Mari's news

It is thymic rebound!!

2009-11-06T05:01:00.003+13:00

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

Surgery went well.

2009-10-31T11:47:00.003+13:00

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.

Update

2009-10-22T09:25:00.004+13:00

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.

This week...

2009-10-19T07:42:00.002+13:00

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

Thymic Rebound?

2009-10-02T06:53:00.003+13:00

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

A busy day!

2009-09-25T08:32:00.002+12:00

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.

Next Round of Treatment

2009-09-10T23:47:00.004+12:00

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

Todays Scan Result

2009-08-14T07:00:00.002+12:00

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

More hospital visits

2009-07-30T07:01:00.002+12:00

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

Todays Appointment ( 9/7/09)

2009-07-10T04:27:00.003+12:00

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

A Long Difficult Day

2009-07-03T05:57:00.000+12:00

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

Back into the routine of hospitals

2009-06-30T20:41:00.002+12:00

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

Monday afternoon

2009-06-23T03:09:00.002+12:00

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

Saturday, 20th June

2009-06-21T05:24:00.002+12:00

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

Bad news.

2009-06-19T03:16:00.003+12:00

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

Today is a good day for us!

2009-01-29T06:05:00.002+13:00

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

Pet scan today...

2009-01-24T09:55:00.002+13:00

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

Pet scan

2009-01-22T00:16:00.001+13:00

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

Encouraging News

2009-01-15T00:35:00.002+13:00

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.

No news yet!

2009-01-13T04:13:00.002+13:00

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

CT scan today.

2009-01-05T23:14:00.004+13:00

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

Happy Christmas!

2008-12-16T10:22:00.002+13:00

Thanks for your encouraging messages, it is so good to know that I don't have to have more chemotherapy! I am still recovering from the last round, but looking forward to having a decent break from it all over Christmas.

I got a letter in the post telling me I am booked to have a CT Scan on Jan 5th 2009 at Frenchay Hosptial, so that will indicate what's next for me in terms of treatment. I will of course keep you updated in the New Year on how things progress and what the CT scan shows.

I just wanted to wish you all a very very Happy Christmas and thank you once again for all your wonderful support and prayers, it has been incredible.
Love, Mari

Chemo is over

2008-12-12T08:42:00.004+13:00

Mari has finally finished 8 months of chemo which is a wonderful relief. Eventually they found a vein this morning after several attempts, Mari did react to one of the drugs with cold, shivering and increased temperature. She had to be given extra steroids to combat the reaction. She is now in bed recovering.

Mari will have to go back for a scan in the middle of January to determine whether more treatment is needed.It would be wonderful if she didn't need any. She has a month to get over the battering her body has had over the past months.

We will update again over the next few days. We want you all to know how grateful Mari is for the love, support, prayer and encouragement you have given in recent months.

Thanks again
With love
The Days and Phil

Chemo tomorrow - last one!

2008-12-11T04:09:00.001+13:00

Chemo is going ahead tomorrow for Mari at 11 am in Southmead hospital. Number 16 - the last one!
Thanks for all your messages and for celebrating with us, we will let you know how tomorrow goes.
Love from us all.

A good week!

2008-12-07T06:00:00.003+13:00

We went away to Cornwall for the week, which was lovely and thankfully I have felt pretty well generally.

I have my final chemo ( number 16) coming up this week on Thursday at 10 am and the usual injections/blood tests before. I am already SO excited about finishing chemo, but I will have to put the celebrations on hold as I have to go straight home to bed after chemo. It will be great to have a break from treatment over the Christmas holls.

I will be going back in to hospital for tests in January and then we will have more of an idea about how things are looking and whether or not I will need to have radiotherapy. I am really hoping I won't have to - but also trying to prepare myself in case I do.

I'll let you know when we have dates for that as well as how this coming week goes.
With love and thanks for your encouragement and for standing with me through this year, Mari x

Update.

2008-11-29T04:53:00.002+13:00

Hya,
Chemo went smoothly yesterday! Thankfully they found a vein quickly and I slept for a large part of the time. The nurse says the chemo seems to go in easier when I sleep - something to do with me being more relaxed and my veins opening up!
So all up, it was quite quick - I can't believe I only have one more chemo to go. At one point, it felt like it would never end but finally the end is in sight - now that is a good feeling!
Thanks for continuing to check up on my progress and for all your care. I do love reading your messages, they always cheer me up!
Love Mari x

Chemo tomorrow - number 15

2008-11-27T12:14:00.002+13:00

Hi,
Thanks for your messages.
Mari has chemo tomorrow at 10 am, this will be her second to last chemo! She has had her usual blood tests and injections this week, as well as a helpful session with the doctor, who was able to answer lots of her questions about life post chemo (and questions related to radiotherapy, incase Mari has to have it in the new year - though we are hoping not)!

We will let you know how tomorrow goes.
With love and thanks.

Much better!

2008-11-17T23:26:00.003+13:00

Hi,
Thanks for you kind messages. I wanted to let you know that I am feeling a lot better now - and I have managed to keep fluids down, so no hospital for me, (whoop whoop)!

I have this week off before round 15 next Thursday.
Enjoy your week.
With love and thanks, Mari

A bad night!

2008-11-16T05:20:00.002+13:00

Mari did not have a good night last night. She has picked up a tummy bug and so was up all night with d and v. She has to try to keep as much liquid down as possible otherwise she will have to go back into hospital which she would rather not have to do.

We dont know whether it is a bug that is going around at the moment or more specifically related to her treatment. Please pray that she will quickly get over it.

Many thanks

With love

The Days

Session 14 over

2008-11-14T04:19:00.003+13:00

Thanks for your prayers and messages. Mari has just returned home from the hospital. The nurses had problems getting a vein and after several painful attempts and resorting to putting her arm in a bucket of hot water after 40 minutes they found a vein. When the chemo eventually started, it wasn't painful. The nurse told Mari that her veins are tortuous!

There was good news from the X ray, the area of concern after pneumonia was all clear. Although the Consultant said an X ray would not be as specific as a scan, she was encouraged that the mass on Mari's chest is shrinking so we are praying that in the final two chemo sessions, the mass will completely disappear.

Thanks again and we will update you again after the weekend,

God bless

With love

The Days

Round 14.

2008-11-11T05:59:00.004+13:00

Hi,
Just updating you...
I have been feeling much better since I last wrote and I had a great weekend.
I had my injection at home today which was very convenient ( same again tomorrow). I do, however, have to go in to hospital tomorrow for an x-ray, they want to check things out post pneumonia.
I am back in hospital again on Wednesday for routine blood tests before round 14 of chemo on Thursday morning!

