Overdue Updates - Grey Cup Edition

It has become increasingly apparent that my fair name and technological savvy have come under attack in a campaign of slander launched by my darling daughters and their co-conspirators Joy and Heather, the BM's. ( Blog Mistresses ) I have, therefore , taken it upon myself to assume editorial control of this blog to stem the flow of unflattering remarks about my capabilities or lack thereof. I will continue my rant against the injustices heaped upon me by my ungrateful offspring later but a few of you may be interested in news about Sara.

Sara has completed her second round of chemotherapy and is into her second week of the post-chemo recovery phase. She has been able to stay home overnight for most of the phase, returning to the hospital daily to check her blood counts and receive blood transfusions. She has been feeling good throughout most of this second round of treatment. She has been taking advantage of November's terrific weather to go for short walks around the neighborhood with her mask, scarf and one of her growing collection of hats. She is often quite fatigued in the afternoon but seems to perk up when dinner is delivered !

Presently, the chemo has wiped out most of Sara's white blood cells making her very susceptible to bacterial infection. My Uncles from Saskatchewan have been very concerned about Sara developing an infection. They have been doing research on the internet into " Hairborne Bacteria " . Their research reveals that hair is a big source of potential infection. To protect Sara from this ominous threat they generously sent the girls and me :

" Saskatchewan Super Heavy Duty Hair Disinfecting Helmets "

These helmets are reputed to have potent antibacterial activity as a result of having been soaked in vodka for a week. The Uncles have insisted that anyone with hair in close proximity to Sara be required to wear one of these helmets. ( Erin and Ali told me that I still " sort of have hair " so I would need to wear one too ) Since Sara is sporting a little less hair these days the Uncles sent her a toque embroidered with a large " S ". ( they told her that it stands for " Super Sara " ).

My Uncles aren't actually medical professionals. They are farmers, curlers and drinkers whom we suspect may have ulterior motives with the timing of these gifts of head wear. To check on the legitimacy of this form of infection control I consulted my esteemed colleagues Dr.s Dave M., Rick E., Bruce Y., and Rob B., to see if they had any experience with this technique. They all assured me that they had been involved in some of the early research projects on disinfecting helmets during their years at University in Saskatoon and that they were universally accepted as the treatment of choice to control hairborne bacteria in Saskatchewan.

Sara will continue to be monitored in and out of the hospital during this recovery phase for another two or three weeks. She will require another round of chemo that may commence just before or just after Christmas. Recent meetings with the Medical team have given us some further insight into the Stem Cell Transplant process. The planning and scheduling of the transplant is quite involved. A suitable donor has not yet been identified but this is not a surprise as we only started the search process a few of weeks ago and it often takes two to six months to find a good match. Once a donor is found it often takes a couple of months to co-ordinate the appointments and treatments required for both the donor and the recipient. The earliest that a transplant could take place would be some time in late February.

Sara has commented that as time passes in this process she is exceedingly grateful not only for the exceptional medical care she has been receiving but also for the support of our friends, family and even casual acquaintances. We couldn't imagine how much more difficult this journey would be without all of the tremendous support and positive energy that we have all been receiving. ( our house has never had Christmas lights up this early, our cars have never been this well maintained and with Mom around I have never had such a selection of well ironed shirts to choose from ! )

We do have a couple of requests to extend to anyone following this blog as the Christmas Season approaches. The holidays are traditionally a time for visiting friends and neighbours and while we would love to catch up with all those that we haven't been able to see for the past couple of months Sara doesn't have the stamina to greet a parade of visitors and well wishers. She seems to be able to communicate to me quite clearly when my company is fatiguing or vexing her but she is too polite to let others know when she is too tired to visit. For that reason we ask that anyone wishing to pass on Season's Greetings do so by mail or e-mail ( kjtod@shaw.ca ) . We are even worse at answering e-mail than we are at updating this blog so please don't be surprised or offended if you don't receive a reply.

