I apologize for those who have been following JohnnyP's Journey with Cancer. The last time I blogged was when we were in Boston. John had a stem cell transplant on Nov. 9th, it was a success! What an amazing process. The body is such a unique piece of machinery. John had his transplant, and never skipped a beat. The nurses and doctor's were simply amazed by John. Honestly, they would come into his room to check on him and were just amazed at how much strength he had, he had such a positive attitude, which helped the process. The nurse had told me, without a positive attitude it is so difficult. It also helped that I was there. I stayed by John's side every step of the way. I was in a hotel for 21 days. The Hampton Inn in Boston. Just 15 minutes away from Brighams and Women's Hospital. I could have never stayed in RI. God forbid something ever happen to John and I was miles away from him.
John spent 21 days in Brighams and Womens' Hospital...what a great place. The nurses and doctor's are the best. The nurses and doctor's took to John like everyone else does (of course), became instant friends with each and every one of them. I know people say, it's their job. However, this group was exceptional, anything, at anytime. Some of the nurses knew what John needed before he asked for it. Made me speechless.
Time in Boston was stressful, it wasn't always a sunny day. There were days where I just wanted to go home. I can't lie. I missed our lives back in Cranston. Me, my JohnnyP, and Oliver. A small but happy family. Speaking of family. John and I are extremely lucky to have such a great family and friends in our lives.
John's Family, there are no words. His Mom, held up, I really thought she was going to break-down somedays, but she held it together. It must have been hard, watching your son lie in a hospital bed, unable to do anything. There was no magic wand to make John better. Sickness takes a toll on all family members. My sister. Dear God, I thank God I have her. I don't know what I would have done without her. Speechless. I can't thank her enough. She stayed/lived at our house for almost an entire month to take care of Oliver. She drove back and forth to Boston, I can't count how many times. Thank you God for my sister. Our friends. We truly were blessed with a great group of friends. Grant it there are a couple, that don't even deserve a mention in this blog. USELESS is a word for them. They know who they are. Friends, friends, so thankful for our friends. You find out who your true friends are when something like and illness happens. They either retreat, or come out in full force. I am so glad the real friends came out in full force. Dorothy, my dear friend Dorothy. Took my place at the tanning salon, ran it for me while I was in Boston. Kelly, always on email,whenever I need to laugh. Kathleen. My long lost friend. Always on Facebook, chatted with me almost every night on Facebook. Claudia. My oldest and dearest friend, even with her illness, always manage to find the time to call to see how we were doing. John's friend Jeff, another one, has so many things going on in his life, still always managed to call John. Almost everyday. Even came to see him in Boston!
I have to stop and take a deep breath, close my eyes and say to myself "did this really happen to us?"
I am looking forward to 2010....leave behind 2009...and everything that went along with it....no more sickness...all we ask for is a happy, healthy and wealthy 2010....
Tuesday, December 29, 2009
Monday, November 9, 2009
Day 7 in Boston
Today is Monday, it will be 1 wk tomorrow that John has been in BW Hospital. He has been so extremely lucky he has not been sick,sick. He did have a touch of the "poopies", and threw up 3x's. The doctor
came in this afternoon and told John he is doing extremely well taking into consideration the amount of chemo he has had. He told him he looks better than some of his patients.
John's stem cells will be reinfused tomorrow, and Wed. because he had so many cells harvested they need to put them all back in. His first infusion will start at noon tomorrow, another one at 4 pm, and then on Wed he will have his last one at 4pm. His recovery process will start from there....he may have all good days or a mix of a couple of bad and the remainder good. The doctor and nurses stated the same..."everyone is different", each body reacts differently to the medication and the reinfusion process. Since John has done so well so far, he may not have a bad ride. The doctor said to John "ride it out", he is doing great.
The scary part is gone for the most part, now we just need to wait it out after the reinfusion is done.
It will be a waiting process from here on out...there is a light at that end of this dark tunnel...I knew it! I am keep the faith, praying and holding strong...14 days and counting......
came in this afternoon and told John he is doing extremely well taking into consideration the amount of chemo he has had. He told him he looks better than some of his patients.
John's stem cells will be reinfused tomorrow, and Wed. because he had so many cells harvested they need to put them all back in. His first infusion will start at noon tomorrow, another one at 4 pm, and then on Wed he will have his last one at 4pm. His recovery process will start from there....he may have all good days or a mix of a couple of bad and the remainder good. The doctor and nurses stated the same..."everyone is different", each body reacts differently to the medication and the reinfusion process. Since John has done so well so far, he may not have a bad ride. The doctor said to John "ride it out", he is doing great.