There is not much more to report right now but I will let you know how this week goes as well as x-ray results etc.
Thank you friends xx Mari

This week.

2008-11-06T11:18:00.005+13:00

Just updating you... I have felt quite rough this week but this is just the usual post chemo feeling. Today I had to go in to the hospital as one of my veins is inflamed, it is very hard and sore. The Dr's have put me on a course of antibiotics just to ensure it doesn't turn nasty.

I am back in hospital again next week on Wednesday for tests and on Thursday for round 13 of chemo, (after having my injections at home for the first time)!
I hope you all have a lovely weekend, thanks for continuing to read this blog and post such lovely messages.
With Love, Mari x

Chemotherapy today.

2008-10-31T08:26:00.002+13:00

Thanks for your prayers - today went well. The nurses found a vein quickly and it was a good vein - it didn't play up last the one did last week.

It's good to tick another round off, 3 more to go! The Dr told us that soon Mari is due to have another chest x-ray to find out how things are looking after the pneumonia. We will let you know when we have a date for this.

It is now possible for Mari to have some of the injections ( which she is having regularly now, to boost her white blood cells) at home. This means less hospital visits - horray!
The Dr also confirmed that after treatment number 16, (scheduled on December 11th), Mari will have a few weeks off before returning to hospital in January for CT scans/pet scans etc. They will then decide whether Mari needs some radiotherapy at the oncology hospital. We really hope the cancer will be all gone by then.

Mari is looking forward to having a few weeks off after the final chemotherapy round.

She is now in bed resting and recovering from today - grateful for your messages and prayers. Today went very smoothly and quickly which was a great relief. There is a nasty sickness bug going around ( warnings about it in the hospital) and 3 people in our house have been unwell with that, plus friends. It would be very complicated if Mari gets infected and she would have to go straight back in to hospital. Fortunately, so far she hasn't caught it which is amazing given the state of her immune system right now following treatments.

There are a few things to pray about, we are starting to look ahead now and longing for this to all be over. We are hoping for some good news in January but also preparing ourselves for the possibility of further treatment if necessary.

We will write more soon.
Love and thanks.

Hospital again this week

2008-10-27T01:03:00.004+13:00

Hi,

I have enjoyed every minute of my needle-free week this week. I will be in and out of hospital over the next four days for the usual blood tests and injections. If all goes according to plan I will be having chemo ( number 13) on Thursday at 10 am.

I have noticed I am starting to feel more positive and I think that's because finally the end of treatment is in sight, with only 4 more to go! Then I will have a series of tests/CT scans/pet scan etc to assess the situation. The Dr's have always said I might need to have some radiotherapy when the chemo finishes so obviously I am hoping and praying this won't be the case.

Your messages have helped me to keep positive too of course so thanks a million, as always.
Love love love Mari x

End of Round 12

2008-10-17T05:28:00.002+13:00

Mari is now 3/4s of the way through her chemo. Today started off well with the Nurse quickly finding a vein which was a relief, however parts of today were quite gruelling. She was not too well after the pneumonia and various injections from earlier this week and the chemo was fairly torrid today. It does seem to vary from session to session. Her temperature was starting to rise through the chemo so we have to watch that over the next couple of days. She has gone straight to bed on arriving home.

Please pray that her temperature will stabilise, otherwise it is straight back into hospital. Pray too that the chemo will do its work. She will have a scan before the final treatment to determine whether the cancer has gone. We would all love that to be the case.

Many thanks again for your love and concern.

God bless
With love
Dave, Rhi, Phil and Mari

This week.

2008-10-14T04:29:00.002+13:00

Thanks for your lovely messages.
I was in hospital again today, having my usual tests and injection to boost my white blood cells. Back in tomorrow and Wednesday for more of the same. I will also be having a flu jab and pneumonia jab as I am considered "at risk"! So, lots of needles this week! Then round 12 of chemo on Thursday, if my tests show that I am well enough!
I am counting the treatments down now, and cannot wait to feel normal again!

We will keep updating you.
With much love and appreciation, Mari x

Update.

2008-10-07T08:55:00.002+13:00

Mari is keeping pretty well post chemo. She is experiencing a few of the usual side effects which are unpleasant, but nothing major. She is going back in to hospital next week for injections on Monday and Tuesday, tests on Wednesday and then round 12 of chemo on Thursday ( if blood tests show she is well enough to have it), so she has this week to rest and recover from the last treatment. We will keep you updated.

Have a great week and thank you ~ x

Today.

2008-10-03T12:07:00.005+13:00

Fortunately, Mari was able to proceed with chemo today ( 11 down,5 to go)! It was a long day, she was in hospital from 10.30 am through to gone 5 pm. Tomorrow, she is due to have an injection, which has some unpleasant side effects - but other than that, she will be resting up over the weekend in bed.
She is really grateful that you continue to read this blog and leave such wonderful messages.
Thank you. It is an encouragement to us all.

We will let you know how she gets on after the next few days ( she has to take 10 plus tablets the day after chemo, so she is fairly drugged up initially for a few days).

Have a great weekend.
Love from us xxxx

Chemo tomorrow, number 11.

2008-10-02T09:55:00.003+13:00

Hi,

Thanks for your messages and continued support. I have had my two injections this week, as planned. Tomorrow morning I'm going in to hospital (in the morning) for blood tests.
If my white blood cells are up to it, I will have chemo,round 11, later on in the morning. I have to wait around for test results before we can proceed with treatment but hopefully the injections will have done the trick. I then need to have another injection on Friday, so my bod will be taking a bit of a hammering over the next couple of days.
Will let you know how I get on with it all. As unpleasant as the chemo is, it is always good to tick another one off.
With love and thank you again for continuing to read this and for posting such lovely messages, Mari xx

Doing well.

2008-09-23T04:40:00.002+12:00

Thanks for your messages.
Mari is doing pretty well post chemo, so we just wanted to let you know.
She is going back in to hospital on Monday and Tuesday of next week for injections which hopefully will boost her white blood cells allowing her to have chemo ( round 11) the following Thursday. We will keep you updated.
With Love.

Update from today.

2008-09-19T10:23:00.003+12:00

Mari finally had round ten of chemo today, after waiting around for a while, having tests. Her tests on Tuesday ( after injections) were still too low to have chemo, but fortunately blood tests today showed an increase in levels so chemo went ahead!