The second request relates to Christmas baking. We seem to have an inordinate number of master chefs and bakers amongst our circle of friends and acquaintances. While we all love baking we are running out of freezer space and despite my best efforts to eat my weight in muffins, cookies and cakes on a daily basis we are falling behind the pace of the baked gifts that are being dropped off at the house. ( If Erin and Ali were writing this note they would simply have said " Please refrain from bringing baking by the house because Dad has the willpower and self restraint of a hog at a slop bucket and he is starting to blow the buttons off all those shirts that Grandma ironed ! " )

We encourage people to make any donations of extra baking that they might have to any of the many agencies and programs that provide for those who are not as fortunate as us in the strength and depth of their support groups.

I will close this update with a promise that we will keep you abreast of any developments that arise in the search for a stem cell donor.

Take care , enjoy the Grey Cup and consume watermelon responsibly.

Kevin ( for Sara, Grandma and the Melonheads )

Friends of Sara Blood Donor Clinc

Canadian Blood Services says the Nov. 30 clinic at the North West Family Church in Royal Oak is 96% full! Joy has been hearing from a lot of people in the Tod's ringette family and is pleased to report the volunteers for that night also come from this wonderful bunch of people!

If you would like to donate blood at that clinic, which runs from 3-8 p.m., please call 1-888-2-DONATE.

NOTE: Canadian Blood Service uses a call centre approach to customer service. This means you could be talking to someone who is not familiar with Calgary. (Some of them also do not appear to be all that familiar with the CBS web site, but that's another story!).

Please be patient with them -- and do persevere. They will find this clinic if you give them time, and keep telling them you KNOW it's there!

If you cannot make the Nov. 30 clinic, but want to make sure Unit 57 at the Foothills Hospital always has enough blood products for people like Sara, fear not!

The CBS hosts blood donor clinics in Calgary every day.

The next one in North-West Calgary will be held:
Foothills Alliance Church
333 Edgepark Blvd
Saturday December 5th
9:30 am to 2:30 pm

Call 1-888-2-DONATE

Salutations from Sara

                                                               

Sara and the Wild Things                                              

I am now a month into this journey and things have gone well. I found out last week that I am considered to be in “remission”, which was the goal of the first round of chemotherapy. I had another bone marrow aspirate and after analysis of that, the doctors determined that I still had 2% leukemic cells, but less than 5% is considered to be remission (when I started, 70% of my white blood cells were leukemic). This remission is good news and means that I can proceed with the next step, which is more chemo. This will start on Friday the 13th! It’s a hard thing to look forward to… but I realize that it takes me a step closer to the long term goal.

We also received the blood typing results for Chris, my brother, this week. He unfortunately is not a stem cell transplant donor match for me. As there was only a 25% chance that he would be a match, we weren’t surprised by this news. The good news about my HLA (human leukocyte antigen) is that I have common antigens so the doctors expect that I should be able to find a stem cell transplant match from the donor registry. This process usually takes 2-6 months. The transplant team has initiated the next steps in the matching process.

Many people have asked about how they can register with the stem cell donor bank. That information is available at: http://www.onematch.ca/  or http://www.bloodservices.ca/

                                                                     

Team Tod comb-over

While people that I know may not be a match for me, they may be a match for someone else in circumstances similar to mine.

I’ve been able to have this past week “off” from the hospital. It is a big treat to stay home and not have to rush back for the evening curfew. I’ve been feeling very well over the past week and sometimes forget that I’m sick. I do, however, seem to be overcome by a wave of fatigue whenever there are meals to organize or dishes to be done (No one has caught on yet …).

While Kevin, Erin and Ali were away at a ringette tournament in Saskatoon last week-end, I had a girls’ week-end here – including bubbly – Perrier – almost like old times.

Thanks again for all of the ongoing help and support. We have enjoyed some great meals. Kevin and the girls are getting spoiled. We will try and let people know about the matching process.
 