The scary part is gone for the most part, now we just need to wait it out after the reinfusion is done.
It will be a waiting process from here on out...there is a light at that end of this dark tunnel...I knew it! I am keep the faith, praying and holding strong...14 days and counting......
Thursday, November 5, 2009
Wed Afternoon
Day 3, Wed. Afternoon;
It is about 10 mins to 5 pm, John has just started to feel really tired and the nausea is setting in big time.
It kills me to see him this way. There is only medication that can help him now. I feel so helpless. I ask him if he wants water or something to eat, I know that is not going to help, but it just sounds and makes me feel better to at least try to help. The nurse just left to go get him some meds to see if that will help. Hopefully it will. He needs to try and get some sleep.
I hate to leave him this way. I wish I didn't have to go back to the hotel, I will stay until he feels better. Last shuttle leaves at 8:30 pm.
It is about 10 mins to 5 pm, John has just started to feel really tired and the nausea is setting in big time.
It kills me to see him this way. There is only medication that can help him now. I feel so helpless. I ask him if he wants water or something to eat, I know that is not going to help, but it just sounds and makes me feel better to at least try to help. The nurse just left to go get him some meds to see if that will help. Hopefully it will. He needs to try and get some sleep.
I hate to leave him this way. I wish I didn't have to go back to the hotel, I will stay until he feels better. Last shuttle leaves at 8:30 pm.
Updates
I haven't blogged in 2 months!! Shame on me. So much has been going on, I just haven't had the time or the energy to sit and blog.
John is going to have a stem cell transplant done. He went to Dana Farber for a consult and to schedule a date of admissions for the transplant. All this took place the end of Sept. He was told in Sept. he would have pretty much the month of Oct. to get his affairs in place, for he would be gone to Boston for the month of Nov. (well pretty much the month of Nov.
It all began on Oct. 26th, John would need to have his stem cells harvested to be reinfused. He was lucky enough to be able to have his own stem cells reinfused. Some people are not so lucky and have to find a donor. Which makes everything much worse for the patient and family. When you have your own cells reinfused, there is less risk of infection and rejection, since it is your own.
John starting his harvesting on the 26th he would need 2 million cells. Either he would get them all harvested in 1 day or 2, we of course were hoping for 2 days, however as our luck would run he would have to harvest for 2 days. Which is fine, it is just a pain in the butt. We had to get a room in Boston for 2 nights. It takes 7 hours a day to harvest. By the time John is done he is so tired, and who feels like dealing with anything.
He did it! 2nd day!!!! Harvesting done!! WHOOOH!!! We get to go home for 6 days to turn around and come back so he can have the transplant done. Which brings me to present day....
Day 3, John had his first round of chemo last night (he will be getting chemo 2x's a day for 4 days), today will be his 2nd full day of chemo, they will start his 1st dose at 11 am, he will get his 2nd dose at 11 pm.
He did extremely well last night, he didn't get sick at all! Whew! He looks really good today, a little tired, but that is to be expected. Two more days of chemo and counting.
John is very strong willed, this surely will not get him down!
I will try my very best to give updates daily as I know all of you are concerned about John and his condition.
Thank you all!
Love and Hugs,
Cathie & John
John is going to have a stem cell transplant done. He went to Dana Farber for a consult and to schedule a date of admissions for the transplant. All this took place the end of Sept. He was told in Sept. he would have pretty much the month of Oct. to get his affairs in place, for he would be gone to Boston for the month of Nov. (well pretty much the month of Nov.
It all began on Oct. 26th, John would need to have his stem cells harvested to be reinfused. He was lucky enough to be able to have his own stem cells reinfused. Some people are not so lucky and have to find a donor. Which makes everything much worse for the patient and family. When you have your own cells reinfused, there is less risk of infection and rejection, since it is your own.
John starting his harvesting on the 26th he would need 2 million cells. Either he would get them all harvested in 1 day or 2, we of course were hoping for 2 days, however as our luck would run he would have to harvest for 2 days. Which is fine, it is just a pain in the butt. We had to get a room in Boston for 2 nights. It takes 7 hours a day to harvest. By the time John is done he is so tired, and who feels like dealing with anything.
He did it! 2nd day!!!! Harvesting done!! WHOOOH!!! We get to go home for 6 days to turn around and come back so he can have the transplant done. Which brings me to present day....