We finished in hospital around 6pm due to trouble with veins so it was a long day but we were relieved to get another round over with.
Also found out today, that Mari will now have to have injections before each round of chemo, because her white blood cells do not seem to be regenerating by themselves. She has all the usual drugs, which she can use to control nasty side effects again this time round.

Thanks for your faithful prayers, have a great weekend.
Good night from us xxx

Tomorrow.

2008-09-18T05:50:00.002+12:00

Hi there,
I have been going in to hospital for injections, which will boost my white blood cells. The injections leave me feeling quite achey but hopefully they will have done the trick. I am going back in to hospital tomorrow morning for tests. If the test results show that I am well enough, I will have my tenth round of chemo tomorrow around midday. We will let you know what happens.
With thanks and all our love,
Mari

Chemo delayed

2008-09-16T02:41:00.002+12:00

Mari had blood tests today (routine). However, the results showed that her white blood cells are too low to have chemo as planned tomorrow. Therefore she will have to go in to hospital today and tomorrow for injections which will hopefully boost her white blood cells. If this all works, then she will be having chemo on Thursday now instead!

It seems that her white blood cells are generally not bouncing back after treatment so if you could pray that this changes, we would be most grateful. Dr's say they do not know the long term effects of using this injection, so they only pull it out if they absolutely have to!

We will let you know how things go. Mari is a bit disheartened by this news. She is due her tenth round of chemo and is scheduled to have 16 rounds in total. Though the chemo is unpleasant, she is keen to get it over with a.s.a.p.

With Thanks.

Chemo - round 10!

2008-09-14T00:44:00.002+12:00

Mari is going back in to hospital on Monday for usual tests. It will be interesting to see how her white blood cells are doing.
She then ( if well enough) will be back in hospital on Tuesday afternoon for round 10 of chemo!
We will let you know how things go.
Have a lovely weekend.

Doing well.

2008-09-08T10:57:00.005+12:00

Hya,
Thanks a million for your messages while I was in hospital. I am so pleased to have put that behind me now and I'm still REALLY enjoying being at home, in my own bed ... free from drips, injections, hospital smells/sounds etc....
I am doing pretty well post chemo ( better than expected) and so I just wanted to let you know.

Thanks again for your amazing support. Mum and Dad would print off the blog messages and bring them in to hospital each morning for me to read. Your messages really did brighten up my days!

Have a good week.
Love Mari x

Home sweet home.

2008-09-03T09:09:00.003+12:00

Mari got home last night at around 11pm, after her final IV.

She was so pleased to be home and free from injections, blood tests, wires up her nose ( to give her oxygen), hospital plastic sheets, constant interruptions in the night etc! ( That all said, the nurses and Dr's were really lovely and we're grateful for their care).

Mari particularly enjoyed not being attached to a drip for the night and having no line in her veins for the first time in 10 days. Her veins are still very sore. Dr's warned her this would happen, as a result of all the chemotherapy. Hopefully this will be a temporary thing, they need a good long holiday which isn't going to happen with chemo! Mari was also hugely grateful that she didn't have to have the very invasive procedure in her lungs, that was being threatened, so thanks for praying about that.

Mari had to be back in hospital for chemo (round 9) at 10 am this morning. To be honest Mari did not feel strong enough for this and it was somewhat overwhelming. She is now in bed recovering, sleeping, resting and drinking lots of fluids - under Dr's orders!

She has to wake up at 8 am, for three days after chemo, to take drugs which help control side effects.

Thank you for standing with us at this difficult time. We're all pretty tired so hoping for some good sleep now.
We will let you know how Mari responds to this next round of treatment.
With love xx

Coming Home.... Monday night

2008-09-02T05:47:00.002+12:00

After being told by Drs this morning that she would have to stay in all week, Mari was told this afternoon that if she has two more lots of intravenous antibiotics she could have chemo tomorrow and either stay in over night and just go down the corridor for chemo or come home late tonight and go back in in the morning. Guess which Mari opted for! She wants a bath and good sleep.

The good news is that her blood count is up and the infection levelling out. The haematologist consultant told Mari that they are more concerned in the long run about her tumour than the infection. So they want to continue chemo. Tomorrow seems a bit soon but Mari understands the need for it.

Thank you for all your prayers. Please pray that Mari will cope with the chemo, the infection will completely go and that her white cells will build up more quickly after tomorrows treatment. She does not want to go through the last couple of weeks again!

God bless
With love
The Days and Phil

A better night

2008-08-31T20:09:00.002+12:00

Mari wanted us to thank you for all the prayers and love shown to her. She had a better night last night and feels she has turned the corner. For the first night since February, she did not wake with drenching night sweats. Her blood and oxygen levels have increased which is encouraging too. She is still coughing badly but that too seems a bit easier than it has been.

She is hoping that if this continues she can come home in a day or two and have a few days in her own bed before the next Chemo session.

We as a family join with Mari in thanking you all again for your prayers.

With love

The Days

Friday Night

2008-08-30T08:15:00.003+12:00

Mari has been in hospital for a week now and is anxious to come home. The Drs are still unsure of where the infection is and so are giving a wide range of drugs to try to cover all the bases. If the fever stops, they might let her out early next week, if it doesn't, they will do a more invasive investigation which Mari does not relish in the slightest. When she woke up this morning, her temperature was 39.6 which is still very high. Please pray that will level out. Her blood count is up which will help her fight infection.

We have mentioned before about the problem finding veins for the lines to be put into Mari. They have to be changed every few days to avoid infection. Today, they had to use Mari's feet as all the veins in her arms and hands are not suitable. Every time they try to put a line in it causes much discomfort.

Thanks again for all your love and support, it means so much to us all.

God bless
With love
The Days and Phil

Thursday morning

2008-08-28T22:44:00.003+12:00

Just an update and request for more prayer please. The Drs are still not happy with Mari's fluctuating temperature and are trying to find out the causes. Mari will have a CT scan today as the Chest X Ray proved inconclusive. The Drs need to take a sample from Mari's lungs, there are two ways they can do this, one by giving her something to help her bring stuff up, if that doesn't work, they will have to do more something more invasive which Mari really does not want so please pray they can get something first time round!

As a possible cause of the temperature fluctuations could be DVT related, Mari will be given something to protect her from DVTs.

She has been booked in for chemo next Tuesday which seems a bit too soon for Mari.

Thanks again
Love from us all

Wednesday night

2008-08-28T09:15:00.002+12:00

Thanks again for all the support, love and care being expressed. There has been some improvement today which is encouraging. Mari's white blood cell count has risen after the injection yesterday. She had another today and they will review how many injections she will need after blood tests tomorrow. The increased count will help fight the pneumonia as well as the antibiotics she is still on. Her temperature is being controlled well and her blood pressure is up a bit so that is good news.

