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Sunday, September 30, 2007 9:46 PM CDT
Greeings from a white, snow-covered Yellowknife. Shiri remains a healthy and happy 6 (almost 7, as she always reminds me) child. Her early August checkup was completely clear - even the lung function test that I asked to have showed no lung problems (I was concerned about the effects of her past radiation on her lungs...she seemed to have a tough time "keeping up" with other kids - now I know it's just because she's a princess). Our monitoring regime is now every 6 months so her next set of tests are late January/early Feb.
So far, no late side effects, no ongoing issues... we are truly blessed in that regard.
The summer months were chaotic, happy and full. Life truly is back to normal for us. Well, perhaps even more chaotic, happy and full than pre-cancer! Cancer in a kid has a way of truly reminding us all about how important it is to just live life every single day. Just the way kids do it.
The above pic is from the Terry Fox Run - Shiri has always been in that run - pre and post cancer - and I think it is even more important than ever to support these types of runs that raise money for, in large part, pediatric cancer research. We have way to many children who die far too young from cancer. We were lucky. Many others are not.
Sheila
Thursday, June 14, 2007 11:33 PM CDT
I am belatedly - very - updating this website. We remain remarkably fortunate in that Shiri is still completely healthy. Her April checkup showed no evidence of disease (the lingo being NED) - ie. cancer free. Three years ago next week we returned back to Yellowknife after Shiri's last chemo treatment and end of chemo celebrastion. I remember coming home the day before summer solstice, still reeling from the typical five day hospital day/end of chemo stuff (ie. complete lack of sleep) and Shiri's dad and I having our hair shaved in the context of a local fund raising event less than 24 hour later. It just all seemed so unreal and "vortex" like now.
Three years later and our lives have settled into a more typical pattern of school, work, end of year activities, summer holidays, planning for a house move, and just generally living a life which is not dominated by cancer. But there is not a day that goes by that I don't think about the impact that childhood cancer, and cancer generally, has on families. Tomorrow night, we are doing the Relay for Life and staying out all night. I know it will be an emotional evening - Shiri is undoubtedly the youngest survivor there - they ordered a special kid's shirt for her this year - last year, lots of apologies for not having a tshirt in Shiri's size - I'm just glad that those shirts are rare! I know tomorrow night will bring home to me - again - just how lucky and fortunate we are as a family to have Shiri with us.
Shiri's off for her annual Edmonton checkup in early August. At the Stollery, they have a separate program for kids who are two years or more out of cancer treatment - a survivor's clinic. Shiri's first appointment with this program will be in August and it apparently focuses less on the prospect of cancer returning and more on survivng in a healthy way with the effects of treating childhood cancer. I'll report back in August on that appointment and on the joys and challenges of our household move then! Until then, our thoughts and prayers are with all of our friends who are in the world of childhood cancer.
Sheila
Tuesday, February 6, 2007 9:05 PM CST
Happy (belated) new year to all our friends and family!
Shiri's ultrasound and lung xray was rescheduled to February 2nd, hence, the reason for the delay in posting results. She remains completely all clear - no evidence of disease anywhere! We go again three months hence, and then for our 3 year OT checkup this summer (likely late July). She is growing like a weed, happy and healthy. We had a fabulous holiday in Jasper, just got back from a quick trip to Ottawa (part business and part family) and are looking forward to spring break where we are planning another carribean cruise with her sister, Jessi. Then, we'll settle down and work really hard! For all the heartache of the cancer years (I count the first while off treatment as right up there with the year of treatment), we are in a good place right now and enjoying life. I've been reading a lot about post-treatment late side effects, but so far, nothing at all to indicate any concerns.
I will post new pictures soon and I thank you all for checking in on our little girl. I'll definitely post again in April - we are still on the 3 month follow-up routine.
Sheila
Friday, December 22, 2006 11:04 p.m.
Merry Christmas to our family and friends from snowy Yellowknife. Shiri and I are off tomorrow to Jasper, Shiri remains healthy and wonderfully six, and I'm just so glad to be able to share this holiday season with her and with our good friends. At this time of year, my thoughts are particularly drawn to everyone who is less fortunate. And not just in the cancer world but in the broader world. We passed a Salvation Army kettle tonight doing last minute shopping, Shiri talked about that, and the can drive at her school to raise money for kids, and about how we were very lucky to have food in our fridge, "even though we don't always cook it every day, then we have frozen meals, and if we don't have anything to eat, we can always go to the Co-op". Commentary on maternal culinary skills aside, she has the right approach.
A very merry Christmas to all...I will post pictures as soon as we get back, I promise!
Next checkup - January 22nd. No reason to be concerned.
Sheila and Shiri
Wednesday, November 22, 2006 11:42 PM CST
Clear x-ray, clear ultrasound!! 27 months of being off treatment with no evidence of disease. We are so fortunate. There is not a day that goes by that I don't count our blessings.
Shiri is now six...and with all the attitude of being six. As my friend and law partner, Sarah, says "She is just sooo six". She had a wonderful birthday party and today we received her first grade one report card. For all of the "being six" Shiri displays...the report card was replete with "Shiri's works hard, she listens respectfully to other students, she is a quiet hard worker and she is a role model to other students".... We are blessed to have this child be a role model to others and to get this amazing report card..
Our next xray and ultrasound is here in YK in early January. Then one here in April and a cat scan and oncology checkup in Edmonton in July. We still do 3 months checkup for the next while but without some of the tension associated with our earlier checkups (although still some!!). In them meantime, we're off at Christmas to Jasper with wonderful friends - a truly magical Christmas in the mountains and off to many day to day magical things that happen to every six year old. Life is good and I am only too aware of how fragile that all is.
Many thanks to our friends and family from all of us.
Sheila and Shiri
Saturday, October 28, 2006 9:02 PM CDT
Shiri's Grade 1 school pic is above - I just love this picture. All is well. Shiri's next appointment is now November 7th - ultrasound and lung xray. No reason to believe that anything is wrong.
Right now we are smack dab in the middle of the halloween season. Wow, has this holiday grown! So much activity around it, parties, etc... Lots of fun for all.
We will update after Shiri's tests. In them meantime, to our friends still battling cancer, and to all all our friends and family who check in, our thoughts and prayers are with you.
Sheila and Shiri
Thursday, September 28, 2006 9:52 PM CDT
Three years ago tonight, I was in my office, staring blankly at the files on my desk, looking around, feeling completely shell shocked and helpless. That afternoon, I had taken Shiri into emergency for a distended abdomen. I truly thought it was appendicitis. X-rays were taken, "massive abdominal tumor" "spots in her lungs" (later called "cannonballs" in Edmonton) and Shiri was admitted to hospital in Yellownife that night so Marino and I could organize our lives and deal with our shock. Marino took the first shift at the hospital, I went to the office and tried to transition files over. I stared for a while and then just got up, picked up my running shoes, and turned off the lights. And went home to pack for the unknown future and, for the first of many many nights that year, to the hospital to spend the night with Shiri. We went south to Edmonton the next day and didn't return for almost three months, and then only for Christmas. Our journey started suddenly and with such grief and fear of the future.
We learned so much as parents that year. And today, as we both participated in a school open house, I looked around and once again, for the millionth time, realized just how grateful and lucky we are. Cancer can be a difficult journey to go through. Having a child with cancer is completely devastating. But I learned so much that year. I learned that I will always love my daughter more than anything else - that when push comes to shove, those files on the desk really don't matter. Work will always be there. Your child won't. I learned that nothing really matters as long as you are healthy. Cancer parents really don't sweat the small stuff. I learned just how wonderful and giving people can be. We received enormous support the year Shiri was sick. We continue to receive so much emotional support. As my parents have said, there were enough candles lit for Shiri to light up the entire eastern coast of Canada. I learned that life is fragile and can go in a minute. I think - hope - I came out of this a better parent and maybe a better person.
Those are the blessings of a cancer diagnosis. Lots of trauma, lots of impact in every aspect of one's life, tremendous fear, innocence lost - those are the negatives. But there were blessings and today, as I looked at Shiri at school, so proudly showing us around, I celebrate those blessings. We have that cheeky, happy little girl in the picture above and I'm just so grateful to everyone who, along the way in our journey, made a difference and helped us.
Sheila
Friday, September 8, 2006 8:03 AM CDT
Hello from Yellowknife! We've just finished the first rush of school starting and all that goes with the begininng of the school year and extracurricular activities. We'll post pictures shortly of school time and fall in YK.
All of Shiri's tests turned out well. No reason for any concern. We are now being monitored mostly in Yellowknife - still doing xrays and ultrasounds on an every three month basis here. We go to Edmonton next July for a cat scan and survivor's checkup (gotta love those words) and likely annually thereafter. At long last, the initial trauma of a cancer diagnosis and the emotion of dealing with it is beginning to fade and our lives are beginning to be back to normal, in the sense that I actually feel we can make plans for a future. Still, at this time of year in particular (Shiri was diagnosed in September 2003), the memories of those first few weeks do come flooding back...
We'll update after our October appointment. Take care and enjoy the balance of the fall weather before the snow flies.
Sheila
Update - Sepember 23, 2006 - The changed pictures are of Shiri at the Terry Fox Run last week - she raised more than $1,000 to cancer research! Things continue to go very very well.
S.
Wednesday, August 2, 2006 12:50 AM CDT
Greetings from Yellowknife!
Shiri and her dad are in Edmonton for her two year "off treatment" checkup and the results are.... ALL CLEAR. Forgive the capitals but it is an occasion to shout the results. There were many days in Shiri's treatment year when I wondered if we would ever be so blessed as to get to this point. A huge positive about your child having cancer is that one never ever takes the day or your child's life for granted.
Shiri is having an echo this afternoon to test heart function (the chemo she was on can have a long term adverse effect to the heart). I'll post the results on that when we get it. Thereafter, we've been told that we are still on a three month watch, although I don't know the exact details of her ongoing follow-up yet.
Shiri's doing wonderfully. Passed kindergarten with flying colours, having a great summer of fun, sun and friends and looking forward to the school year. Life is back to our new normal.
Thanks to all our friends and family for checking up on our little girl.
Sheila
Thursday, April 27, 2006 6:42 PM CDT
CLEAR SCANS! No sweeter words. Twenty-one months in remission and getting closer to the magic two year mark where relapse becomes unlikely.
It's a good day here in Yellowknife. :)
Sheila
Monday, April 24, 2006 11:09 PM CDT
Hello everyone. We're back from Shiri's 21 month off treatment checkup. We won't get the cat scan results for a few days but everything else looks remarkably positive. Shiri was a real trouper throughout the entire long day. Of course, I won't breathe fully until we have the news of clear scans. I spent some time talking to Dr. Grundy today about relapse statistics and follow-up. For those of you who don't know, Dr. Grundy is a world renowned expert on Wilms and we have been so fortunate that he is based in Edmtonton and has been treating Shiri throughout. Dr. Grundy says that if we make it to the 2 year mark, then the chances of a relapse are statistically very rare (he pegged it at 3 per cent or less). He also indicated that they would continue with three month follow-up for a few more years to come (potentially until Shiri was five years in remission) rather than switch to checkups every six months as is more the norm. He's going to work on a new protocol for us and have it ready for Shiri's 2 year checkup. It was his view that given the bilateral nature of her tumors, and the presence of nephroblastomatosis in her right kidney (indicating a precurser to the development of Wilms tumours in that kidney) that spreading out the follow-up to every six months was just too long to go without monitoring. Dr. Grundy suggested, however, that the montoring largely be in the form of abdominal ultrasounds so as to eliminate the radation exposure from cat scans while still providing good follow-up. He's hoping some of the follow-up can be done in Yellowknife so as to eliminate the need to travel south (which is a good thing financially, but it is always a treat for us to head "south").
All in all, a great checkup with a thoughtful discussion on the future. As soon as we have the cat scan results (likely later this week), I'll post. In the meantime, spring has hit Yellowknife with a vengence and we'll be out enjoying the sunshine!
Sheila
Monday, April 17, 2006 4:17 PM CDT
Happy Easter to all our friends and family!
As promised - new pics. The cover one is one of my favorites - taken in Barbados, enroute to a snorkeling destination, sun shining down... Love the cornrows. The pictures inside illustrate the fun side of our travel - my aboslute favourite is the splashing one taken the first night out. I just love how it captured her excitement and energy and happiness.
We had a wonderful time. Two weeks of carribean islands, snorkeling, sunshine, great food, wonderful service and, best of all, time to spend together. We're already planning our next holiday.
Shiri and I are off to Edmonton for her next checkup April 24th, including a catscan. We're back the evening of the 24th and, if past experience is anything to go by, will either know the results that day or within a week. I'll post as soon as I know, however, right now, there is nothing to indicate that anything is amiss. We are so very fortunate to be able to say that.
Sheila
Thursday, March 30, 2006 11:42 PM CST
Greetings! We are back and had a wonderful time! It is late and we are just getting back into our house/work/school routine I wanted to briefly update. I will post more details (and more pictures) later (hopefully this weekend). The whole trip was fabulous, I loved seeing Shiri just come alive in the sunshine and in the water - she so enjoyed the carribean weather, being pampered, having kid fun, spending time with mom, and on and on and on. I'm determined to take some sort of holiday like this every year. My new resolution - live life!
Sheila
PS I'm going to try and upload new pics tonight...if not, I'll have Marino post them this weekend.
Tuesday, February 28, 2006 11:06 PM CST
Hello from Yellowknife - "nine more sleeps" until we leave for our cruise (and here I'm quoting both Shiri and I - I'm looking forward to it at least as much as she is). Shiri continues to do remarkably well - she bounces, dances, skips, everywhere she goes. No respiratory problems, no close calls on any health issues - just abundant good health. I thought she had recovered well a year ago post-chemo; now I know that her energy levels then were a shadow of what they are now.
The picture above was taken on Valentine's Day. A wonderful friend gave us the most special gift - a bound volume of photos, most from our cancer year, many taken from this website, all compiled with love. A true treasure indeed - both the book and our friend Linda.
We are both looking forward to the first major holiday we have had since she was diagnosed 2 1/2 years ago. For so long, I held off doing anything because I wasn't sure where we would be in terms of Shiri's health - now we can literally celebrate life and will do so abundantly!
To our caringbridge friends, especially Matthew, Jessi and Kyle who are stuggling, we send our prayers for the miracle we received.
Sheila
Wednesday, January 25, 2006 10:28 PM CST
CLEAR TEST RESULTS! The results came back in record time and everything looks great. Shiri is now 18 months in remission - we are SO lucky. Our next check up in April 24th for a cat scan and the usual tests. But we'll likely post before then - Shiri and I are going on a wonderful two week cruise in March! We both need the holiday and Shiri sure deserves a special trip and a bit of spoiling (hey, maybe Mom does too!).
Thanks for everyone for your thoughts and prayers - they lift us up when we really need it and I know they are a big reason why we remain so blessed.
Sheila
Monday, January 23, 2006 1:34 AM CST
Hello everyone! My apologies for the delay in updating. We had a wonderful Christmas, Grandpa was up visiting, Santa was generous and the weather was fabulous (for December in the Arctic). Shiri is down in Edmonton today with Marino for her 18 month check up. No scans, just an ultra sound and lung xray. I'm tense but confident that things are well - Shiri just looks and acts so darn healthy. We'll post as soon as we have news - I'm off to the eastern arctic, hence, may not have access to the internet for a few days.
I received sad news today. Baby Jasmine, a wonderful little girl we knew in Edmonton, died this week. Even though Jasmine's family is from Alberta, there is a Yellowknife connection and there was a fundraiser for her just before Christmas. Jasmine's mom was one of the first mothers I met on the ward, she helped induct me into the "chemo" world. My heart goes out to her tonight.
Sheila
Wednesday, December 14, 2005 11:24 PM CST
Happy holidays, everyone! Shiri continues to do remarkably well. We had the best birthday party at the pool - with many helping hands from parents of children who attended - she has had her first report card at school and seems to be doing really well, and now we are looking forward to Christmas and some time off for all of us. We remain so blessed and fortunate to have a healthy child. I hope I never ever take that for granted and never stop being grateful. So many of our friends are not as fortunate.
Here's hoping for the best Christmas yet to all of you. To our friends who continue to fight the battle, or who are facing a Christmas without their child, our prayers and thoughts are with you.
Sheila
Thursday, November 17, 2005 5:50 PM CST
Our little girl is five today! Happy happy birthday Princess Shiri!
Mom and Dad
Monday, November 7, 2005 7:42 PM CST
Clear scans!! Fifteen months of remission from cancer - I feel so remarkably lucky as a parent to be able to say those words. All tests were resoundingly positive. For me, there is, finally, a glimpse of a world beyond cancer (I almost feel as if I have to knock on wood when I say that!).
Shiri is doing so well - eagerly anticipating her fifth birthday upcoming this month, loving school, enjoying spending time with her good friends, and just moving forward confidently and with such self-assurance. We are so lucky to have her with us!
Next checkup is January 24th, 2006 and Marino is taking Shiri down. For the first time in quite a while, it won't include a catscan but will be a abdominal ultrasound and chest xray - all of which is perfectly normal at this stage. Which is exactly what we like.
Thank you all for checking in on us, for being there for us. Say a little prayer tonight for all the kids whose parents are not so lucky.
Sheila
Wednesday, October 26, 2005 10:20 PM CDT
** Shiri's kindergarden school picture **
Hello everyone - we got back late last night from a busy hospital day in Edmonton. No test results yet available but the doctors were pretty uniform in their assessment that she appears to be in remarkable good health. I was told that they have a new process for cat scan results and that all scans have to be reviewed by an oncologist first before we are called with the results, hence, that could add some delay to getting the results and to not be alarmed if we got a call from the oncologist directly. We are crossing our fingers for good results.
Normally our hospital days are pretty pleasant - Shiri loves the play and crafts area - but Shiri had a positively yucky test yesterday involving bladder function and possible urine reflux. It hurt a lot and she was very uncomfortable but it also showed that there is no structural reason for her bladder infections. She only has one kidney so the infections are a cause for concern. Since Shiri had this test yesterday, I've talked to a number of parents whose children have had the same test and it seems like many kids are sedated for this (Shiri wasn't). Hence, I'm a bit perturbed at how much discomfort Shiri had to endure and wishing I had had a better opportunity to be prepared on this particular test and to be a better advocate for her. She really is a remarkable trooper!! But she doesn't want this test ever again, she tells me.
I will post as soon as we get scan results - and thank you all so much - friends and family - for checking in on our little girl.
Sheila
Wednesday, October 5, 2005 10:04 PM CDT
Greetings from Yellowknife -
I so often start these entries by saying that Shiri is doing wonderfully - and thought tonight about what I might say that would vary from those words (the wordsmith in me) but she continues to flourish and do well. She is adapting well to french immersion kindergarden (I already see her responding instinctively in french to some questions such as "can you count") and her energy levels are sky high - she seems to skip and dance everywhere.
A week ago, it was two years since Shiri was diagnosed and all of that brought back many memories and emotions of her diagnosis and her year in treatment. And the first year "off treatment" which was, for me, a time of considerable reflection about what it all meant. Not that I arrived at any answers - except, perhaps this - I have always loved being a mother, arrived at this place later in life, but never more have I appreciated the value of having a child, and the importance of holding them close and doing everything one can to protect and nourish them, then I have since Shiri was diagnosed.
We are off to Edmonton for Shiri's 15 month off-treatment checkup. Because of the lung nodule in April, they are still sticking with a cat scan (generally, at this stage, we would alternate scans with xrays) and there are multiple other tests. However, we are also planning some major girl shopping and Shiri is quite looking forward to that.
I'll post as soon as we hear anything. Until then, your prayers are always welcome, both for Shiri and for all the other kids who battle this disease.
Sheila
Monday, September 19, 2005 11:57 PM CDT
Hello from Yellowknife! At the outset, I just have to say, don't you all agree that the above is the cutest picture of Shiri and her Dad? It was taken yesterday during the Terry Fox Run - I'm so proud of Shiri for running (and skipping) so much of the way. The weather was great, Yellowknifers came out in full force, and with generous spirit, Yellowknife came through for cancer research.
All the tv coverage over the past few days about Terry Fox, and his marathon run across Canada 25 years ago in support of cancer research, has been a form of reliving all the "cancer" memories again. It is amazing the difference that 25 years has made in the area of childhood cancer, the survival rates have improved so much, and yet we all know too many children who have lost their battle with cancer. So much needs to still be done...
Shiri is doing beautifully - we are the proud parents of a child now in kindergarten. Like everything else in life, Shiri has taken kindergarten in full stride and has just embraced her french immersion program. She lost her bus pass on the very first day of school (!!!) and is an old hand at the school routine already. She is growing up to fast but thank God, she is growing up.
Health wise, Shiri is doing well. She has had a few urinary tract infections in the last few months, with only one kidney, she is watched very very closely, but we are absolutely confident in the quality of care she is receiving. We are next in Edmonton on October 25th for a catscan and ultrasound but, if her general appearance is any indication, she should do well. Knock on wood... Never take that for granted.
God bless to all of our friends and family and, in particular, for our friends who continue to battle cancer or who deal with the loss of their child.
Sheila
Shiri went six kilometers in the run,
She is a "friend" of Terry Fox , her treatment protocol has benefited from Terry Fox Foundation Research dollars
Her online pledge site for the Terry Fox run is still open, if you wish to make a pledge in her honor ....visit
http://www.terryfoxrun.org/ENRunner/default.asp?s=1&RunnerID=20886
Marino
Tuesday, July 26, 2005 8:26 AM CDT
Good morning to our friends and family. Shiri's tests went well yeterday in Edmonton. No problems were detected with her heart and kidney function and blood work. Her cat scan will take a few days to read, and we will post as soon as we get those results, but right now, things are looking good. Whew...