Day 3, John had his first round of chemo last night (he will be getting chemo 2x's a day for 4 days), today will be his 2nd full day of chemo, they will start his 1st dose at 11 am, he will get his 2nd dose at 11 pm.
He did extremely well last night, he didn't get sick at all! Whew! He looks really good today, a little tired, but that is to be expected. Two more days of chemo and counting.
John is very strong willed, this surely will not get him down!
I will try my very best to give updates daily as I know all of you are concerned about John and his condition.
Thank you all!
Love and Hugs,
Cathie & John
Friday, September 25, 2009
Week of the 21st
I haven’t blogged since the 16th; it has been about a week.
Each time the phone rings, your heart sinks, is it the nurse, and what is the news going to be? John had his bone marrow test done last Thursday, he was suppose to have his results back this Monday, I knew he was worried, no call from the doctor’s office, it is 3:45 pm, they close at 5:00 pm. I ask if he wants me to call for him, answer is no, so scared and nervous, don’t know which way to turn. My theory is “no news is good news”. Tuesday morning, waiting for the phone to ring, jump at the sound of it, run to it with a ton of questions running in your head. John picks up the phone call, doctor states “your test results are CLEAN!!” “Everything is CLEAN” “There is no sign of cancer in your body at this time” Oh my God! Thank you. John was so excited he actually told the doctor “I love you man”. Really cute! WHEW! And a big WHEW! at that.
Dear God, you gotten us this far, please, just be there for the bone marrow transplant. Please.
Now the gammet of testing begins for John. His body must be in prestine condition before he has the bone marrow transplant done. Head to toe! He will be going for all sorts of testing at the hospital, series of blood work, a pulmanairy test, and a few other I fail to remember at this point, there are so many. He also has to go to the dentist to have his mouth completely clean. John cannot take the chance of infection. He actually went to the dentist on Tuesday, all day affair. He started off with a consult at the dentist, and he was told he needs to have two teeth pulled and two root canals. John is not a big fan of the dentist - at all! He has to get all these procedures done by the first week of November.
The nurse at this dentist office was great! Got John in at the oral surgeon for a consult the same day, he will be having his teeth pulled on Wednesday. And there was one other dentist he has to go to for the root canal, which will be October 5th. Then he should be done with the dentist.
Next step getting all the paperwork completed for Dana Farber. He actual received a binder, inch thick, with all sorts of information on the hospital and his procedure. Dear God.
I tell myself one day at a time. I am actually in awe of John’s courage, and strength. To be hit with this disease and have to fight all the punches, no matter what comes his way.
I admire everything about him. His spirit is so strong, it helps me to be strong and keep up my spirits. I have to, he is my love…now and always….his “babe”
Each time the phone rings, your heart sinks, is it the nurse, and what is the news going to be? John had his bone marrow test done last Thursday, he was suppose to have his results back this Monday, I knew he was worried, no call from the doctor’s office, it is 3:45 pm, they close at 5:00 pm. I ask if he wants me to call for him, answer is no, so scared and nervous, don’t know which way to turn. My theory is “no news is good news”. Tuesday morning, waiting for the phone to ring, jump at the sound of it, run to it with a ton of questions running in your head. John picks up the phone call, doctor states “your test results are CLEAN!!” “Everything is CLEAN” “There is no sign of cancer in your body at this time” Oh my God! Thank you. John was so excited he actually told the doctor “I love you man”. Really cute! WHEW! And a big WHEW! at that.
Dear God, you gotten us this far, please, just be there for the bone marrow transplant. Please.
Now the gammet of testing begins for John. His body must be in prestine condition before he has the bone marrow transplant done. Head to toe! He will be going for all sorts of testing at the hospital, series of blood work, a pulmanairy test, and a few other I fail to remember at this point, there are so many. He also has to go to the dentist to have his mouth completely clean. John cannot take the chance of infection. He actually went to the dentist on Tuesday, all day affair. He started off with a consult at the dentist, and he was told he needs to have two teeth pulled and two root canals. John is not a big fan of the dentist - at all! He has to get all these procedures done by the first week of November.
The nurse at this dentist office was great! Got John in at the oral surgeon for a consult the same day, he will be having his teeth pulled on Wednesday. And there was one other dentist he has to go to for the root canal, which will be October 5th. Then he should be done with the dentist.
Next step getting all the paperwork completed for Dana Farber. He actual received a binder, inch thick, with all sorts of information on the hospital and his procedure. Dear God.
I tell myself one day at a time. I am actually in awe of John’s courage, and strength. To be hit with this disease and have to fight all the punches, no matter what comes his way.