Mari still is having trouble breathing without oxygen, especially when she has to move around. In order to prevent the threat of deep vein thrombosis, Mari has to try to move about a bit and do some light exercises but she finds that hard without oxygen and ends up coughing quite badly. Please pray for the pneumonia to ease!

She is finding sleep difficult, she sweats so much at night which keeps her awake, most nights her bed needs to be changed at least three times. Also there are many interruptions all through the night as the staff do their vital duties. Please pray for some more chance to sleep. Much as she loves seeing visitors, it can be tiring so please contact Dave or Rhi if you are wanting to visit.

Thanks again
With love

The Days and Phil

Tuesday night

2008-08-27T07:55:00.002+12:00

Thanks again for all the messages. Mari does love reading them. Her temperature has generally been kept under control by paracetamol though her blood count is still low. Her neutrophils, which are a type of white blood cell, are very low and have not risen over the past days. They currently measure at 0.4, normal is between 1.5 to 6 and they will not consider letting her home until they are at least 0.8. Consequently they are giving Mari daily injections for the next 14 days to try to build the cells up. We dont know at this stage whether she will have to stay in hospital all that time. Chemo, which should have been today, has been postponed.

The Drs seem to think that these symptoms are not suprising at this point of the chemotherapy. Mari is still needing oxygen as she is very short of breath.
Her veins are still a problem, the Dr had to have six attempts to get a line in today and each attempt was painful.

So, please keep praying for the cell count to increase, her lungs to clear up and her veins to become stronger. She needs grace and strength too to cope with all that is happening to her body.

Many thanks again for all you love and care.

The Days and Phil

Please keep praying

2008-08-26T03:44:00.004+12:00

Mari is still very ill. The Drs think she has pneumonia and her oxygen count is very low. Hopefully the antbiotics she has been on will start to take effect soon and she is already been given oxygen. They are also talking about changing her chemo routine ( presumably giving different drugs) but Mari is reluctant for this. Please keep praying for her as she is very poorly. Tomorrow she will see the consultant haematolgist, being a Bank Holiday the hospital is a bit low on staff so we should know more tomorrow when there are more Drs and specialists around.

Many thanks
The Days and Phil

Monday Morning.. after a bad night

2008-08-25T20:04:00.004+12:00

Thanks again for all the comments and prayers, as the NHS does not stretch to wireless connection, we have been able to print out all of the comments etc and take them in to Mari which is encourages her.

She did not have a good night last night, her blood pressure is very low, she drenches the bed with sweats and has had more rigors which are very unpleasant. Sleeping is never easy in hospital so with the rigors, frequent visits from staff to change drips etc she needs sleep so please pray that she will be able to get some sleep somehow.

Everytime her temperature rises above 38 C, the nurses have to take blood so it can be checked for infections. Chemo always has a detrimental affect on veins so it is becoming increasingly difficult for the staff to find a vein to get blood which makes it quite painful for Mari. Please pray too that the nurses will be able to locate veins more easily. Though up to this point, nothing has developed on the blood to show infection, she is so vulnerable to having one she has to be constantly tested.

Thanks again, we will continue to keep you posted

With love from the Days and Phil

Saturday Night

2008-08-24T09:37:00.003+12:00

After numerous blood tests etc, the Drs are saying that Mari has neurophenia which is a serious lowering of the infection-fighting white blood cells in her body. Her white cell count is very low and this has been causing all of symptoms. Though it appears there is no infection, the symptoms are similar and she is particuarly vulnerable to any infections. Rhi, Phil and I( Dave) have to put on blue gloves and a plastic apron just to go into her room. Though they look fetching on me, I am not too sure about Phil and Rhi!

Mari's temperature is still fluctuating as her body tries to cope with the neuropenia but it is being controlled by the intravenous paracetamol.Please pray that her white cell count will build up which is needs to to combat the symptoms of neurophenia and also to be able to continue with the chemotherapy. They will not administer it if the white cell count is too low. Mari will continue the 5 day course of antibiotics.

Many thanks again

With love
The Days ( and Phil)

Update from hospital

2008-08-24T04:27:00.005+12:00

Thanks for the comments and support. Mari did not have a good night in hospital, her temperature was very high and on a few occasions went into rigor ( strong uncontrollable shivering). This morning her temperature went up to 39.9 so the hospital have given her intravenous paracetamol to lower the temperature. They are unsure what is causing the infection so are also giving her intravenous anti-biotics too. This is a 5 day course so Mari will have to stay in unless there is a marked improvement, they can then give the last couple of days in tablet form so she can come home. Her blood pressure is quite low too.

One of the effects of chemo is damge to veins so the intravenous drips are quite painful. Her white cell count is low so her chemo on Tues will be postponed. Because she is in the Highly Infectious ward, she does have her on room with TV for which she is grateful. Rhi is sleeping in at the hospital with her.

We will keep you updated and thanks again for all the support.

God bless
With love
The Days

Back into hospital

2008-08-23T04:08:00.002+12:00

Mari was able to have a few days away this week which was a nice change but her temperature has been inconsistent and a couple of time has very strong shivers and shakes. Her temperature went up to 38.8 today ( 102 F) and she is supposed to go back into hospital if it exceeds 38. We phoned the hospital who wanted her to go straight in so has just gone ( Friday early evening UK time) The consultant wants to look at her white blood cells. She will be in at least overnight or over the weekend, she is due to have the next round of chemo on Tuesday.

Thanks again for all your support and prayers.

With love
The Days

This week.

2008-08-21T03:50:00.003+12:00

Thank you for all your wonderful messages!
I had a rough week last week. I was also unwell on the weekend ( my temperature kept creeping in to the "danger zone", so I had to keep a close eye on it)! The chemo is definitely getting tougher both mentally and physically. I have been a bit brighter this week and I've even been able to go away for a few days which has been lovely.
I am back in to hospital on Tuesday for blood tests and for my 9th round of chemo!
We will update after that and let you know how it goes.
Thank you for your amazing support and encouragement.
Lots of love, Mari

Some good and bad news.

2008-08-13T03:22:00.003+12:00

Mari had chemotherapy today - her temperature has been really high over the past week and she reacted badly to one of the chemo drugs today. It left her shivering violently, so she was wrapped up in blankets and hot water bottles when we finally got to talk to the Doctor regarding the CT scan results.

