We had great news today, the Consultant told Mari that there was no sign of lymphoma and all the tissue from the biopsy was thymic...that means Mari is a cancer free zone and can start planning her life again.
She, as we all are, are still coming to terms with everything. It was in June that a well-meaning Doctor told her that ' we can not promise to bring you through this' and promised really harsh chemo treatment and now, five months later she has no cancer! Quite a turn around for which we are so grateful. As a result of the way Mari has responded to the PET scans, which is still a relatively new technology, the Drs in Bristol are now saying that they will routinely biopsy people whose PET scan shows positive in their thymic area.
It is sobering to think that if Mari had not insisted on alternative treatment, she would be in the middle of a stem cell transplant regime!
She is also recovering from her surgery last week, a bit sore still but the news today makes that worthwhile. Before her surgery, her notes said that she should have an excision which is major surgery cutting her breast bone and would have had a very large scar. When we questioned this, we were told it was a typo and should have been an incision which is less severe and traumatic. They apologised for the typing mistake and also for the wrong diagnosis.
Mari has been signed off for a few more weeks till she is fully over the surgery so will be looking to relocate back to London after Christmas.
We have been incredibly grateful to all of you who have supported us, prayed for Mari, send blogs, cards, love and best wishes. It would have been a far more difficult journey without your help.
With all our love and our deepest gratitude. xx
Friday, November 6, 2009
Saturday, October 31, 2009
Surgery went well.
Thanks for your messages before the op. The surgery was done early in the morning, which meant Mari was able to come home that same day, in the evening. She is sore and will be uncomfortable for a few days but is coping well and was relieved to get it over with.
We are due to see her consultant on Thursday 5th November, when we will hopefully get the results from the biopsy. As soon as we know any thing we'll update the blog.
Thank you for all your love and prayers.
We are due to see her consultant on Thursday 5th November, when we will hopefully get the results from the biopsy. As soon as we know any thing we'll update the blog.
Thank you for all your love and prayers.
Thursday, October 22, 2009
Update
Mari had a long day in the Bristol Royal Infirmary yesterday in preparation for her surgery which is to be next Thursday 29th. The surgeon told her they will be testing for one of four possibilities. The possibilities are; Hodgkins Lymphoma, Thymus rebound, thymoma ( a benign tumour on the thymus which would require major surgery), or a teratoma. Of these a thymic rebound would be the most preferable!
Mari will go in early on Thursday, have the surgery under a general anaesthetic and hopefully be home that day. The results from the biopsy will take 5-10 days but we are hoping they will be ready in time for her next hospital appointment on the 5th November.
We are still in a bit of a state of limbo and there is a lot of waiting around for Mari with uncertainty about what to expect so we are grateful for all of your prayer, love and support. We will let you know how the surgery goes.
Mari will go in early on Thursday, have the surgery under a general anaesthetic and hopefully be home that day. The results from the biopsy will take 5-10 days but we are hoping they will be ready in time for her next hospital appointment on the 5th November.
We are still in a bit of a state of limbo and there is a lot of waiting around for Mari with uncertainty about what to expect so we are grateful for all of your prayer, love and support. We will let you know how the surgery goes.
Monday, October 19, 2009
This week...
Thank you for all your wonderful messages! Mari is still in limbo waiting for a date for surgery. She has a pre-op appointment this Tuesday at the BRI, so we should know more then, hopefully they will give us a date for surgery. We'll let you know.
Thanks again - Love from us x
Thanks again - Love from us x
Friday, October 2, 2009
Thymic Rebound?
Today we had a very significant and interesting appointment with Mari's Oncologist.
He began by telling us that the last four PET scans have showed no progression of the disease(not even August's scan - even though at the time they said there was some new growth). He and his colleagues have been in consultation with specialists in London and have all agreed that there is grounds for reasonable doubt that Mari has Hodgkins at this point. He said that they are cautiously optomistic that it could be a condition called Thymic Rebound. This can occur as a result of chemo and gives the appearance of malignancy on a PET scan.
The next step is to do a biopsy under general anaesthetic which will give a definitive answer. This surgery should happen in 2 weeks time.