I admire everything about him. His spirit is so strong, it helps me to be strong and keep up my spirits. I have to, he is my love…now and always….his “babe”
Wednesday, September 16, 2009
The week of the 14th…
It has been a week since I blogged. I try to take the week and let it sink in before I sit and write down how I feel and what has been going on. Since John’s last chemo treatment each passing day he gets better and better, he is in remission and it shows. I still each day cannot believe this is happening to him, to us, to his family. My heart aches everyday, everyday I hold back the tears of anger and hurt. I pray to whatever God will listen to me, to hear my thoughts and help John and I bear the unbearable. I want him to be well again. I want to be able to go places and do things without having to constantly worry about;
Are there too many people around? Did I remember to bring the hand sanitizer? What little kid is running around in the restaurant or store that may have a cold?
John has been doing things around the house, probably things that he really shouldn’t be doing. He still has his pick-line in. The nurse had mention to him to be extremely careful; he needs to remember this line runs directly to his heart!
This past weekend (Saturday) was a perfect example. The back door to the house is totally shot. It needed to be replaced, and John had it in his head he was going to do this by himself. Ah, not such a good idea. I forget the exact sequence of events, if he had purchased the new door, or if he went to go get the new door on Sat. I think the new door was already there, John wanted to get out the old door and put in the new one.
It simply amazing me on how people can react towards John, full well knowing he is sick. I know to look at him, he doesn’t look sick, but he is. John needed help with this project, no doubt about it. He called his “friend” Gary, who actually has put in a door before so he would know how to do it. No go. Apparently per Gary it would take 3 days to put in a new door and Gary wasn’t going to miss his date that night…he just couldn’t. Good bye…useless creature. John decided to call his brother, very handyman, he would be able to help. John’s brother is great! I wish that I could do everything for John, and not always have to rely on family and friends. At any rate the old door was taken out; new door was put up in around 3 hrs! Not 3 days! Gary, you jerk! He did decide to stop by and see the progress of the door. That is another story for a new entry….too much anger on that one.
Sunday, I think this was the day we went for a cook-out at his sister’s house. Always a great time with his family, they are the nicest people. I have a secret, my two favorites…Jamie and Emily!!! Love those little girls…sorry….I can’t help it!
Monday, Tuesday, Wednesday….pretty normal to say the least, John’s nurse comes to change his dressing on his pick-line every Monday. Tuesday, just another Tuesday, Wednesday, today….the day before John’s bone marrow test, he did receive news from Dana Farber, that all of John’s tests up to date look great. It is pretty certain he will be using his own marrow for the transplant. Great news! The nurse from Dana told John he should be able to make a date to come to Boston the beginning of Nov. and be home for Thanksgiving! Now we really would be giving thanks! She will be sending out a packet to explain in further detail. We will still need to take a day before hand to go up and speak with Dr. Jacobsen. John needs to go to the hospital and speak with him and get the full explanation of the bone marrow transplant from start to finish.
Oh my heart, heavy at times when I am writing I just want to break down and cry….sad, angry, angry at this disease and what it does to people….sad….very sad…. I know there is a light at the end of this tunnel…..I am just waiting for it to shine on us
Are there too many people around? Did I remember to bring the hand sanitizer? What little kid is running around in the restaurant or store that may have a cold?
John has been doing things around the house, probably things that he really shouldn’t be doing. He still has his pick-line in. The nurse had mention to him to be extremely careful; he needs to remember this line runs directly to his heart!
This past weekend (Saturday) was a perfect example. The back door to the house is totally shot. It needed to be replaced, and John had it in his head he was going to do this by himself. Ah, not such a good idea. I forget the exact sequence of events, if he had purchased the new door, or if he went to go get the new door on Sat. I think the new door was already there, John wanted to get out the old door and put in the new one.
It simply amazing me on how people can react towards John, full well knowing he is sick. I know to look at him, he doesn’t look sick, but he is. John needed help with this project, no doubt about it. He called his “friend” Gary, who actually has put in a door before so he would know how to do it. No go. Apparently per Gary it would take 3 days to put in a new door and Gary wasn’t going to miss his date that night…he just couldn’t. Good bye…useless creature. John decided to call his brother, very handyman, he would be able to help. John’s brother is great! I wish that I could do everything for John, and not always have to rely on family and friends. At any rate the old door was taken out; new door was put up in around 3 hrs! Not 3 days! Gary, you jerk! He did decide to stop by and see the progress of the door. That is another story for a new entry….too much anger on that one.