The CT scan shows that the cancer is reducing, however it is still there! As a result they are going to extend Mari's treatment. She will have an additional 4 chemotherapy sessions! Mari feels really disheartened about this, especially because all the chemo side effects are getting progressively worse. This leaves another 8 treatments and it means Mari will (hopefully) have completed treatment by December 2008. The area of concern is the mass in her chest so please join with us in praying that this will go altogether and that after 8 more round of chemo, Mari will need no further treatment. The Doctor said she was not surprised it is still there because the "mass" was so large in the first place.

Mari is now at home recovering from her hospital visit, with another big bag of drugs ready to control all the unpleasant side effects. This phase of the journey is hard work and very tiring. Mari is still struggling to see light at the end of the tunnel most days.

Thanks for your prayers and faithful support.

The week ahead

2008-08-10T07:15:00.004+12:00

Hi there,
Hope you're having a good weekend.

Mari is going back in to hospital on Monday for usual blood tests and then on Tuesday for chemotherapy ( round 8). Mari is quite nervous about this next round because she felt so unwell last week ( so would greatly appreciate your prayers - thanks once again).
We will let you know how it goes and what the results are from her CT scans as we should find out this coming week.

Thanks and God bless.

Scans today

2008-08-05T05:31:00.002+12:00

Thanks for your messages and prayers for today. I had my scans this morning at Frenchay hospital and apparently it will take one week to take ten days before we get the results. We will let you know when we hear.

I have a week off treatment this week (phew) before my 8th round of chemotherapy on Tuesday next week and the usual hospital visit on Monday before.

Enjoy your week!
We will update soon.
Love from us all

Hospital tomorrow.

2008-08-03T23:39:00.002+12:00

Mari has had a fairly rough week, the chemo knocked her pretty hard on Tuesday! Tomorrow she is going in to hospital at 11 am for CT scans. We will let you know how it goes and what the results are.
Thanks for your messages and thoughts.
With much Love.

Chemotherapy tomorrow.

2008-07-29T09:03:00.002+12:00

Mari will be having round 7 of chemo tomorrow at 11 am, in Southmead hospital.
She had her blood checked today in hospital and so all looks fine to go ahead with tomorrow.
Hope you're having a good week.
Thanks for your messages.
God bless.

Dates

2008-07-26T06:34:00.002+12:00

Thanks for your messages. I have had a good week and thankfully, I have kept well.
On Monday, 28th July I am going back in to Hospital for blood tests before another round of chemotherapy on Tuesday, 29th July, at 12 pm.

This morning, I found out I will be having a CT scan on Monday August 4th, in Frenchay hospital. The hospital sent me a bottle ( 20 mls) of Gastrogratin in the post. I have to drink this beforehand, apparently this will outline my stomach and bowel enabling them to be easily identified on the scan images!

This will be an interesting time, as it will indicate what effect the treatment is having. We will, of course, let you know the results.

Have a lovely weekend and thanks.
xx

Update post chemotherapy on Monday.

2008-07-16T23:00:00.003+12:00

Hi,
Mari here, I just wanted to let you know that I am doing well and Mum is also better so thanks for praying for us!
Side effects are being well controlled again and I still haven't had any infections which is a relief!

I met with my specialist nurse when I was in hospital on Monday. He informed me that I will need to have check ups every three months in hospital for a two year period (initially), after I get the all clear. They also assured me that they won't forget to order in my drugs again so no more last minute cancellations. ( At least I had two extra days of feeling well, and more time for my white blood cells to bounce back before another blasting).

Have a great day. Your prayers are being answered - thank you.
Love Mari

Today in hospital...

2008-07-15T04:39:00.003+12:00

Chemotherapy went smoothly today for Mari, she is now in bed recovering.
It looks like her chemotherapy sessions will take place on Tuesdays from now on, we will let you know dates soon - as well as how Mari is doing over the next few days.

Rhi has a nasty bug and has been very sick, so Mari will have to be extra careful not to catch anything from her as her immune system is at an all time low.

Dr's reminded Mari today that she will have CT scans soon, these tests will determine whether Mari will need more treatment after the six months scheduled.

Thanks for your wonderful care...bye for now.

Tomorrow.

2008-07-14T07:13:00.001+12:00

Hya,
My next chemo session will now be tomorrow ( Monday) at 1pm in Southmead.

Will update you afterwards.
Thanks for the messages and words of encouragement.
Love Mari x

Postponed until Monday

2008-07-12T03:53:00.003+12:00

Thanks for yours prayers and comments. Mari arrived at the hospital today to find that they had forgotten to order the drugs for today and so she has to go back in on Monday.
As you can imagine it is a bit frustrating as she gears herself up to face chemo days but at least she will feel brighter over the weekend.

Thanks again for all you concern

Love the Days

Today...

2008-07-11T03:29:00.004+12:00

All went well today, Mari had two injections and got her bloods checked in hospital.
It looks like chemo will go ahead, as usual, tomorrow in Southmead hospital at 1pm. It usually takes around 6 hours all up. The staff in the hospital ward are really warm and helpful, which makes a big difference.
We will write more after round 6 of chemo.

The good news is that after tomorrow Mari will be half way through the treatment! At this stage, if all goes well, Mari will have 12 rounds of treatment in total. We're hoping and praying that she won't need any further chemotherapy or radiotherapy after that.
Have a great weekend, with love.

This week.

2008-07-08T21:13:00.002+12:00

Hi,
The past few days have been really good. Sleeping is always difficult after chemo, other than that I have had more energy than usual which is great.
I am back in hospital for injections and blood tests on Thursday before round 6 of chemo this Friday, (at Southmead hospital, 1pm).
Your continued prayers and support amaze me.
Thank you -
Love Mari x

The hospital today!

2008-06-28T08:25:00.002+12:00

We were in hospital for only 4 1/2 hours today - much shorter than usual! Mari was able to have some time with her consultant. They will be unable to let her know how the cancer is responding to treatment until they do CT scans etc in 2 months time.

Her consultant was impressed to see that Mari's neck lumps have gone, since treatment has started! Also, Maris breathing difficulties have improved - she is now able to lie down almost flat for the first time in months, after having to be propped up in bed due to shortage of breath -so these are encouraging signs. As we've said before, we believe the prayers and support you guys have shown us are every bit as effective as the medical treatment.

