Isn't it amazing how things can take a turn....we have gone from all this anxious waiting to getting a phone call yesterday afternoon telling us they we are starting SCT (stem cell transplant) on Monday.
I can't believe the whole process is starting. I've done some reading up and must admit I am feeling a bit nervous as it is quite a procedure. There I was all excited that they are going to do the harvesting side of things this year and the transplant in January, which meant that we can after all have a normal Christmas and do some family things but from what I understand is it's going to be quite hectic.
We received a patient SCT programme from Prof Novitzky yesterday. Unfortunately not for the whole process but up to the 18th of December. But maybe this isn't such a bad thing because the transplant side of things is going to be really rough and it is probably better that we find out all about that next year.
I am going to give you a breakdown of what is happening when but at this stage I am not too sure of what it all entails. We have an appointment with Prof on Monday evening and I will be taking my shorthand notebook with :)
On Monday the 1st we have to go through to the chemo clinic where they will do his safety bloods and a cardio assessment. The schedule also says that he has to have a bone marrow biopsy but I don't think this will be done as Jimmy has had one within the last month so I am sure they will use these results.
If there is a need for another bone marrow biopsy then this will be done on Tuesday the 2nd.
On Wednesday the 3rd Jimmy will have a lung function test and then be admitted for pre-hydration.
He will remain in hospital for Thursday the 4th and Friday the 5th so that they can administer the heavy dose of chemo twice a day for two days.
Then on Wednesday the 10th I start giving him Neupogen injections daily for 10 days to stimulate stem cell production.
On Wednesday the 17th we has to go back to the clinic for full blood counts.
And on Thursday the 18th they start the collection of stem cells by aphaeresis. This could take anything from 1 to 4 days.
We will obviously know more on Monday after our appointment with Prof about what will effect him how and when and whether or not his immunity will be compromised around Christmas. I will try and update again on Monday evening to keep you all in the loop.
On the left hand side under pages you will find a link called 'Stem Cell Transplant'. Here I have explained in detail what a stem cell transplant is all about.
2014/11/29
2014/11/27
Thursday, 20th November
This has been such a roller coaster week for us....
At the time of my last blog we were floating in the clouds because we had heard that the decision made by the panel of professionals was to go ahead with SCT (stem cell transplant) and then continue with chemo after. We were hoping to get some news last Friday as to when the whole SCT process would begin.
I had resigned myself to the fact that we weren't really going to have a Christmas this year as Jimmy would be in isolation where only I can visit him and this would be every day for a minimum of 4 weeks. This time period obviously depending on how he copes with the treatment. We didn't hear anything on Friday so we were anxiously awaiting some news on Monday. On Monday Jimmy phoned Ilhaam but she was on a course for the day so he tried again on Tuesday when he was told it was a 2 day course. Of course he was eager to get hold of her on Wednesday morning for some news. I told him that she would probably be catching up with work on Wednesday so hopefully we would get some news on Thursday. He did speak to her on Wednesday and she said that she had forwarded the official approval from the medical aid to Prof but had not received any correspondence from him yet.
On Thursday (this being yesterday) morning Jimmy phoned her again and she told him that she was still waiting for the 6 week plan from Prof but that he had discussed Jimmy's case with her very briefly last Friday and thought that it would be best to postpone the SCT to January due to all the holidays. This was devastating news to both of us. I can't even explain to you in words how this made me feel. Jimmy finished his last cycle of chemo on the 20th of October so it is already just over a month of no treatment apart from his monthly Zobone (calcium) infusion. If we wait till the beginning of January for SCT this means sitting at home for two and half months waiting and in the meantime no chemotherapy so what is happening to his cancer counts? Jimmy is desperate to get this behind him and return to work as soon as possible. I tried to be strong but this was a huge blow. It's very hard to be strong, stay positive and keep fighting this terrible disease when we feel like we are just puppets and have to go along with whichever string is being pulled. I was completely devastated.
