The end of the journey

Diana Macdougald passed away this morning. Please continue to pray for Ian, Fiona, Andrew and their families.

Update

Ian has decided to keep Diana at home for now. Andrew is on a flight today and will arrive in Midland late on Saturday.

A new path for the journey

From Chris: Please keep all the Macdougalds in your prayers as Diana's condition steadily worsens. She has not spoken for a day and dozes often. She is not quite in a coma. She responds more to spiritual messages than to everyday care taking. Fortunately, she seems at peace and in no pain. The current plan is to take Diana to Brian's house in Bay City (less than 30 minutes from Midland) tomorrow Friday. Ian and Diana's friend, Judy, has been a constant nurse and companion for the last week but more than one person is needed for simple care giving. Diana cannot be left alone. Please pray that Andrew is able to find a flight to the states midst all the returning World Cup fans. The family covets your prayers at this time.

Prayers continue to be needed!

A quick up date. Di had 3 seizures last week and has gone down hill since then. She was able to walk a bit but has now lost her walking legs. Hospice have been great and have visited each day. She now has a hospital bed in the living room so that she can be around people during the day. She sleeps most of the time and has a catheter. She talks very little, very quietly, and often makes little sense. Judy, a friend from South Africa, has been visiting for the last 3 weeks and returns on Friday. She has been more than an angel and works non stop helping DI. I will miss her greatly and will then have to decide on further options for DI as I cannot manage on my own. A nurse comes daily to wash Di. She also needs to be fed.

I will try and post when further developments take place.

Shalom, Ian

Urgent Prayer Request

An urgent prayer request! Di had 3 seizures this evening.
She had a quiet day at home and was happy and seemed to be fine. She went to the bathroom at about 6pm and then couldn't remember what to do. She became very agitated, said she was hungry. As supper wasn't ready, Ian sat her on the couch, gave her a muesli bar and tried to reassure her. She started trying to talk, then became completely incoherent, then silent, but agitated. At 6.45 she had a seizure, I medicated her, Ian called the Hospice and the nurse arrived at 7.15 by which time she was having another seizure. She medicated her again.Ian had to get more medication for her from the Hospice Pharmacy half an hour away. At 8pm she started twitching so was re-medicated before the seizure started again.

She is asleep on a mattress in the lounge and I am sleeping next to her tonight. Ian is exhausted so has gone to bed.

The nurse will be back tomorrow.

Please pray that Di stabilises as Ian desperately needs to get away as planned and booked from Thursday until Tuesday.

With love from us all,
Judy

Another viewpoint

[The Macdougald's family friend, Judy, is visiting from Johanasburg]

Dear family and friends,

Many thanks for the e-mails and sms's. They have been a great encouragement to Ian and Di.

It is 7.30 pm and feels like 4pm! It only gets dark here at about 10pm and gets light at about 6am. I am sitting outside in the manicured garden next to the waterfall listening to the soothing sound of water and the twittering birds! What a wonderful life!

We all had a wonderful 4 days in Holland,MI - I kept pinching myself as it really is beautiful. For those who enjoy sailing, boating, fishing or cycling -this is the place for you! We had a Barbecue with the people from the Timeshare the afternoon we left. It was obviously a typical American Barbecue with Hot dogs, hamburgers and Bratwurst with the usual salads and then Choc Chip Cookies for desert. I felt sad saying goodbye to these amazing people and this beautiful piece of "Paradise"!

We had an uneventful trip back, enjoying the beautiful scenery and had a pit stop at Starbucks - Wends, I had the Chai Latte you recommended - it was delicious Di coped well with the time away. Holland is one of her favourite places, so she was happy there. She had to work out when she was going up and down the stairs as this truly exhausts her and she could only manage this twice a day.

The Hospice nurse came on Friday morning and was pleased with where Di is at. Di is not sleeping as well as she should now, so she upped the sleeping tablet which is the lowest dose you can take, but it is too much and Di battled to wake up this morning and has felt tired today, so she will go back to the lower dose. She has never taken sleeping tablets before, so her system is not used to them. her feet have swollen, so she is trying to walk more and drink more. Di needed more tablets so we went through to Brian's House, which is the Hospice where Di spent 2 nights. What a beautiful place! It is half an hour from their home and was recommended to them by the Ann Arbor Hospital. It was built in memory of Brian Stroud - an actor from New York who died from Aids. It is beautiful inside- painted murals in bright colours. Each bedroom has a specific theme and only 1 patient is allocated per bedroom. The Hospice Doctor is a friendly man and the staff are also. As nice and patient friendly as this place is, I hope Di never has to go there!