Mari is in bed, wiped out tonight post chemo, but she sends her love. We will update soon. Mari is usually in bed a lot over the first few days following chemo but she is starting to get used to some of the common side effects and patterns - such as a change of taste in mouth, sore mouth and ulcers, sore throat, some times a slight nausea, tiredness and drastic temperature changes, (one minute she will be shivering, then sweating the next ). All these symptoms are less intense by week 2 - we will keep you in the loop.
Good night and thank you from us once again xx

That time again

2008-06-27T05:49:00.002+12:00

The routine blood tests went fine today at hospital, so it's looking like chemo will go ahead at 1pm tomorrow in Southmead hospital. This will be round 5!
Mari has been keeping well generally though not sleeping too well - with night sweats again keeping her awake and disturbing her sleep - the nurse informed us these symptons are a side effect of the B drug in her chemotherapy mix.

We will update the blog soon after the weekend to let you know how Mari is holding up post treatment.

Thanks and have a good weekend, bye for now. x

This week.

2008-06-24T23:40:00.002+12:00

Mari is doing well this week. She was quite weak last week but she is definitely picking up now ready for another round of chemotherapy on Friday morning at Southmead hopsital, (and the usual blood tests again in hopsital on Thursday before). We will let you know how it all goes ...With love.

Back at home again...

2008-06-14T05:16:00.002+12:00

....after only 5 hours in hospital, all went smoothly today and Mari is now tucked up in bed, wiped out, but feeling hungry due to all the steroids!
We will let you know how she gets on over the coming days.
We found out today that the Dr's will do tests on Mari in a couple of months time to see how her body, and more specifically the cancer, is responding to the treatment.
We will of course let you know when that happens.
Thanks, as ever, for your wonderful support - Love from us, x

Chemo tomorrow.

2008-06-13T05:54:00.002+12:00

Mari had her blood checked today and a couple of injections. At this stage it looks like chemo will go ahead (as usual) tomorrow at 11 am in Southmead hospital.
Two rounds of the treatment make up one cycle so after tomorrow Mari will have done two cycles of treatment.
Hope you have a good weekend - we will update soon...
With Love from us all

The week ahead...

2008-06-09T23:30:00.004+12:00

Hello,
Thanks for your encouraging messages. I am a bit under the weather today ( my white blood cells are at their lowest). My hair has started falling out which is quite distressing ( and annoying - gets quite messy and keeps falling in my eyes and mouth etc...) Some days it is hard to imagine life post cancer and post chemotherapy so I'd say one of the biggest challenges is the mental struggle.
Back in to hospital on Thursday ( for blood tests) and friday for more chemotherapy.
Thanks again for your continued prayers! Much love xx Mari

Update

2008-06-04T08:49:00.004+12:00

Mari is doing well this week, low in energy - but side effects are being well controlled again thankfully. She is back in hospital on the 12th June for blood tests, before more chemotherapy on Friday 13th June. We will keep you in the loop.
Thanks for your prayers - much love.

A long day in the haemotology ward

2008-05-31T04:03:00.003+12:00

Hiah,
It is late Friday afternoon and we have just got back from hospital. We were in hospital for over 7 hours today. One of the drugs was slightly more painful this time round for Mari, but nothing major ( her chemotherapy consists of 4 different drugs, it is known as ABVD). Since getting home she has gone straight to bed - feeling exhausted and wiped out ( she likens it to severe jet lag). We will let you know how she gets on over the following days. Thanks for praying again for minimal side effects.
Have a good weekend.
With Love from us.

Chemotherapy again on Friday!

2008-05-29T10:33:00.003+12:00

Hello,

Thanks to you all for your lovely messages. I'm returning to Southmead hospital tomorrow morning for more chemotherapy (this will be my third round)! I'm starting to get used to the fact that I now live my life in slots of feeling well and unwell.
This past week I have felt so much better than last time. (Feeling normal feels amazing)! I am really hoping for a similar experience this time round.

The chemo does leave me feeling wiped out/tired and I spend a few days in bed following treatment, but I'm so grateful for no sickness and no infections thus far ( obviously I am vulnerable/prone to infections after treatment). I really feel this is down to your prayers.
The lovely nurse who usually looks after me in hospital is away on holiday this week. This makes me realise how safe I feel with her, so I'm looking forward to her returning soon.
It would be great if you could pray again that the side effects this time are minimal, also that there are no long term effects! Lastly, for my parents and Phil who look after me so well. I'm sure they need lots of grace at this time. It can't be easy for them, they have literally spent hours in hospital wards with me.

We will let you know how I get on after friday. We're usually in hospital for about 5/6 hours at a time and I'm on a drip for the majority of that time before coming home to bed!

Thanks friends for your amazing support and for reading this blog.
Love Mari

A good week!

2008-05-25T04:02:00.002+12:00

Thankfully Mari is still doing well this week - side effects are being well controlled.
Also, Phil has arrived safe and sound! It's great to have him here.

We will write more later in the week as round 3 of chemo is coming up.
Love from all of us x

Better than expected.

2008-05-22T01:44:00.003+12:00

We wanted to let you know that Mari is doing better than expected this week - thanks for your prayers! So far the side effects have been manageable and less stressful than last time!
This is such a relief and we are hoping this will continue.

She is due to have her next round of chemotherapy on Friday morning, 30th May.

(On another note, She still has her hair but Dr's say it will come out any day so she is checking her pillow each morning, but it hasn't started falling out yet)!

We will keep you updating you...
With our love.

Message from Mari

2008-05-17T20:39:00.000+12:00

Thank you friends, for praying for me as I had my second round of chemotherapy yesterday. I have been tucked up in bed ever since, recovering.
The weekend after chemo is generally ok because I'm given steroids ( intravenously and in tablet form) to help boost me. These drugs wear off by Monday and it was then, that I became unwell last time. In light of this, I am a little nevous about Monday and the following days. It would be good to pray that I get no nasty surprises.
My digestive system is now being controlled by more drugs. I feel like a walking chemist counter and take a mountain of pills every morning.

I am thankful for the lovely medical team looking after me at Southmead hospital and for the enlightening conversations I have had with others in the hospital ward, who are also having chemotherapy. (I like to find at least one thing to be grateful for every day).

Thank you for your faithfulness to us in this journey. Your prayers and messages have kept me positive in the midst of this battle (which is in both the body and the mind). Your messages make me smile ( even on bad days).

Enjoy your weekend.
With Love, Mari x

Chemotherapy tomorrow

2008-05-16T02:18:00.003+12:00

Mari will be having her next course of chemo tomorrow ( Friday 16th UK time) at Southmead Hospital at 9.30 am. She has been in twice this week for blood tests. The chemotherapy seems to have a delayed effect so Mari is a little nervous after last time.

On a brighter note, Phil's visa has been issued, this is a lot quicker than he was expecting so thanks for your prayers. He hopes to be here by next weekend. We will let you know how Mari gets on over the weekend.