We are still in a state of shock - it has been a very surreal day. It would obviously be amazing if the results come back to show it is not Hodgkins. The Consultant said that the past 4 months must have been an emotional nightmare for us and acknowledged that they are learning in this instance because this is such a unique case. At this stage, they are planning to write up the case in the medical journals etc. - should it prove to be Thymic Rebound. Ironically, if Mari had not taken the risk of choosing to have pre-chemo treatment, she would be in the middle of a very heavy chemo regime/stem cell transplant now - and perhaps unnecessarily.
They have given us grounds for hope but will not be confirmed until we get the surgery results.
Thank you for your love, prayers and for standing with us in so many amazing ways. We'll let you know as soon as Mari has a date for surgery.
With love - Us x
He began by telling us that the last four PET scans have showed no progression of the disease(not even August's scan - even though at the time they said there was some new growth). He and his colleagues have been in consultation with specialists in London and have all agreed that there is grounds for reasonable doubt that Mari has Hodgkins at this point. He said that they are cautiously optomistic that it could be a condition called Thymic Rebound. This can occur as a result of chemo and gives the appearance of malignancy on a PET scan.
The next step is to do a biopsy under general anaesthetic which will give a definitive answer. This surgery should happen in 2 weeks time.
We are still in a state of shock - it has been a very surreal day. It would obviously be amazing if the results come back to show it is not Hodgkins. The Consultant said that the past 4 months must have been an emotional nightmare for us and acknowledged that they are learning in this instance because this is such a unique case. At this stage, they are planning to write up the case in the medical journals etc. - should it prove to be Thymic Rebound. Ironically, if Mari had not taken the risk of choosing to have pre-chemo treatment, she would be in the middle of a very heavy chemo regime/stem cell transplant now - and perhaps unnecessarily.
They have given us grounds for hope but will not be confirmed until we get the surgery results.
Thank you for your love, prayers and for standing with us in so many amazing ways. We'll let you know as soon as Mari has a date for surgery.
With love - Us x
Friday, September 25, 2009
A busy day!
Mari had a full day today. She finally finished all her treatment in the Midlands this afternoon, followed by another pet scan this evening back in Bristol.
She was originally due to see her Consultant today, but this has been changed to next Thursday ( 1st October). They chose to give her a pet scan today instead. This will show where the cancer is at, for the starting point of chemo and give them something to measure the progress against.
It's been a long day. We will let you know the scan results as well as an update from the next appointment on Thursday, at the Oncology hospital.
Chemo will be starting soon now.
With our love and thanks for yours.
She was originally due to see her Consultant today, but this has been changed to next Thursday ( 1st October). They chose to give her a pet scan today instead. This will show where the cancer is at, for the starting point of chemo and give them something to measure the progress against.
It's been a long day. We will let you know the scan results as well as an update from the next appointment on Thursday, at the Oncology hospital.
Chemo will be starting soon now.
With our love and thanks for yours.
Thursday, September 10, 2009
Next Round of Treatment
Since the last blog update, we had the chance to go to Redding California for 5 days. It was a bit short but a great time and experience and good to have a few days in a completely different environment before all the chemo starts. We sweltered in temperatures of 40+C at the foot of a 14,000ft snow-capped mountain!
Mari starts her next round of pre chemo treatment this week which will conclude with some mini-surgery. She will then start chemo at the end of this month or start of October. The next Oncology appointment is on Thurs 24th which will determine the start of chemo.
As the date looms nearer, please pray for Mari. As we have said it is a daunting treatment.She has been doing really well and looks and feels remarkably well considering her illness.
After the next appointment we will let you know start dates etc.
Thanks again for all the comments, love and prayers that have been passed on. It is so appreciated
God bless
With love
Dave, Rhi, Phil and Mari
Mari starts her next round of pre chemo treatment this week which will conclude with some mini-surgery. She will then start chemo at the end of this month or start of October. The next Oncology appointment is on Thurs 24th which will determine the start of chemo.
As the date looms nearer, please pray for Mari. As we have said it is a daunting treatment.She has been doing really well and looks and feels remarkably well considering her illness.