Sunday, I think this was the day we went for a cook-out at his sister’s house. Always a great time with his family, they are the nicest people. I have a secret, my two favorites…Jamie and Emily!!! Love those little girls…sorry….I can’t help it!
Monday, Tuesday, Wednesday….pretty normal to say the least, John’s nurse comes to change his dressing on his pick-line every Monday. Tuesday, just another Tuesday, Wednesday, today….the day before John’s bone marrow test, he did receive news from Dana Farber, that all of John’s tests up to date look great. It is pretty certain he will be using his own marrow for the transplant. Great news! The nurse from Dana told John he should be able to make a date to come to Boston the beginning of Nov. and be home for Thanksgiving! Now we really would be giving thanks! She will be sending out a packet to explain in further detail. We will still need to take a day before hand to go up and speak with Dr. Jacobsen. John needs to go to the hospital and speak with him and get the full explanation of the bone marrow transplant from start to finish.
Oh my heart, heavy at times when I am writing I just want to break down and cry….sad, angry, angry at this disease and what it does to people….sad….very sad…. I know there is a light at the end of this tunnel…..I am just waiting for it to shine on us
Wednesday, September 9, 2009
Wednesday, the 9th, PET SCAN results
Called for John's PET Scan results this morning.....gulp! Nurse called the house around 10ish....handed the phone to John (he is in the bathroom)....I am trying to listen at the door....sounds like good news!! YES INDEED!! PET SCAN is CLEAN!!!!!!!! No sign of that nasty ass Cancer!!! OMG! SIGH OF RELIEF!!
WHEW!
Next step. Bone marrow test on the 17th with Dr. Castillo. I really hope that he has time to go over with John what his time frame is going to be from that point on. I understand he has to have his marrow tested and then wait another week for those results and then wait another 4-8 weeks before he can go for the bone marrow transplant. I want, I should say I hope Dr. Castillo will explain to him in full detail of what is going to happen. I would also love for Dr. Castillo to bring up the physician's name at Roger Williams hospital again that does the bone marrow transplants. I know that Dana Farber is the holy grail for people,everyone goes there, right. There should not be a question about it, right. Well I have a question about it. I am actually going to present this question to the Dr. Castillo and Dr. Jacobsen, who is the physican at Dana Farber. I want to know if Roger Williams is comparable to Dana Farber. I know Dana Farber is the best, why? Beacause people have been sent there for years, only because they are unaware there is a bone marrow transplant center in RI. I really need to find out more information on Roger Williams. I would love to get my hands to do the talking via email to Dr. Jacobsen at Dana Farber and ask him what he thinks of Roger Williams Hospital. What if he says to me or John for that matter, Roger Williams is an excellent hospital, yes, of course you can have your transplant done there. Would John go there? I am not trying to sound selfish and I hope it is not coming across that way. I want John to get the best treatment and care, no matter where he is. Anyone would do anything for a loved one in order to make them well again, the best doctor's, the best hospitals and the best care. I am there for him. There is not a doubt in my mind he will be fine...he will be back 110%....he has to....he just has to....
WHEW!
Next step. Bone marrow test on the 17th with Dr. Castillo. I really hope that he has time to go over with John what his time frame is going to be from that point on. I understand he has to have his marrow tested and then wait another week for those results and then wait another 4-8 weeks before he can go for the bone marrow transplant. I want, I should say I hope Dr. Castillo will explain to him in full detail of what is going to happen. I would also love for Dr. Castillo to bring up the physician's name at Roger Williams hospital again that does the bone marrow transplants. I know that Dana Farber is the holy grail for people,everyone goes there, right. There should not be a question about it, right. Well I have a question about it. I am actually going to present this question to the Dr. Castillo and Dr. Jacobsen, who is the physican at Dana Farber. I want to know if Roger Williams is comparable to Dana Farber. I know Dana Farber is the best, why? Beacause people have been sent there for years, only because they are unaware there is a bone marrow transplant center in RI. I really need to find out more information on Roger Williams. I would love to get my hands to do the talking via email to Dr. Jacobsen at Dana Farber and ask him what he thinks of Roger Williams Hospital. What if he says to me or John for that matter, Roger Williams is an excellent hospital, yes, of course you can have your transplant done there. Would John go there? I am not trying to sound selfish and I hope it is not coming across that way. I want John to get the best treatment and care, no matter where he is. Anyone would do anything for a loved one in order to make them well again, the best doctor's, the best hospitals and the best care. I am there for him. There is not a doubt in my mind he will be fine...he will be back 110%....he has to....he just has to....
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