We drove through Bay City ( birth place of Madonna). It is an older city with mixed housing. It was a Lumber Baron's Town and has some interesting history.

I drove for the first time today to the Food Store and managed fine. The only close shave I had was going a little too close to a parked car near Ian's house. Otherwise, I found the "wrong side" of the road for South Africans, fine. I will have to drive when Ian is away, so I have to familiarise myself now! The Food Store was enormous and has everything that you could possibly need in it. The selection is stupendous! Another amazing observation was that people leave their handbags (purses) in the trolley(cart) and nobody takes it and you can go through a self check out and scan your own goods and pay the machine with cash or a credit card - mind blowing!!!

Happy July 4th to all the Americans! Ian and Fiona will be celebrating their 1st American Independence Day as American Citizens!

Until next time, lots of love to all of you, Ian, Di and Judy.

Travels on the Journey

Greetings from beautiful Mackinac Island.

Well we are in Mackinac Island, which is in north Michigan where Lakes Michigan and Huron join. The island has a fort which has seen French, British and American occupations. The fort is now a museum and the governor of Michigan has a summer residence on the island. No motorised vehicles are allowed so it is either foot, bicycle or horse transportation. We are staying 1 mile out of the main town and have a great view from our room of the lake. Presently the windows are open and fresh air is blowing in. Seagulls are making their cry and the sound of the waves. Since coming to Michigan we have always wanted to visit here so thought it best now before Di is unable to make the trip. It is a 3 hour drive north from home then a 15 minute boat ride across. Our first 2 days we had nice sunny weather and yesterday managed to get into town to purchase some fudge and have a coffee at Starbucks!! In the afternoon I left Di in the sun to knit whilst I went for a 4 mile walk. It was great to walk along the coast road. I discovered that 4000 years ago the water level was 50ft higher than present day. Lots of fish to eat and we have eaten well, including Lady Di who seems to be famished all the time (due to the steroids she is on). We return to Midland tomorrow.

Di is not doing well and I find each day a challenge. The docs have upped her steroids, however she still struggles with knitting and often has to pull everything off and start again. Confusion over words. This morning she was hunting for a hat, which I knew we had not brought, but finally found she wanted a jacket!!! She gets exhausted quickly and is quite happy to sit all the time. I do get her up and go for very short walks. The last 2 days she has struggled to get out of chairs and I have had to help her. I was told yesterday that her eyesight is getting worse. All in all the tumour seems to be growing and applying pressure on the brain which controls all the functions.

We continue to live day to day.

As for me. Well!! Last night I wanted to run away and scream loudly. She is very demanding and wants things done now now. Complains a lot about the temperature etc. The restaurant was too cold, she was freezing, the temp was okay for me. Anyhow after showering and putting her to bed I went for a long walk. It breaks my heart to remain so positive for her when inside I want to scream and cry. It is difficult to have long conversations with her as she becomes confused. I have reconciled myself to what the future will probably be.

From Mackinac Island, Shalom!!

Celebrations!

Hello All

I am sorry about the long overdue post. The last few weeks have been uneventful, apart from last week. The meds were doubled for Di, however I have seen no improvement. She is becoming more confused and frustrated with life. She can still knit and sew a few hems on quilts. We still take each day as it comes. She is enjoying the warm weather and sitting outside now. The ladies from the Church come to visit and take her out which is great.

The last week has been busy. With hospice care they allow you 5 days respite care. I am trying to ascertain if that is monthly or what. Anyhow I dropped Di off at the Brian's House in Bay City last Sunday. She was really not happy and I told her it was for a few days, but the majority of patients there are dying. It is a brightly colored house and the staff are fantastic. She was asked what she wanted for meals and where she would like them. Anyhow I left there and made my way to Saugatuck, on the west coast of Michigan, on the lake. It is very near Grand Rapids. It is a small, quant town. Lovely long shore line to walk along. I was on the beach by 3 and stayed till 8pm. Was really nice with warm sun. The Monday was overcast and a chilly wind blowing so did not do much. Still had a long walk on the beach. Tuesday morning was the same so I left and went via Holland to a a nice bakery stop buy bread and cakes!!!! Returned back to the Brian's House to collect Di. She was in a much better frame of mind and glad to be at home.

