so well to this point that he is considered to be a very good match for the clinical trial. He will have his stem cell transplant on June 2nd. My mom will be staying in Houston during the duration to take care of Bill. She is staying at a hotel that is attached to the hospital so it is ideal and very close to Bill. After the stem cell transplant is complete and Bill is ready to leave the hospital, Mom and Bill will be moving to a lovely apartment that they have rented in Houston. This will be much more uplifting and will be nice to be away from the hospital - it is close to the Galleria Mall and lots of restaurants.
Happy Memorial Day Weekend to all and thank you for your continued support and prayers!
Happy Memorial Day Weekend to all and thank you for your continued support and prayers!
Monday, May 18, 2009
Update from Houston
Quick update from Houston - I have cut and paste pieces of this from an email my Dad sent to me so you might notice the "tone" of blog has changed slightly.
Bill finished ten days of cranial radiation last Friday without any ill effects - Thank God!
Frank has been in Houston since lastTuesday preparing to donate stem cells for Bill's transplant. Mom has been here in Indianapolis with Kaitlyn, Ryan and I visiting and meeting her new little grand daughter! After days of preparation and taking Neutrophin shots to boost his white blood cell count, Frank completed stem cell donor harvest yesterday. They analyzed his blood and seems they did get enough stem cells - so he is finished! What a special gift Frank has given to Bill - we are forever thankful to him!! We are also so thankful to his wife Karen and Liam and Sophie for sharing their daddy with Bill this week! They have been having a good time together and even went to see the new StarTrek movie and had a short visit to NASA this weekend.
On Sunday night, after they returned from trip to NASA, Bill got a temperature of 101F and was admitted to ER overnight (he has had many needles in past two weeks but still has a great spirit and is motivated as heck to beat this disease!!). They gave him red blood cells and IV antibiotics ...he was released Monday morning with oral antibiotic and his fever was down. They are doing blood culture which will take a few days...needs to go into transplant infection free. Neither he nor Frank got much sleep on Sunday night so are catching up now!!
Bill is scheduled into hospital next Sunday evening, May 24th, to start on transplant. They will commence preparative regimen of chemotherapy to kill all his stem cells on Monday continuing thru the following Saturday. He has two days "of rest" with actual transplant scheduled for Tuesday, June 2 (back to day zero for tracking purposes). He will be in hospital for approx three weeks after this.
Bill and my parents spoke to the doctor yesterday. His bone marrow biopsy was taken last Thursday and was clear (zero blast cells)...this is VERY GOOD news. They are still awaiting chromosomal analysis to check for leukemia cells. His spinal fluid taken on Friday was also clear. This sets him up well for transplant. The main issue right now is what type of chemotherapy to go with for with transplant. Doctor is recommending a new combination of drugs versus proven conventional regimen. He is trying to reduce risk of disease returning particularly in CNS (central nervous system). We have to decide by Wednesday which regimen to go with..ultimately it will be Bill's decision.
As Bill makes this critical decision, please keep him in your prayers! Please continue to pray for our family that we will continue to have the strength we need to support Bill and each other and fight this nasty disease!!
Bill finished ten days of cranial radiation last Friday without any ill effects - Thank God!
Frank has been in Houston since lastTuesday preparing to donate stem cells for Bill's transplant. Mom has been here in Indianapolis with Kaitlyn, Ryan and I visiting and meeting her new little grand daughter! After days of preparation and taking Neutrophin shots to boost his white blood cell count, Frank completed stem cell donor harvest yesterday. They analyzed his blood and seems they did get enough stem cells - so he is finished! What a special gift Frank has given to Bill - we are forever thankful to him!! We are also so thankful to his wife Karen and Liam and Sophie for sharing their daddy with Bill this week! They have been having a good time together and even went to see the new StarTrek movie and had a short visit to NASA this weekend.
On Sunday night, after they returned from trip to NASA, Bill got a temperature of 101F and was admitted to ER overnight (he has had many needles in past two weeks but still has a great spirit and is motivated as heck to beat this disease!!). They gave him red blood cells and IV antibiotics ...he was released Monday morning with oral antibiotic and his fever was down. They are doing blood culture which will take a few days...needs to go into transplant infection free. Neither he nor Frank got much sleep on Sunday night so are catching up now!!
Bill is scheduled into hospital next Sunday evening, May 24th, to start on transplant. They will commence preparative regimen of chemotherapy to kill all his stem cells on Monday continuing thru the following Saturday. He has two days "of rest" with actual transplant scheduled for Tuesday, June 2 (back to day zero for tracking purposes). He will be in hospital for approx three weeks after this.
Bill and my parents spoke to the doctor yesterday. His bone marrow biopsy was taken last Thursday and was clear (zero blast cells)...this is VERY GOOD news. They are still awaiting chromosomal analysis to check for leukemia cells. His spinal fluid taken on Friday was also clear. This sets him up well for transplant. The main issue right now is what type of chemotherapy to go with for with transplant. Doctor is recommending a new combination of drugs versus proven conventional regimen. He is trying to reduce risk of disease returning particularly in CNS (central nervous system). We have to decide by Wednesday which regimen to go with..ultimately it will be Bill's decision.
As Bill makes this critical decision, please keep him in your prayers! Please continue to pray for our family that we will continue to have the strength we need to support Bill and each other and fight this nasty disease!!
Sunday, May 10, 2009
Quick Update
Hello all - Great news - Bill has a new niece!! Kaitlyn Elizabeth Nagy joined us on April 30, 2009. As you can imagine, Ryan and I have been VERY busy adapting to life as new parents which is why I have not been updating this blog as diligently as I had been.Just wanted to let you know that Bill is going great - we have had some great news regarding his progress which either I or my mom will share in an upcoming blog. My mom is going to start helping me type this blog since she is with Bill everyday and knows his status!!
Quick summary - Bill was due to leave for Seattle on April 28 with stem cell transplant tentatively scheduled for May 28th. We had a curve ball with insurance coverage including appeal..too complicated to explain!! So Bill has decided to have transplant done at MD Anderson in Houston, Texas. Bill, Mom and Dad travelled there on April 25 and Bill has been there since. Bill started ten days of cranial irradiation (radiation to the brain) last Monday. He will start chemo prep regimen for seven days immediately after cranial irradiation. His brother Frank will go to Houston most probably this Tuesday and they will start to harvest his donor stem cells the following Monday,May 18 and freeze them. Bill's transplant will probably still occur week of May 25th. MD Anderson has been terrific in keeping us on original transplant schedule that we were going to have at Seattle.They have covered every conceivable angle with all sorts of tests and consultations in the past ten days.
Bill remains positive and is doing well through the radiation - it is HOT is Houston, so he and my mom are adapting to the heat! Please keep him in your prayers - we will provide updates as frequently as possible!!
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