I decided that I would phone Ilhaam but wasn't sure of which course of action to take. Jimmy and I both feel that we have not rocked the boat and not even once demanded to speak to Prof about anything. So I decided to first phone the medical aid to find out what the norm for this sort of thing is over December. My plan was that if it is possible to have SCT over December but not the norm that I would play the emotional part and beg that a plan be made. If it is normal to have SCT treatment over December then I was going to go the whole 'this is unacceptable' route. The information I was given is that it depends from hospital to hospital and the doctors make the decision. I then phoned a dear friend who has good ties with these kind of procedures to ask her what she thought of this whole situation. She explained that Prof is a very respected Oncologist and didn't think it would be a decision he would make lightly. She explained that SCT is not a mickey mouse procedure and that hospitals do not work on a skeleton staff over the Christmas period but because so many staff are on leave they make use of agencies for temp staff. There is the possibility that you could have one doctor doing the morning round and another one doing the afternoon round and she is sure that Prof would prefer to do the SCT when he feels confident that his own staff are there and available. I did see the whole picture in a different light after this but still felt angry because they do SCT all the time and must have known some time ago that due the delay with the medical aid asking for another bone marrow biopsy it was pushing the procedure closer to Christmas and it would have been nice to have some communication from their side explaining that time is running out for this year and the reasons, instead of dropping this information that wasn't explained at all, like a bomb shell on us.
Jimmy and I both spent the rest of yesterday trying to get hold of Ilhaam or Dr Fine to get some answers. Eventually Jimmy decided to send Ilhaam an email explaining his concerns at the delay from a medical point of view as well as from a work point of view. He got hold of her later in the day and she said that she had forwarded his email to Dr Fine who would discuss it with Prof and they would come back to us. Oh boy.....this waiting game is a killer. I definitely have come to understand the term "when something eats at you like a cancer" !
Last night at about 11:30 we received an email personally written to us by Prof. He explained that he understands our concern and Jimmy's need to end the period of 'sick leave' with regards to his work. However, because the procedure requires first to harvest stem cells, which in itself takes 2-3 weeks, they would not be able to complete everything this year. He explained that a SCT is a routine and effective treatment for patients with Multiple Myeloma. But it is also a heavy treatment which can lead to organ failure, eg kidneys or heart, that requires the assistance from other disciplines. He has learned through experience that Christmas and New Year are a bad time for such therapies as if there were to be complications, most the people they rely on are on leave and then they all close for 2 weeks in January. He said that he is happy that we harvest stem cells this year, but will have to postpone the transplant to mid January.
We are both happy with this decision, in light of the fact that there is nothing else than can be done. Prof has basically met us half way by splitting the procedure in half, time-wise. This means that Jimmy will go back to work a bit later that he anticipated next year (although it does still fall into the time frame that Prof advised in the medical report that was sent to Komatsu) but not as late as should the entire procedure have been postponed till mid January. Another positive is that to stimulate stem cell growth prior to harvesting them, Jimmy will have to have a course of Neupogen injections for close on a week. This is the same injections that I have been giving him to bring up his white blood cell count after each heavy dose of chemo. In my opinion this would mean that his immunity would not be as compromised as it is now and we would possibly be able to do a few outings with the kids over the Christmas period. Obviously everything would have to be in moderation as he does tire extremely quickly.
So....once again we have a plan in place and we can move forward. Thanks again for all you messages of support yesterday. Thanks to Mike, Kathy, Patsy and Maureen for lending me you ear, for the hugs and the much needed cup of coffee. I bumped into Mike and burst into tears....for a man
you handled this very well Mike :)
On a lighter note; Brad wrote his last matric exam on Tuesday, woohoo, and passed his learners licence yesterday. Well done my boy. The girls have 2 more exams each to write and then we are home free.
At the time of my last blog we were floating in the clouds because we had heard that the decision made by the panel of professionals was to go ahead with SCT (stem cell transplant) and then continue with chemo after. We were hoping to get some news last Friday as to when the whole SCT process would begin.