On Wednesday afternoon we left for Detroit and stopped at Rochester Hills at a real nice fish restaurant for dinner to celebrate Di's birthday. Then downtown to Holiday Inn for the night. Thursday walked to the Federal court house which was round the corner and waited for the swearing in process. There must have been about 50 people being sworn in. Was a good ceremony and the judge gave a small speech. I am now a full fledged, proud US citizen. Di still has to wait 2 years. Afterwards went back to Birmingham, which in Michigan is an exclusive suburb, and had lunch to celebrate.

FROM THE WEST COAST (of michigan)

I note that it is nearly a month since I last blogged. Sorry. Things are okay. Di started with hospice and we have been very impressed with them. A nurse comes once a week to take Di's vitals and chats. The doc also came to the house. We have also had a chaplain and social worker visit. They have increased the steroid meds so that she can knit and it has made a big improvement. The confusion is still there and she gets very frustrated at times [as does Ian].

We are currently in Holland on Lake Michigan (also called the west coast!). It is a nice town and all the spring flowers and tulips are out. Di is not so happy as she is out of her comfort zone. She fights with the (water) taps and not knowing where everything is. My sister is currently visiting from Cape Town.

We will go back to Midland this afternoon as that is less stressful for me. I have realized my life has changed and that I can't just go off for a walk and leave her here as Di then stresses. It is easier at home.

Well am being called for lunch so will try and write more often.

Decisions for the Journey

Hello

Time flies by so quickly. I realise that I have not updated the blog - sorry!! Di has been progressing slowly, though she now has great difficulty in knitting. She does not give up and tries and tries. Often she will get one row in and then make mistakes, or just plain forget what to do. It is extremely frustrating for her, and me!!!!

We have had many discussions on how to proceed with the medications and she begged not to go for another MRI and have the docs poke her with needles etc. I, and the children, explained to her that this was needed in order to try and get a few more months or to beat the cancer completely. When we were in Ann Arbor we spoke with the head of the department and he said that her chances were not that good as the tumour was such a progressive one. The thing that counts the most here is quality of life. The side affects of the aggressive treatment are not that pleasant. She has nose bleeds resulting in sheets having to be washed etc. She has shivering spells. This week the weather has been good and I have been in shorts and Ts, whilst she sat in a chair covered in a duvet and saying it is too cold. We have been told this is the result of the treatments.

Anyhow, my dear friends, I was going out of my mind. WHAT is the right decision? To fight on or stop? We called our Priest in and had a good discussion with him. As he left Fiona arrived and she and DI had a private talk, then Andrew appeared on skype and we had the 4 of us having a family discussion. Diana made the decision to stop the aggressive treatment and to enter hospice care. Both the children and I agreed to this. We know that God can heal whether on meds or not. So with that I called hospice in and they have taken control of her care. Di will remain at home and take comfort meds to make her life as comfortable as possible. The one big thing is that she has no pain.

With the fine weather I have taken her out and walked round the house and the fresh air has been good. We take one hour at a time. The docs have said that normally people live from 6 to 24 months with the tumour. we have had 6 months so enter a new path on our journey.

For me, I have no idea where the new road will take both of us. I have found the time extremely stressful and sometimes beat myself up about it all. Many tears have been shed. I will not use the 'd' word and talk about us all waiting in an airport departure hall waiting for our flight to be called. Or being on a ship sailing away and people on the other side waiting with great excitement to welcome their fellow traveller home. Life is about stories, so we talk about where and what we have done and what Di will be able to do on the 'wings of the eagle'. Life is a journey and nothing prepares us for some the roads we will take. Life is also a drama and I make up stories and situations to act out. Tears are allowed on this journey, but laughter is the best medicine.

I will keep you informed as we travel along this new path. Shalom. Ian

From Chris: Please continue to support Ian and Diana with your prayers. Don't be strangers. Diana very much enjoys chatting with folks. There is always much laughter in visiting with them which is as much an encouragement to me as it is to them. Spending time with Di will also give Ian a respite from time to time.

Coming Home!!!