After the next appointment we will let you know start dates etc.
Thanks again for all the comments, love and prayers that have been passed on. It is so appreciated
God bless
With love
Dave, Rhi, Phil and Mari
Friday, August 14, 2009
Todays Scan Result
Mari was told the result from last weeks scan today. The encouraging news is that the cancer is not growing rapidly. The benefit of this is that the Drs are willing to wait until the end of September/start of October to start chemotherapy allowing Mari to continue with her pre-chemo treatment in the Midlands. Should there be any sudden change in her health they would want to start the chemo straight away.
Another advantage of this is that it gives Mari chance to have a break before chemo. Friends have made it possible to visit Redding California and we can have a complete change of scenery. She knows that once the treatment starts it will be a long time before she is able to travel anywhere.
Thanks for your ongoing love and prayers. Your comments and support mean so much to Mari.
God bless
With love
The Days
Another advantage of this is that it gives Mari chance to have a break before chemo. Friends have made it possible to visit Redding California and we can have a complete change of scenery. She knows that once the treatment starts it will be a long time before she is able to travel anywhere.
Thanks for your ongoing love and prayers. Your comments and support mean so much to Mari.
God bless
With love
The Days
Thursday, July 30, 2009
More hospital visits
This past 10 days has been full of pre-chemo treatment at a clinic near Birmingham. It has meant going up every other day so there has been much travelling. A bright spot in the middle of it was that Mari was able to celebrate her grandmother's 100 birthday last weekend.
Tomorrow ( Thurs 30th) Mari has another appointment with her Oncology Consultant in Bristol with the possibility of another PET scan in the near future. We should then have a clearer idea of when the chemotherapy will start. The Oncologists are keen to get treatment underway as soon as possible but realise the importance of the pre-chemo treatment.
Please pray for a sense of right timing for all the treatment and that the growth of the cancer will be arrested in the meantime.
We will update when we have more information but can we thank you again for all the love and care shown by so many and for the prayer that has been raised all around the world.
God bless
With love
Mari, Phil, Dave and Rhi
Tomorrow ( Thurs 30th) Mari has another appointment with her Oncology Consultant in Bristol with the possibility of another PET scan in the near future. We should then have a clearer idea of when the chemotherapy will start. The Oncologists are keen to get treatment underway as soon as possible but realise the importance of the pre-chemo treatment.
Please pray for a sense of right timing for all the treatment and that the growth of the cancer will be arrested in the meantime.
We will update when we have more information but can we thank you again for all the love and care shown by so many and for the prayer that has been raised all around the world.
God bless
With love
Mari, Phil, Dave and Rhi
Friday, July 10, 2009
Todays Appointment ( 9/7/09)
Mari's appointment today was a spelling out of the treatment schedule for her course of chemo. This will start after Mari has had treatment at a clinic in the Midlands which is aimed at minimising the long term effects of the chemo.
She will have three courses of salvage chemo for which she will be hospitalised for up to 5 days for each. She will receive chemo each of these five days.The next course will follow after approx 21 days when her blood count has had chance to rebuild.
She may have a scan after the second course to ensure the cancer is responding to treatment.
When these courses are over, Mari will be hospitalised for up to a month. She will have treatment to extract stem cells from her blood and then hit with a very strong chemo. As soon as that is over, the cells will be transplanted back into her body and she will need to be in isolation for three weeks as her immune system will be extremely low.
If all goes to plan, it will be over in time for Christmas.
Please pray for;
The effectiveness of the pre-chemo treatment
That the cancer's growth will be slowed before she is able to have the chemo
Phil is returning from NZ tomorrow which is great news, please pray for them both at this stressful time.
The treatment is extremely daunting both physically and emotionally for Mari, esp as she is still recovering from the recent 9 months of chemo.
The timing of everything is important too.
Mari will have a permanent line ( known as a hickman line) inserted in to one of my the main veins in her chest. This will require a small surgical procedure but ultimately less needles/less harsh on her veins.
Many thanks and we will continue to keep you updated.