Tuesday evening:
Great news! Good scan results. The nodule from her April scan (the one that scared the heck out of us because it meant a possible relapse) is still there but the radiologist's report reviewed 3 sets of scans from 2004 and indicated that, upon reflection, that nodule was present in those 2004 scans, although not as conspicuous (but still the same size ie. no larger). The report also indicates the presence of a new, small, cluster in Shiri's lungs that are believed to be blood vessels. In other words, no evidence of any disease in Shiri's lungs - her abdomen and other tests were resoundingly clear. I've decided to stop interpreting these results, take them at face value and just breath a deep breath out. I also know, from reading the websites of our friends, that when this disease hits again, it hits hard and it is almost very obvious within a short period of time. We should count our blessings ... and they are many.
Shiri is having a wonderful time with her Dad on holidays and is just one excited and happy little girl with all the fun. I'll update again as we near fall and get close to the start of school, but in the interim, life just continues as normal. Thank everyone for all your prayers and thoughts. They mean everything to us.
Sheila
Sheila
Sunday, July 17, 2005 11:52 PM CDT
Hello to friends and family from Yellowknife. No news is generally good news and that is true on this front. We have been enjoying the summer. Shiri is swimming at Small Lake above, inside pics are of Canada Day - Shiri won first prize in her age category for best decorated bike!
She has her full range of tests Monday, July 25th. Her dad is taking her down and then they will enjoy a bit of a holiday after then. I'm hoping for quick and positive results and will update as soon as we get them. In the meantime, we will continue to enjoy the wonderful weather and chance to do so much outdoors.
Sheila
Wednesday, June 29, 2005 1:39 PM CDT
Greetings from a beautiful and sunny Yellowknife. We are clearly overdue for updating this site which is almost always a sign that things are going well. As they are now. The web pictures are from Shiri's pre-school graduation last Friday - off to kindergarden in the fall! She is healthy, happy and as active as can be. Her next scan and full work-up is July 25th - which is our one year off-treatment checkup so there are extra tests such as one to monitor her heart function, in addition to the normal cat scan. I won't truly relax until Shiri's next cat scan shows no sign of any nodules but, in the meantime, she and we live life to the fullest. We'll post an update as soon as her tests as we get the information! To all our friends and family, thanks for dropping by the website and for being so supportive of Shiri.
Sheila
Wednesday, May 25, 2005 12:27 AM CDT
ALL CLEAR!!! The xray taken today shows totally clear lungs!! No sign of the nodule seen in the catscan and xray taken a month ago today. Today was just an xray - not a catscan - but all signs are that Shiri's lungs are clear and she has not relapsed. I think there is a part of me that won't fully relax until the next catscan (in July), but for now, Shiri has two very very happy and grateful parents. Words cannot express how difficult and scary this past month has been and how grateful we are to everyone for their prayers, wishes, support and for just being there during the meltdowns. Thank you so much. Thanks particularly to Dr. Young for being so so helpful to us today and for caring enough to have the xrays read right away. We have been truly blessed with wonderful health care providers in this journey. Now, we get on with the rest of our lives. :) :)
Sheila and Marino and Shiri too
Monday, May 16, 2005 1:23 PM CDT
I know many people are checking Shiri's website regularly so I thought I would update even though there is not a lot new to tell. Shiri's March 9th x-rays (from her bout with pneaumonia) were sent to the Stollery - they show a density in the approximate same location as her April 25th xray/cat scan. No measurements, however, so everything is still very inconclusive. Shiri will have an x-ray here in Yellowknife on Wednesday, May 25th. We've been told that if it shows there is something to worry about, that we would then head back to Edmonton for a full workup, including scans, and a treatment plan would be developed after that. If this is a relapse, and if it is safe to wait, we are going to try to stay here until after the weekend of June 3/4th. Shiri is in a ballet recital (tinkerbell!) and she has been working all year on her part. We would hate to disappoint her. Grandma is also coming that week for the recital and Shiri is very excited about her visit.
I'll leave you with a four year old's perspective on cancer. Mom is washing dishes while Shiri finishes her supper. Mom says to Shiri "Honey, you know we need to go for another xray, right? Shiri - "yes, Mom, I know there is a lump and it might be either 'monia' or cancer". Shiri goes on to say "I hope it is cancer". Mom - shocked but trying not to show it - "why, dear?". Shiri - "Because then I won't have to wash my hair anymore. I hate washing my hair".
Sigh.... Notwithstanding her wishes, I'm praying that this is not a relapse. Thank you all for your support and prayers.
Sheila
Wednesday, May 4, 2005 1:36 PM CDT
We received Shiri's scan and xray results. They show a nodule in her right lung which "most likely represents a new pulmonary metastasis" (a new tumour) but could also be atelectasis (from what I can discern, a form of collapsed lung caused by a number of things, including, pneumonia). Shiri has had lung problems recently, including lots of colds and a mild form of pneumonia in March. Shiri will have another xray in four weeks (and I am counting the days!). If the spot remains stable, they will watch it (and it probably is from the pneumonia). If it grows, we'll figure out what her options are.
I just have to say that I hate cancer. This is so unfair to Shiri. Thank you for your prayers. We'll post once we know one way or another.
Sheila
Wednesday, April 27, 2005 6:43 PM CDT
Hello from beautiful Salmon Arm, B.C.!! And very hot - it hit 30 C here two days ago. Shiri's checkup on Monday went well - no problems noted at all and the hospital staff were happy with how healthy Shiri looked. One caveat - we don't have the catscan results yet and likely won't for a few days or even a week or so. Having said that, I like to believe that if a problem were detected, they would see it right away and let us know. In this case, no news really is good news. I'll update once we get those formal results but, in the meantime, we are looking forward.
Thanks everyone for your messages and your support.
Sheila
Tuesday, April 26, 2005 1:46 PM CDT
Hello everyone, Shiri and Mom are now having some holiday time in BC in conjunction with Stollery visit. I suspect Mom will do a posting here very soon. As we appreciate the support of our visitors I am making a short post in the interim to announce that the evaluation indicates Shiri continues in good health. Her next evaluation will be her first annual at the end of July, although she will still continue her regime of quarterly monitoring for some time yet.
Marino (Dad)
Monday, March 28, 2005 10:23 PM CST
Happy Easter to all of our friends and family. As you can tell from the new pictures, Shiri continues to do well. Her hair is growing in curlier and darker than before - I cannot believe the mass of ringlets she has right after bath! She had a mild bout of pneumonia recently and appears to suffer from one cold after another, however, it is winter in Yellowknife and that is probably to be expected. None of it has kept her down for long and she is just remarkably healthy and happy these days - and loving and affectionate and just curious about the whole world. Four is a great age!!
We are in Edmonton April 25th for a cat scan and our nine-month off treatment check up. Each checkup gets easier but there is still stress associated with it. I'll post as soon as we get the results - which I'm confident will be clear.
Thank you to all our friends and for following Shiri's journey and for being so remarkably supportive. We felt truly blessed this Easter.
Sheila
Monday, February 21, 2005 6:56 PM CST
Shiri attended her first day of kindergarten preparation school today! Four days of playing in french in a REAL school. And her buddy Daniel was right there with her. She was pretty excited. Mom had a moment. My baby is growing up. Thank God for that!
Shiri continues to do so well in terms of her health. The usual colds but otherwise the happiest and healthiest girl you could imagine.
Check out the Stollery link below - follow it through to our children and then miracle kids and you will see a write up for Shiri last July. She was the Stollery's miracle child for that month.
Thank you all for checking up on Shiri - we remain so grateful for your support. Please keep in mind all the brave children who are struggling with cancer - it boggles my mind just how many stories there are out there.
Sheila
Saturday, February 5, 2005 10:28 PM CST
Good evening from Yellowknife - just a quick note to say hello to our friends and family who check on us so often. It goes without saying (but I'm a lawyer so just have to say it!) that we are delighted about the six month clear checkup. This checkup had enormous psychological ramifications for me. Too many children have relapsed within weeks or months after finishing their course of treatment. Shiri had so many of the negative diagnostic features - ie. lack of response to chemotherapy (it seemed that everything had to be surgically removed). unfavourable histology rather than favourable hisotolgy, advanced stage at time of diagnosis, etc...which would typically point to a higher possibilty of relapse. But six months...no relapse - that is HUGE. I'm finally allowing myself to believe that I will have a future that will include my daughter and that is such a blessing. Even though we go for checkups to Edmonton every three months for the next three years, every six months for several years thereafter, an annually until she is grown up - this one was the big one. And I consider myself to be so blessed that Shiri is healthy.
It's a good thing to feel blessed and happy about Shiri's state of health because it is otherwise COLD up here. Just when I was hoping spring might be around the corner - it was -51 with wind chill on Friday. I'm learning how to drive and had a lesson this week (it's another story about how a 44 year old woman can attain this age without ever driving!) and lost control on an ice road outside Yellowknife. Who ever would have thought that a snowbank could do so much damage? I'll continue driving. I had to laugh in a way - the driving school I'm going to teaches all of these teenagers to get their license. Here I am - a middle-aged single parent, lawyer (aka cautious) who just wants a licence so she can drive her daughter to ballet Saturday mornings - and I'm the one that gets into an accident?
But having a healthy Shiri puts it all into perspective! Thanks for checking in on us and being so supportive to us. Shiri's next cat scan is on or about April 25th in Edmonton and I'll update then.
Sheila
Tuesday, January 25, 2005 1:05 PM CST
Continuing Cancer Free :-) ,, Mom is in Inuvik on behalf of her employment - so Dad is doing a quick update to let everyone know that Shiri's diagnostics and examination confirmed Shiri continues in good health.
Shiri as is often the case cooperated well and cheerfuly with the long morning of medical investigation with only a couple of moments of crocodile tears during poke of blood draw accompanied with "I wish mommy was here" a short moment left behind to continue with crafts in oncology out patients waiting area.
Today Shiri is back to her routine, enjoying friends and activities at day care.
I am sure Mom will be doing another journal entry soon.
Thank you for your visits, support and prayers;
Marino
Wednesday, January 12, 2005 10:58 PM CST
Hi everyone and greetings from a deep freeze Yellowknife. Just a quick update - I know we have many friends and family who check regularly - to let you know that Shiri continues to do well. There have been some occasions over the past little while where she has had periods of tummy pain but nothing persistent (just usual childhood stuff??). I will be glad when her checkup on the 24th of January is behind us, hopefully with a continued clear bill of health. We'll all breath a bit easier.
In the interim, we just wait and enjoy the winter! On a positive note, the sun is beginning to come back into this dark corner of the world so there is a harbinger of warmer weather to come.
We'll update as soon as we know... Thanks for checking in on us.
Sheila
Monday, December 27, 2004 9:49 PM CST
Merry Christmas to all our family and friends! And a special thank you for everyone who has helped us so much over the past year - in countless ways, both in person, through the caringbridge network, through prayers and so many thoughtful acts of kindness that made the shadows of the last year easier to navigate. Shiri is the true beneficiary of your kindness - she remains a happy, confident, positive, joyful little girl - who just had a terrific time at Christmas. The main picture is of Ballerina Shiri on Christmas morning - studiously following a video tutorial of the five positions.
No health concerns to speak of this Christmas. What a difference from last Christmas when Shiri still had so much active cancer within her. Four weeks until her next checkup - we will update then. Shiri and I are heading out to Small Lake for new years if it stays below -40 - will try to post pictures of lots of fun outdoor activities if I can.
In the meantime, thank you all and say a prayer for those families that have been devastated by the loss of a child or those who are still battling this disease.
Sheila
Sunday, December 19, 2004 10:26 PM CST
Greetings from Yellowknife – it has been way too long since I have posted an update. As you can tell, Shiri continues to do beautifully. We are edging up to six months post-chemo – Christmas Day brings the end of our weekend dose of Septra – for which we are all grateful, leaving Shiri only reliant upon lactulose. Shiri is embracing life and we are caught up in preparations for Christmas and holidays. Our six month follow-up appointment is January 24th. Marino will be taking Shiri to Edmonton for that appointment. I know that both of us feel that if Shiri makes it past that appointment without any evidence of new disease that we will be so much more comfortable that her remission will endure. In the meantime, Shiri continues to live each day to the fullest without any trace of the last 16 months.
December also brought difficult news. On December 3rd, I received an email from Karla, Laura’s mom, titled “Laura has gone home”. We first got to know Laura in March of this year when Laura was diagnosed with Wilms and we were just starting our change in treatment protocol to that for diffuse anaplastic wilms. . Pathology results indicated that Laura’s form of Wilms was also diffuse anaplasia and both of our girls started the same treatment of in-patient chemo. Laura was just five years of age and had a smile that would melt the biggest snowbank. Her mother has allowed me to reprint here a tribute to her daughter that Karla sent to us. Shiri wanted to make very sure that Laura saw Santa Claus before she died. I’m sure she did.
Tribute to Laura
Laura Katarina Janzen was born in Olds, Alberta on June 21, 1999. She moved with her family to Holden, Alberta in April, 2001.
Laura loved to sing, especially to God. She would sing the songs of worship she learned at church, or make up her own songs. Many of you will remember the solo she sang last Christmas, dressed in her Mary costume.
Laura loved people. While attending church in Linden, Laura would find her way to the back to sit with one of the ushers. At the Good News church, Laura would find someone special to sit with while Mom played
the piano and Dad was in the sound room. Laura prayed regularly for her friends at the hospital who also have cancer. After being told that there was no treatment for her cancer, Laura’s first wish was that she could go home to be with her family.
Laura loved to talk. You never had to wonder what she was thinking about. She would keep us entertained with her comments. She talked a lot about God, often adding a comment like, “But God is bigger!”
In the months after being diagnosed with cancer in March this year, Laura matured far beyond her years. She knew the names and functions of all her medications and would always speak up when something didn’t seem right to her. Spiritual things became very clear for her. The cancer
ward is a place where the brevity of life cannot be ignored. When she knew she was going to die, she spoke often of her future with Jesus, without fear. She looked forward to meeting her sister Ingrid and Noah
and Daniel. She explained to us that lions would not be scary in heaven because God could shut their mouths, just like He did for Daniel. Her trust in God was unwavering. She had tremendous peace and contentment that could only come from God.
Laura stayed at home in the care of her family until she went to be with Jesus on December 3, 2004.
Laura’s memory will be cherished by her parents, Hank & Karla, one brother, Randy, two sisters, Jill & Kari, grandparents Peter D. & Mary Janzen of Lethbridge, Abe & Mary Warkentin of Didsbury, and numerous
aunts, uncles and cousins. Laura is predeceased by one sister, Ingrid and one cousin, Rachel Sawatzky.
Funeral services were held at the Holden Community Hall, on Monday, December 6. Honorary Pallbearers: Haley Tichonuk, Britni Allen, Shiri Casebeer MacPherson, Peter Stahl. Interment followed at Ryley Cemetery. Tofield Funeral Home entrusted with arrangements.
Memorial donations may be made to Stollery Children’s Hospital Oncology Unit.
The very best of the holiday season to all our family and friends.
Wednesday, November 17, 2004 0:04 AM CST
Shiri turns FOUR years old today! Happy birthday, my little princess! Four years ago today, you were my first born and remain my only child. Your Dad and I both thought you were a boy, and we had called you Liam for the longest time - and then out you came, a little (okay, 10 pounds, 10 ounces is not little) girl, and we were both thrilled to see you arrive. No hair, red cheeks and the biggest grin - looking just like Grampa! My life changed then, just how fundamentally, I didn't realize until last year. Your birthday party last year was huge - Mom, Dad, both grandmas, your two sisters, your godmother Shannon, auntie Sarah and Sue, your special buddy Morgan all the way from Ontario and so many friends from Edmonton, Yellowknife and afar. Last year, we were new to this journey and had no idea where the next year would take us. We are so grateful to be here with you a year later, celebrating your fourth birthday.
Shiri is doing so well. Her audiology assessment showed no hearing problems as a result of chemo. Her cough and nose drip have disappeared totally after a round of amoxcillan and nose spray. Her lung capacity is up and she proves it by wanting to run everywhere. We had an appointment with Shiri's pediatrician, Dr. Young, here in Yellowknife on Monday. We were surprised and happy to see Dr. Bella, who was one of the very first doctors that Shiri saw in Edmonton on the day she was diagnosed. Dr. Bella is doing a rotation here in Yellowknife. The circle comes around.
Now, we try to step back and all assess and deal with the impact of the last 13 1/2 months, now that Shiri is healthy. Thank you to everyone who carried us when we couldn't walk and gave us the support to carry on. Thank you for our caringbridge family and extended family of cancer parent support. It's a whole new world to me and what a world it is!
We have one VERY excited little girl who has been anxiously counting the days until she turns four (and who fervently believes that turning four means all her clothes and toys will no longer fit or be useful to a 'big girl' and that she requires many new things) and two relieved parents to have made it to this stage.
Sheila
Tuesday, October 26, 2004 0:39 AM CDT
Update: Thursday, October 28th
We have changed the webpage to move up the picture of Shiri (left) and Laura, taken on Monday. Laura also has diffuse Wilms and had a Cat scan on Monday, right after Shiri. Her mother tells us their results are not so positive. Laura's cancer has spread and there are no further treatment options available for her. As soon as her pain is under control, she will be going home to her family. I know that her family could use all your prayers right now. They have a difficult time ahead of them. She is just a beautiful little girl and we have so enjoyed getting to know Laura and her mother.
October 26th
Greetings from Yellowknife...we are back and the news continues to be positive. She remains cancer free - clear scans - the two best words a parent can hear. A very long day, lots of detail re Shiri's cough, runny nose, possible short term lung impairment from radiation/surgery/chemo... but ... clear scans. The rest we will just deal with and hope that time, some meds, and her body's natural growth helps her lungs to be just as normal as any child's. Nothing serious in the big picture and we are very relieved parents.
The front page picture is from yesterday's Kids With Cancer halloween party, the inside pictures are from yesterday and today. It was good to see old friends in the ward today. I love the picture of Shiri and Laura - it was lovely to see Laura smiling and happy today and to spend some time with her mom.
From the bottom of my heart, thank you all for your prayers and support. They truly make a difference in our lives.
YIPPIE!! Clear Scans!!
Sheila
Friday, October 22, 2004 8:30 AM CDT
It has been a while since we updated - my apologies. Bit by bit, life has been remarkably normal. We are off today for Edmonton - scans on Monday. I've decided Shiri and I deserve a treat weekend pre-scans (and warmer weather!) so we are heading down early. Shiri still has her cough (2 months now) and some reduced lung capacity but other than that, is doing remarkably well. Let's hope that the test results Monday are similarly positive! We should have an opportunity to see Shiri's friend, Laura, Monday as she is also back in the hospital.
We'll post as soon as we have results. Thank you all for checking in on us.
Sheila
Tuesday, September 28, 2004 11:21 PM CDT
It was a year ago today that our lives turned upside down, a year ago that we went to the Stanton Hospital and discovered that our daughter had a massive abdominal tumour and more tumours in her lungs. I had wanted (and actually had started some days ago) to write a long entry expressing our gratitude to everyone throughout this entire journey, starting wtih Dr. Randall, and Dr. Young, who has been a godsend to us in providing such excellent medical care this year, but it became far too emotional and difficult to do so. Please know how much every single act of kindness has meant to us in getting us through this most difficult year. There are times when we may seem to be coping quite well, but the reality is that there have are times when this year has been so difficult and your individual acts of kindness and reaching out have made a difference in our day, in allowing us to carry on and to be there in every way for our daughter. We can never adequately express to everyone how much we appreciate you carrying us when we needed to be carried and supported over the past year. The medical staff at Stanton, the staff at the Stollery, my colleagues at work and in the legal profession, our friends, and people we didn't know well - this community reached out and embraced Shiri. And we are all the better for your support. Particularly Shiri who remains emotionally unscathed while physically scarred. Most of all, I appreciate Marino. He has been there every day for Shiri, attended every appointment, provided every support to her and I, and just been an amazing father. We are better parents because of this year.
I had a flashback today to this day last year. Shiri has had a persistent cough for about a month (we all have! colds are going around Yellowknife) and a chest xray was ordered because of some rattling in her lungs. With a healthy child, they get sick. With us, we just worry... Waiting for the results, when this time, this same day, last year, we got the results of her last xray at Stanton, was a bit difficult. She's fine. It may something, maybe bronchitis, maybe the beginning of asthma, but nothing we can't handle!! The doctor noticed some "plastic" or an object in her chest and asked if there was something left behind after a surgery. We hadn't been told of anything and Shiri has had xrays up the ying-yang after her lung surgeries and then two clear scans, so it must be from her IVAD removal surgery. They are sending the xrays to the Stollery to see what it might be. Apparently, with some IVAD removals, there is sometimes residue left (although this sounded like more than residue). What is interesting, though, is how perspectives change. No tumours, thank god. Maybe a piece of plastic - gosh, well we'll just get that out of her! No big deal. We're just grateful to have a healthy and happy child and grateful for the wonderful care we have received.
Again, thank you everyone. I know that there have been so many prayers said for Shiri (particularly in Nova Scotia!), so many wishes for her recovery, so much help and support and today, one year later, after many operations, 9 months of chemo, radiation, and so many medical procedures, that we are now hopeful that she will remain healthy and just lead a normal life. We couldn't have survived this past year without your support.
With love,
Sheila (and Shiri and Marino too)
Sunday, September 19, 2004 7:51 PM CDT
Hello from a cold and snowy Yellowknife! First real snow of the season. I have been away much of the past week on business (Cambridge Bay and Deline) and Shiri has been well cared for by dad. I was able to arrange to get back today, right in time for the Terry Fox Run. Shiri was so excited and did a pretty good job running in the snow/rain for about 3 kilometres before she got tired and ended up on dad's shoulders. I look forward to next year when she will be bigger and have even more energy (and Mom too...energy that is...).
Thank you to everyone who pledged on Shiri's behalf. The money raised goes to such a worthwhile cause and it was heartwarming to see so much support in the community for cancer research.
Five weeks and one day until Shiri's next catscan...but who's counting, right? :) :) Okay, maybe we are. We'll let you all know the results when they come in.
Thanks everyone.
Sheila
Saturday, September 11, 2004 6:47 PM CDT
Happy Birthday Mom !!!!
Shiri
The Terry Fox Run is a week from Sunday (September 19th), Shiri and I are participating.