I had resigned myself to the fact that we weren't really going to have a Christmas this year as Jimmy would be in isolation where only I can visit him and this would be every day for a minimum of 4 weeks. This time period obviously depending on how he copes with the treatment. We didn't hear anything on Friday so we were anxiously awaiting some news on Monday. On Monday Jimmy phoned Ilhaam but she was on a course for the day so he tried again on Tuesday when he was told it was a 2 day course. Of course he was eager to get hold of her on Wednesday morning for some news. I told him that she would probably be catching up with work on Wednesday so hopefully we would get some news on Thursday. He did speak to her on Wednesday and she said that she had forwarded the official approval from the medical aid to Prof but had not received any correspondence from him yet.
On Thursday (this being yesterday) morning Jimmy phoned her again and she told him that she was still waiting for the 6 week plan from Prof but that he had discussed Jimmy's case with her very briefly last Friday and thought that it would be best to postpone the SCT to January due to all the holidays. This was devastating news to both of us. I can't even explain to you in words how this made me feel. Jimmy finished his last cycle of chemo on the 20th of October so it is already just over a month of no treatment apart from his monthly Zobone (calcium) infusion. If we wait till the beginning of January for SCT this means sitting at home for two and half months waiting and in the meantime no chemotherapy so what is happening to his cancer counts? Jimmy is desperate to get this behind him and return to work as soon as possible. I tried to be strong but this was a huge blow. It's very hard to be strong, stay positive and keep fighting this terrible disease when we feel like we are just puppets and have to go along with whichever string is being pulled. I was completely devastated.
I decided that I would phone Ilhaam but wasn't sure of which course of action to take. Jimmy and I both feel that we have not rocked the boat and not even once demanded to speak to Prof about anything. So I decided to first phone the medical aid to find out what the norm for this sort of thing is over December. My plan was that if it is possible to have SCT over December but not the norm that I would play the emotional part and beg that a plan be made. If it is normal to have SCT treatment over December then I was going to go the whole 'this is unacceptable' route. The information I was given is that it depends from hospital to hospital and the doctors make the decision. I then phoned a dear friend who has good ties with these kind of procedures to ask her what she thought of this whole situation. She explained that Prof is a very respected Oncologist and didn't think it would be a decision he would make lightly. She explained that SCT is not a mickey mouse procedure and that hospitals do not work on a skeleton staff over the Christmas period but because so many staff are on leave they make use of agencies for temp staff. There is the possibility that you could have one doctor doing the morning round and another one doing the afternoon round and she is sure that Prof would prefer to do the SCT when he feels confident that his own staff are there and available. I did see the whole picture in a different light after this but still felt angry because they do SCT all the time and must have known some time ago that due the delay with the medical aid asking for another bone marrow biopsy it was pushing the procedure closer to Christmas and it would have been nice to have some communication from their side explaining that time is running out for this year and the reasons, instead of dropping this information that wasn't explained at all, like a bomb shell on us.
Jimmy and I both spent the rest of yesterday trying to get hold of Ilhaam or Dr Fine to get some answers. Eventually Jimmy decided to send Ilhaam an email explaining his concerns at the delay from a medical point of view as well as from a work point of view. He got hold of her later in the day and she said that she had forwarded his email to Dr Fine who would discuss it with Prof and they would come back to us. Oh boy.....this waiting game is a killer. I definitely have come to understand the term "when something eats at you like a cancer" !
Last night at about 11:30 we received an email personally written to us by Prof. He explained that he understands our concern and Jimmy's need to end the period of 'sick leave' with regards to his work. However, because the procedure requires first to harvest stem cells, which in itself takes 2-3 weeks, they would not be able to complete everything this year. He explained that a SCT is a routine and effective treatment for patients with Multiple Myeloma. But it is also a heavy treatment which can lead to organ failure, eg kidneys or heart, that requires the assistance from other disciplines. He has learned through experience that Christmas and New Year are a bad time for such therapies as if there were to be complications, most the people they rely on are on leave and then they all close for 2 weeks in January. He said that he is happy that we harvest stem cells this year, but will have to postpone the transplant to mid January.