God bless
With love
The Days
She will have three courses of salvage chemo for which she will be hospitalised for up to 5 days for each. She will receive chemo each of these five days.The next course will follow after approx 21 days when her blood count has had chance to rebuild.
She may have a scan after the second course to ensure the cancer is responding to treatment.
When these courses are over, Mari will be hospitalised for up to a month. She will have treatment to extract stem cells from her blood and then hit with a very strong chemo. As soon as that is over, the cells will be transplanted back into her body and she will need to be in isolation for three weeks as her immune system will be extremely low.
If all goes to plan, it will be over in time for Christmas.
Please pray for;
The effectiveness of the pre-chemo treatment
That the cancer's growth will be slowed before she is able to have the chemo
Phil is returning from NZ tomorrow which is great news, please pray for them both at this stressful time.
The treatment is extremely daunting both physically and emotionally for Mari, esp as she is still recovering from the recent 9 months of chemo.
The timing of everything is important too.
Mari will have a permanent line ( known as a hickman line) inserted in to one of my the main veins in her chest. This will require a small surgical procedure but ultimately less needles/less harsh on her veins.
Many thanks and we will continue to keep you updated.
God bless
With love
The Days
Friday, July 3, 2009
A Long Difficult Day
A Long Day
Today has been a long and difficult day. The Consultant at the Oncology Dept explained the treatment that they would recommend. It is gruelling and will necessitate hospitalisation for the chemotherapy. There will be three courses of 'salvage chemo' which will be followed by taking Mari's Stem Cell and then two very aggressive courses of chemo which will be followed by a Stem Cell Transplant.
There will be a team discussion next Thursday when they will examine all the scans more closely etc and Mari will see them after that. She also has to go to a clinic in the Midlands tomorrow for further consultation. Though Mari has been told the cancer is treatable, it is a very daunting prospect especially as she has not fully recovered from the last Chemo.
We will keep you updated and want to thank you again for your love, support and prayer.
With much love
Us
Today has been a long and difficult day. The Consultant at the Oncology Dept explained the treatment that they would recommend. It is gruelling and will necessitate hospitalisation for the chemotherapy. There will be three courses of 'salvage chemo' which will be followed by taking Mari's Stem Cell and then two very aggressive courses of chemo which will be followed by a Stem Cell Transplant.
There will be a team discussion next Thursday when they will examine all the scans more closely etc and Mari will see them after that. She also has to go to a clinic in the Midlands tomorrow for further consultation. Though Mari has been told the cancer is treatable, it is a very daunting prospect especially as she has not fully recovered from the last Chemo.
We will keep you updated and want to thank you again for your love, support and prayer.
With much love
Us
Tuesday, June 30, 2009
Back into the routine of hospitals
Thanks for all the comments and support. Mari had a really good time in New York and it was a chance for some healthy distraction from what will be an intense week this week. Today, Tuesday, she is seeing her GP this morning, a consultant from Southmead Hospital this afternoon, blood tests tomorrow morning and appointments at the Cancer Centre in the afternoon and then she has two appointments with consultants on Thursday, one at the Oncology Dept in the morning and one at St Michaels in the afternoon. It is a full on week. We should know options etc at the end of the week.
We will keep you all updated by the end of the week. Thanks again for your love, support and prayers.
Much love
The days
We will keep you all updated by the end of the week. Thanks again for your love, support and prayers.
Much love
The days
Tuesday, June 23, 2009
Monday afternoon
Mari, Dave and Rhi have just returned from Southmead which was a chance to talk face to face with the specialist and go over things that were said on the phone. The next stage of treatment will be at Bristol Royal Infirmary and Mari should have an appointment there in the next couple of weeks.
We were told of the possible treatments that will be proposed and the probable side effects of them. The treatment will include Radiotherapy and some form of chemotherapy.Mari's preference would be to just have the radiotherapy because of short and long term effect of the chemo. It would appear that the tumour involved is one that wasn't completely dealt with first time round rather than a new cancer.
The Doctor told Mari that the best thing she could do is go away for a few days so she will fly out to New York tomorrow. It wont delay the next appointment.
