Welcome!

Laurie had a serious brain lesion that was surgically removed on July 24, 2011. It was uncertain exactly what the disease was and to me, these days were really the fight for her life. After the surgery, Laurie spent two weeks in an Ottawa, Ontario hospital. This period was full of events relating directly to her and to other patients and aspects going on in the hospital during her stay. Laurie came home on Friday, August 5th, 2011. Since being at home, events have settled into a routine but not without the ups and downs of recuperating with a rare brain tumour. Her story is one of hope, struggle, patience and above all, courage. The current update is presented at the top of the page with her day-by-day story presented from the bottom upwards.
This story also has pictures of Laurie. She is a woman of many interests and dimensions. She and I love to travel and September has been our favourite time of year to do so. The trips taken over the past six or seven years have seen us in places like western and central Scotland, Iceland, the Faroe Islands, New Zealand, Australia, Cape Breton, Charlevoix, Ireland and to Newfoundland a couple of times. The first things that Laurie always packs are her plant press, silica gel bags, binoculars, loupe, botany reference books, bird books, hiking books, note books and always a good raincoat. If there is any room left she packs some clothes. You can usually recognize her at the airport because she is one with three or four layers of clothing on.

Monday 19 November 2012

Laurie and Darwyn



I would like to begin this update by thanking those persons who have come to see Laurie and I and to those who have written words of sympathy, hope and best wishes. I am reading your notes to Laurie. I would also like to thank those who have brought flowers for Laurie and food down for me. I am not cooking with the same level of effort or enthusiasm that I did when Laurie was at home so having some ready to go meals is much appreciated. It has now been two weeks since Laurie entered the Kemptville District Hospital (KDH). The ward that she is on is quite small and I know of at least 10 rooms available for palliative care. Laurie's room is quite nice and is perhaps one of the nicest in the area. There is only one room past hers which means that not a lot of people traffic goes by her room. Some rooms have multiple patients which Laurie experienced in the Ottawa hospital stays. Not exactly ideal so I am thankful that Laurie is quite comfortably situated in a quieter room.

Laurie's health over the last week has not really changed. It was the first week there that she took a dramatic turn for the worse. Generally, the days are quite similar now. I am getting to the KDH by 08:00 now and have bought a monthly parking pass. This allows me to come and go whenever I wish and is much more economical than paying parking for each visit. It is much more convenient as well. Laurie is sleeping when I arrive and she looks comfortable. Darwyn is always close by her. I let her sleep though breakfast arrives between 08:00 and 08:30. When she shows sign of waking up I open the curtains and gently help to wake her. I call the nurse to help Laurie with the bathroom visit. It really takes two persons now to help Laurie since her walking, balance and sitting are not very strong.  I leave the room so that the nurse can assist Laurie to prepare for the day. The bathroom is a private one in the room and is quite nicely equipped with shower, toilet and sink. I get the breakfast ready for her return to the room.

Laurie has breakfast and her other meals while sitting in a nice chair. I prepare her meals for her but she often likes to take the spoon from me and eat herself. The same goes for drinking.  Breakfast can take quite a while. Laurie often eats everything given plus some Greek yogurt that I have brought in. The little refrigerator is now filling up with a variety of things to supplement Laurie's hospital foods.  After breakfast and the pills, we watch television. Laurie seems to enjoy the Food Network and she watches intently all of the shows, some of which are really quite interesting. Hopefully, I will be a better cook after watching these programs.

We stand up from sitting about each hour or so. I help Laurie with this as she can not do this on her own. The lunch usually arrives just after twelve. I selected the menu for both lunch and dinner while the breakfast was delivered. I choose the hot lunch since Laurie has difficulty with eating sandwiches of any kind. There are also pills and vitamins for lunch which are crushed and I mix into whatever food seems most appropriate to do so. I think that the majority of pills have a bitter taste so putting them in jam or apple sauce or yogurt seems to hide some of the taste. Lunch is typically a slow process but Laurie seems to enjoy the meals and there is a good variety of menus.  After lunch I call the nurse to help Laurie with the bathroom routine and also to get her into bed for an afternoon rest. Typically Laurie is in bed and falling asleep by 13:30. I stay with her until she and Darwyn are asleep.

Perhaps the most difficult times for me at the hospital are in seeing that the majority of the other patients are much older than Laurie....perhaps in their late 60s and 70s. There is a different ward for those persons who are older. The other hard time is when I see Laurie walking. She requires assistance as her balance is not steady. She moves very slowly but she works hard with the physiotherapists when they take her down the corridor. I see a lot of determination in her eyes although this must be so very difficult for her. She continues to have unbelievable courage and I know that my efforts would not be so motivated.

Over the years, Laurie and I have spent a lot of time walking and climbing. We have climbed the highest mountains in Vermont (Mansfield at 1,339 m), New Hampshire (Washington at 1,917 m) and in New York state (Marcy at 1,629 m). We have walked many kilometers of trail in Ontario and Quebec and in the New York state Adirondacks and New England Appalachians. Laurie has climbed Ben Nevis, the highest peak in the British Isles at 1,344 m and Slaettaratindur at 882 m which is the highest mountain in the Faroe Islands. She climbed Newfoundland's second highest peak (Gros Morne at 807 m) as well. No wonder we felt so tired getting back from our holidays! So, to now see Laurie trying to walk as best as she can down the corridor is really heartbreaking.