I am not very good at collecting pledges so we registered online to assist.
https://www.terryfoxrun.org/english/corporate/family/information/default.asp?s=1&CompanyID=2328 , we invite Yellowknifers to join us. If you have trouble loading the site by cut and paste, go to the Terry Fox Foundation home page and click page link to pledge to a team. The team is Shiri. Terry Fox lost a leg to cancer (Shiri a kidney) and during his treatment was impassioned by children being treated for cancer. This was the seed for the Marathon of hope, the site has the story if you are unfamiliar.
The Terry Fox Foundation funds research through the Canadian National Cancer Institute. The institute has and is involved in Wilms tumor research.
Thank you for your visits, words, letters, prayers, guest book entries - all of your support.
Marino
Thursday, September 9, 2004 8:00 PM CDT
Ms. Shiri has instructed , directed me to update a page and too announce it is Mom’s birthday on Saturday. Mom also has a busy work related stretch including court related travel to Arctic Communities next week, and has had a busy schedule over the past week as well. Shiri thought Mom would like a character cake - She also wanted me to announce age - as Shiri is impressed with the numerical similarity. I will not carry out that part of the instruction and endure Ms. Shiri’s criticism instead (she always gives huts with them). Shiri also wants a picture on the site soon of “The Girls With Hair” which will be worked on in the near future. Ms. Shiri has also spent much time discussing plans for her birthday - which looks to be dramatically different than last year - which was celebrated as a Stollery Hospital Patient at the West Edmonton Mall (Blues’ Clues Theme).
Shiri continues to do well, the majority of the time being jovial, joyous and living each day with energetic zeal (she rarely naps any more although her enthusiastic attitude produces the desire to nap in both of her parents). As an a three year old going on four , fourteen - she does have demanding moments, the rare meltdown. Her health has been pretty good with excepting a current cold (with cough), three instances of tummy ache (the kind of ache unfamiliar to her) Children do get tummy aches’ however in Shiri’s case - brings extra anxiety. She will be establishing the resource of a family doctor in a couple of weeks, and we as parents will ensure communications are maintained between Stollery Oncology, Yellowknife Stanton Hospital Pediatrics along with the family clinic.
Shiri also wanted me to post pictures of her practicing (warm up exercises) for the Terry Fox Run . She thinks she may do three kilometers as she is three, and plans to jog (run) all the way - I shall walk , and will be interesting to see how far she runs. It is often cold here that day as well. So Terry Fox pictures will come later.
The Terry Fox Run is a week from Sunday (September 19th - ten days from now), Shiri and I are participating.
I am not very good at collecting pledges so we registered online to assist.
https://www.terryfoxrun.org/english/corporate/family/information/default.asp?s=1&CompanyID=2328 , we invite Yellowknifers to join us. If you have trouble loading the site by cut and paste, go to the Terry Fox Foundation home page (http://www.terryfoxrun.org ) and click page link to pledge to a team. The team is Shiri. Terry Fox lost a leg to cancer (Shiri a kidney) and during his treatment was impassioned by children being treated for cancer. This was the seed for the Marathon of hope, the site has the story if you are unfamiliar.
The Terry Fox Foundation funds research through the Canadian National Cancer Institute. The institute has and is involved in Wilms tumor research.
Thank you for your visits, words, letters, prayers, guest book entries - all of your support.
Marino
Sunday, September 5, 2004 2:18 PM CDT
Greetings from Yellowknife. New pics posted - the front page and two on the inside are from the weekend of August 15th out at Small Lake. I particularly love the one of Shiri fishing in the sunset (with her new Dora rod). The main page is of Shiri taking photos - I bought one of those fling cameras and gave it to her. It will be interesting to see what develops - a view of the world through a child's eyes.
Life is gradually (albeit very slowly) getting back to normal. We had a bit of a scare this week with Shiri having a tummy ache. I know children have tummy aches but... we (Marino and I) are both a bit more sensitive to each ache and pain then we would have been a year ago. But it seems to have abated and she is back to her normal, happy and active self. I will be awfully glad to have our next cat scan behind us - I just really get nervous about what is going on in her little body.
Gotta run - birthday party to go to today! Thanks for checking in on us and for all your support and prayers over the past 11 months.
Sheila
Thursday, August 26, 2004 1:43 PM CDT
Shiri continues to do beautifully. Her incision from the IVAD removal looks to be healing nicely (still covered in steri-strips so we cannot really tell, but she is not at all uncomfortable). Her hair is growing quite fast - it's still a little early to tell but it looks like it might be coming in darker than it was pre-diagnosis. Almost brown instead of blonde. Time will tell, it's still very early yet...
She is still on septra and lactulose. We are trying to wean her off lactulose very slowly with a view to increasing the fibre in her diet. All in all, life for her is mostly returning to normal and she is enjoying each day. Our next scan is scheduled for October 25th. I'll be happy to have that one successfully behind us. Every day is a victory with this disease.
The above pic is from last Saturday at the Edmonton Airport. I will post some wonderful pics from Small Lake when I have time soon. Summer is waning here and there was frost this morning. Must enjoy the few days left!
Sheila
Saturday, August 21, 2004 11:50 AM CDT
Shiri's IVAD removal went smoothly - no problems at all. Her dad tells me Shiri was disappointed that she wasn't given hospital pj's and a hospital room to recover in - her past experiences with surgeries have all entailed her waking up in the ward with her own room. She didn't quite get the concept of day surgery. :)
She and her Dad spent four hours almost right after the surgery playing at the Fringe Festival in Edmonton - lots of children's activities, face painting, etc... When I talked to her last night (well after her bedtime), she was still raring to go and showed no adverse signs from the early morning surgery. Kids are just amazing!
She's home today. Yippie.
Sheila
Tuesday, August 17, 2004 11:32 PM MST
A warm hello to all our friends and family who check on us so regularly. We love your visits. Shiri and I have just come back from a simply wonderful weekend at magical Small Lake. Last summer, Shiri and I spent a lot of time out there visiting our friends who have cabins on the lake. If we are not at one cabin, we are at the other (we are so lucky!). It truly is a magical place where children can just be kids and adults can get away from the computer, phone, and day to day chores...and just have fun watching the children so enjoy themselves. If pictures have not been posted of Shiri at Small Lake by the time you read this, they will soon. For me, our time out at Small Lake just captures the very best of northern summers, friendship and fun. I loved watching Shiri with the other children - she is losing her timidness and getting back into just being a normal kid who isn't afraid to take some chances and get some bruises.
Health wise, Shiri is doing so well. Her peach fuzz is getting more noticeable by the day although she is a long way away from having any significant hair growth. Her appetite is tremendous (you would think she is on steroids!) and her energy level is higher then ever. She and her dad are going down to Edmonton Thursday night for surgery on Friday to remove her IVAD. One more surgery but I will be so glad to see that visible reminder of cancer gone. Not that there are not still the invisible reminders of cancer, the worries about relapse, the odd jarring to hear a three year old talk matter of factly about cancer and chemo, the knowledge that other children are still fighting this battle...
Shiri's roommate at the Stollery, Laura, continues to fight her battle and has just been readmitted for difficulties caused by her feeding tube. This is only a few days after having been discharged after her new chemo treatment started after her relapse. There is not a day that goes by that I don't think of Laura and her mom and pray for her to get through this.
We'll post an update on the IVAD removal - wow, we are almost 11 months into this and, knock on wood, will stay cancer free! Every month that goes by represents another victory.
Sheila
Wednesday, August 4, 2004 10:43 PM CDT
We have peach fuzz! Just a light dusting, but Shiri is delighted - she wants hair so she can wear barrettes again :)
And Mom's and Dad's hair is also growing back nicely. Can't wait to get back into hair baubles as well :)
The front page photo is of Shiri and her friend Laura at the Stollery last March or early April. Laura has relapsed with Wilms and her family could use your thoughts and prayers.
Sheila
Friday, July 30, 2004 10:19 PM CDT
Hello from a chilly Yellowknife - it feels as if fall is in the air up here. Shiri continues to do well. Loads of energy and just as happy and obstinate as only a three year old can be. We consider ourselves so blessed to have come this far with so few side effects from this year. She continues to grapple with "poop" issues and we have finally found the right dose of lactulose to deal with that - a happy balance between constipation and diarrhea (sorry about mentioning those issues, but poop is always a parenting issue and never more so than with a kid on chemo). She has also developed an intolerance to milk (my milk loving baby!) For the past few months, her bowel issues masked (or were caused by) a growing intolerance to milk. Once we cut out milk, she has been doing much better. I finally knew this for sure when we were last down for a cat scan - she hadn't eaten much supper and because she was NPO after midnight and wouldn't be able to eat or drink, I gave her a bottle at night. Big mistake. She was up all night with tummy pains. A quick way to give up her nighttime bottle! Bless her, she has tolerated that with her usual good humour and common sense, as she has so many other of the procedures throughout this journey.
Shiri gets her IVAD out in Edmonton in three weeks. We went today for a physical which confirmed she is doing well. Of course, now that the dust has settled a wee bit, I am looking to long term side effects (none of which are remotely considered when deciding course of treatment - you just do what you must to keep your child alive) and have all sorts of questions from reading and following some of the struggles of other children. I remember having all of the side effects described to us, but they just seemed so irrelevant and now, of course, they take on a new reality. Shiri's doctor, bless him, was not only able to put my mind at ease on a number of concerns but took them seriously as well.
I have so many people to thank for helping us all in the last 10 months. So many letters and notes to write. As we are settling back to our routine, it still seems unreal and lacking in the stability that we had previously enjoyed. Please know how much we all appreciate every word of encouragement and support, every gift for Shiri, every donation made in her name, and every prayer said. Right now, we (I mostly - not Shiri!) am still adjusting and dealing with the events of the last year. There are days when this "cancer world" continues to dominate and prevent us from moving forward, as grateful as I am that Shiri is now "cancer free". This week, our friend Laura from the Stollery, Shiri's roommate and friend, relapsed with Wilms tumours in her lungs, abdomen and liver. She was diagnosed months after Shiri and her relapse has been difficult for her parents, siblings and for us, knowing what a beautiful blond haired little girl she is. The picture above is of Shiri and Laura, taken in early April. So, for all the happiness with Shiri being cancer free, there are way too many sad stories and children still fighting this disease. It's going to take a while for anything to get back to normal, if it ever does. In the meantime, we are going to enjoy this long weekend and try out the new park a few blocks from us!
Thank you for checking on us and for thinking of Shiri.
Sheila
Tuesday, July 20, 2004 0:18 AM CDT
***Picture from Shiri enjoying the Yellowknife airshow above.
Just back from a whirlwind trip to Edmonton and the news is great - all the scans and xrays came back clear!! God bless the radiologist who took the time today to read all the results and give a call with the verbal results. Shiri did beautifully, even with being NPO (no food/fluids) from midnight to noonhour. Her counts are rebounding and her energy levels are sky high. Happy Shiri. And very happy parents.
Shiri's IVAD comes out August 20th and we are next down for our first off-treatment quarterly scans around October 21st. There is still a long way to go - relapse rates are much higher in the first 18 months or so - but, for tonight and for now, we will just enjoy the good news and getting back our lives.
The front picture is off Shiri at the YK airport - with her new Shrek ball - my cousin Jen (and as Shiri points out "her cousin too") and her fiancee had dropped by Larga when we were last there and just missed us. The ball and other gifts are from Rob's grade six class in Edmonton. I just have to let them know how very happy she was to receive it. Even though mom had to confiscate the ball at one point during our airline journey when she got a bit to wild at throwing it. :) :)
Sheila
Wednesday, July 14, 2004 9:40 PM CDT
Good evening to friends and family - another HOT night in Yellowknife (funny when 20C feels hot but that YK...or me). A quick update - Shiri's end of treatment cat scan and ultrasound have been moved to July 19th (next Monday) so we are heading to Edmonton Monday night. I'll be going down with Shiri on this trip. On August 20th, Shiri is scheduled (subject to good results) to have her IVAD taken out and Marino will be with Shiri on that trip.
We've been told that the results of the scans will take a few days (no surprise there - we've learned a lot on this journey) but sometimes if there is a concern, that they try to let the oncologist know right away. So, being positive, I'm going to assume that if we go down, have the tests, and come right back without a phone call, that all will be fine. At least I'm trying to convince myself of that.
In the meantime, Shiri continues to do beautifully. Her counts are starting to rebound after the usual dip last week post-chemo. She is developing quite the personality lately - as well as being her usual happy and bubbly self, she is getting awfully stubborn and independent and definitely wants to do things her own way. She is perfecting the sulking stance (albeit not frequently used) and all in all, it is nice to be challenged by something as normal as typical childhood development (although none of childhood development is normal in my experience - I'm definitely learning on the job).
We'll update as soon as we get results next week. In the meantime, our continued thanks go out to people who continue to be so supportive of us as we regain some sense of "new normal" and, in particular, to those parents who have been so supportive and helpful who have gone through their own childhood cancer battles.
Sheila
PS - I learned today that a young girl on 4E3 who also had Wilms passed away a few days ago. Tonight, by happenstance (after the above update), I came across her website (okay, I was researching Wilms and up stumbled across it - it's what we cancer parents do - research). Alix was diagnosed less than two years ago, favourable histology, and relapsed after being in remission for three months. We saw Alix frequently over the last year. She joins Kaelin of our ward, also with Wilms, who passed away last month. It's all so hard to understand. And to put into context in dealing with one's child. Especially when there is a sense of normalcy developing. I'm sure there will be a day when cancer, sick children and medical studies are not a part of my life and I do look forward to that. But my heart goes out to all the parents I have known who have lost children.
Friday, July 9, 2004 10:58 PM CDT
Good evening from a HOT Yellowknife! It is a sultry evening here, as it has been for the last week, and the living is easy (okay, I'm still dealing with chaos from coming home - but at least it's slower chaos!). Shiri is doing well. She had a rough time after her last chemo and was sick quite a bit - for us, that was unusual (and not so, for many chemo parents). She has evened out from that - thanks to Kathy at the Medical Day Ward at our hospital who just though a shot of Zofran and some hydration through her IVAD was in order (and Dr. Young who has, throughout this terrible journey, been a godsend to our family) and bam, lively Shiri back with no nausea.
It has only been two weeks tonight since our last chemo - when I get hard on myself for the chores at home, and tasks at work, left undone, I just remember that short time frame. It will still take time to get back to "normal" life. And, in the meantime, there are still the remaining issues from treatment to deal with. Shiri is having a terrible time dealing with (and forgive me Shiri for making this public) pooping. We go back and forth between constipation and dirrahea. The proper balance of lactulose (a laxative) remains a total mystery. I just look forward to the day when all of the medicine (ie. chemo aka necessary poison) in her body is cleared out and then we can deal with these type of issues in a normal fashion. Until then, gas and bathroom issues are the only side effects we deal with. Which, in the larger scheme of things, is pretty good.
Marino's daughter, and Shiri's beautiful sister, Jessi, is on the front page of the website with Shiri. What a wonderful picture to show the happiness of the summer days in Yellowknife. We remain so grateful to family and friends for their help and support. Even now, when things should be leveling out a bit, we find that there is still that need. While we are beyond the moon with respect to where Shiri is at (ie. cancer free), I know that I'm now only starting to deal with the last year and all that is has meant. Just when I should be jumping up and down - and yet, for me, it is like coming to the end of a long exam period and just crashing. Recovery takes a while. On all fronts.
We're next down for an end of treatment scan on July 21st and will post the results as soon as we know. And then, God, friends and family willing, we will be cancer free and on a three month routine. Thank you again. And thank everyone who contributed to making me the bald lawyer I am today :) especially Gerri and Mike who shaved their heads with us (no hair is actually very cool - we should try this more).
Sheila
Thursday, July 1, 2004 1:00 AM CDT
Happy Canada Day !!! A year ago - we watched the Canada Day Parade oblivious to the cancer growing in Shiri’s body - today we gather for the parade again - with a remarkable journey in between.... Cancer Free.
We do not know the results of Head Shave fund-raising on Raven Mad Daze - will let you know as soon as the information is available. Thank you for all those who supported us, and also the moral support, cheerleaders in the crowd.
Shiri will again be on tv, featured in the medical watch segment of CFRN news (CTV Edmonton) on July 12 (six p.m newscast) . For those with Bell Express Vu, it is channel 232.
Shiri has been doing well, albeit she had some bouts of nausea (resulting in vomiting) last Friday through to Monday , however has improved. She gets her blood work done on Mondays, and thus far her counts have been good. She is attending daycare, and will likely soon be attending full time. She has adapted and adjusted to the return of daily living much better than I. She embraces the fluid of flow of living in two homes and separate parents with the same zeal and enthusiasm as she displayed through the journey of her illness.
She goes to the Stollery Hospital in Edmonton for diagnostic evaluation on or about July 21, and will continue to do so every three months (third week) for the next three years. Sometime after July 21, she will have her IVAD (central port) removed, we still need to pick a date. Her immune system will remain compromised from chemotherapy (and radiation) for the next six months.
We will be printing off all the pages from this site including the guest book to be bound into a book for Shiri (an archival keepsake), the book will include printed off profiles of her medical team from the inter - net, diagnostic reports and so on. I know there are many returning visitors that have never signed the guest book. I have met some on the street. The support, visits of the anonymous people are significant, we welcome your signing still... .
For Ms. Sheila and I - the past nine months (especially the first six) has been a small (bubble like) world with very short horizons. We are grateful and blessed to have this outcome, “Cancer Free” and thank all of you for your prayers, messages, well wishes, and support. Thank you Ms. Sheila - for making it easy to be Dad - Thank you Shiri - for being the joyous spirit, and special little girl that you are. Thank you to the special voices at the other end of the telephone,(and email )- helping me “keep on keeping on”.
It is quite an adjustment to move into a greater sphere considering bigger time frames. Sheila returned to work at the first of March, and I am just now beginning to focus on getting employment, sustenance.
The updates on this page will be less frequent, (and continued to be authored by Mom) and I will continue to rotate pictures although less frequently as well. More than three hundred pictures have been rotated on this page over these past months - and only a small portion of visual record.
I will build and additional website for Shiri and link it to these pages as soon as I find some skills to assist me. To me, our experience - Shiri’s experience “ ought not to be wasted on us”. I want to share some of the words of Shiri, the anecdotes, what we have learned of the spirit of living, love, care and children. Jessi utilized some of my pictures, Sheila’s pictures, and her pictures, for a sideshow of Shiri’s journey in a school media project in the later part of March. I would like to share that production on web pages. I have learned more about cancer, cancer treatment, medical care than I ever wanted to know. I have re-learned about the fragility of life, of the power of love, the human spirit and the teachings of a child. Ms. Shiri has given me more in love, attitude, wisdom in her short life than I can even begin to pass on, or articulate. She is a blessing , and an amazing child. Yes - she is three, a child - yet has a perspective and attitude not demonstrated by many adults or children. After her first surgery in October , she was angry for about three days, there was a couple days of melancholy after her second in December; there were a couple of “melt-downs” here and there, a temper tantrum or two, but for the most part she embraced each day with wide arms and joyous spirit .. determined, positive .. deep resolve. .. in a corner of the world surrounded by grief, sadness .. intensity. Five major surgeries, radiation and months of chemotherapy, countless scans, x-rays and pokes she took in stride as if an ordinary common experience. Toddlers are famous for “why”, and Shiri no exception - yet she never demanded to know why she had cancer, .. She had a mature acceptance of her challenge, her plight that inspired me, even as a parent.
Thank you again, to all of you ... ,,especially if you have read this far.... I shall relinquish the journal entries to Ms. Sheila ..
Marino
Wednesday, June 30, 2004 10:51 PM EDT
A belated hello to everyone from sunny Yellowknife! Time has flown by too quickly. We came home on Thursday evening, Shiri was immediately sick post-chemo (for the first time in months), stayed with Dad Friday during the day, to the "head shave" Friday night, and continued Shiri sickness all Friday through to Monday (while we were out visiting friends at cabins at wonderful Small Lake near Yellowknife). Monday morning was her first post-chemo blood draw and because she had pretty continously been vomiting since we returned back to Yellowknife Thursday night (and we were both worried about her fluid loss over four days), our pediatrician was so good and saw Shiri right away and we used the opporunity of her IVAD being accessed for blood to give her some zofran through her port as well as hydration for about an hour. One shot of zofran (which she vomits up when taken orally but tolerates well through her IVAD - go figure) and she has rebounded beautifully since then.
THANK YOU to everyone who supported us through the head shave event. All the money raised will go dealing with cancer and, as a "cancer" parent, and so new to this whole world, I know only too well how important research and dollars are in helping our kids. I had my "vanity" purchase of a wig and today, for the first time since our return Thursday evening, had time to try it on and there was simply too much hair!! I think I will go the GI Jane route hereafter - as Savannah's mom said in her guestbook entry, it helps to make our kids feel not so alone and different.
Throughout the last year, I've been honoured to meet Savannah's mom, Lowri's mom (Harri - I explained the other night to a friend that you were not a guy and just how important you were to us Wilms parents), Brock's mom, Mason's mom and especially Martine's mom, Marianne. They are all the mothers of angels who are now taking care of each other and who have provided immeasureable support to me, and so many other Wilms parents, throughout this journey. With the exception of Lowri, who became an angel before Shiri started her journey with Wilms (and whose journal I first read in those very early and dark days), each parent has endured the burden and pain of losing a child during the past nine months. Yet throughout their grief, they have taken time to help, educate and console other parents, including me. Words cannot express my thanks to all of the parents who struggle with their own grief, and those parents whose children still battle this disease (and there are so many and they have been so supportive), for their help to us during our journey. It simply amazes me that a parent who is (must still be) grieving the loss of a child takes time to post an encouraging message on Shiri's guestbook. THANK YOU ALL.
Tomorrow is Canada Day and and a national holiday. We have just had a national election here and there has been a lot of talk about health care. As I sign off, and we wish everyone a happy holiday, I am just glad to live in a country where there is so much accessibility to health care and in a territory where our daughter has been treated so amazingly well. I am grateful and we all have a lot to celebrate. And some day soon, I will actually unpack, deal with the chaos that is my house and office, and get back to normal! We still have a way to go but we are on our way.