As you can imagine, it is still sinking in and there is so much for Mari to process which she is bravely facing.
Thanks again for your love, support and prayers. They are so appreciated.
With much love
The Days
We were told of the possible treatments that will be proposed and the probable side effects of them. The treatment will include Radiotherapy and some form of chemotherapy.Mari's preference would be to just have the radiotherapy because of short and long term effect of the chemo. It would appear that the tumour involved is one that wasn't completely dealt with first time round rather than a new cancer.
The Doctor told Mari that the best thing she could do is go away for a few days so she will fly out to New York tomorrow. It wont delay the next appointment.
As you can imagine, it is still sinking in and there is so much for Mari to process which she is bravely facing.
Thanks again for your love, support and prayers. They are so appreciated.
With much love
The Days
Sunday, June 21, 2009
Saturday, 20th June
Thank you for all your responses. We so appreciate your love and prayers.
Mari is back in Bristol with me (Rhi) for the weekend and Dave has cut his time in Zambia short and is flying home on Monday.
We are booked for a preliminary discussion with the specialist in Southmead Hospital on Monday afternoon. Hopefully he will be able to give us an idea of the treatment the team in Bristol Royal Infirmary will recommend. He has encouraged Mari to take the trip she and her friend have planned to celebrate their 30th birthdays in New York. Looks like she's going next Tuesday for 6 days.
We'll update after Monday.
With our love and thanks, Rhi
Mari is back in Bristol with me (Rhi) for the weekend and Dave has cut his time in Zambia short and is flying home on Monday.
We are booked for a preliminary discussion with the specialist in Southmead Hospital on Monday afternoon. Hopefully he will be able to give us an idea of the treatment the team in Bristol Royal Infirmary will recommend. He has encouraged Mari to take the trip she and her friend have planned to celebrate their 30th birthdays in New York. Looks like she's going next Tuesday for 6 days.
We'll update after Monday.
With our love and thanks, Rhi
Friday, June 19, 2009
Bad news.
Hi,
My consultant called me today, with results from my recent pet scan. Unfortunately it was not good news. It showed a growth somewhere by my lungs, which means I need to have more treatment. The chemoetherapy I had before was called ABVD. I have already had the maximum ammount of this specific type of chemotherapy, so the Doctor told me they would need to give me another type and possibly radiotherapy. The chemotherapy they have mentioned to me, sounds extremely unpleasant.
At the moment, we don't have too many details because I am now being referred on to a new oncolcogy team. They might have to do some tests on me next ( possibly a biopsy etc).
I will start updating my blog again, as this is a useful way to communicate.
I just wanted to let you know. It is a really difficult time for us and we're in quite a bit of shock again. It is hard to make any plans right now as we're still unsure what the next step will be and what it will involve. I have been living in London for the past 3 months but I will probably need to have further treatment in Bristol so there are lots of practicalities to sort out. At the same time, this recent news (and all the implications) is still sinking in.
With Love, Mari
My consultant called me today, with results from my recent pet scan. Unfortunately it was not good news. It showed a growth somewhere by my lungs, which means I need to have more treatment. The chemoetherapy I had before was called ABVD. I have already had the maximum ammount of this specific type of chemotherapy, so the Doctor told me they would need to give me another type and possibly radiotherapy. The chemotherapy they have mentioned to me, sounds extremely unpleasant.
At the moment, we don't have too many details because I am now being referred on to a new oncolcogy team. They might have to do some tests on me next ( possibly a biopsy etc).
I will start updating my blog again, as this is a useful way to communicate.
I just wanted to let you know. It is a really difficult time for us and we're in quite a bit of shock again. It is hard to make any plans right now as we're still unsure what the next step will be and what it will involve. I have been living in London for the past 3 months but I will probably need to have further treatment in Bristol so there are lots of practicalities to sort out. At the same time, this recent news (and all the implications) is still sinking in.
With Love, Mari
Thursday, January 29, 2009
Today is a good day for us!
Good news!!!! I went to see the doctor today and it would seem that I have the all clear - whoop whoop! They said they can't be dogmatic about it but it looks really good - and this means no radiotherapy for me ( also my blood levels were looking normal)! In fact I don't have to go back to the hospital for another 3 months.