We are both happy with this decision, in light of the fact that there is nothing else than can be done. Prof has basically met us half way by splitting the procedure in half, time-wise. This means that Jimmy will go back to work a bit later that he anticipated next year (although it does still fall into the time frame that Prof advised in the medical report that was sent to Komatsu) but not as late as should the entire procedure have been postponed till mid January. Another positive is that to stimulate stem cell growth prior to harvesting them, Jimmy will have to have a course of Neupogen injections for close on a week. This is the same injections that I have been giving him to bring up his white blood cell count after each heavy dose of chemo. In my opinion this would mean that his immunity would not be as compromised as it is now and we would possibly be able to do a few outings with the kids over the Christmas period. Obviously everything would have to be in moderation as he does tire extremely quickly.
So....once again we have a plan in place and we can move forward. Thanks again for all you messages of support yesterday. Thanks to Mike, Kathy, Patsy and Maureen for lending me you ear, for the hugs and the much needed cup of coffee. I bumped into Mike and burst into tears....for a man
you handled this very well Mike :)
On a lighter note; Brad wrote his last matric exam on Tuesday, woohoo, and passed his learners licence yesterday. Well done my boy. The girls have 2 more exams each to write and then we are home free.
2014/11/19
Wednesday, 19th November 2014
Isn't it weird how things work out?
Last night, sometime after our good news I told Jimmy, and Rohan and Patsy who had come to visit, that my throat was extremely sore. I have been sneezing for the last few days and this is normally a good sign for me that something is brewing but I put it down to this awful south easterly wind that has been blowing a gale for days on end now. And I did what I have been doing since Jimmy's diagnoses and took regular doses of Vitamin C powder.
This morning I woke up with my throat on fire and clammy skin. I phoned straight away for a doctors appointment and have just come back from the chemist with a shopping bag full of medicine. I have acute pharyngitis and a fever. I can't believe it! I haven't even had as much as a cold in the last almost 5 years. And now, when it's the last thing I need, I get sick. I told Dr Bell he needs to wave a magic wand as I cannot afford to get sick now. Apart from infecting Jimmy, it means I can't take him to the clinic as I will put all the other cancer patients at risk and there is no way I can go anywhere near F4 isolation ward with a contagious ailment. He has given me Penicillin and I need to get an extra dose in during today and he said to sleep in a different room tonight and in 24 hours I shouldn't be contagious anymore.
I have given my body a good talking to. I said "you have been fighting so hard at staying positive and getting through the hard days, been strong and not gotten sick up until now and this is not on! You cannot let me down now, just before stem cell transplant".
This actually sucks big time because all I want to do is give Jimmy hugs and kisses in light of our wonderful stem cell transplant news.
You would not believe how big the smile on his face was yesterday when he came into our room to tell me that Mrs Viljoen has just phoned. It is a memory I will never forget.
Thanks to each and everyone of you for all lovely messages, emails and phone calls. We truly would never be able to walk this road without you.
Your love and support has been our pillar of strength.
Last night, sometime after our good news I told Jimmy, and Rohan and Patsy who had come to visit, that my throat was extremely sore. I have been sneezing for the last few days and this is normally a good sign for me that something is brewing but I put it down to this awful south easterly wind that has been blowing a gale for days on end now. And I did what I have been doing since Jimmy's diagnoses and took regular doses of Vitamin C powder.
This morning I woke up with my throat on fire and clammy skin. I phoned straight away for a doctors appointment and have just come back from the chemist with a shopping bag full of medicine. I have acute pharyngitis and a fever. I can't believe it! I haven't even had as much as a cold in the last almost 5 years. And now, when it's the last thing I need, I get sick. I told Dr Bell he needs to wave a magic wand as I cannot afford to get sick now. Apart from infecting Jimmy, it means I can't take him to the clinic as I will put all the other cancer patients at risk and there is no way I can go anywhere near F4 isolation ward with a contagious ailment. He has given me Penicillin and I need to get an extra dose in during today and he said to sleep in a different room tonight and in 24 hours I shouldn't be contagious anymore.