Sheila
Thursday, June 24, 2004 4:01 PM CDT
We are finished chemo treatments!!! The last three days flew by, helped by generous naps in the afternoon to compensate for sleepless nights while Shiri hydrates during chemo. She did beautifully - was only sick once - and we had a wonderful "end of chemo" party at the hospital today. There are mixed emotions with the end of treatment. Chemo has been a bit of a lifeline, ensuring the cancer doesn't come back, and now it is all up to her little body. The staff has been remarkable, and the families we have met have been inspirational. Our journey has been easier than many parents and we consider ourselves to have been very blessed in many many ways.
Head shave tomorrow and our next scan is July 21st, and then quarterly thereafter for three years and then additional monitoring for a further two years. All we can do now is live for today and pray like crazy that she remains as happy and healthy as she is today.
Off to YK tonight. Yippie!
Sheila
Sunday, June 20, 2004 5:37 PM CDT
Greetings from a very hot and sunny Yellowknife and happy father's day to all the dads out there! I didn't want the last journal entry to go into history because it was such a special entry for us but time marches on...and we have great news. Shiri's counted rebounded so well this week that on Thursday we were told we could finish up Shiri's chemo treatments this upcoming week instead of waiting for June 28th! Her counts were amazing!!! We head to Edmonton tomorrow morning for her LAST 3 day hospital chemo stay. End of chemo party coming up :) :) :) We are back in Yellowknife Thursday night and Friday's fundraising event (Cops for Cancer head shave) will be a true celebration for all of us. For so long, it seemed that we were mired in this dark journey and felt that it would never end - now it is all happening so fast. In four days, we will be finished with chemo treatments forever (God willing). A month following, Shiri's IVAD will be removed (day surgery) and she will have her last cat scan before we go onto the follow-up regime which, as far as we know, entails cat scans either every two or three months. Normally, it is every three months but I read somewhere that the presence of nephroblastomatosis in a kidney (as was in her right kidney) entails more rigorous followup becuase it is a precurser to cancer.
A friend asked yesterday what the long term side effects of only having one kidney were and I had this blank look on my face. I honestly didn't know. For so long, we have just been focused on decision-making to save Shiri's life - there really is no choice but to remove a kidney, go through radiation etc...but now we move onto this new chapter and it's time to start thinking about long term issues instead of just dealing with immediate issues. What a pleasureable place to be!
Again, we thank everyone for their support. The number of people in Yellowknife and beyond who have cheered this weeks news has been nothing short of heartwarming and soul affirming.
Sheila
Tuesday, June 15, 2004 11:01 AM CDT
CLEAR SCANS! Such simple words, but they carry such weight. The power to cut through hours of tears, of worries, of fears about the future and to give us hope that there will be a future. For the first time since Shiri was diagnosed on September 29th, she is cancer free!! The scans weren't even ambiguous - lots of times, with the amount of surgeries that Shiri has had, scar tissue can be difficult to distinguish from tumour growth. Not here. No evidence of tumour recurrence nor metastatic disease!!!! There are no words to convey what this means to us so I won't even try. Except to say from the bottom of my heart, thanks to all of our friends and family for their prayers and support to all of us, and a special thank you to all of the Wilms parents out there who helped us so much on this journey. We still have a long way to go, but clear scans are a wonderful way to start the road to recovery. THANK YOU, THANK YOU, THANK YOU.
Sheila (and Marino and Shiri too).
Sunday, June 13, 2004 12:31 AM CDT
Just a quick update to say that we still do not have the cat scan results yet. Waiting is not a lot of fun. I'm hoping that we will get them tomorrow and will phone the oncology unit to check on the status of the results.
Shiri is doing beautifully. Counts are still pretty good (thanks to GCSF) and apart from some tummy problems (constipation/diarrhea is such a huge issue for kids on chemo) she is one happy and active little girl.
Will update soon. Thanks for checking in on us and have a wonderful Sunday!
Sheila
Tuesday, June 8, 2004 11:25 PM CDT
Good evening from Yellowknife. We all got back home last night to late evening sunshine. It was a rush to make the plane after the transfusion but we're all happy to be home. No cat scan results before we left, unfortunately, but hopefully within the next few days, we'll know better about what's inside (or hopefully, not inside) Shiri. We started GCSF again today - our last round of needles, thank goodness!! I hate giving them almost as much as Shiri dislikes getting them.
We'll post as soon as we have the results. We're back in Edmonton June 28th for what we fervently hope will be the last chemo session she'll ever have to endure.
Thank you all for checking in on us. Your support and messages mean so much to us.
Sheila
Monday, June 7, 2004 1:27 PM CDT
Hello to everyone - we have just finished our last five day chemo cycle!! It went incredibly well - we learned that if Shiri drinks enough during the day, we can be "unhooked" for playtime outside of the hospital - of which we did a lot. The time just flew. That and the telethon which was just a wonderful experience.
We're still in the hospital - waiting for a blood transfusion before we are discharged. This round of chemo makes Shiri's counts drop so dramatically that the transfusion is a bit of a preemptive measure. A transfusion takes three hours to it will be touch and go as to whether we are discharged in time for the evening flight back to Yellowknife.
No scan results yet. I'm haunting the hallways looking for an oncologist to grab to see if there is any way we can get the results today. :) Normally, it takes a few days to type the reports, but I'd be happy with a quick verbal report at this stage.
Back to Shiri and my quest. See you all in Yellowknife and thanks again for all your support. One more chemo cycle to go!!!!!
Sheila
Thursday, June 3, 2004 3:15 PM CDT
Greetings from the Stollery - a very quick entry as Shiri is sleeping and I hate to leave her for long. We were admitted yesterday, one night of chemo down, four to go! Long nights here. :-/ Marino is in Ontario at a board meeting so we're on our own until Sunday which leaves limited time for me to get out on my own, catch up on email, etc... No cat scan yet - probably tomorrow. We're hoping to have the results before we leave on Monday but don't know if that will be possible.
Tomorrow night is the relay for life in Yellowknife - we're doing our own version of the relay here at the Stollery but you will be in our hearts and thoughts on Friday and Saturday. Hope the mosquitoes haven't come out yet!
Sheila
POST SCRIPT , Contrast CT Scan was done on Friday - and went well ..results will be a while most likely.
On Sunday, Shiri will be interviewed (and Mom) between two o'clock and three o'clock in the afternoon as part of Stollery Foundation Telethon on CFRN, that is channel 232 for those with access to Bell Express Vu
Tuesday, June 1, 2004 5:30 AM MDT
Good morning from Yellowknife!! It has been a while since we updated which, happily, means that things are relatively normal and busy in our lives. Shiri is doing wonderfully (in looking back, I realize that I'm always saying that - but it is just true - we are so fortunate in that she has had very few complications from this massive medical regime and that she bounces back so quickly). Her counts dipped last week, as expected, but rebounded well yesterday which means we can go for chemo starting tomorrow. She has spent the last few weeks enjoying daycare (part of the time) and just hanging out with her friends and mom and dad. Energy to spare!
We fly to Edmonton tonight to avoid having to get her up at 5:00 a.m. tomorrow to fly to Edmonton. Our chemo will be a 5 night hospital stay this time and her chemo cocktail includes Etopiside (VP-16) which is the strongest chemo drug she takes. Because of her lung surgeries, it has been a while since she has had Etopiside which means that she is sprouting a lot of peach fuzz these days...I suspect that may go on this round as Etopiside was the only chemo drug which caused her to lose her hair.
This trip also includes a cat scan and abdominal ultrasound. Needless to say, we are anxious and nervous about the scans – these are the first tests since her double lung surgeries and we are just praying that they show Shiri to be cancer free. We don’t know the timings of the tests – they are usually done on an “as available” basis given that we are in the hospital. As soon as we know the results, we’ll post.
Cancer research and fundraising – two main events are upcoming. Before I give details, I just really want to urge people to think about supporting events which raise funds for cancer research and care. There have been so many developments in the area of childhood cancer – 14 years ago, the chemo protocol for Wilms was 18 months of chemo rather than the standard now of 6 months. Drugs have changed and are more effective. The statistics with respect to children’s cancer deaths have dropped significantly in 20 years – more and more children survive cancer and go on to live normal lives. Incredible improvements have been made in treating side effects from chemotherapy – our oncologist was telling us that Zofran has been the most significant drug in cancer treatment in the last decade. Before Zofran became widely available, children on chemotherapy were constantly nauseous and almost comatose from the effects of chemo. Today, children can get chemo and barely skip a beat. But still, many children die. In our caringbridge family of friends, and indeed even right at the Stollery in Edmonton, we have met these children and their families. There remains so many different areas that need to be explored and researched.
So, onto the events. This Friday, the Canadian Cancer Society is having an all night walk/running relay for cancer in Yellowknife. We know two special teams that are entering the event. A number of people that I work with, both in my office and in the legal profession, are organizing a team called “Team Shiri” and are madly raising money for the relay. The team captain is Melanie Smith and she can be contacted at 867-669-5500 or msmith@lawsonlundell.com. A second team, called Library on Legs, is also participating. One team member on the “Library on Legs” team is Deborah Bruser – she and her family have helped us so much in this journey. Deborah’s daughter had Wilms in 1990, quite advanced, and is now a happy and active young university student. They have provided us with so much education on Wilms and on dealing with a critically ill child, and just knowing that their daughter survived has given me hope that one day this will all just be a very dark and difficult period in my life which is in the past. Pledges can be made through Deborah Bruser at 867-920-5642. Because the relay starts Friday night at 7:00 p.m., pledges would be appreciated up to noon on Friday.
Bear in mind that this is Yellowknife and it has been a COLD spring. The brave souls are spending the whole night out on the field, going round and round, and all for cancer! I was telling them both that we will be doing the same thing – well, staying up and going for endless rounds to the bathroom – these chemo stays are tough on sleep!
The second fundraiser is the one that Marino and I are participating in – Cops for Cancer and the Canadian Cancer Society are organizing a head shave for Raven Mad Daze on June 25th. I cannot believe that I’m actually going to shave my head – I think I must be mad – but it is for a great cause. I’ll elaborate more on this as the event gets closer but the CCS office here in Yellowknife has kindly offered to facilitate the taking of donations for us as we are largely away on chemo treatments in the lead up to this event. The contact information is in Marino’s journal entry in the journal history.
Anyway, this a long entry and I have packing etc… to do before I head into the office and before we fly out. And Shiri will be awake shortly! Take care all and thank you so much for checking in on our little girl.
Sheila
Tuesday, May 25, 2004 10:17 PM CDT
Hello Everyone, Shiri continues to do fairly well with good BP and blood counts (although today's counts were a bit lower). She attended Day Care again today and hope to continue until our return to Edmonton for diagnostics and chemo next Wednesday.
The subsquent and last chemo treatment near the end of June is being adjusted to allow Shiri to attend our Solstice Celebrations. In support of Shiri, and Cancer Research /Treatment, Dad and Mom will be having their heads shaved for Cancer at seven o'clock p.m. during Raven Mad Daze on June 25, 2004 on Franklin Avenue Stage in front of Vixen Hair. Shiri will be assisting with Vixen Stylist Volunteers. We look forward to our Yellowknifer friends cheering on the street. Pledges can be made directly to:
Canadian Cancer Society - Alberta/N.W.T. Division
2nd Floor, Graham Bromley Building
5016 - 50th Avenue
Box 2007
Yellowknife, NT X1A 2P5
(867)920-4428
Marino
Sunday, May 23, 2004 12:04 AM CDT
Head Shave for Cancer Supporting the Canadian Cancer Society. Cops for Cancer Head Shave event is held each year in Yellowknife during Raven Mad Daze in conjunction with Solstice Celebrations. http://www.cancer.ca/ccs/internet/frontdoor/0,,3225___langId-en,00.html
In 2003, it was a significant event for Shiri along with balance of street festivities.
This year, Shiri is practising with her clippers to be part of the event and shave Dad's head and Mom's head. As it is anticpated her chemotherapy will conclude at the end of the month - we can all re-grow our hair together :-))
It is also one of our ways of expressing appreciation to Cancer research, treatment development as Shiri has benefited from.
Shiri's chemotherapy schedule as been adjusted to allow her to attend this event. We shall keep you posted to Shiri's progress, health and this event.
She will be in Edmonton June 2 - 6 for her next treatment and diagnostics.
Marino
Tuesday, May 18, 2004 9:56 PM CDT
Hello to all our friends and family. We are back in Yellowknife and as settled in as we get these days! Shiri is doing beautifully - great counts yesterday (the chemo likely won't kick in in terms of counts for a few more days). She has a ton of energy and, as is evidenced by the pictures, is just a really active and happy girl. Her scars from lung surgery are even healing nicely. She had a full day at daycare today - only, I believe, the second full day in almost eight months and, apart from some separation anxiety leaving Dad, enjoyed herself.
We're back in Edmonton for chemo and scans June 2nd and will update as soon as we have the scan results. We are getting so close to the end, I hope, but there is still a lot of apprehension surrounding scans.
Take care all and enjoy spring --- or what passes for it here in Yellowknife. The temperature has dipped and is hovering around the 0 mark (for our American friends, that's 32F). Spring gardens are a while away for us here in Yellowknife. :)
Sheila
Friday, May 14, 2004 10:44 PM CDT
Good evening from Larga in Edmonton - we were sprung today and are so happy to be out of hospital. We've had a quiet day, largely dominated by a long nap for both Shiri and I and then, tonight, Shiri's cake. You probably cannot see the writing on the cake but it reads "End of Surgeries - Well Done Shiri". Shiri's chosen words :)
Back to Yellowknife tomorrow night and then the usual course of work, blood counts, and just ordinary life until our return on June 2nd.
Here's hoping we bring some of Edmonton's warm weather north.
Sheila
May 17th - oops - cake reads "No more surgeries!" - not end of surgeries. Home to Yellowknife and we did bring the warm weather home with us!
Thursday, May 13, 2004 11:36 AM CDT
Good morning to our friends and family. I had forgotten to update and let you all know that we were admitted on Tuesday and have just finished 2 days (nights) of chemo. One more to go and we should be out of here tomorrow. I had almost forgotten (like childbirth) just how exhausting chemo nights are in the hospital. Given the amount of hydration Shiri gets to flush the chemo out of her bladder, we are up at least every hour throughout the night. Amazingly enough, Shiri is in great spirits during the day, playing at the Beach while I have considerably less energy. :) Everything continues to look great for Shiri -home to Yellowknife Saturday and two more chemo trips to go.
Thank you all for checking in on us. It means a lot to us to know how much support Shiri has out there.
Sheila
Tuesday, May 11, 2004 4:01 PM CDT
Hello everyone! We were discharged on Sunday (wonderful Mother's Day present) and enjoyed our two days "out". Shiri's lung seems to be reinflating on its own and her discomfort from surgery eases every day. We are presently awaiting word as to whether Shiri's counts are high enough to allow her to be admitted today for her three day round of chemo. If they are, we will do chemo and get sprung late Friday which means we can go home on Saturday! After almost three weeks away, a day at home before the work week starts would be beautiful. Imagine, time to actually do laundry and unpack :) In the meantime, Shiri's spirits and health are high. Our ice cream "end of surgery" party scheduled for tonight at Larga will be postponed to Friday as this early admission is a bit unexpected.
Sheila
Saturday, May 8, 2004 1:03 PM CDT
Greetings from Edmonton (and a considerably warmer day than in Yellowknife!). Shiri is doing so well. She had her chest tube taken out yesterday (not fun) and is more mobile. One less tube to contend with in our wanderings. An xray showed her lung had partially collapsed so they are watching her fairly closely to see if it will reinflate on its own. We are negotiating for terms of discharge. Her surgeon says if all goes well, discharge Monday wherein I reminded him tomorrow was Mother's Day and noone should be in the hospital on that day! In the meantime, Shiri's sister, Reasha, is here visiting from BC and Shiri is enjoying learning how to play the guitar.
Our meeting with Shiri's oncologist was good. Verbal path results were back for her left lung. All three tumours in both lungs were Wilms but there was no evidence of anaplastic cells. Which is great. When Shiri's diagnosis changed from favourable histology to unfavourable, diffuse anaplasia, it was because of the presence of anaplastic cells in her left kidney. The lack of anaplastic cells in her lungs is positive - they either disappeared with chemo/radiation or were never there in the first place. The remaining tumours are still Wilms cancer, however, they were primarily stromal cells (connective tissue cells) which would not have disappeared anyway with chemo/radiation. Hence the need for surgery. In a nutshell, the tumours were still cancer cells just not the really bad ones. All of this means her prognosis is much better. No guarantees but I can now start to imagine a world that is not strictly dominated by cancer and darkness and fear of losing a child.
We also discussed the timetables for finishing up and we are on track for ending chemo at the end of June and having her IVAD removed about a month later. We have scans set for our next round of chemo in early June for which I will anxiously await. I just want evidence of no cancer!!!
To all the mothers out there, a very happy Mother's Day. To my friends who have lost children to cancer this year, my thoughts are with you tomorrow and always.
Sheila
Friday, May 7, 2004 8:44 AM CDT
Good morning from a sunny but chilly Edmonton. Shiri continues to recover wonderfully. She seems much more comfortable and in less pain that with last week's surgery. We chose a different type of pain relief over morphine or an epidural and it seems to be working much better for her. Yesterday morning, she was up and we all went to the Beach playarea at the hospital. It turned out that Global tv was filming a promo commercial for an upcoming telethon to raise funds for the Stollery Children's Hospital. Shiri is one of the featured children in the promo so she will be coming to tv sets everywhere soon on a regular basis. Her nurse even waited until the end of filming to take Shiri down for a chest xray (the beauty of this hospital is that the nurses will come down to the Beach to check on the children and to take them for tests, rather than insisting the kids stay in the ward). The telethon is scheduled for June 5-6. We expect to be here for chemo that weekend and will definitely do what we can to help raise funds for this wonderful hospital that has helped Shiri and so many other children do so well.
Shiri is doing so well that her chest tube should be pulled this morning. With that, we hope to be discharged maybe as early as Saturday. Quite a remarkable recovery!! Marino stayed with Shiri last night to give me a break and allow me to veg out for a bit. Shiri likes that - I apparently lack Dad's touch in lifting her. :)
We meet with Shiri's oncologist today and I have been busy making a mental list of questions about the path report and their thoughts on where we stand from here. We'll let you all know the results.
Sheila
Wednesday, May 5, 2004 5:40 PM CDT
All done!! Seven and a half months and five major surgeries later, we hope and pray that the last cancerous tumour has been successfully removed. The surgery on Shiri's left lung went well and they were able to remove the last tumour with good margins. No other abnormalities were evident. Shiri is now back in her room, looking really great and resting comfortably. She has already been drinking water and she is talking and interacting with mom and dad. She just looks terrific!!
We also received the pathology report on the right lung tumours this morning. Somewhat surprisingly, given that one appeared to be scar tissue, the report indicated that they were both Wilms tumours. Thank God that they are out! We don't know much more than that as we have not had a chance to discuss the report in detail with her primary oncologist but we were advised by her radiation oncologist that during today's medical meeting, the word was that they are happy with the pathology and that it was considered to be good news. We will find out more about what it all means later this week when we have a medical conference to discuss the future in a bit more detail.
We are both so relieved and so hopeful that this will be Shiri's last surgery (except to have her IVAD removed down the road) - what a strong little girl she is! We have promised her an end of surgery party at Larga when we are discharged - icecream cake for all!
Back to Shiri...thank you all so much for your thoughts and prayers today. I think there was a lot of positive energy in the air.
Sheila
POST SCRIPT, Shiri still has eleven days of in hospital chemotherapy to do as well, the next May 13 for three days, June 2 for five days along with diagnostics, June 24 for five days. We have a consultation with her oncologist on Friday. Barring any new developments, Shiri should be celebrating conclusion of chemotherapy on June 30th.
Monday, May 3, 2004 5:56 PM CDT
Hello everyone! We were finally discharged this morning - yippie! Shiri continued to feel a fair bit of discomfort throughout the weekend, until her chest tube was pulled yesterday. A shot of morphine, pull the tube and then a pass to attend Callieu. It as a busy morning. :) :) Having viewed the size of the chest tube in her, I can now well see why she was so uncomfortable.
We are at Larga for two nights and then back to the hospital for surgery Wednesday. The weather here has been fairly variable - if it is nice, we will try to visit the zoo tomorrow, failing which, Shiri has a yen to go to the amusement park at West Edmonton Mall and ride the train there. It is wonderful to be out of the hospital, even if for such a short period of time! What a luxury, taking a nap without scads of people coming in and out of the room.
Thanks for checking in on us. We'll update on Wednesday after Shiri's surgery.
Sheila
Saturday, May 1, 2004 7:34 PM CDT
Hi everyone. Sorry for the long delay in updating. Shiri is doing reasonably well. She initially appeared to recover from her surgery quite quickly, up and walking on the second day. In the last day or so, she has been having difficulties with pain and with swelling on her right side (where she had surgery). Her epidural may have dislodged and it was removed today as it did not appear to be offering her any pain relief. For some reason, her right leg has gone a bit numb and is swollen and she is having difficulty putting any weight on it. She is still also having problems with her right arm and back being swollen and tender. They initially said her chest tube would be out in 2-3 days but now are planning - hopefully - to have it out tomorrow morning (5 days later) as the latest xray shows air on the top of her lung which shouldn't be there. Her hemoglobin is also low so she is getting a transfusion tonight - mostly preventative because of her second surgery next week. Nothing too serious but just a series of little problems which is complicating a quick exit from here! And making Shiri a tad crankier than she normally is. Which is saying a lot because she has tolerated this journey so very very well and has had such good humour throughout. We are still hoping to get "sprung" tomorrow so we can see Callieu - or at least have a pass for several hours (the theatre is only across the block). And then back Wednesday to do it all over again. Poor kid. No pathology results yet - sometime this week. We will have a medical conference when they get path results and should have a better idea of what the future holds for all of us.