(They will keep a close eye on me for the next few years with check up's every three months).
I didn't sleep much last night, so I'm quite exhausted - but really releaved and also in shock! I don't think it has quite sunk in yet!
I don't know how to thank you all for all the wonderful ways you have shown love and support to me. From my experience, over the past year, battling cancer strips you of all hope and with out hope - living is very difficult - but your messages have restored hope in me and encouraged me to keep going when every thing seemed so bleak and painful. Thank you for taking the time to read the blog. Thank you for taking the time to leave me messages and pray for me.
You have been incredble and I will always remember your kindess to me. I've said this before but I'll say it again, I really think the support and love I have been shown has been every bit as valueable as the medical help. It's a shame to end our blogging relationship, but it is for good reasons.
Lots of love, Mari xxxx
(They will keep a close eye on me for the next few years with check up's every three months).
I didn't sleep much last night, so I'm quite exhausted - but really releaved and also in shock! I don't think it has quite sunk in yet!
I don't know how to thank you all for all the wonderful ways you have shown love and support to me. From my experience, over the past year, battling cancer strips you of all hope and with out hope - living is very difficult - but your messages have restored hope in me and encouraged me to keep going when every thing seemed so bleak and painful. Thank you for taking the time to read the blog. Thank you for taking the time to leave me messages and pray for me.
You have been incredble and I will always remember your kindess to me. I've said this before but I'll say it again, I really think the support and love I have been shown has been every bit as valueable as the medical help. It's a shame to end our blogging relationship, but it is for good reasons.
Lots of love, Mari xxxx
Saturday, January 24, 2009
Pet scan today...
Mari had her pet scan today, so she was in hospital for 2 1/2 hours. She has an appointment with her consultant on Wednesday morning at 9.30, so we will propbably get the results then. We will let you know...
Have a good weekend - Love from, us
Have a good weekend - Love from, us
Thursday, January 22, 2009
Pet scan
Thank you thank you for your lovely messages!
Just wanted to let you know that I have my PET scan on friday at 4pm at the BRI hospital in Bristol.
Will let you know results as soon as I hear, here's hoping it's scar tissue!
With love x
Just wanted to let you know that I have my PET scan on friday at 4pm at the BRI hospital in Bristol.
Will let you know results as soon as I hear, here's hoping it's scar tissue!
With love x
Thursday, January 15, 2009
Encouraging News
Mari has just had an encouraging phone call from her consultant . They are very pleased with the results from the scan. The cancerous tissue has shrunk considerably. There is one small area which they cannot tell whether it is fibrosis ( scar tissue) or 'living'. To determine this, Mari will need a PET scan in the next few days, which will peel this tissue back one more layer. If she does need to have radiotherapy, it is only a small amount of tissue that will need to be attacked. If the scan shows it is scar tissue, then Mari will not need to have radiotherapy.
The Consultant was very pleased and it is nice to have good news. The PET scan could be any day soon so you will be updated as soon as we know.
Thanks again for all the love, prayer and standing with us through this.
The Consultant was very pleased and it is nice to have good news. The PET scan could be any day soon so you will be updated as soon as we know.
Thanks again for all the love, prayer and standing with us through this.
Tuesday, January 13, 2009
No news yet!
Mari spoke to the hospital secretary today and was told that her CT scan results will be reviewed this Thursday by a multidisciplinary group, including a radiologist. ( That was all they were able to tell her).
We should have more of an idea after Thursday about the situation, so we will keep you updated.
Thank you for your messages and prayers as we await results.
With Love xx
We should have more of an idea after Thursday about the situation, so we will keep you updated.
Thank you for your messages and prayers as we await results.
With Love xx
Monday, January 5, 2009
CT scan today.
Thanks for your messages over Christmas. I hope you had a great time.
I have a CT scan tonight (but I'm not sure when we will get the results). I will keep you posted.
Happy new year to you all.
x
I have a CT scan tonight (but I'm not sure when we will get the results). I will keep you posted.
Happy new year to you all.
x
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