With love

The Days

Hospital visit today

2008-05-14T06:46:00.002+12:00

Hi Friends,
Mari visited the hopsital today, where she had her blood taken and was able to talk with the specialist doctor about some of the side effects of the chemo.

Her white blood cells have "dipped", however the doctor assured us this is to be expected, (especially at this particular point in time - post chemo). She has to go in to hospital again on Thursday for further tests, but at this stage it is looking likely that she will have round 2 of chemo on Friday. We would appreciate your prayers as her body recovers from another round of treatment.

The problems with her digestive system are being well controlled (by drugs and prayers), she is feeling much better.
Phils visa application is now in process. Immigration are taking Mari's situation into consideration as they process his application, which may speed things up.

We all send our love.
The Days

A New Week

2008-05-12T09:47:00.002+12:00

Mari has survived the first week after chemo. She had a mixture of good and rough days and is trying to get used to the reactions of the chemotherapy on her body.
This week Mari has hospital visits on Tuesday and Thursday before next bout of chemo on Friday. These are to enable the Drs to see how Mari is coping and to do blood tests to ensure that she is well enough for the treatment on Friday.
Phil has his interview for his visa on Tuesday. It would be great if that could be dealt wth quickly
We will update after Tuesday's appointment.
Thanks again for standing with us
God bless
With love
The Days

Hi from Mari

2008-05-09T00:54:00.001+12:00

Thanks for your messages. Today I feel a bit better after a good nights sleep. There are definitely good days and bad days - not so many "highs", but feeling normal is a huge relief and I get a little adrenilin rush from it! On bad days, my life feels like it consists of going in and out of hospital and trying to manage really unpleasant side effects. Yesterday was overwhelming, I was in a lot of discomfort and very conscious that this is just the start of the battle. I guess that's why they say you have to take one day at a time! Living in the present is easier said than done, but essential on this journey.

Some good things to pray about:
That the Dr's manage to control the unpleasant side effects.
That I don't get infections.
And of course, that the chemo has maximum effect on the cancer and minimum effect on my body.

Every day I am blown away by the support and love you have shown me. I know I have said it before but it really is a lifeline. I don't even know some of the people who leave me messages and pray for me - which amazes me and challenges me about the way I want to live my life.
Thank you.

With Love, Mari x

Another visit to the hospital

2008-05-08T04:43:00.002+12:00

Thanks for the prayers and comments from the last blog. Mari went to the hospital again this afternoon as she was feeling so rough. They are checking for a further infection and have given her a lot more tablets. Please pray that if there is an infection, we have caught it very early. The Doctors have generally warned against infections and if her temperature rises above 38 the hospital need to be informed straight away and she will have to be hospitalised . It is 37.7 at the moment.

Although these side effects are very common for the chemo, they are still unpleasant and difficult to deal with. We do realise that it is going to be a long battle and value prayer support so much.

Many thanks

With love
The Days

A Bad Night

2008-05-07T15:29:00.002+12:00

It's 4.30 in the morning and Mari is suffering with some unpleasant side effects over the past few hours so would appreciate your prayers. She has generally done well since Friday but the past 24 hours has been difficult. Please pray for her digestive system which has been reacting badly.

Thanks

With love

The Days.

The Weekend after

2008-05-07T00:02:00.001+12:00

Hi Friends,

Thank you for your prayers this weekend. The prayers and anti-sickness tablets have worked wonders! I have had some unpleasant side effects but generally I have been able to keep positive and it has been better than I expected.

I am going back in to hospital for tests next week. In total, I will be in hospital for three days as a day patient.
(I bring the age bracket down significnatly in the hospital ward). I will have tests to see if my white blood cells have recovered for another round of chemotherapy. Dr's say that chemo has an accumulative effect - so gets worse, we are hoping and praying this won't be the case.

Dr's have also said that my hair will start to fall out after the next treatment, apparently it is quite distressing when it starts to fall out so I have been preparing myself and gradually cutting my hair shorter and shorter. When it starts to come out, I will shave it all off.

It is such a strange time for me but your love and support has kept me afloat.
Thank you and much love, Mari
_____________________________________________

Thanks for your prayers today

2008-05-03T05:16:00.002+12:00

We are now home relieved after 6 hours in the hospital. The Consultant told us that their case conference came to the same conclusion as the NZ Doctors and are treating it as Stage 2 B . They are still unsure about the fluid around the heart but instead of doing invasive proceedures to examine, they are treating it as a reaction of the lymphoma.

Mari felt very calm during the day and is grateful for all the prayer. She had the drugs fed in for about four hours and coped very well with the treatment. This will continue for several sessions and then a scan will be done to assess the progress. The ward is a peaceful place and the staff very friendly.

Mari is now resting, she was told that she will be feel unwell for a time. Please pray that the drugs will have maximum affect on the cancer but minimum affect on Mari. She is on anti-nausea medicine which we hope will be effective.

She is so grateful for all the messages and she still checks them first thing every morning ( and many times during the day!)

Much love

The Days

Chemotherapy starts tomorrow

2008-05-01T18:25:00.002+12:00

Mari starts her chemotherpy in Southmead Hospital tomorrow ( Friday) at 9.30 am. The Doctors are having a case conference today to compare their findings with the NZ Doctors. They wanted to look again at the fluid in Mari's lung and the nodes on her stomach. They want to determine the stage of the Hodgkins themselves even though the initial treatment will be the same.

Please pray that the chemo will be effective quickly. Please pray too that there will be no long term effects of the chemo and that the short term ones will be minimal. To be able to cope well with nausea ( or not have it at all !) would be good too.

Thank you for your continued care and prayers, Mari hopes you dont get compassion fatigue!!

We will update the blog over the weekend to let you know how Mari is doing.

Thanks again for all your love, support and comments . Phil is still waiting for his visa, the red tape is taking longer than expected, it would be soo good if he was able to come over as soon as possible.

Love from the Days

Today at the Hospital

2008-04-26T03:27:00.002+12:00

Mari had her first visit at Southmead Hospital today which is where she will be having her chemotherapy. She will be starting that next Friday ( 2nd May) at 9.30 am. and will expect to be in the hospital for three hours. At this stage they are predicting a course of 12 treatments every fortnight. After the six months everything will be reassessed.

The Doctors are having a final case meeting on Thursday 1st to finalise their diagnosis etc. They are still questioning the nodes in her abdomen and the fluid around her heart. Please pray that they will agree with the Kiwi Doctors who thought the nodes were insignificant. The fluid around her heart could either be a by-product of the lymphoma or that the area is diseased. Obviously the first is preferable!