In the meantime, it is incredibly warm in Edmonton today and we just want to get out of her for a few days to enjoy the green grass!
Take care and thank you all for checking in on us. As you can see from the pics, even though uncomfortable, Shiri is still finding time to play - especially at the Beach. What a motivator to getting her out of her hospital bed!
Sheila
Wednesday, April 28, 2004 8:04 PM CDT
One lung down, one to go! Shiri is out of surgery and everything went well. Her surgeon just met with us and indicated that they removed the two tumours - as had been suspected in her last Cat scan, one had the appearance of scar tissue. The other one he said was very hard and didn't appear to be a "live" tumour but, as he indicated, pathology will tell the story of what these lumps are. Thank God - nothing else of concern was noted in the right lung!! I know too well how aggressive this disease can be and it has been three weeks since her last scan....so we worry.
Shiri is uncomfortable and is totally tubed up, but is alert and talking. In fact, she just eyed Mom's fruit plate and wanted to have some canteloupe and watermelon, so she is definitely on the road to recovery. What a remarkable little trooper she is.
Now we await pathology results and then do all of this again next Wednesday. We are hoping to be "sprung" from here by Sunday as we have tickets for a stage show of Callieu. Nice reward for Shiri.
New pics inside of surgery day. For some reason, the main page picture is not showing properly.
A relieved mom signing off....
Wednesday, April 28, 2004 10:35 AM CDT
Shiri is in surgery right now. We expect that she will be out in an hour or two. I will never get used to her being sedated for surgery. She just hates it and clings on, saying that she's going to disappear. I think that is the worst part of all of this. She is so stoic with the pain and discomfort from surgery, but just panics at being sedated. I hate it.
They are doing Shiri's right lung today (two tumours) and we found out yesterday that they will do her left lung next week, not two weeks as we were originally told. Hence, our time here should be shorter than expected. We waited and waited yesterday after her medical exam to see if we could speak to an oncologist about this surgery. At the end of the day, we were told that there were no meetings planned with either her oncologist or surgeon and that her surgery was scheduled very early in the morning, without any meeting about what they were going to do (bear in mind that we didn't even know which lung was going to be done first or anything about the particulars of this type of surgery). At that point, I must confess to a little spiel on the importance of making the informed consent process meaningful which rapidly got us a telephone call with her surgeon (thanks, Karan - this harkened back to your story to me of last week and I think I was just as fierce!). We have absolutely no doubt the medical care is top notch, however, sometimes we feel out of the loop because we are so far away and just not around except for matters such as chemo or surgery.
The front picture on the web page is of Shiri and her friend, Laura, from Holden, Alberta. We shared a room with Laura six weeks ago when Laura was initially diagnosed with Wilms and was recovering from surgery. They are on the same chemo protocol and have taken a real shine to each other. It's wonderful to have another friend in the hospital and we were so happy to see Laura and her Mom yesterday.
I'm off to get coffee and then join Marino upstairs for the call from the recovery room. We'll update after surgery. We are told that the surgery is relatively straightforward and that they don't expect any complications.
Thanks for much for checking in on us. It means a lot to us to read your messages as we wait.
Sheila (an anxious Mom and Marino)
Monday, April 19, 2004 10:59 PM CDT
Good evening to our friends and family. A quick note - Shiri's counts are sky high today! Amazing what a week and some GCSF injections will do. No more injections until the next round of Etopiside. Happy Shiri. Happy Mom and Dad. Shiri's ear infection is much better - we want it to clear up before we fly next week. And the weather in Yellowknife has finally turned spring like - Shiri was bouncing around in puddles tonight after a week of solid winter like weather.
Unless we have news, we'll likely next report from Edmonton as to the plans for surgery. We are anxious to "get on with it" and find out exactly what those lung tumours are. Here's crossing fingers and toes for dead tissue and good pathology results. In the meantime, Shiri continues to run circles around us. Oh yes, big news - she went to daycare today and is so proud to have "graduated" to the age four group (and are her parents - she's only 3 1/2!). She even has her own chair and is just as pleased as punch.
Signing off from Yellowknife - one week to go...
Sheila
Friday - April 24th - Today is show and tell day at daycare - Shiri is so excited because she can show off her scar and her IVAD! She missed doing so last week because she was sick. I asked if she was going to bring anything else for show and tell. Nope. Just the scar and IVAD. Gotta love kids. They can turn just about anything into an adventure.
Friday, April 16, 2004 1:47 PM CDT
Good afternoon, everyone, and thanks for checking in on us. Shiri's first lung surgery has now been confirmed for April 28th. We travel to Edmonton on the 27th. We have been told that they will do each lung separately - one lung on the 28th, an approximate two week healing period, and then surgery on the second lung. Thereafter, we wait while Shiri recovers and then do her next scheduled three day in-hospital chemo approximately 10 days after her last surgery. Assuming successful surgeries, and no new growths, we would then only have two more chemo stays in Edmonton!
Shiri was doing very well - her counts on Tuesday were non-existent. She was severely neutropenic (the lowest she has ever been), however, one would not know it by her activity level. Her counts yesterday morning showed a significant increase which means she is on the rebound from her chemo (although she still needs her GCSF shots, drats). Unfortunately, last night we had our first emergency hospital visit in Yellowknife since diagnosis when Shiri contracted infections in both ears. With all that she has been through in seven months - chemo, three surgeries, radiation, countless pokes - she has never been in pain like she was last night. It was very distressing to see (and thank goodness it didn't happen two days earlier when she had an absolute neutrophil count of zero). Fortunately, she was given antibiotics and some medicine for the pain and has rebounded this morning after a somewhat difficult night. Dad is going to keep her inside today and have light activites and, hopefully, she will be back to her old self soon. I guess we are lucky to have only had this one emergency trip in all her months of treatment. Shiri is disappointed - she wanted to go to daycare as it is "show and tell day" and she wanted to "show" her scar! Next Friday....
It remains very cold in Yellowknife today - -21C - so it is a good day for all of us to stay inside. We are all looking forward to the summer for many reasons - end of treatment, most particularly - but the warm weather is a huge reason!
Thanks again for checking on our little girl.
Sheila (and Marino)
Monday, April 12, 2004 1:39 PM CDT
Happy Easter Monday, everyone! What a wonderful weekend. Shiri and I went out to a friend's cabin on Small Lake outside of Yellowknife. She tobogganed, snowmobiled, made snow angels and, thanks to Kim, she and the other children made easter egg baskets. We all, children and adults, had a lovely time catching the last bit of winter before the snow melts.
We've received word today that Shiri's surgery to remove her lung tumors is set for the week of April 26th. We don't have a specific date yet nor do we know if they will be doing each lung at a time or both together. However, her chemo treatment set for April 22nd will be postponed until after surgery in order to ensure that her counts are as high as possible for surgery. We will know more once her surgeon meets with the radiologist to discuss her lung tumors in greater detail but I'm so happy that surgery will occur within the next few weeks. After that, three more in-hospital chemo sessions (11 days total - two 3 days ones and one 5 day one) and we will be done!!! God willing. Sometimes I just feel like we are holding our breath every time we have a scan or ultrasound. This disease can be so unpredictable and so many children we know have relapsed. I just want to get the last bit of cancer out of her and then hope that all the positive news we have received along the way continues in the sense of no progression of the cancer. In the meantime, Shiri remains as happy as a three year old can be. She had a fabulous weekend - both at Small Lake and in town - and, as the inside pics show - is convinced it is spring and time to wear her easter dress again (with rubber lady bug boots!) and play hopscotch outside, notwithstanding a very cold day here in Yellowknife!
Sheila
Saturday, April 10, 2004 1:20 PM CDT
As Ms. Shiri and Mom are enjoying northern sytle spring at a freinds cabin over the weekend, I shall make one of my rare appearances on Shiri's journal. The journal as most of you notice, is Mom's domain :-)
Ms. Shiri had her first full day of Daycare last thursday for the first time in more than six months. A new perspective of milestones. She had her blood chemistry done early thursday morning at Stanton Hospital, and her counts were good. Her next check is early tuesday morning.
She continues to be in good cheer, chattering constantly and does her meds well including her GCSF injections.
I bid you all a Happy Easter weekend, and thank you for your visits, words, and support.
Marino (Dad)
Wednesday, April 7, 2004 3:42 PM CDT
We are (happily) back in Yellowknife! Even with the colder weather here, it is so wonderful to be home. No real news on the oncology front. Last week was spring break in Edmonton and most of the oncologists were away so there has been no real opportunity for them to meet as a team and discuss the issue of what her scan results mean and when surgery to remove the tumours should be scheduled. We have been told that Shiri is on the list of children to be discussed in at a case conference today and also on the list for the tumour board meeting tomorrow, so we should know more early next week. The oncology ward was amazingly busy over the weekend with children who had relapsed and were in serious condition, hence, some children could not be admitted for their chemo treatments because there were no beds available. We consider ourselves very lucky to have been able to have Shiri's treatment proceed on schedule. We are also so fortunate that there were no new growths or surprises from her catscan so there is no real emergency or need for urgency in deciding her surgery dates, thank God. So I'm comfortable waiting. Maybe I'm finally learning some patience.
Shiri continues to do well. No negative impact from her chemo treatments. She had a blood transfusion yesterday which will, hopefully, preempt her energy levels bottoming out from the chemo. By the end of day five, she was getting bored and was happily discharged. How nice it was to see her running outside, all excited to be in the sun, playing with rocks, and to not be hooked! Her enthusiasm was contagious. I am SO happy to be "out" and to finally get some good quality sleep and cuddle time with Shiri.
With the one exception of GCSF shots starting again tonight, life is good - we have a four day holiday weekend, are home, and there is a hint of spring even up here. And most of all, Shiri is a healthy as she can be right now. Have a wonderful Easter weekend and we'll post once we know more about surgery.
Sheila
Sunday, April 4, 2004 10:32 AM CDT
Nothing new to report on the oncology front. We still haven't had a chance to sit down with Shiri's oncologist to discuss the results of the last cat scan and determine the time frames for surgery to remove the remaining lung tumours. They have booked us for chemo April 22-25th so it may not be until after that round. We are going to make sure that we have at least a brief consult with Shiri's doctor before we leave on Tuesday so as to have some idea of the picture for the next few months.
Shiri is tolerating her chemo extraordinarily well. There has been no diminishment in her activity level! Her blood pressure is fairly high, however, and her urea levels are elevated which is of concern to her doctor because she only has one kidney. They are scheduling a nephrology consultation with us and may be doing a renal scan to make sure that there are no problems with her remaining kidney. It could be just the tremendous amount of fluids she is taking in to flush out her chemo, but if there are problems, we would rather catch them now before we head home again.
This weekend is Juno weekend in Edmonton and the Beach (children's play area) opened up yesterday for a special visitor - Nellie Furtada gave a little concert for the children. Today it is expected that there will be more visitors at the Beach (Blue Rodeo, I have heard). The children were just entranced yesterday - it was a wonderful sight to watch. And such a nice break from the tedium of the weekend which is normally such a quiet time at the hospital.
Two more days and we are out of here! Three more chemo stays left after this one!
Sheila
Thursday, April 1, 2004 1:23 PM CST
Good afternoon - I'm just taking a few minutes to check email and update Shiri's website while Marino and Shiri get checked into her hospital room. We have not met with Shiri's oncologist yet (this afternoon? hopefully) but our oncology coordinator indicated that Shiri's catscan showed a clear abdomen (yippie) and no swelling on her lymph nodes. Her lung tumours are still there - one shows marginal reduction and one other shows some calcification. Our coordinator thought that the calcification might be good news (dead tissue?). NONE have increased in size! We'll know more about what it all means when we meet with Dr. Stobbart later today but, all in all, I'll take no growth in the lungs and a clear abdomen anyday.
Back to the ward!
Sheila
Wednesday, March 31, 2004 10:07 AM CST
Good morning from Edmonton - we arrived safely. What an amazing difference in weather! It reached a high of +23 yesterday and sunny. Shiri had a blast running around playing outside. I introduced her to the concept of spring which seems to be a foreign concept for her!
Catscan and lung xray are done - Shiri's dolly was xrayed as well. I could see clearly on the lung xray one of the tumours so we are not expecting that they are gone. I only hope that there has been no growth and that her abdomen remains clear. We will not find out the results until tomorrow when we are (hopefully) admitted for chemo. I hate this wait but in the interim, we are just hanging out at Larga and enjoying the family time together. Shiri went to the Beach at the hospital yesterday and was apparently filmed playing with her new bunny ears - thanks Sherina and Sandro for letting us know that. We missed the news, unfortunately. All in all, one happy little girl with two anxious parents.
Our thanks to everyone for checking up on us.
Sheila
Saturday, March 27, 2004 10:59 AM CST
Just a brief update - Shiri's cat scan and ultrasound is scheduled for early Tuesday morning in Edmonton so we are leaving Yellowknife Monday night. Then two "free" days before Shiri is admitted Thursday to begin her next five day cycle of chemo. This cycle includes Etopiside which is the chemo that had such a strong effect on blood counts in February, resulting in a blood transfusion (and which also made her lose her hair).
We'll report as soon as we have the scan results. We are also going to ask for a medical conference to get more of an idea about her lung mets and when and how they will be taken out.
Shiri is doing beautifully - enjoyed her time at Caribou Carnival (a civic holiday here in Yellowknife) yesterday. She has more energy than any adult I know and keeps us all busy. As you can see from the pics, it is still very cold here in Yellowknife (-30C yesterday) and the warm weather of Edmonton will be a nice change.
Sheila
Wednesday, March 24, 2004 11:45 pm
A brief update. Shiri continues to do amazingly well. We went for blood tests yesterday and she is again neutropenic - low white blood counts. We were told that this is not a surprise and that her stronger chemo regime has a cummulative effect. However, it is not affecting her energy levels at all and she continues to sail through her days, with much energy, smiles and an enthusiasm of life that should be typical of a three year old.
We are still waiting to hear the date for Shiri's scan and ultrasound next week in Edmonton, followed by her five day cycle of chemo.
Many of you have mentioned the pictures on the website and Shiri's dad, Marino, deserves all the credit for the wonderful pictures of Shiri's day to day life. As might befit my profession, I am the wordsmith and he is the photographer.
We will update as soon as we know when Shiri's scans are and certainly when we know more about where she is. In the meantime, and I cross my fingers typing this (which is quite a feat), Shiri continues to react amazingly well to her new chemo routine and thus far has displayed little negative symptoms typically associated with chemo. If truth be told, all of this is much more difficult on the adults because we have learned fear and apprehension of the future. She just takes it in stride and goes on to the next fun thing in her life. A lesson to learn and one which I am trying hard to learn.
Sheila
Wednesday, March 17, 2004 4:25 PM CST
We did Shiri's blood work today and her counts and spirits remain high. She danced through the halls of the Yellowknife hospital!
I spoke with our oncology coordinator today who reassured us with respect to the lung tumours. Apparently, while they hoped radiation would make them disappear, the radiation oncologist indicated that they are so large she did not expect that radiation would make them go away entirely. Surgery is definitely an option to remove them. The plan is for Shiri to have another cat scan and abdominal ultrasound prior to her next round of chemo (set for April 1st) and to review those results and decide on specific dates for surgery after the next round of chemo. Because the tumours are in both lungs, she may need two surgeries to remove the tumours. I am relieved that surgery is an option and that we have a plan with respect to getting rid of these tumours. I am also curious as to what a biopsy of the tumours will show. She has been classified as diffuse, partially because of the blastemic nature of the cells in her kidney tumour, however, no biopsy has ever been done on her lungs. As well, I cling to the hope (even though it is apparently remote because of the size of the tumours) that they are now necrotic tissue - dead tissue that the body hasn't absorbed. But we will find it all out soon, I hope.
Poor little Shiri - at least one or two major surgeries to go and that doesn't even count taking out her IVAD (central line) down the road. However, her spirits are high and she is just blossoming in every way - emotionally, intellectually, and physically. She hasn't been sick once since her latest round of chemo and is just doing so well.
Thank you all for your messages of support to us and for checking up on Shiri. These can be dark days and it is a ray of sunshine to know that our friends and family are pulling for Shiri. When this is all over, we plan on making a bound book for Shiri of all of messages we have received, this journal, information on Shiri's medical staff, emails and letters from friends and all sorts of things (including scrapbook pages!). I'm sure she will treasure them as she gets older as much as we have.
Sheila
Saturday, March 13, 2004 12:43 AM CST
Good afternoon from Edmonton.
Cat Scan results - Shiri had a scan yesterday (she is getting rather sanguine about the procedure!). We received verbal results this morning. Of her three lung tumours, one remains unchanged, and two have shrunk marginally. (1.5 to now 1.3 cm and 2.36 to 2.2 cm). Given that she is only three weeks, and two days, off radiation, her oncologist thinks that the radiation may still be working and that the next scan will tell them more. There are no signs of any new tumours in her abdomen or in her lungs (thank God). I'm very glad now that they are treating Shiri on this more aggressive chemo routine. Clearly, her other chemo regime was not very effective in treating her lung mets, nor does it appear that radiation alone will get rid of them. We don't know when her next scan is scheduled but I am hoping that this new regime proves to be more effective. As disappointed as we are that the tumours have not disappeared, I am grateful that there are no new tumours as Wilms can be a very fast spreading cancer.
Shiri is doing beautifully on this regime. We are on day three of chemo with no problems whatsoever and will be discharged tomorrow to return to Yellowknife until approximately April 1st when her next chemo cycle of five days starts.
Sheila
Wednesday, March 10, 2004 8:15 PM CST
Shiri's counts are great which means we head back to Edmonton tomorrow morning for three days of chemo. What a trooper she is! We have a cat scan - time as yet unscheduled - and will let you all know the results as soon as we know. We're crossing our fingers for no tumours in the lungs.
Thank you all for your kind notes and messages about Shiri's "new look". It shouldn't have hit as hard as it did - and it seems so trivial in the bigger scheme of things - but it was difficult to see Shiri lose her hair. Now I look at her peach fuzz head and view it as a very tangible sign of her battle and courage.
A special thank you to Shiri's cousin, Mary Frances, who authored a remarkable poem about Shiri (it's in her guestbook). It brought tears to my eyes (and her dad's). Mary Frances, you will love university!
Sheila
Monday, March 8, 2004 3:15 PM CST
Shiri's counts today are terrific - way up (her white blood count has increased from .1 a week ago to 12.3!). We are hoping that this means she can go ahead with chemo and a cat scan tentatively set for Thursday in Edmonton.
She is officially losing her hair. It had been thinning for months but this weekend started coming out in huge clumps. It was everywhere, including in her mouth, so we decided to get a crew cut this morning after her blood draw. I suspect even the remaining fuzz will be gone in a day or so. Shiri doesn't seem to mind one bit and has energy and happiness to spare. Mom, on the other hand, finds this hard. However, she looks really cute with her new look - I'm just going to insist on dressing her in dresses so no one mistakes her for a boy although that may be less than advisable given how cold it still remains up here!
Sheila
Thursday, March 4, 2004 11:06 PM CST
Good evening from a very cold Yellowknife! Shiri's counts are back up - she had a blood draw today. Even before the draw, both Marino and I felt that she was more energetic and more like her old self so were not surprised that that was reflected in her counts. Thank god for blood donation - the blood really helped her! And everything went so smoothly today with accessing Shiri's IVAD, a minimum amount of fuss and tears and it was quickly over. We are still on the GCSF injections to boost her white counts but, hopefully, Shiri's counts will get high enough to discontinue for a wee bit and give her a break prior to her next round of chemo late next week. We also hope for a break in the cold weather soon so that Shiri can get out to play a bit more - we are awfully house-bound these days with -35 temps.
In the meantime, we have one happy little girl tucked away in bed tonight and for that we are grateful.
Sheila
Tuesday, March 2, 2004 11:48 PM CST
A quick update. After an active and happy return, Shiri took a bit of a nosedive yesterday. Her blood counts were very low (lower than they have ever been - she was what they term "neutropenic") so she needed a blood transfusion today. She was also sick tonight, whether from the chemo, or the long day, or low counts, we don't know. All in all, too many pokes for a three year old. We just hope that her counts rebound enough for her to enjoy the next week here and for her to get her 3 days of chemotherapy scheduled for late next week. On a happy note, all of our stuffed animals and other assorted "Shiri" toys arrived from Edmonton today - thanks Hilda, Dave and so many people - so Shiri (and Mom and Dad) will soon be surrounded by Shiri's favourite toys once we have sufficient energy to start the unpacking process (still not having recovered from the packing!).
Sheila
Saturday, February 28, 2004 12:27 AM CST
We are home in Yellowknife! Thursday was a grueling day of moving (how many stuffed animals can one little girl have?). Uncle Brian and Marino did a tremendous job all day assisting in all aspects of the move. Shiri was amazingly cooperative. Her dad drove our stuff to a number of different places. At one point, there was heavy snowfall in Edmonton, reducing traffic to a crawl. Two hours in the car enroute to various places and Shiri kept Dad completely entertained and didn't fuss at all! And all of this after her first GCSF injection at the hospital, which I had to administer twice because I messed up the first injection. I hated to have to poke her twice and hopefully Mom's learning curve will be a short one and this whole process will become easier.
We arrived to a warm welcome and a full fridge and freezer, thanks to Auntie Sarah (who knows well of my lack of skill in the kitchen) and her angel friends. Shiri went to my office after our hospital appointment (more injections - this one went much better!) and just thoroughly enjoyed jumping up and down and playing with her godsister, Emily, and everyone in the office. While we were at the hospital, and Shiri's IVAD was being accessed, she was chattering about her "lumps" and asked whether she would have lumps and pokes when she grew up. I said that I hoped she wouldn't. She then asked why she had lumps and other children didn't which was the first time she has ever asked "why". I found that question hard and didn't really know how to answer. How do you explain to a three year old why she has cancer?
I keep on wondering when this "fatigue" part of chemo will kick in - she certainly is energetic and high-spirited and, thus far, showing no ill effects from her first experience on this stronger regime. We are off to shovel snow today (Shiri's play request) and are just generally kicking back before the week starts, Mom returns to work, and Shiri goes to Dad's place for more fun. Thank you all for your warm words of welcome to us - it is great to be back and just wonderful to know that so many people are rooting for Shiri. Yellowknife is a remarkable community.