I leave the KDH for a few hours after Laurie is having her afternoon nap. I do some shopping in Kemptville if required and then return home for a while. I am doing her laundry every two days so that she has a nice fresh supply of day clothes and pyjamas. When I arrived back in the afternoon one day this week Laurie's (and Darwyn's) blanket from home was missing. This is a special blanket that one of our friends passed along to us. It has an embroidered moose on it and it very soft and warm. Being white the staff doing the laundry just took it and tossed it in with the other items to be laundered. I was able to retrieve the blanket and gave it a good wash at home before returning it. The afternoon time has also given me a chance to get the cars and the outside of the house ready for our winter. So far we have had no snow but the temperatures are now starting to fall into the minus Celsius level at night.

The drive between the KDH and home is usually 12 minutes unless I hit rush hour and the trip takes a minute or two longer.  I leave the house to drive back to the hospital by 16:15 arriving well in advance of her dinner. Laurie seems to have a good appetite for dinner as well. I tend to cleanup whatever may be left on the plate since I do not eat dinner until I return home. I do have a snack however while at home in the afternoon. After dinner we watch more TV with the Food Network being the channel of choice. We take a little walk between shows so that Laurie can look down the hallway to see what might be happening. Usually it is pretty quiet as others are probably watching TV too at that time.  Between 20:30 and 21:00 the nurse arrives to help with getting Laurie ready for bed.  I stay with Laurie in the room as she is falling asleep. Sometimes she is not quite ready for bed so she watches TV from her bed for a little while. By 21:30 she is typically almost asleep.

I have come to know and like most of the nurses attending to Laurie. There seems to be many nurses and it is infrequent that the same nurse attends to Laurie on more than two or three twelve hour shifts per week. The bad experience I had with the very first nurse seems to be behind us now. I still find some inconsistency in Laurie's care that should not be there. This can apply to some nurses not bringing the pills at the correct time or not knowing that pills should be prepared. Sometimes the pills arrive whole instead of being crushed. I administer all of Laurie's pills since I have the time and the nurses always seem to be ten minutes behind in something. Most nurses have told me that they appreciate the time I spend with Laurie which results in her being somewhat of a low maintenance patient for the nursing staff. The doctor drops by each day, or is supposed to, to see how things are going. They rotate each Friday for a week's work in the palliative care ward. One day this week I asked the doctor about the results of Laurie's blood test for her dilantin level. He said that it had not come back but he would let me know. He actually called me later in the day and we talked on the telephone about the results which were OK. So, generally good nursing and doctoring for now but I am still apprehensive about things.

Laurie's sister has come up twice to the KDH. It is very good to have her here and I really appreciate the extra time it allows me outside of the hospital. Logistically, it can be difficult for her to get here since she works in retail. As well, the drive is about five and one-half hours if the weather and the roads are in good shape. She is currently sitting with Laurie as I am at home writing this update.

For those that regularly check the blog, my intention is to post updates about every two weeks now and include some current pictures.

Please keep thinking of Laurie and arrange a visit with me should you be in the area.

Wednesday 7 November 2012

long way home

Laurie's brain tumour is classified as a Grade IV glioblastoma multiforme. When this diagnosis was made by the pathologist in July of 2011, it was communicated to us that it is a serious illness. Although various treatments can be applied, the full recovery from such a brain tumour is rare. Since the last update about two months ago, Laurie's health has deteriorated significantly. This was especially the situation over the last ten or so days. Over the past couple of months we have met with the radiation oncologist, the chemotherapy oncologist, the surgeon and her GP on a number of occassions. Laurie had two MRIs that showed tumour progression to the right side of the brain and along the ventricles. The prognosis for Laurie was not very good.
 
On Friday, November 2nd, 2012, I took Laurie into the Kemptville District Hospital (KDH) for a stay in the out-patients area. The plan was that I would get some rest and that Laurie's condition could be better assessed over a long period of time. On Wednesday, November 7th Laurie was to return home. However, this will not be the situation. Laurie's is now in the palliative care ward of the KDH under the recommendation of the chemotherapy oncologist and her GP. In speaking with the GP this morning, I was told that Laurie would pass away in her room at the hospital. There is nothing that anyone can do for Laurie at this point. In the Fall 2012 issue of Brainstorm (a newsletter of the Brain Tumour Foundation of Canada), there is a parallel story of a man with the same disease. His glioblastoma was detected in January of  2011 and he died in early May of 2012. He was only 24 years of age. Although no one involved in Laurie's health care has told me how long she may live I suspect that it will not be very much longer. She is barely able to walk and can not walk unless escorted. She is eating a little although this is a slow process and one that requires direct assistance. She has no cognitive abilities that I can report on but she does smile when I arrive in the mornings to see her. Her focus seems to be on a television channel although she is likely not able to comprehend the program.
 
Laurie has a single room which is comfortably equipped. Her large window faces south which is the direction of Oxford Station. The surrounding environment seems quite peaceful for the most part. She is quite tired and sleeps after lunch until late afternoon. I try and arrive about 11:00 and help with her lunch. I stay with her until she is ready for a sleep. I return in the evenings after dinner until she turns in. 
 
If you are in the area you may visit with Laurie at the KDH. She is on the second floor in room 109. Do not expect Laurie to indicate any recognition or to communicate. She will be tired but hopefully will be able to sense your being there with her. This update is on the short side since I really can not say anything more than I have.  Thanks to those of you who have continued to read the blog and for your thoughts of Laurie and I. I know that she would appreciate this very much.
 
Mark