Morning from a great day in Michigan. I think spring is on the way, snow is melting and the sun is out. Di had a good day yesterday. This morning she is more awake but has a terrible headache. The docs have been around and say all her vitals are okay and it is ok to go home.

They have arranged for hospice to visit as I need help now. If she improves then we can stop the hospice and then recontinue. We have decided, in discussion with the docs, to give her a break from avastin tomorrow.

So we start a new day on the journey and see what happens. Thanks for all your prayers and support.
Love Ian.

Better News

From Blog master as Ian calls me:

I spent most of Wednesday afternoon with Di. I found her awake and alert. She seems to have come out of the recovery time after the seizures. Time will only tell but she seems to be about where she was a week ago at quilting group. She was able to feed herself soup and salad for lunch -- a bit shaky but improving as time went on. The physical therapist had her use a walker and she seem far more confident and actually walked faster. She also climbed stairs. Ian was a bit taken aback when he arrived back from Midland and was very encouraged.

It was wonderful to spend time talking with Di. She talks about accepting God's will, wanting to give Him the glory, and being at peace. She has such faith, courage, and determination -- it is quite inspiring.

Not sure when Ian and Di will be back in Midland but they continue to covet your prayers and encouragement.

Chris

No Good News Yet -- Keep Praying

Morning all

Another great sunny day in MI. No change with Di. The doc came and visited this morning. She is basicaly in a semi coma. She sleeps and sleeps. Will come to when spoken to and then falls asleep. Yesterday when talking to Andrew she fell asleep. She doesn't want to eat or drink. This morning after the nurse had given her a wash I made her get up to clean her teeth. The toothbrush was all over the place. Then back to sleep. She still can't feed herself. I have come to the conclusion that only God can heal her, whether that be healed on this earth or healed in heaven.
Sorry I do not have good news. Will report again. I have to go back to Midland tomorrow but will be back in the afternoon and will send the next report.
Love u all Ian

News from Ann Arbor

Hello
Well here am reporting from my second home. University of Michigan Hospital. Have been to see her old nurses and physio guys.

They have put Di in a private room opposite Nurses' station. That is good as she still can't work out that to call a nurse she must push a red button!!!!!! She sleeps the whole time but this is typical after 4 seizures. The doc came and says they want to still keep her and monitor the situation. She had difficulty eating with the coordination of her hands. She then gives up and I feed her.

The doc is getting the hospice people to come and talk with us as I may need help at home. I feel so for her. Well no other news really. Lunch has arrived so will help her. Will report when I have more news.
Ian

More to pray for

Hello. An update on Di. On Friday night she called me from the bathroom and her hand had started jerking. She was having another seizure. Within 1 hour she had 3. Ambulance came and took her to ER. She then had a large one. Midland called Ann Arbor and they wanted her there so an ambulance drove the 2 hours here. More tests were done, including a lumber puncture. Everything came back normal. They will admit her overnight to monitor her and give me drugs to stop the seizure in case she has them again. We should return home tomorrow. We send our love to you all.
Ian

Good News! Keep Praying! Keep Encouraging!

Hello all.
Well some good news. After the MRI Di was very stressed and shaking. She said NO MORE. Anyhow calmed her down and off for blood work and then the dear doc. He said the episode of last weekend was probably due to them decreasing one of the drugs - a steroid. If it continues they will up the strength. Then he shows us the MRI and says there has been some shrinkage which was exciting. The main tumour has shrunk considerably. Di then asked what her life expectancy was. He said was still hard to say but could be between 6 months and 24 months. He has some avastin patients who have been around for 5 years. The drug has been around for 5 years. I questioned about the reports on the Internet speaking about only prolonging 2 months. He said the better results were not published as they were still ongoing. So we have decided to continue for another 2 months with 4 more infusions. We will then make a further decision then. He said it was def good news.
I asked Diana what she would like to do and she said carry on. I told her no more complaining, if she wanted to carry on.
We are def not out of the woods, but much better than we thought.
So thanks for all the prayers and support. The old girl is still breathing.
Ian

News from Ann Arbor

Hello all. We are in Ann Arbor again for another infusion. Di is basically the same and no real change, though the memory is getting worse. Saw the doc and no changes till the next MRI in 2 weeks time. I did ask how long she would be on the Avastin and basically as long as her body can take it for the rest of her life with Temodar thrown in once a month. We are both not happy!!!! Looks like no long trips to South Africa. We will wait and see what happens in 2 weeks.
Love u all. Ian

Carrying On!