Sheila
Thursday, February 26, 2004 2:45 AM CST
A very late good evening to all. Shiri has finished her first five day round of chemo with no difficulties. Mom and Dad were also released after going to injection school (with some difficulties on the part of mom). Shiri is spending the night with her dad at Larga while I finish packing and cleaning our Edmonton home - thanks to Uncle Brian - and his military training - we have just finished a massive job of packing up five months of "stuff" and cleaning the apartment (or almost finished, lap top computer still to go). We are home on Friday for two weeks - and then back again in two weeks for a three or four day cycle of hospital chemo - and a cat scan to evaluate the effectiveness of radiation on her lung tumours. Shiri, as is evidenced by the pictures of her medical play at the Beach, is still really high spirited and active and just plain happy. Mom, on the other hand, is just plain tired and looking forward to getting home. Notwithstanding injections, blood work, etc... we are all looking forward to resuming some modicum of our old lives.
See you in Yellowknife!
Sheila
Sunday, February 22, 2004 10:12 PM CST
Three out of five days of the new chemotherapy regime are completed. So far, as you can tell from the pictures, Shiri remains high spirited and healthy. Shiri's oncologist agreed to postpone for a few hours Shiri's long chemo routine in order to allow her to attend a live stage production of Big Comfy Couch (just an illustration of how "child focused" they are at the Stollery - recognizing that doing activities like this is just as important for her health as is chemo). A wonderful opportunity for her to be "unhooked" and for us all to get out and enjoy a few hours out of the hospital. She returned in high spirits and was "Super Shiri" dancing throughout the ward this afternoon. The main web page picture is blurry but is so wonderful - Shiri dancing and skipping outside of the Jubilee Auditorium. Amazing - three days of really really intense chemo and almost no side effects yet. Just a normal active girl racing through a cancer ward. It still seems surreal at times to me. Two more days to go on this cycle and then home to Yellowknife! Cold weather and all (which will be an adjustment - it is sunny and 5 here today). Dad is staying with Shiri tonight at the hospital to give Mom a rest and allow me to continue the rather daunting task of packing up to leave the apartment we have called home for the last five months.
PS Clarification
Shiri will be discharged on Wednesday, however will likely be Friday for Yellowknife return. We will have a consultation with oncology tomorrow afternoon (Tuesday) to review "roadmap" and logistics. The next stage involves rotation (dependent on Shiri's health and tolerance to chemotherapy) for four months of two weeks Yellowknife, one week Edmonton in three week rotations. We have some victories but still a ways to the recovery destination.
Saturday, February 21, 2004 12:27 AM CST
We're finished Shiri's first day of chemo on her new five day cycle. As far as I can tell, it is approxiamately a 12 hour process. She gets hydrated with fluids, then gets ondonsetrone (anti-nausea drug), dexamethadrone (sp? - a steriod to assist with nausea), then her chemo drugs slowly infused over a number of hours (cyclophosphamide and etopiside), then mesna periodically until midnight (a drug to coat her bladder to protect it from the toxic effects of the chemo drugs). So far, the only side effect is that she needs to go to the bathroom about every hour which makes for sleepless nights for both of us.
She is at the hospital with Marino right now while I try to grab a few hours of sleep. We will likely alternate night care during these cycles if she will let us which hopefully make this an easier process. Then out by Tuesday and, subject to packing up our Edmonton home and passing "injection" school, back in Yellowknife by the end of the week. Shiri continues to be in high spirits - her oncologist was saying this morning that the biggest advance in chemotherapy in the recent decade has been the development of anti-nausea drugs which makes this so much easier on children.
Off to sleep now....thank you all for following up on us and for your prayers. She is one very special little girl, as are so many of the children we have met in this journey.
Sheila
Thursday, February 19, 2004 3:08 PM CST
We met with Shiri's oncologist, Dr. Grundy, today. They are changing her treatment protocol to diffuse anaplasia. There are a number of reasons, including the high percentage of blastemic cells in her left kidney (generally associated with a poor prognosis) and the fact that we don't know the histology of her lung tumours as they have never been biopsied. As they put it, we really only have one good chance to beat this cancer (recurrent Wilms is a real battle) and they want to err on the side of caution and be as aggressive in her treatment as possible.
This means her chemo will change to 5 and 3 day alternating hospital cycles every three weeks with new and stronger drugs. As well, she will require daily injections of GCSF to reduce the impact that the drugs will have on her white blood counts. Her protocol will also be longer. We were on week 15 of a 27 week protocol; we are now on week 9 of a 27 week protocol for this new treatment.
We havn't fully absorbed the impact of this change but are still hoping to return north after this next treatment and fly down every three weeks for chemo. We are just waiting to hear if they have a bed for her to be admitted today for five days.
On a happier note, we have finished radiation and Princess Shiri was celebrating at the Cross. Marino will post pictures of today if they are not aleady uploaded by the time you read this. Shiri was just so happy today which made this news all the more poignant. I was finally able to give her the anit-nausea medication before radiation (previously she had thrown it up - go figure) so she had no side effects from today's treatment.
Thank you all so much for your good wishes and prayers.
Sheila
Wednesday, February 18, 2004 3:09 PM CST
Seven radiation sessions down, one to go! And Shiri again did the radiation today without sedation and with less apprehension that yesteray. We were able to walk out minutes after our appointment without, as Shiri calls them, "the wobbles". Shiri continues to be fairly sick immedediately after radiation for several hours but still resists taking anti-nausea medication.
No chemo today. Postponed until tomorrow. They have the pathology report from John Hopkins which tentatively states a focal anaplastic diagnosis, however, caveats that diagnosis with a question mark about the tumours in her lungs. They have never been biopsed so we don't know if they are also anaplastic. If they are, then it puts Shiri in the diffuse category. If they are not anaplastic, then it means only one pocket of anaplastic cells in her left kidney exists and her categorization would then be focal. Her oncologists are reviewing Shiri's records today to pay particular attention to how her lungs have responded and will let us know their conclusion tomorrow. The information we have received before suggests that the tumours in Shiri's lungs have responded well previously to chemo, which would suggest that they are not anaplastic (anaplastic cells are generally resistent to chemo - that is what makes them such a concern), so I am hopeful that the diagnosis will be positive and that we will receive "regular" chemo tomorrow instead of being admitted for the longer and more aggressive chemo protocol for diffuse anaplasia.
Thank you all for reading our journal and for signing our guestbook. It is such a wonderful source of support for our family.
Sheila
New pics - Shiri dancing at the Cross yesterday, wearing her princess crown and inside, of her playing in a nearby playground on Monday - even with all of the stuff associated with treatment, still a happy happy girl!
Tuesday, February 17, 2004 10:04 AM CST
Shiri did it! Radiation without sedation! She was so brave and stayed in so still in the radiation room, counting very slowly to ten. We are very proud of her and it sure made the entire process easier to not have to cope with any distress around sedation. Unfortunately, previously the sedation also included anti-nausea medicine which she does not like taking on her own. Hopefully, her nausea today will be short-lived. Two more radiation sessions and we reach the gates of the golden castle. Shiri is looking forward to it.
Another one of our Wilms family children passed away yesterday. Brock was 16 and had been fighting Wilms, favourable histology, for many many years. www.caringbridge.org/in/brockbarnard/ Our heart goes out to his family.
Sheila
Sunday, February 15, 2004 11:28 PM CST
Good evening. Shiri continues to do well. She did seem to have some effects from the radiation late last week with vomiting and stomach pains, but we are not sure if this was caused by radiation or something else she may have picked up. It has abated over the weekend and she just had a grand time. The main picture on the website is of her dancing at a Kids with Cancer social today, the inside pictures are of the dance and of Shiri and Jessi, her sister. Jessi was down from Yellowkife for the weekend attending a swim meet and Shiri managed to vocally cheer her on as she swam in the finals of the meet early this evening. A very full day and a happy little girl tonight.
We are finding that Shiri is becoming increasingly distressed with respect to being sedated for radiation treatments. Friday was difficult. On Tuesday (Monday is a holiday here) we are going to try to see if she is able to stay still enough to not need sedation. It would be easy if we were allowed in the room with her during the procedure but we are not permitted. It's worth giving a try, however. The technicians can monitor her on camera so they will be able to know immediately if she moves or is distressed. I'm hoping she can stay still without us being there as it will just make the entire procedure easier for her if she doesn't have to go through sedation. Thursday is her last day of radiation so only three sessions to go and we are done another major portion of her treatment! If the pathology results from John Hopkins remain relatively favourable (ie. focal, not diffuse anaplasia), then most of the time intensive portion of her treatment will be behind us. Now, if I could just be really sure that the radiation is working on those lung mets, I would be happy but we will know soon enough.
Given that it is family day here in Alberta, we are going to take advantage of this holiday and enjoy our little daughter. Have a good week and we will post soon --- and will certainly post the path results due Wednesday!!
Wednesday, February 11, 2004 10:08 PM CST
Three sessions of radiation down, five to go! Shiri continues to suffer no ill effects at all from radiation (lucky us). She is getting more resistent to being anesthesized - she just plain doesn't like it. She described it as "her head gets sticky and twinkly, and then she disappears". Which the staff at the Cross confirm is a pretty accurate description of the effect (I haven't experienced anesthetic myself so wouldn't know). Fortunately, her reluctance in this regard hasn't changed her positive attitude about going to the Cross in the morning, nor has it had a negative impact on the balance of her day.
We changed pictures today - the front picture is of Shiri at the Cross looking at a drawing done yesterday by Brian, one of the radiation therapists. The road has eight stepping stones leading to the golden castle. Every day, we place a sticker on the path and by next Thursday, we will be at the gates of the castle. A lovely idea and so indicative of the quality of care we receive at the Cross. The inside pictures are self-explanatory - just note the flat tummy on pic number one though! I'm still startled when I see how different Shiri looks post-surgery!
Warning - the next bit of this journal entry is long and complicated, and medically technical. Someday, when this is all over, I'll focus more on plain language writing but right now these concepts are fairly complex and I know that a lot of our Wilms Family friends we have met appreciate the technical detail, as do I when I read other sites to gain information. We spent a long time after her radiation meeting with the head oncologist at the Strollery this morning (Dr. Grundy - who also leads the National Wilms Tumour Study Group - an international organization devoted to Wilms Tumours - we are so fortunate that such a world expert is available here in Edmonton). Shiri's tumours have been sent to Dr. Perleman at John Hopkins. Dr. Perleman is a pathologist whose primary area of expertise is examinings hundreds of Wilms Tumours from all over the world. Those results are not in yet. The preliminary results from the Stollery pathologist are available. They show that the tumour on her right kidney (formerly a mystery tumour of considerable concern) is a nephrogenic rest (similar to nephroblastomatosis which is a broad term for several nephrogenic rests. A nephrogenic rest is infantile kidney tissue which has not matured as it should and is often a precurser to the development of a Wilms Tumour. But it is not cancerous and, according to the pathology, appears to have all been removed. Great news for her right kidney! The presence of a nephrogenic rest will require more intensive monitoring of her right kidney than might otherwise be the case, however, that news is positive.
The tumour on her left kidney, previously thought be be of favourable histology, now appears to not be. They discovered a pocket of anaplastic cells in the left kidney. Anaplasia generally means unfavourable histology, however, the new trend is to not use the word unfavourable but to categorize these cells as either "focal" or "diffuse" anaplasia. They believe that the tumour, while not being of favourable histology, is focal anaplasia, not diffuse anaplasia. In order to be certain of this categorization, the tumour was sent to Dr. Perleman. Essentially, focal anaplasia is treated with the same chemotherapy regime that Shiri is presently on and has a similar prognosis to favourable histology (although because the differentiation between focal and diffuse in the category of unfavourable histology is relatively recent in medical technology, and because focal anaplasia is just generally fairly rare, there are not a lot of stats out there - somewhat disconcerting to me, because I do like statistics). IF she has diffuse anaplasia, it will change her chemotherapy regime fairly significantly to add new two drugs (the E & C chemos - the full names escaped me but I have read about them in other parent's journals) and this chemotherapy will have to be done on an in-patient basis for a three to five day period. It also has a much much poorer prognosis. On the good news side, they think it is focal anaplasia and additionally, believe from the pathology results that it has been "contained" - there is no evidence that the anaplastic portion breached the kidney or the other portions of the tumour and the lymph nodes were clean (I didn't think to ask about the impact of the lung tumours on the assessment that they "got it all" - the worried mother in me coming out now).
Because of the possibility, slim as it is, that it might be diffuse anaplasia, Shiri's chemotherapy was postponed to next Wednesday when we will either continue with her ordinary routine on an out-patient basis (never thought I would use "ordinary" in describing my daughter undergoing chemotherapy) or Shiri will be admitted to hospital for 3-5 days of a different chemotherapy regime.
I mentioned to Dr. Grundy the "roller coaster" issue about how difficult it has been to categorize Shiri's cancer - we have now gone the full gamut of good news to bad news to good news etc... on both kidneys. I really thought that the diagnosis on her left kidney was solid because the tumour was so large that there was never an issue about getting a good biopsy. He explained that Shiri's case is unusually complex. In most Wilms cases, the tumour is taken out right away and they are able to get an accurate diagnosis from the onset. Here, they have only been able to sample a portion of the tumour and that is not always totally accurate.
The one thing I am very confident about is the quality of care she is getting. I have no doubt that every single step along the way has been well thought out and that they are doing everything they can, and going well beyond the resources available here in Canada, to make sure that whatever treatment Shiri gets is the very best for her.
After this news, we had a nap - these radiation days are early for all of us - and then Marino wins the Dad award for taking Shiri to see the movie, Catch that Kid, for the second time while I went out and picked up some scrapbooking supplies so as to allow Shiri and I to continue making scrapbook pages of this journey and of so many of our friends. We had dinner out at Boston Pizza and had one tired little girl when we got home. It was a very good day, afterall. We had one happy, funny little girl and just had a beautiful time.
Now we wait...for next Wednesday. If you've made it to the bottom of this entry, I'm impressed! I have probably gone on for far too long but this news was just really unexpected. But then this journey has been defined by unexpected news all along the way. Thank you all for caring about our little girl and for keeping tabs on us throughout this time.
Sheila
Monday, February 9, 2004 3:48 PM CST
Today was Shiri's first day of radiation and, so far, everything has gone wonderfully. I think I found it much harder today than did Shiri. No adverse effects yet from radiation although we are taking it easy today, just in case. We have rotated our pictures - the theme being "A day at the Cross". The first picture is Shiri playing lego at the Cross prior to getting ready for radiation, the second is of her being "marked" for radiation (so they know where to aim), the third one is eating post radiation (you can see a few of her black radiation markings) and the fourth one...well, that is non-Cross oriented but is just such a cute happy picture that we didn't want to take it down.
We stopped by the Stollery for blood work and a medical exam after radiation. Shiri's blood pressure remains fairly high - initally, the thinking was that her high blood pressure was due to the pressure of the large tumour in her left kidney but her blood pressure hasn't come down a lot since surgery. Hence, we are back on the dreaded Ramipril to control her blood pressure. Hopefully, this is short lived and someday her blood pressure will return to normal. It just seems so odd to me to have a three year old with high blood pressure!
We have radiation every morning for the balance of the week. We also have a meeting on Wednesday, same day as Shiri's chemo, with the head of oncology to discuss Shiri's pathology results if they are back then. Hopefully, we will know a lot more then about the mystery tumour in her right kidney and whether that will affect her chemo protocol.
We see a light at the end of the tunnel!
Sheila
Saturday, February 7, 2004 1:01 AM CST
Greetings from Edmonton. Shiri continues to recover amazingly from surgery - one week ago yesterday, she was in surgery and today, apart from the obvious scars, one would not know she had been through surgery. Last night, she was out at a movie with her dad, Marino, and enjoyed it thoroughly. She was one happy little girl when she came back home. She has had a wee bit of dirrehea over the past two days but even that is returning to normal.
No pathology yet. Preliminary results but out of an abundance of caution, they have sent the tumour samples off to, I believe, John Hopkins University for further analysis. Marino found this out when he dropped by the Stollery this afternoon to inquire. Apparently, nothing to panic about but because of the highly unusual way in which Wilms manifested itself in Shiri (both bilateral and metastatic - having spread to her lungs - she really doesn't fall neatly into any of their "staging" categories), and because the tissue samples are affected by her having received chemotherapy for 4 months prior to surgery, they want to be very sure of the exact pathology of the tumours in both kidneys. Shiri's chemotherapy, which was to resume on Monday, has been postponed to Wednesday as they want to have pathology back before they continue with her current chemotherapy regime. I'm not sure what to think of all of this but I do appreciate the caution that they are taking and the fact that they are clearly seeking out the experts in the field to make sure that they know exactly what we are all dealing with.
We start daily radiation on Monday - set for early every morning (8:00 a.m.) for 8 days, with a break on the weekend. Shiri has to be sedated for it (don't want her wriggling on that table when those rays are being directed her way) so has the usual fluid and food restrictions. Yuck. Having said that, we are anxious to "get on with it". A friend, whose grown daughter had Wilms as a child, told me that radiation just "melts away" those lung mets. I hold onto those words and feel very confident that we will have the same experience.
As an aside, I've been thinking about the whole issue of informed consent recently. We get pages of information on all the side effects of all of Shiri's treatment, and the radiation effects can be pretty scary, and then, fully briefed with all of this knowledge, sign forms consenting to the treatment. In so many ways, it just seems meaningless. There really is no choice and while I value being informed so that I know what to watch out for, there is no question about not signing. This isn't a facelift or botox injection. Anyway, just meandering thinking about the legalese involved in all of this and questioning its value. We will let you know how Shiri does after radiation - so many children that I have read about just do so very well throughout it all and I'm sure that Shiri will continue to demonstrate her same resilience as she has demonstrated on so many occasions during this journey.
Sheila
Wednesday, February 4, 2004 4:31 PM CST
Good afternoon. We've received wonderful news today. Shiri had a cat scan this morning which confirmed that the tumour in her right kidney has been successfully taken out -there is no sign of it on the scan. The scan also showed no tumours anywhere in her abdomen - taking out the left kidney and big tumour "got it all". Yippie! The tumours in her lungs are still there, however, on Monday we start radiation with a view to dealing with them and to ensuring that there are no stray cancer cells in her abdomen. We are also back on chemo as of Monday. We go right from radiation at the Cross to chemo at the Stollery (week 15 of a 27 week protocol of chemo).
Shiri's hemoglobin is a bit low so she is having a blood transfusion right now (also to prepare her for getting chemo and radiation which will affect her hemoglobin). Once that is done, there is a chance we may be sprung and be able to go home to our Edmonton home tonight. Her surgeons came by this morning and are pleased with how she is healing and returning to normal - they will check her pain levels tonight to give us the all clear to go home. Which will be wonderful. I know both Shiri and I will sleep better away from the hospital and they are still close enough for us to come in quickly if any complications arise.
No path yet but the news about the tumour being gone is just so comforting even without those results. We are ready to move onto the next leg in this journey and deal with the lungs and finishing her chemo protocol.
I'm still amazed at how flat Shiri's abdomen is. It just makes us realize how big her tummy really was and brings home the likelihood that this cancer has been growing in her for a long time. Thank god we are where we are at today.
Sheila
Update - 8:30 p.m. - WE ARE HOME! Shiri is happily playing with a new barbie doll and is just one happy camper - as are her parents. New pictures posted - the front one is from today - Shiri "wheeling" her iv, the first one in her album is of Shiri on her tricycle today (she learned how to ride a trike at the Stollery), the second one is of Shiri making cookies this morning at the Beach (not a talent she acquired from her mother) and the last one is the favourite ice cream pic.
Tuesday, February 3, 2004 11:48 AM CST
Good morning from Edmonton! Shiri continues to do beautifully. She is up and playing right now at the Beach (a play area for children) - the Grey Cup is supposed to be there this morning. She isn't walking yet but has her trusty red wagon to get about. Her epidural, cathetor and jackson pratt bag (draining her abdomen) should all be removed today which will make is much easier for her to get up walking. She has started eating again and her first food was - no surprise - icecream. Followed quickly by a second cone of ice cream! I am sure we will be back in our Edmonton home by Friday at the latest and possibly even earlier.
We should start radiation next Monday and are scheduled for daily radiation for approximately a two week period. She will also be resuming her chemo protocol soon - possibly next Monday as well. Once radiation is over, we have a series of tests (scans, heart function tests) and then should be back home to Yellowknife by the end of February.
No pathology yet. We will post as soon as we have news in that regard.
Sheila
Friday, January 30, 2004 8:04 PM CST
Wonderful news!!!! After almost six hours of surgery, Shiri has come through with flying colours. Her surgeons believe that they may have successfully taken out the tumour in her right kidney - God bless Dr. Todd - the kidney specialist. Her left kidney and the huge tumour was successfully removed - it was the size of a man's fist. They spent four hours on her right kidney and believe that they have the tumour with good "gross margins" and that 90-95 f her right kidney remains intact and hopefully functioning. Until we get pathology results, we won't know for sure if they did get the tumour but they are optimistic and positive. We should have pathology sometime next week. There was minimal blood loss and Shiri is resting very comfortably now. For the first time since this journey started, we received news which was more positive than we expected and Marino and I are very very happy and thankful.
Earlier in the day, Marino, Shiri and I had participated in a telethon for the Stollery Hospital Foundation. She sang twinkle, twinkle little star over the radio and just sparkled. We went straight from that to the operating room - for the first time, she went into the OR on schedule!! She was at her emotional and physical peak today and we believe that is helping her a great deal tonight.
Back to Shiri. Thank you all for reading our website and for praying for Shiri. We are truly blessed tonight.
Sheila
Sunday - the main picture is of Shiri in her wagon, less than 24 hours after surgery, wanting to go out with Mom and Dad for a walk. Her face is puffy because she is still retaining fluid. She is being given a lot of fluid to jump start her right kidney. Take a look as well at the new pics inside - taken the day before surgery. The first two are at the Cross in preparation for radiation. Love the fact that the doll got a scan - with Shiri's help in operating the machine!