 Thanks, Sara , Kevin , Erin and Ali

                                              

              It's definetly working better for Mom than it is for Dad

Overdue Update

We are a little slow in updating everyone on Mom’s progress but here is a short report on:
“ Life on Unit 57 ”

For the past three weeks Mom has been living on Unit 57 at the Special Services Wing of the Foothills Hospital. She used to work on this unit so she knows many of the staff. It is a very busy place. Mom has never been very good at sitting still. She was never bored on this floor as a nurse but as a patient she doesn’t have much to do so - she came up with an official sounding title for herself. She is now, the self-appointed “ Line Dance Instructor “ for Unit 57. There isn’t a big demand for line dancing on a floor where everyone is getting chemotherapy and is attached to an IV pole, so Erin and I seem to have been volunteered as her only students.

Mom claims that she has been confined to her room because of a mild case of the sniffles and the staff don’t want to take a chance of it spreading to other patients. We think that is was because she was caught IV pole racing in the hallways. She was seen cutting off an elderly gentleman and running him into a food cart. (No charges were laid because the elderly gentleman turned out to be Dad).

Mom is feeling much better now that some of the side effects of the chemotherapy have decreased. She has been able to come home for a couple hours around suppertime the last few days. She has commented on how nice the yard is looking since the neighbors have cleaned it up. We’ve all been enjoying the great meals that friends have delivered to help us out. (For someone who is sick, Mom seems to have been eating more than her share! ) She usually rests on the couch after dinner. When she starts making comments about how messy Erin’s room is, we have her escorted back to the hospital.

We still don’t know if my Uncle Chris is a good match for a stem cell donation. It takes at least three weeks to analyze the blood for matching. He had his blood test on Oct 16th so it will be a couple more weeks before we know. Mom will likely be in hospital for another week before they do another bone marrow biopsy. If her blood counts look good, she may be able to come home for a few days before the next round of chemo.

Positive messages help!
All of the cards and emails have been greatly appreciated. In the evenings at the hospital when she is tired, Mom has really enjoyed having us read all of the positive notes of support and encouragement to her. She is grateful for the help of everyone who has helped drive us around to all of our activities and ringette games. Erin and I are also very thankful because the people who have taken over the driving seem to go to the wrong rink a lot less often than Dad does!

The gift of life
One of the things that take up a big part of Mom’s day is all of the blood transfusions that she needs. She has had 12 transfusions of blood and platelets in the past week and a half. Many people have asked us what they can do to help. People can help Mom and all of the other patients with blood diseases in the hospital by taking the time to donate blood. Mom is feeling better each day, but it is the blood transfusions that she depends on until her body can start to produce its own blood cells again.

Visitors still limited

Mom’s immune system is weak and while she is on isolation, visitors are still very limited. Her hair was starting to fall out from the chemo so she arranged to have it cut on Sunday. She said that her head felt better, but it was a little cold. Dad generously offered to share his collection of hats but she hasn’t jumped at that offer. It is never a good idea to start looking too much like Dad.

Since she has finished the first round of chemo things have been going quite well, but it seems like a long time. We miss having her at home. We are all trying to remember to take things one day at a time.

Thanks for all of your support

Ali (for Mom, Erin, Grandma and Dad )

Friends of Sara are invited to donate the gift of life!

Canadian Blood Services (CBS) is hosting a whole blood clinic Nov. 30 from 3-8 p.m. at Northwest Family Church, 10307 Eamon Road, NW. (North on Rocky Ridge Road off Crowchild) and we're trying to pack it with Friends of Sara.

Walk ins are welcome, but CBS prefers appointments.
Please call 1-888 - 2- DONATE.

Not sure if you can give? Call and ask! An RN will answer your questions.
Want to give blood but can't attend that clinic, call 1-888-2-DONATE and they'll help you find a clinic that works.

Information about stem cell transplants will be available at the November 30 clinic.
You can also visit: www. onematch.ca

If you know you can't donate, but want to help, email joygregory@shaw.ca
(She's a lifetime CBS reject -- so she will be there handing out juice and cookies, but needs help!)

With an appointment, CBS will get you through the process in 60 minutes!
(From check-in-to-cookies in one hour!)