Hello All. Feel I should write. Well the family have gone back to South Africa and life has returned to the 2 of us. Diana is progressing and on Friday we again go back to Ann Arbor for blood work and another infusion of Avastin. I have found that her memory has worsened, but she still walks and carries on with life as much as possible. She is still knitting the hats for the Alaskan fishermen.
One reason for writing today is that 10 years ago Diana, Fiona and myself arrived at Newark airport in New York. That was the beginning of a new life in the US. It has had its ups and downs but we decided to make the US home.
Sorry this is short but all is quiet on the home front. will stay in touch. Keep well. Diana sends her to love to everyone and thanks you for your prayers and support. Ian

More Information on Avistan

[Click on the title for this post to learn more about the drug, Avistan, and its very recent use with brain cancer]

Di seems to be in good spirits. I think because she has the house back to herself and not tripping over things. I took her to home group last night and she was 90 minutes late for bed!! She enjoyed it and was laughing and talking. I thought rather let her 'live' than back to bed!!! Ian

Update from Ann Arbor

Hello
From kids last night: [It has been a long tiresome day, we had a meeting in Ann Arbor with a few of the big docs. The Doc has expressed some concern about the MRI. He is not sure how the tumor has responded to the treatment so far. He has suggested further treatment, which involves a more intense chemo and an infusion which starts on Friday and will continue every two weeks for the next few months. Mom is now tired after the long day, but is now home and sitting down with some dinner.]

[Yesterday] was long beginning at 7.45am and finishing at 5.30pm. Basically the tumour has not grown, however, the doc is concerned as there are white blotches around parts of the tumour. He says that could be as a result of the intense radiation and chemo OR that the tumour is still active. Instead of waiting he wants to give a double dose of chemo for 5 days, starting today and then a bi weekly infusion of Avastin. This will start on Friday and has to be done in Ann Arbor. Another MRI will be taken in 2 months to again asses the situation. So no trips to Florida or South Africa!!!!!!
Ian

Happy New Year

Happy New Year. From all of the Macs to all of you a Happy and Blessed New Year.

Well the turkey has been eaten and I think the ham that was left over needs to be thrown!!! We all had a good Christmas and Di mad a good recovery from the seizure. She was very quiet for a few days afterwards, but is now back to normal. We have loved having the children here and they seem to have a fascination for shopping both in Midland and the local outlet mall!!! I have warned them that the luggage allowance has changed so will be interesting when they go home. We have had minimal snow, which I am sorry about as last year we had SO much. Andrew says as the plane leaves the US it will snow again. Anyhow we did have a few light snow showers and I had him out shovelling and using the snow blower. Watching how the children react to the cold I realise how different living in a cold climate is. I feel like an old nag telling them do this do that. In the end I have kept quiet and let them learn the hard way!!!! The deer fortunately have not been a problem YET. There have been footprints in the snow, but they have not jumped the fence to chew the plants. Managed to spot 2 deer in the distance for Andrew to see. They walk on our lawn and dig into the snow to eat the grass underneath. I don't object to that as it does not harm the grass. We have had grey days and lovely sunny days -- New Years day and today. We did think of taking to Rachel to the stables this morning, but the temp outside is negative 17Celsius!!!! The sun makes all the difference though.

Health wise been generally okay. I had a stomach bug last week and was out of it for a day. Diana has it now and was up all night. I am keeping her in bed today as we all want to go to Church tomorrow as a family.

Monday afternoon I will take Diana back to Ann Arbor as Tuesday she has another MRI and various doc visits etc.. Will be good to hear what is happening. Though she appears okay I have noticed that she has slowed down considerably. Andrew and family leave on Thursday night for Amsterdam and then connect to Cape Town. A long flight and hope that Miss Rachel will be okay. Not sure how long before we will have to be at Detroit as there are now new security regulations after the Christmas day attempted disaster.

This month, January 2010 is a milestone in our lives. On January 19th we will have been in the US for 10 years. Does not seem like it. Fiona is now a US citizen and I can apply this month.

Will let you know how Tuesday goes with her Lady!!!!
Hugs to you all. Ian