Wednesday, January 28, 2004 0:24 AM CST
Just a quick update. We met with Shiri's surgeon today who is just wonderful at answering all our questions. He does not sound too confident about the prospects of removing the tumour in Shiri's right kidney on Friday but are going to try as long as they can do so without endangering the kidney itself (given that they are taking out the left kidney). He did describe a procedure that his assisting surgeon (a kidney transplant specialist) may use in the future if they cannot remove the tumour - he called it a "bench top resection" - where they take the kidney out, flush it to get ride of the blood, put preservatives in (?) and then remove the tumour, free of blood obscuring the site. The kidney is then placed back in the body. It is similar to a kidney transplant except that the original kidney is placed back in. They are not going to do this procedure on Friday - we are in more of a monitoring mode - but it remains an option in the future if necessary. He also confirmed that there is no way to know right now what is in Shiri's right kidney. We were left with the impression that he did not think it was neuroblastomatosis (a possibly precancerous lesion) based on how it looks on the scans. I hate not knowing. But then, as Shiri says to me recently (a new phrase), "Mom, you have to have patience".
We will be admitted to the hospital Thursday afternoon with surgery scheduled for Friday afternoon. Thursday morning, we are at the Cross having a scan and getting whatever they have to get ready to start radiation post-surgery. Poor kid, not only is she on clear fluids on Thursday to prepare for surgery, she cannot drink for 3 hours prior to her scan. :(
Shiri is doing well and is in wonderful shape. If there ever was a time to do surgery, now is it!
Finally, there was a dance held for Shiri in Yellowknife last Friday. The list of people who attended and who helped is long (and hopefully, we will find out more information as we have many thank yous to send out) but I really just wanted to say - Sue Glowach - thank you so much and to Yellowknife - the weather may be so cold but Yellowknifers have the most amazingly warm hearts!
Sheila
Wednesday, January 28, 2004 0:24 AM CST
Just a quick update. We met with Shiri's surgeon today who is just wonderful at answering all our questions. He does not sound too confident about the prospects of removing the tumour in Shiri's right kidney on Friday but are going to try as long as they can do so without endangering the kidney itself (given that they are taking out the left kidney). He did describe a procedure that his assisting surgeon (a kidney transplant specialist) may use in the future if they cannot remove the tumour - he called it a "bench top resection" - where they take the kidney out, flush it to get ride of the blood, put preservatives in (?) and then remove the tumour, free of blood obscuring the site. The kidney is then placed back in the body. It is similar to a kidney transplant except that the original kidney is placed back in. They are not going to do this procedure on Friday - we are in more of a monitoring mode - but it remains an option in the future if necessary. He also confirmed that there is no way to know right now what is in Shiri's right kidney. We were left with the impression that he did not think it was neuroblastomatosis (a possibly precancerous lesion) based on how it looks on the scans. I hate not knowing. But then, as Shiri says to me recently (a new phrase), "Mom, you have to have patience".
We will be admitted to the hospital Thursday afternoon with surgery scheduled for Friday afternoon. Thursday morning, we are at the Cross having a scan and getting whatever they have to get ready to start radiation post-surgery. Poor kid, not only is she on clear fluids on Thursday to prepare for surgery, she cannot drink for 3 hours prior to her scan. :(
Shiri is doing well and is in wonderful shape. If there ever was a time to do surgery, now is it!
Finally, there was a dance held for Shiri in Yellowknife last Friday. The list of people who attended and who helped is long (and hopefully, we will find out more information as we have many thank yous to send out) but I really just wanted to say - Sue Glowach - thank you so much and to Yellowknife - the weather may be so cold but Yellowknifers have the most amazingly warm hearts!
Sheila
Friday, January 23, 2004 8:20 PM CST
Good evening, all:
One thing I have learned is to never count on deadlines or dates in this place we are in. We have now been told Shiri's surgery will take place on Friday, the 30th, not Monday, in order to accomodate the adult kidney specialist surgeon that will be assisting Shiri's surgeon. Drats. I really just want to get on with this.
We were also told Shiri has to have clear liquids only from Wednesday night through to Thursday night, and then nothing thereafter until surgery. I think Thursday will be a challenging day.
We met with the radiation oncologist from the Cross today and obtained lots of information about Shiri's radiation which will follow her surgery - starting about 10 days later.
Thank you all for checking in. I will make sure to keep you updated. In the meantime, we will try to enjoy the temporary reprieve from surgery and all that that entails.
Sheila
Monday, January 19, 2004 7:33 PM CST
Hello everyone and thank you for checking in on us.
We met with Shiri's oncologist (Dr. Stobart) today to discuss the results of her MRI/Cat Scan etc.. of last week. Essentially, things are unchanged from her results mid-November. In November, the tumour on her left kidney had shrunk significantly (we have heard 40-50%), the tumour on her right kidney had no shrinkage, and the original five lesions in her lungs were down to three and all three were reduced in size. Today's results are almost identical to November's results (there is some marginal shrinkage in her left kidney - very marginal). As Dr. Stobart put it, the disease has not progressed. And that is significant given how aggressive Wilms can be as a cancer.
They have decided to go ahead with what was plan 1 in November - which is to remove Shiri's left kidney. As you may recall, in November, she was originally scheduled for a left nephrectomy and then a day later, we were told that they had changed their minds after further consultation and wanted to give the chemo one more chance to work, given that the tumour in her right kidney was non-responsive to chemotherapy. Chemo has not worked and the doctors are now seemingly unanimous in their view that the left kidney is not salvagable. Even with such significant shrinkage in her first six weeks of chemo, the tumour is too large and is too close to too many blood vessels to save any portion of her left kidney. This surgery will happen on Monday, the 26th.
With respect to the right kidney, they now believe that lesion (her one inch tumour) may be nephroblastomatosis - immature fetal kidney tissue that may or may not mature into normal kidney tissue. Nephroblastomatosis can also be a precurser (warning sign) which can develop into Wilms Tumour. A adult kidney surgeon reviewed the MRI and said that the lesion was easily removable. Dr. Evans, who has performed all three of Shiri's surgeries doesn't think it will be that easy. Next Monday, they are also going to try to take out this tumour (and the adult kidney surgeon will be assisting Dr. Evans) and, if they cannot, once again (fourth attempt) try for a good biopsy.
There really seems to be conflicting views about Shiri's right kidney. If it is nephroblastomatosis, that is good because it may or may not turn into cancer. But some of the research I have done since our meeting today suggests that most cases of nephroblastomatosis are receptive to chemo and Shiri's has not been in the past. But they really are shooting in the dark - her second biopsy - the only successful one that showed Wilms, favourable histology - could also be interpreted according to the pathologist as nephroblastomatosis. Until they get this thing out - and can do a proper biopsy - we may not know what is in her right kidney.
The mystery of her right kidney is of concern because they are taking out her left kidney. I just wish we had a better idea as to whether her right kidney will be okay, however, after three biopsies and multiple scans, ultrasounds, etc... there really are no guarantees.
We have thought of all these questions since our meeting but have another opportunity to have them answered - we will be meeting further with her surgeon, Dr. Evans, this week (hopefully) and will have a chance to ask more questions if not get more answers. I understand why doctors are reluctant to not speak about speculation or ideas as to what something might be - without proof - but it is somewhat frustrating particularly where what is in her right kidney could range from Wilms, unfavourable histology (resistent to chemo) to nephroblastomatosis which isn't yet cancer, just a precurser and potential warning sign.
After surgery - some recovery - and then radiation to Shiri's lungs and left abdomen. We will meet with the radiation doctor soon but expect that the course of treatment they now plan is about three weeks of daily radiation. And then, we pick up on the balance of her chemo protocol which, at this stage, is chemo about every three weeks. It ends sometime in April (the end date will depend on how long she needs to recover from surgery - they give her a break from chemo for surgery and then we get back on this roadmap - so it could be a bit later - the entire course, without interuption for surgery or illness, is 27 weeks - we are finished 12 weeks). Assuming things go well with surgery and radiation, we should be able to go home to Yellowknife and just fly down for the chemo and subsequent checkups.
Shiri's spirits are so high! She really is at her emotional and physical peak for surgery. She is well past her episode of vomiting from her last chemo, is eating sooo well (in fact, I'm almost at the point where I'm imposing rules about eating supper first moving on to snack type foods - those type of normal parental rules went out the window when she had no appetite and all we were worried about was keeping her weight up), sleeping well, and is incredibly active. We went to the farmer's market in Strathcona on the weekend, she had two back to back icecreams, lots of food and rode on the wooden horses for a long while. She spent a night playing games with Dad (Marino) at Larga House with the other patients from the Northwest Territories - had a great time - and is generally just a very alive and active three year old. So if any child is situated to get through major surgery, she is.
And for my friends from Yellowknife, the weather today was sunny and warm - +2C - and just a great day for getting outside and enjoying a good run (or at the very least, tolerating those hills). To Gramma and Grandpa, one of the benefits of surgery to remove the left tumour and kidney should be no more yucky kidney medicine (ramapril) - just imagine how much easier med time will be now!
Sheila
Friday, January 16, 2004 0:13 AM CST
Good evening (or morning, more likely). Shiri did very well during the balance of her tests yesterday. Today, we were told that the tumour board would be meeting today (Thursday) and that follow-up discussions would happen tomorrow. Our medical conference is set for 10:30 a.m. on Monday. In the absence of Grandma or Grandpa (or Jessi or Uncle Brian or the many people who have helped us get through medical conferences) to babysit, hopefully Shiri will spend some time at the Beach (hospital playroom) while we meet with the medical team. We will post the results as soon as we know and absorb them. We have been speculating (esp me) but that doesn't help a lot. All I know is that Shiri looks and acts healthier than she ever has. She is more alive, active, funny, than she has ever been. There really is not a sign that she has been on chemotherapy for three months. The results cannot be bad if her physical and emotional appearance is any judge.
In the meantime, we are basking in abnormally warm Edmonton weather. Today, it reached 5+ C and Shiri and I had a lovely walk (I use that word lightly - pushing a stroller up and down hills is quite a workout) by the river valley this morning and tonight she went out with Marino to Peter Pan, proudly announcing, as she came home tonight, that she was "Wendy".
Thank you all for posting your messages - and Harri - it is not good to hold your breath until you are blue!!! Esp in your delicate condition :)
With love,
Sheila
Tuesday, January 13, 2004 11:48 PM CST
Greetings from Edmonton, where it is (was) a balmy 3+ C today. Shiri and I arrived last night with Marino meeting us at the airport - he drove out two days early with the car so he could meet us and so we could have the car for all of Shiri's appointments - and the temperature was hovering around 0 C. Last night it rained and today was warm and sunny. Quite the departure from Yellowknife where it is approximately -30C, but without the freezing rain and slippery terrain. I'm not sure whether I like this type of weather :)
I will make this brief - today Shiri had her MRI, followed by a Cat Scan. The latter was a surprise. That had been scheduled for Thursday (I think) but moved up today. The other scheduled tests (renal ultrasound and lung xray), originally scheduled for Thursday, have been moved to tommorrow. We have been told that the reason for the move is that the Tumour Board, which meets every Thursday, wants to have all the information this week, so that they can discuss Shiri's case this Thursday rather than waiting an additional week. I think that is good news. ??
It was a long day. Shiri couldn't eat or drink upon waking up this morning in prep for the MRI. And she was the last scheduled out-patient of the day for an MRI because of the following Catscan and the fact that she was sedated. We were originally scheduled for 11:30 and she had her scan after 3:00 p.m. Imagine sitting in a waiting room for 3 hours with a child who has not had, and cannot have, food or water since waking up. She was great! Couple that with problems accessing her IVAD (her central line in which her medicine goes/blood gets taken) - the doctor had difficulties accessing it and had to "fiddle". Two hours later, after the MRI and Catscan, she awoke and had a Grade A temper tantrum which only abated about 45 minutes later when she had juice in her stomach and some food. It was quite the tantrum! And that is just fine. If anyone has an entitlement to it, she does.
It is nice being back in our Edmonton home. It feels like home right now because of what we are doing. We arrived to decorated hearts and flowers from our good friends, Liz and Jenny, who had stayed here on the weekend. Early Valentine's Day.
We may know more by the end of the week if the Tumour Board has all the information and reaches a consensus on Thursday. I'm so used to adding days to the schedule they give us, subtracting days is a bit unnerving. We will let you know. In the meantime, thank you all for checking in on us and for all your wonderful messages. Marino, Shiri and I appreciate them so much.
Did I say I would be short?
Sheila
Friday, January 9, 2004 11:55 AM CST
Good morning friends and family:
We received word yesterday that Shiri's MRI is scheduled for next Tuesday in Edmonton and her other tests will follow on Thursday so we will be leaving Edmonton on Monday. We expect to be in Edmonton for quite a while, as we hope that surgery will follow shortly thereafter. In many respects, it will be good to "get on" with this next stage. As good as it has been to be home in Yellowknife (and is has been great) there is a part of me that is disconnected from my "normal" (if there ever is such a thing) life and I just want to get on with fighting this battle. I'm glad we kept our place in Edmonton - it will be nice to return to a home-like environment instead of staying in a new place. Shiri's toys, books and clothes (not to mention more than a few teddy bears!) are all around the place and it will make being away from Yellowknife with a sick child so much easier.
Shiri has had a rough go of it this week. She has pretty much continually been vomiting since we returned from Edmonton. Her chemo on Tuesday was actinomycin which is fairly strong and has vomiting as a common side effect. However, given that she started vomiting a week ago, pre-chemo, and that she has not reacted this strongly to actinomycin in the past, we just are not sure what is causing her vomiting. Part of me wonders if we are being over anxious parents, but I don't worry about that for long. If Shiri were a normal kid, without cancer, I wouldn't think twice about an episode or two of vomiting but I know, from reading other parent's journals, how easily children can get so very sick when then are on chemo. The local hospital and Shiri's pediatrician have been great. We need a physical for the MRI (why, I don't know - Shiri has got to be one of the most examined children ever in terms of medical care recently) and her doctor is able to fit us in on really short notice. Everyone has been so kind and so accomodating of Shiri's needs. We really appreciate it.
On the personal side, when Shiri was diagnosed, I lapsed and started smoking again. There is a certain idiocy in starting smoking when one's daughter has just been diagnosed with cancer. I have now quit smoking and have started running again. Which feels great (and my legs can feel yesterday's run). I know that running will help get me through some of the rough part of the next few months.
Will post more when we know the results of the MRI.
Sheila
Wednesday, January 7, 2004 1:13 PM CST
When I last posted, Shiri had been experiencing nausea, diarrhea and dizziness for a few days. On Monday, the nurse in the hospital in Yellowknife confirmed our impressions that her abdomen seemed distended. We were fairly apprehensive about that, given our past experience. At the Stollery in Edmonton yesterday, her doctors also treated it with seriousness and ordered an xray. The staff at the Stollery are terrific and they really pay attention to parental concerns that are raised. They spend a lot of time with each child and the parents, making sure that they know everything that can affect a child's treatment. I cannot say enough about their care! It turns out that her distended abdomen is due to nothing other than constipation. The irony is that four months ago we took Shiri to the doctor, thinking she was constipated and discovered she had a massive tumour. Yesterday, our concerns were that the tumour was growing and it turns out to be constipation. Her doctors didn't give any indication about what they thought of her tumour (which was quite visible on the xray), however, want to deal with this issue first and go ahead with her scheduled scans next week. Her blood work was fine and Shiri had her 12th week of chemotherapy treatment yesterday. Scans are typically scheduled on this treatment plan for after the 6th and 12th week; in Shiri's case, because she hasn't had the tumours removed, her scans have even more meaning because they need to decide what type of surgery they will perform to remove the tumours - two partial nephrectomies or remove one kidney entirely and a portion of the other other kidney.
After a very very long day at the hospital, we went back to our Edmonton apartment briefly for a quick nap and then back on the plane to Yellowknife. It was a long day, starting at 4:30 a.m., leaving YK at 7:00 a.m. and getting back at 10:00 p.m. at night. I was amazed at how well she tolerated it, having only a brief nap in the afternoon. She remained fairly good humoured and active notwithstanding all the hours at the hospital, chemo and no sleep.
We head south again next week for scans etc... and a decision on surgery and will then stay down until the end of surgery and any planned radiation.
Today, for the first time, Shiri seems to be experiencing a fairly immediate reaction to her chemo yesterday, and is quite nauseous, making it difficult for her to keep her meds down (and difficult for mom as I have to keep readministering them until she keeps them down) We are planning a very quiet day as a consequence.
Thank you all for following Shiri's journey and for your thoughts and prayers. We are almost half way through the treatment roadmap for her form of cancer and the next 14 weeks are critical. We so appreciate your support.
Sheila
Sunday, January 4, 2004 8:36 PM CST
Good evening from Yellowknife and Happy New Year to everyone! The new year arrived very cold in Yellowknife - it has been amazingly cold for a few days which makes it much easier to stay inside and enjoy the last of the quiet time of the holidays.
Shiri's blood counts have continued to be relatively high, however, she had a bit of a bout with nausea for a few days. Her last chemo was almost three weeks ago, so I don't think it is from that. It might just be a stomach bug that she has picked up. For me, her nausea and vomiting was far too reminiscent of that weekend in September when she was so sick and we took her in to the hospital in Yellowinife - and shortly found out why she was ill. She just didn't have any room in her stomach to keep anything down because of the size of the tumour. So, I'm hoping it is just a bug!
We go in for blood work tomorrow and, assuming the counts are high (and they will be, I am confident), head to Edmonton for chemotherapy on Tuesday. Her chemo on Tuesday is another one of those heavy-hitting ones with side effects and right now, the doctors appear to be happier administering it in Edmonton.
Our next round of diagnostics (her first MRI!) will occur the following week and we are hopeful that we may be able to fly down to Edmonton and return the same day or early the next day for our last week home prior to her battery of tests, hopefully surgery to remove the tumour(s) in both kidneys and then a month of daily radiation. One last week home would be nice as I think the next stage of this journey will be at least two months.
There are so many people who have helped to make this Christmas vacation a wonderful one, for all of us. Thank you all so much for easing the burden of this time and making the days just that much easier.
Sheila
Tuesday, December 30, 2003 11:34 AM CST
Greetings from Yellowknife, Northwest Territories, and Merry Christmas to everyone. Shiri had a fabulous Christmas. As illustrated above, one of her favourite gifts was an umbrella (now the amount of rain we get up here is fairly slim - but she just fixated on the idea of an umbrella!). We saw a rainbow umbrella in the Stollery gift shop but things were so rushed on her last day of chemo, that I forgot to pick it up before we headed north. Sure enough, that was the only thing she really wanted. And finding an umbrella in December in Yellowknife is hard! Fortunately, Dad was able to scout one down and she seems quite content, although she did point out it was not the rainbow one :)
On Sunday, December 28th, Shiri was baptized in the Catholic Church. Apart from her reaction to getting her head wet (she yelled out "be gentle" "cover my eyes" - all a common reaction to medical procedures and baths), it was a lovely ceremony. Ed and Shannon Gullberg were gracious enough to agree to be her godparents - in hindsight, such an obvious choice. Shiri has been so close to the Gullberg family since her birth and she has now gained three godsisters in addition to wonderful godparents who will love and nurture her for years to come. We will post pictures of her baptism as soon as we can.
Finally, we went for her weekly blood work yesterday. Her counts remain very high! She is absolutely amazing how she tolerates such harsh chemo with so few side effects. She has not had the normal nausea, lack of appetite, mouth sores, etc.... so often accompanied with chemotherapy. We are so fortunate in her resilience and strength. Right now, as I type this, she is racing around upstairs playing with her toys - just exhausting mom in a wonderful way.
Take care and I wish for everyone the very best New Year - and most of all, that we rediscover and relish the small joys in life.
Sheila
Wednesday, December 24, 2003 1:49 AM CST
Good evening from an unseasonably warm Yellowknife. Two more sleeps until Christmas! Shiri continues to do well. We went into the Yellowknife hospital on Monday for blood counts and received the results today. Shiri's counts are all high, except for her neutrophil counts, and even those are not dangerously low. What that means is that we have less worries about exposing Shiri to other people who might be battling colds, etc... We were not too surprised at her good counts in that she has been very active, happy and has been eating very well (okay, except maybe for Mom's less than stellar cooking) since our return. We have been very fortunate in that Shiri has had very minor side effects, even after more than two months of chemo. Hopefully, what this means is that her little body has enough fight to help battle this disease.
She has been so happy to be at home. We went to my office last Friday for a little gathering after work. Surrounded by people who love her and playing with other children was wonderful. At one point, Shiri came up to me and said "Mommy, this is a great party". Shiri has also had a wonderful time playing with her sister, Jessi and just reaquainting herself with her Yellowknife homes.
For all of our family and friends, and for all of our new friends we have met through this journey with cancer, our fervent wish is for a happy and family oriented Christmas. There are families out there who have lost children recently - and I am thinking of Martine and Cameron - and for those families, I can only hope that there is some small measure of comfort in knowing how often you are in so many people's hearts, now and always. To our Wilms families, we check your sites daily, even if we don't always send a guestbook message, and we love to hear about the events of your days.
Merry Christmas to everyone.
Sheila, Marino and Shiri
Thursday, December 18, 2003 2:29 PM CST
Greetings from Yellowknife - we are home! Shiri continues to do very well and we are all just so happy to be home after such a long journey. Shiri and I flew up yesterday and Marino drove up from Edmonton, arriving not to long after us.
There are so many people to thank, but I wanted to mention one particularly lovely surprise that I understand many people in Yellowknife were "in on". Several weeks ago, my firm decorated a tree, with so much love, in Shiri's honour for the Festival of Trees (benefitting the Stanton Hospital Foundation). Air Tindi purchased the tree and donated it back to us!! We arrived home to a beautifully decorated house with Shiri's tree having a place of honour. I still have totally figured out everyone who helped (and I will!), however, I wanted to thank Air Tindi (what a beautiful, generous gift so keeping with the spirit of Yellowknifers), Paul Smith who delivered the tree, Loretta Bouwmeister who orchestrated a team of decorators, Bev Cameron for her cookies, Karen and Charles for making sure we had milk and basics at home and wonderful Aunt Sarah for her pointsetta. It was wonderful to come home to so many lovely surprises.