I have given my body a good talking to. I said "you have been fighting so hard at staying positive and getting through the hard days, been strong and not gotten sick up until now and this is not on! You cannot let me down now, just before stem cell transplant".
This actually sucks big time because all I want to do is give Jimmy hugs and kisses in light of our wonderful stem cell transplant news.
You would not believe how big the smile on his face was yesterday when he came into our room to tell me that Mrs Viljoen has just phoned. It is a memory I will never forget.
Thanks to each and everyone of you for all lovely messages, emails and phone calls. We truly would never be able to walk this road without you.
Your love and support has been our pillar of strength.
2014/11/18
Tuesday, 18th November 2014
As you know Jimmy's motivation for stem cell transplant went in front of the committee today between 2pm and 4pm. At 4pm Jimmy asked me if he should phone and find out if there is any news. I told him I didn't think he would get through as I was sure they closed at 4pm. Anyway, he tried and got no answer.
Not 5 minutes ago his cell phone rang and it was Mrs Viljoen from the medical aid to say that she thought she would phone and let us know that they had just got out the meeting and stem cell transplant has been approved.
Not 5 minutes ago his cell phone rang and it was Mrs Viljoen from the medical aid to say that she thought she would phone and let us know that they had just got out the meeting and stem cell transplant has been approved.
STEM CELL TRANSPLANT HAS BEEN APPROVED
This is the same lady who organised the injections for us through the pharmacy at Panorama Hospital. Nice to know that there are people who really care and not just doing their job.
She is going to let Ilhaam/ Prof Novitzky know in the morning and I will update again once we know more and when the whole 6 week process starts.
Thank you so much for all your prayers and positive thoughts.
And last but not least, wishing my Mom and Dad a happy 47th wedding anniversary today.
2014/11/17
Monday, 17th November
The days and weeks have really been dragging....I constantly feel like we are living in limbo.
Since last I updated, the stem cell transplant motivation with Jimmy's bone marrow biopsy results have been re-submitted to the medical aid. I had one of those gut feels on Friday and thought we were going to get some news but nothing. Last night I got into bed and was thinking about the week ahead and it's as if a calm has come over me. I know we will be getting an answer this week and a plan will be laid out for Jimmy. I believe that the best decision will be made and we will be able to move forward and have some positive results.
While I am typing Jimmy phoned through to the medical aid and the motivation is going in front of the panel tomorrow afternoon from 2pm to 4pm. Hopefully well have an answer on Wednesday morning.
The kids are all still busy with final exams so they were studying this weekend. It was Shannon's 18th birthday on Saturday. It makes it very difficult with Jimmy's blood counts being so low and the fact that we can't go out. So Shan spent the day with her mom on Saturday and then on Saturday evening we booked a table at the Toad for the girls to go out for dinner and Shan had her first legal drink. They ended up getting a group of friends together so I think it turned out alright and a good time was had. We didn't end up seeing much of Shannon on her birthday and only had birthday cake on Sunday but we will have to make it up to all the kids next year on their birthdays when we can enjoy the outing together.
Technology is so amazing. I have been following a blog called Julie's Myeloma and after months of just following I decided to comment on her post. If you noticed the comment at the bottom of my blog last Monday you will see it is from Julie. Amazing to think that we can become friends from two different ends of the world, have something so devastating in common and even more strange is that her husband's name is Jim. Julie had her stem cell transplant in 2010.
Well, hopefully I will be back blogging on Wednesday with some important news...
Since last I updated, the stem cell transplant motivation with Jimmy's bone marrow biopsy results have been re-submitted to the medical aid. I had one of those gut feels on Friday and thought we were going to get some news but nothing. Last night I got into bed and was thinking about the week ahead and it's as if a calm has come over me. I know we will be getting an answer this week and a plan will be laid out for Jimmy. I believe that the best decision will be made and we will be able to move forward and have some positive results.
While I am typing Jimmy phoned through to the medical aid and the motivation is going in front of the panel tomorrow afternoon from 2pm to 4pm. Hopefully well have an answer on Wednesday morning.