The Doctors have to spell out all the side effects and worse case scenarios so please pray that none of the worst case scenarios will occur. Mari was told that chemo can be a trigger for other cancers developing later on. They talked about the possibility of relapse, which though it is slight, it would be good to pray that never happens. Please pray too that other side effects like nausea will be controlled.

Mari has to do some wierd things in preparation for treatment including an appointment with the hospital wig lady on Monday. I ( Dave) am trying hard to hide my jealousy but it slips out at times.

Thank you for your continued support, love and prayers. We will keep the updates coming .

God bless

Much love
Dave, Rhi and Mari

Back in England.

2008-04-22T21:56:00.002+12:00

Just wanted to let you know that we are now safely back in Bristol.
An enormous thank you to all in NZ who sent me off with so much love and support. I can't thank you enough. I am convinced that your on-going support is every bit as beneficial as any medical treatment.

I was encouraged before I left NZ, my GP spoke with us ( she is the one who made the initial diagnosis) and commented on the "significiant shift" in prognosis. Right from the start she was working on the assumption the cancer was stage 4 so she was pretty amazed at the latest news. I'm sure this "significant shift" is a result of your love and prayers.

I am meeting with Specialists this week ( Friday, 11.30 am)so I should get a treatment plan soon. They want to start me on chemotherapy a.s.a.p (and possibly radiotherapy at a later stage). The treatment sounds very unpleasant, it is a daunting prospect. We will keep updating this blog.

Again my love and thanks to you all for your messages, prayers and kindness. God bless,
Mari xx

Saying goodbye to Mari...

2008-04-18T20:00:00.002+12:00

Mari is leaving our shores on Sunday. If you would like to say good'bye... her friends are farewelling her at the airport at 4pm. We'll be meeting at the cafe overlooking the carpark on the 2nd floor (Auckland International Airport).

See you there!
-Erin

Prayer requests

2008-04-15T21:49:00.002+12:00

Mari is flying out with Dave and Rhi on Sunday night and will arrive in Bristol on Monday afternoon. Before she leaves there are some things that need to fall into place. We would appreciate your prayers.

We need to obtain all of the relevent medical reports and samples from the Drs here to take with us for the Drs in Bristol. This will save the procedures having to be repeated in the UK (we still need the results of the final bone marrow test.)

We will need clearance from the airlines to carry these with us as hand luggage.

We need good communication between NZ and the UK to ensure there is no delay in starting chemotherapy. Although the consultant here has made recommendations r.e the course of treatment, the team of specialists in the UK will have to come to their own decision after their discussions. Please pray that there will be no delays.
Timing is crucial and quite complex.

Also, in order for Mari to maintain her residency in New Zealand, she should remain here until 21st April. We fly out on 20th and are hoping that the Immigration Authorities will have grace to allow her residency to stand.

We can't begin to thank you all for the amazing love and support we have experienced each day. We have felt carried by your prayers.
Chemotherapy is a daunting prospect for Mari so please keep praying. Thank you all from the bottom of our hearts.

Dave, Rhi, Phil and Mari xx

Answers to prayer

2008-04-14T20:08:00.003+12:00

Today was more encouraging than we thought. There were initially a couple of frustrations, the Drs had not had a case conference and the results from the main Bone Marrow biopsy were not through, however:
The mass in Mari's lung has shrunk due to the steroids ( and prayer) so she will able to fly home hopefully at the end of the week. Her blood levels are just below normal which is good for her condition and made the Drs think the cancer has not reached the marrow, they will know for certain on Thurs. The Dr was concerned last week that it had spread to Mari's stomach, today she ( and the consultant) said she felt it was insignificant.... The unanswered question concerns the fluid in Maris lung, it may be a result of the pressure due to the mass or it could be that the cancer has spread a bit, if it has spread, it would make it grade 4 if not, they are thinking it might only be grade 2, we had been lead to think all the way through that it was Grade 4

We will go back on Thurs and pick up all the results and information that we need for Bristol and look to fly out at the end of the week, it is school holidays so the flights are quite full so please pray we can get some seats.

Mari was relieved after the appointment, she knows she still has a battle but the Dr was positive and optimistic, even though he had to give worse case scenarios!!

Thanks so much for all your love , support and prayer, we will let you know when we have booked tickets etc...Once again the messages you have left for Mari on the blog give her renewed strength, she reads them first thing every morning and is so thankful for your prayers.

God bless
Lots of love

Dave, Rhi and Mari

Monday 14th

2008-04-14T11:41:00.002+12:00

Today is an important day for Mari, she has to be at the Hospital for 2.00 pm for an X-Ray. This will determine whether the steroids have shrunk the mass on her lung which would be important for flying back. She then meets with a specialist at 3.00 to hear the findings of the case conference this morning. We hope that all the results from the Bone marrow biopsy will have been processed. This should clarify the extent and grage of the Hodgkins, the recommended course of treatment and we can make decisions about flying back to the UK. She is also seeing a specialist at 10.30 tomorrow morning ( Tues) for further discussions.

Mari is doing very well but the appointment this afternoon is looming large as it is so important.

She continues to be thrilled to get so many blog postings. She was up at 6.00 am this morning reading them. Thanks to all who have been in touch.

Rhi and I are so grateful to all those who are standing with Mari and supporting her at this time.

God bless
With love
Dave

Today's Procedures...

2008-04-10T21:46:00.002+12:00

It's a huge relief to get today over. Mari had to have the procedures under sedation as it is still too risky for her to have a general anaesthetic. The first procedure wasn't too bad, but the other - removing bone marrow - was extremely painful and had to be done three times altogether. Eventually enough samples were obtained but it was an ordeal. She is home now recovering and feeling sore. Rhi was able to stay with her throughout.

The staff assured Mari she would sleep after and forget everything - but not so...she didn't sleep til later in the afternoon and can remember everything! One really good thing did happen tho...while in recovery Rhi was calling out to God to send help when two people entered the ward. Rhi told them that Mari was in a lot of pain. Mari had the curtains drawn around her bed and Rhi saw thro a gap the woman lifing her hands and praying in Mari's direction against the pain. Mari heard her praying and immediately felt some relief....Thanks to Gloria - if you're reading this for being there at that very moment and for reaching out to our Heavenly Father for Mari.

-Rhi

Biopsy Today

2008-04-10T13:20:00.000+12:00

Today Mari is having two biopsies, which will help determine how advanced the cancer is and what grade it is etc.