The kids are all still busy with final exams so they were studying this weekend. It was Shannon's 18th birthday on Saturday. It makes it very difficult with Jimmy's blood counts being so low and the fact that we can't go out. So Shan spent the day with her mom on Saturday and then on Saturday evening we booked a table at the Toad for the girls to go out for dinner and Shan had her first legal drink. They ended up getting a group of friends together so I think it turned out alright and a good time was had. We didn't end up seeing much of Shannon on her birthday and only had birthday cake on Sunday but we will have to make it up to all the kids next year on their birthdays when we can enjoy the outing together.
Technology is so amazing. I have been following a blog called Julie's Myeloma and after months of just following I decided to comment on her post. If you noticed the comment at the bottom of my blog last Monday you will see it is from Julie. Amazing to think that we can become friends from two different ends of the world, have something so devastating in common and even more strange is that her husband's name is Jim. Julie had her stem cell transplant in 2010.
Well, hopefully I will be back blogging on Wednesday with some important news...
2014/11/10
Monday, 10th November
I'm just popping in for a quick visit....that's what it feels like when I am 'talking' to you all.
We heard from Ilhaam this morning that the medical aid have already come back and asked for a schedule of the costs involved for stem cell transplant. She feels that this is a positive step as they haven't written off the idea completely and recommended another treatment yet. She is busy with the paperwork now and is hoping to get a final answer from them by the end of the week.
It is amazing how you learn to live with and accept the daily stresses. I know what I want the answer to be but it is almost like I am at peace this week and know that whatever decision is made, is being made by a panel of professional people and I need to trust them.
Today is my sister Debbie's birthday. Sisters like you are only made for those who are lucky, fortunate and blessed like me. On your special day, I wish that your life ahead brings as much joy as you have brought in my life until now.
We heard from Ilhaam this morning that the medical aid have already come back and asked for a schedule of the costs involved for stem cell transplant. She feels that this is a positive step as they haven't written off the idea completely and recommended another treatment yet. She is busy with the paperwork now and is hoping to get a final answer from them by the end of the week.
It is amazing how you learn to live with and accept the daily stresses. I know what I want the answer to be but it is almost like I am at peace this week and know that whatever decision is made, is being made by a panel of professional people and I need to trust them.
Today is my sister Debbie's birthday. Sisters like you are only made for those who are lucky, fortunate and blessed like me. On your special day, I wish that your life ahead brings as much joy as you have brought in my life until now.
2014/11/06
Thursday, 6th November
The dreaded blog.....I have started this one quite a few times and given up. I really look forward to the day that I have some supadupa news to share with you all.
We went through to the chemo clinic for Jimmy to have in monthly Zobone infusion (calcium to strengthen his bones) on Monday so that should he have a fall hopefully his bones have been strengthened enough that he won't experience a break.
I am very glad that the sun is out and the last few days have been warmer as Jimmy went for another walk around the block this morning. He has been through a very down patch and with what took a lot of encouragement from my side he has been much better over the last 5 days or so. He has been more talkative and made the odd cup of tea, just more in touch with me and what's going on around the house and it has been awesome. It is so easy to just sit in the chair and do work and watch TV and not comment on much.
We got the results of the bone marrow biopsy and at long last the medical report from Prof Novistzky, which is needed by Komatsu. It is not as good as we thought it would be. His tumour burden has increased by a few percentages. From the results I can see, compared to the original readings in April, that it came down in July and has now increased to slightly more than it was when he was first diagnosed. This is proof again that he has definitely hit a plateau, as is reported as failing to achieve VGPR which is 'very good partial remission'. Prof has once again sent a motivation off to the medical aid as in his opinion Jimmy should have a stem cell transplant now and then some vigorous chemo post stem cell transplant and he is sure that his body will react better to the chemo post stem cell transplant. The report basically says that he feels that we have a good chance that if the stem cell transplant is a success and he reacts well to the intensification of this treatment post stem cell transplant he will be able to resume some or all of his activities, depending on his rate of recovery, in about 6 months.
Now that I have become more familiar with all this cancer terminology I am quite astounded at just how bad Jimmy originally presented in April at the time of diagnosis. "Mr Smith presented with quite extensive features of multiple myeloma with advanced clinical manifestations including lytic lesions (these are the cancer tumours which were found in his skull, arms, legs, and ribs), anaemia, renal failure (he was admitted to hospital as kidney failure is life threatening) and hypercalcaemia (this is also life threatening due to unusually high doses of calcium found in the blood as a result of the cancer cells in the bone marrow)".
In just a little over a week we will be 7 months into this journey. On reading the report yesterday my first reaction was that we have come no where in 7 months but when I go back and read his original diagnoses I realise how blessed we are. It also reminds me how far Jimmy has actually come; from using a wheel chair to using a walking frame to going for a walk around the block.
Yesterday was very emotional for Jimmy and myself (although he doesn't like to show it) and I refuse to show it in front of him. I felt that this cancer was winning the battle but this morning I feel blessed for how far he has come. I feel positive that the decisions that will be made by Prof and the panel at the medical aid will be the right one and I look forward to moving onwards and upwards when we get an answer in about a week.
And I almost forgot.....Well done Loren on passing your drivers licence first time. It was quite weird waving goodbye to Loren and Emma this morning in the driveway as they left for school together with Loren at the wheel. <3
We went through to the chemo clinic for Jimmy to have in monthly Zobone infusion (calcium to strengthen his bones) on Monday so that should he have a fall hopefully his bones have been strengthened enough that he won't experience a break.
I am very glad that the sun is out and the last few days have been warmer as Jimmy went for another walk around the block this morning. He has been through a very down patch and with what took a lot of encouragement from my side he has been much better over the last 5 days or so. He has been more talkative and made the odd cup of tea, just more in touch with me and what's going on around the house and it has been awesome. It is so easy to just sit in the chair and do work and watch TV and not comment on much.
We got the results of the bone marrow biopsy and at long last the medical report from Prof Novistzky, which is needed by Komatsu. It is not as good as we thought it would be. His tumour burden has increased by a few percentages. From the results I can see, compared to the original readings in April, that it came down in July and has now increased to slightly more than it was when he was first diagnosed. This is proof again that he has definitely hit a plateau, as is reported as failing to achieve VGPR which is 'very good partial remission'. Prof has once again sent a motivation off to the medical aid as in his opinion Jimmy should have a stem cell transplant now and then some vigorous chemo post stem cell transplant and he is sure that his body will react better to the chemo post stem cell transplant. The report basically says that he feels that we have a good chance that if the stem cell transplant is a success and he reacts well to the intensification of this treatment post stem cell transplant he will be able to resume some or all of his activities, depending on his rate of recovery, in about 6 months.
Now that I have become more familiar with all this cancer terminology I am quite astounded at just how bad Jimmy originally presented in April at the time of diagnosis. "Mr Smith presented with quite extensive features of multiple myeloma with advanced clinical manifestations including lytic lesions (these are the cancer tumours which were found in his skull, arms, legs, and ribs), anaemia, renal failure (he was admitted to hospital as kidney failure is life threatening) and hypercalcaemia (this is also life threatening due to unusually high doses of calcium found in the blood as a result of the cancer cells in the bone marrow)".
In just a little over a week we will be 7 months into this journey. On reading the report yesterday my first reaction was that we have come no where in 7 months but when I go back and read his original diagnoses I realise how blessed we are. It also reminds me how far Jimmy has actually come; from using a wheel chair to using a walking frame to going for a walk around the block.
Yesterday was very emotional for Jimmy and myself (although he doesn't like to show it) and I refuse to show it in front of him. I felt that this cancer was winning the battle but this morning I feel blessed for how far he has come. I feel positive that the decisions that will be made by Prof and the panel at the medical aid will be the right one and I look forward to moving onwards and upwards when we get an answer in about a week.
And I almost forgot.....Well done Loren on passing your drivers licence first time. It was quite weird waving goodbye to Loren and Emma this morning in the driveway as they left for school together with Loren at the wheel. <3