Finally, on the medical side, we have the report of Shiri's latest ultrasound on Monday. The report indicates that the tumours have not shrunk from her ultrasound a month ago (although it does say that there may be "questionable marginal shrinkage" in the left kidney), however, they are not growing. Shiri was off chemo for a period during her surgery so we are now hoping that it will kick in and reduce her tumours prior to our next round of diagnostics set for the week of January 15th. In the interim, she is tolerating her latest chemo well and is just happy to be home, surrounded by her own toys and sleeping in her own bed.
We look forward to seeing as many of you as possible over the next few weeks. Words cannot express how much we appreciate the outpouring of support that we have received from so many people.
Sheila
Tuesday, December 16, 2003 10:19 AM CST
We are heading home! After eighty days in Edmonton, we will be home in Yellowknife late tomorrow morning! After taking a bit of a dip last week, Shiri rebounded on Saturday, enough to enjoy the farmer's market and festival of lights. Her blood counts were high enough yesterday to allow for the administration of Doxirubicin and she has (so far, knock on wood) showed no ill effects from her chemo. We also had an ultrasound at the Cross and should have those results within a day or so.
We're home until her next chemo treatment on January 6th and are very excited about spending a few weeks in Yellowknife. Massive amounts of boxes and luggage later... I cannot believe how much we have accumulated. I came down with one large suitcase and one Shiri size suitcase and am going back with so much stuff! We are keeping our apartment in Edmonton as we expect to be back here for all of January and February while Shiri undergoes further diagnostics, surgery to remove the tumour and one or the other kidney and then radiation for the month of Feburary.
To all of our friends and family who have made this journey so much easier with your love and support, we thank you from the bottom of our hearts. We can never repay the support but we will spend a lifetime trying.
Sheila
Friday, December 12, 2003 4:14 PM CST
Good afteroon, everyone. Just an update on Shiri - she had chemo on Monday (vincristine) which is typically a fairly mild chemo but this time, it seems to have taken a bit of a toll on her. For the first time, she is very tired and pale and sleeping a lot. Her dad and I are both worried about her. Given that we have a difficult chemo on Monday (doxirubicin), subject to her counts being high enough to allow her to have it, we've decided not to return until Wednesday just to give her a bit of additional time to recover before we travel. She sailed through chemo for two months so I guess it is not surprising that the effects would be cummulative and are finally starting to show up and take a toll on her little body. (She is, however, going out to the water park at WEM with her dad this afternoon so she is not entirely down for the count!)
Marino, Shiri and I are excited about coming home - even with the cold temperatures and we feel that this Christmas will be special like no other.
Take care and we'll update again soon.
Sheila
Tuesday, December 9, 2003 9:03 PM CST
We are home! At least to our Edmonton home! Shiri rebounded very well from the weekend and we were discharged today after she had her chemotherapy treatment (vincristine). We are so happy to be out of the hospital and both of us are looking forward to a restful night. We came home to a beautifully decorated Edmonton home, thanks to our friend, Liz, who decorated the fireplace with lights and Christmas ornaments.
We met with Shiri's oncologist today. As we suspected, Shiri's biopsy of last week was inconclusive. Only one percent of the cells extracted from the two biopsies were cancer cells consistent with Wilm's tumour; the balance of the cells were normal kidney cells. Unfortunately, the amount of cancer cells were insufficient to allow for an accurate typing as to whether they were favourable or unfavourable histology. We also discovered that the tumour in her right kidney is not encapsulated - it does not have a membrane and cannot be felt by hand. All of this is a bit of mystery as something that is approximately 1/2 inch to 1 inch in diameter is showing up in her scans.
The plan at this stage is to continue with her chemotherapy and reassess in January with surgery following thereafter (some type of surgery to remove tumour/kidney - which one yet, we don't know). At the specific request of her surgeon, Shiri also has an additional ultrasound next Monday (the 15th) at the Cross. Shiri ends her 12 weeks of chemotherapy on January 6th, so her reassessment (more scans) will be after that date.
The big news today, apart from being home, is that we will be able to return to Yellowknife earlier than expected. Shiri has a heavy dose of chemo next Monday (doxirubicin and vincristine) and an ultrasound at the Cross that afternoon and then we are able to go home to Yellowknife! I'm not sure if we will travel on the 16th or 17th, but subject only to her counts being down and having to postpone the Dox treatment, we will be home by mid-week next week. All of which is terrific and I have every confidence that Shiri will continue to be healthy over the Christmas holidays. The staff at the Stollery are tremendous at giving us lots of assistance and guidance in terms of managing her health care in Yellowknife and I know that we will get excellent care in Yellowknife if we need it (it's almost like we are back at discharge training school and those early days. Now, I might be a bit fanatic on handwashing... :) but overall I'm sure we will just have a normal Christmas and continue the traditions we have established in early years.
The support of friends and family who have signed the guestbook while we were waiting for this news has been tremendous. In many ways, I wish the news were more definitive, but the fact that they have not ruled "in" unfavourable histology leaves all sorts of other options open and gives lots of room to be positive about the outcome. So thank you all so much for reading this missives and for being there for all of us during this time.
Home soon!
PS
ABOUT THE PHOTOS
As this site is used internationaly, with thousands of user families there are only four photos (including home page) allowed at a time. There have been 53 photos rotated through these past 74 days. The journal is held so you can read history, photos are not due to space requirements. Ultimately, I will link in a photo album on another server, in the interim photos are rotated two to three times per week.
Marino
PPS - Journal Postings and Photo rotation may not be as frequent over the next three weeks as we enjoy, savor the days of Yellowknife home. Your guestbook greetings will continue to be welcomed and appreciated and invite your continued visit. The site will be continued to be maintained and used more actively in January / February as all three of us return to our hospital oriented lifes. Thank you, and it is my hope that the spirit of Christams embraces you all.
Marino
Monday, December 8, 2003 6:26 PM CST
Shiri had a bit of a setback and we are still in the hospital. Her fever continued to spike Saturday and Sunday, so she had to come back to the hospital after a brief (hour long) respite on Sunday. She has also had a bit of awful diarrhea. Having said that, around noonhour today, she just perked right up and was literally running through the halls of the hospital and has completely tired us out (as well as tired out our good friend, Liz Wyman, who is visiting and helping mom and dad). I expect she is over whatever bug she had and that we will be released tomorrow.
We have not received formal pathology results yet and have a conference tentatively scheduled for tomorrow afternoon. However, her surgeon mentioned last Thursday that the majority of the cells biopsied from her right kidney were normal kidney cells. He felt that they got the biospies from her tumour as they were guided by an ultrasound, hence, the existence of normal kidney cells in a tumour is puzzling. Some slides were still out though for further analysis. Today, we were briefly told that Shiri would be back on her chemo routine today or tomorrow and that they would schedule another ultrasound as close as possible to our Christmas departure date. Again, that suggests (but it is only speculation until we meet tomorrow) that the biopsy results were not definitive either way. We will know more tomorrow (I hope). Even if it is a mystery, we would still like to know what sort of scenarios would result in normal cells being found in what appear to be a tumour (especially given that her second biopsy confirmed cancerous cells of the favourable histology kind).
So, big day tomorrow. Chemo, medical conference and home!
Sunday, December 7, 2003 2:52 PM CST
Shiri continues to recover very well and is completely off morphine. We were to have been discharged today but her fever spiked tremendously last night (41.5C - which is terrifying). It came down quickly throughout the night and she is doing well today. Her white blood counts remain good which means she doesn't have an infection. They have taken blood cultures and urine samples and, assuming those all come back fine, we should be home (Edmonton home) tommorow! Oddly enough, even her high fever, we both had a great night's sleep. Because they had "unhooked" her from her lines, and because she was "lonely", I was able to cuddle up and sleep with her (which is quite a squeeze in the hospital bed!) and we both slept so well.
We will find out more early this week about the continuation of her chemotherapy and when we can return to Yellowknife. Soon, I hope. We all miss Yellowknife home so much and Shiri constantly mentions coming home.
Sheila
Thursday, December 4, 2003 8:10 PM CST
Shiri continues to do very well today. She was up and about quite a bit and spent 90 minutes at one of her favourite places in the hospital - a place called "the beach" (children's playroom). She didn't want to leave! Her morphine dose is being reduced today (for which I am happy) and she appears to be sailing through her latest surgery. No pathology results yet but then, we don't really expect them until sometime next week, given how important it will be to have accurate pathology with respect to what is happening in her right kidney.
I read Eugene Meehan's newsletter today with a tear in my eye (now, I always read Eugene's newsletter!). I wrote to Eugene because (1) we are friends and (2) I know that he publishes interesting/touching/funny websites in his newsletter and I wanted him to know about Caringbridge. I am overwhelmed by the response from friends, old and new. A few points. Caringbridge.org and websites like it perform an invaluable function, often with very little funding (as is evident from their webpage). They make it possible for parents like us to keep our friends and family up to date on matters, without incurring quite the emotional toll of repeating things over and over again. This was particularly so in the early days when it was virtually impossible for me to talk to anyone about what was happening because it was simply too difficult to vocalize. So, if you have the abilty to support such organizations, please do because they perform such an important function (and one I did not know about before this journey).
Eugene also mentioned the power of the internet and a little girl named Martine. Through the net and a Wilms' parents support group, I met Martine's mom, Marianne, who lives in Norway (Martine's website is http:/home.no.net/redz/index.htm) We connected with each other in a strong way because both Shiri and Martine had the same rare manifestation of Wilms - bilateral (in both kidneys) and metastatic (spread to other organs) at diagnosis. The only difference was that Martine was initially diagnosed with favourable histology and that diagnosis changed to unfavourable histology after her first surgery. Our doctors here in Edmonton told us that Shiri's manifestation of Wilms was unusual, Marianne confirmed this by telling me that she knew of no other child like our respective daughters. We struck up an email connection to keep abreast on the progress of our children. Early Saturday morning, I emailed Marianne to tell her that Shiri's path might be even more intertwined with Martine's because of the possibility (as yet not established) that her histology may be unfavourable. A few minutes later, she emailed me back to tell me that Martine had earned her angel wings that morning, very suddenly, and without pain. Martine was four years of age. Marianne told me later that Shiri was "her girl, fighting the battle that Martine didn't win". Martine is now playing with Lowri (Harri's daughter who died a year ago) in heaven and I pray for the families of both girls, whose mothers have been so supportive and helpful to me during this journey. All because of the power of the internet to allow us all to connect.
Sheila
PS
ABOUT THE PHOTOS
As this site is used internationaly, with thousands of user families there are only four photos (including home page) allowed at a time. There have been 36 photos rotated through these past 68 days. The journal is held so you can read history, photos are not due to space requirements. Ultimately, I will link in a photo album on another server, in the interim photos are rotated two to three times per week.
Marino
Wednesday, December 3, 2003 6:45 PM CST
Shiri is doing so well today. Her recovery this time is very different from her last major biopsy when she came out so scared that she wouldn't move a bit in case it hurts. This time, she seems to have a better idea of what to expect (poor little one) and is more comfortable moving a bit. We were able to get her up in a wheelchair today for over an hour to play in the playroom. She didn't want to leave but she was getting tuckered out and both she and I needed a nap. This is quite a contrast to her first surgery when she was reluctant to go anywhere for the longest time.
She is still on fairly heavy morphine although I expect they will start to reduce her dosage soon. I also expect, based on how well she is doing today, that her recovery time will be shorter this time than last. Her sister, Jessi, comes to Edmonton in two more sleeps for a swim meet and we are all looking forward to seeing her Friday morning.
Sheila
Tuesday, December 2, 2003 10:15 PM CST
Shiri made it through her surgery today with flying colours. Her surgeon, Dr. Evans, said she glared at him when she awoke :) She did not, however, glare at mommy and daddy this time. She is a bit uncomfortable but is sleeping with the aid of painkillers. We were told that they got two good cell samples so now the waiting game is on for the pathology results. They were not able to "scoop" out the tumour in her right kidney as it was too deeply imbedded and it would be too risky. Similarly, her left kidney remains too large to safely excise the tumour. No suprises there for us although it would have been nice to have a miracle occur. I expect we will be in the hospital until some time early next week, and then to our Edmonton home for continuation of her chemotherapy until we can come home at Christmas. We can all hardly wait. In the meantime, the next few days will be all about getting Shiri up and active so she recovers as quickly as she can. By the weekend, we are hopeful that she will be back to her normal, happy self. Thank you everyone for your wishes and prayers on her website. It means so much to all of us.
Monday, December 1, 2003 4:25 PM CST
We are back at Ward 4E3 at the Stollery Children's Hospital. Shiri's biopsy is scheduled for around noon hour tomorrow. We had a most informative meeting with her surgeon and understand much more about the location of the tumours and how problematic the tumour in her right kidney is because of its central location (right on the renal vein).
Shiri had a grand time at the Kids With Cancer Christmas Party at the West Edmonton Mall and particularly has enjoyed all of her visitors - and she remains active and positive.
Friday, November 28, 2003 8:16 PM CST
Once again, matters relating to Shiri's treatment have changed significantly from our conference on Wednesday. On Wednesday, they had decided to remove her left kidney and the associated tumour. On Thursday, the Tumour Board met and there was extensive discussion about the viability of that plan given that her right kidney (with a small 1 inch tumour) is not responding to chemotherapy. We met with Shiri's doctor today who indicated that the consensus reached after much discussion was to perform a core biopsy of her right kidney on Tuesday (if you were like me, and think that a biopsy is a minor procedure, in Shiri's case, it is not - she has a huge scar from her first biopsy). The purpose of the core biopsy is to get a larger cell sample for analysis. Six weeks ago, Shiri's right kidney biopsy showed favourable histolgy (cell structure - a "good" type of cancer, responsive to treatment). The concern is that the tumour in her right kidney may be anasplastic overall - unfavourable histology - and that the last biopsy result was not reflective of the true cell structure of the kidney (it is rare for a tumour to be 100% anasplastic - a part of it might have been favourable, with other parts unfavourable - which would then place Shiri in the category of having Wilms with unfavourable histology). The pathology results will take approximately a week or more to receive and review. If her right kidney is unfavourable histology, which they suspect because there is no other reasonable explanation for it not responding to chemotherapy, unlike the left kidney, then the right kidney will most likely have to be removed in January. Even though the tumour is smaller, the cells are much more dangerous, likely to spread and more resistent to treatment. Accordingly, they are now trying their very best to save the left kidney - the one we all thought for sure would have to go because of the massive size of the tumour - in order to leave her with one or a part of one kidney.
There is a small chance that the tumour on the right kidney can be safely cut out either on Tuesday or in January. Apparently, it can be dangerous to muck about though with these types of tumours in case they spill into the abdomen (particularly so with unfavourable histology).
In essence, the plan is for the biopsy Tuesday, confirm the pathology of the right kidney, maybe cut out some of the tumours if it can be done safely, continue with chemotherapy until Christmas and then return to Edmonton after Christmas for another major surgery, after diagnostics, to remove the remaining infected part of her left kidney (hopefully, that tumour will continue to shrink and she will have more kidney function in that kidney by then) and likely her right kidney. After recovering from surgery, she will then require a full month of radiation (concurrent with chemo) to her lungs and to her abdomen. We have been told to expect for her to be in Edmonton for all of January and February.
Obviously, this is difficult news, especially if her histology is unfavourable, but Marino and I both feel that they are making the right decision to try to save as much as possible of the left kidney. According to her doctors, the tumour has shrunk close to 50% and she has 40% of renal function in that kidney. That is really significant and if that organ can be saved, we want to save it. We have also learned that children can live on less than one full kidney, as there cells are continuing to grow and are able to accomodate changes like this.
So it continues to be a very long journey for Shiri. Instead of returning to our regular lives in Yellowknife at Christmas, we will simply be home for a visit.
Shiri is doing remarkably well and remains so happy and animated. Uncle Eddie and Aunt Sarah visited last night and she had a great time with them. Lots of laughter and Uncle Eddie was pressed into action swinging her by her feet to and fro and back and forth.
It will be a good weekend. I have a friend visiting for 24 hours from Halifax (what a friend to come out for a day!) and this is my mother's last weekend here. We are going to try to get out as much as possible, enjoy the Kids Cancer Christmas Party at West Edmonton Mall, and just keep on praying that Shiri's spirit continues to remain strong and positive to get her through the weeks ahead.
Thank you all for signing the guestbook. It is remarkably heartwarming to log in and read such wonderful messages from friends and family all over Canada and the world. We feel very far away from home, but we never feel that we are far from your thoughts and your prayers.
Sheila
Wednesday, November 26, 2003 3:20 PM CST
We met with Shiri's oncologist today after her 8th chemotherapy treatment (vincristine - fairly mild drug) and discussed the results of Shiri's scans last week. On September 30th, she was diagnosed with stage 5 (bilateral) Wilms and, unusually, stage 4 becuase of the metastatic involvement in her lungs. On September 30th, her left kidney was 13 cm x 9.4 cm x 12.5 cm (I mapped this out on paper - it is huge when one considers she is only 33 pounds and 38 inches tall). After six chemotherapy treatments, her left kidney is now 9 cm x 7 cm x 10 cm. There has been no change in the size of the tumour in her right kidney (it remains at 1.3 x .9 cm). The scans showed her lungs have improved - there initially were five lesions, now there are only three lesions and those have reduced in size - as the doctor put it, they have shrunk but are not gone.
Dr. Stobbart has booked Shiri for surgery on Monday, December 1st. The type of surgery will be confirmed after consultation with the Tumour Board and her surgeon, however, it will likely be a nephrectomy to remove her left kidney and the tumour. Dr. Stobbart also indicated that he is consulting with Shiri's surgeon to see if the lesions in her lungs can be safely removed at the same time. When we asked why surgery rather than continued chemotherapy, he indicated that it was his belief continued chemotherapy would not shrink the tumour in the left kidney any more than it has already shrunk. The surgery is major surgery and we anticipate that, even with no complications, she will require 10 days recovery. After that, the doctors want us to stay until Shiri is well enough for her Doxirubicin chemotherapy treatment - originally, without surgery, she would have received that drug on the 10th of December. We now anticipate that she will receive this one on approximately the 20th of December, again, assuming she recovers well from surgery. Dox is a strong chemo drug and one which they want to administer here in Edmonton rather than Yellowknife because of its potential side effects.
Additionally, the scans revealed lymph node involvement. While this is not surprising given that her cancer is metastatic, it is still upsetting news. The surgery will remove the affected lymph nodes. Finally, the surgery will also confirm her histology. Her original biopsy indicated that the histology was favourable. The type of histology is critical to her long term prognosis. They will do pathology of the entire left kidney once it is removed to (we hope) confirm that the histology remains favourable and that no portion of the affected kidney has unfavourable histology. We are praying that the pathology confirms favourable histology throughout as this is very important.
Given all of the above, we have been told to expect to go home no sooner than December 22nd, assuming everything goes well with her surgery. Just in time for Christmas!
Shiri continues to do well. She is paler than normal and more readily fatigued, but she is still running circles around all of us. We have a Kids with Cancer Christmas Party scheduled for this upcoming Sunday and then Shiri will either be admitted for surgery Sunday night or we will go into the hospital first thing Monday. We really did not want her to miss the Christmas party. We will have some access to email but obviously won't be at our apartment for telephone calls.
On a final note, my office (Lawson Lundell) is sponsoring a tree for Shiri for the Festival of Trees this weekend.
Many of the children of the firm have made decorations for the tree. We hope the tree is auctioned off for lots of money in support of the Stanton Hospital Foundation. It is such a worthy cause and we wish we could be there for it.
We will update as soon as we know exactly what type of surgery Shiri will have on Monday. In the meantime, please do wish us luck over the next few weeks.
Sheila
PS - The cover picture is of Shiri with her friend, Sarah Gullberg, flying planes at the West Edmonton Mall. Thanks Sarah for coming and playing with Shiri!!
Thursday, November 20, 2003 5:02 PM CST
As Sarah Kay put it to me recently, medical matters have timeframes of their own. We were just told that not all of the results are in and that the medical conference will now be next Tuesday or Wednesday. We will now be told the time on Monday. Our coordinator did say that the results of the abdominal ultrasound indicated that the tumour on the left kidney had shrunk marginally - the report indicated it was initially 13 cm x 9 cm and while the report said it appears to have shrunk, it didn't give (according to the coordinator's verbal readout) the "new" size. The report also indicates that there has been no shrinkage in the tumour in Shiri's right kidney. It concluded that the results would need to be confirmed by the cat scan which they are still waiting for.
So we wait. In the interim, Shiri is doing well. She had a heavy dose of chemotherapy yesterday (two drugs - vincristine and, only for the second time, actinomycin) and slept much of the afternoon and evening. She was sick only once and appears completely recovered today although she has yet to eat today (which is fairly standard post-chemo).
We are disappointed that we have to wait until next week. We will keep you all posted as soon as we know more.
Sheila
PS - This experience with time delays has made me vow always to keep deadlines I give to clients for the preparation of materials! Or, as Don Cooper used to teach us, get the client's materials ready early and impress the heck out of them. Guess there is a silver lining to this delay.
Wednesday, November 19, 2003 4:39 PM CST
It has been a roller coaster day. All of Shiri's necessary diagnostic tests were done Monday and Tuesday at both the Cross Cancer Institute and the Stollery. We had been told last week that Shiri would have a "chemo holiday" in preparation for possible surgery - they do not like to administer chemotherapy too close to surgery as it suppresses the immune system, making it more difficult to recover from surgery. This morning, we received a phone call asking us to bring Shiri in for her regular Wednesday chemo session. We were told that her doctor would meet with us and explain why chemo was now "on". Of course, that caused us considerable consternation as my first thought was that they had received the results and that they had decided the tumours had not shrunk sufficiently to allow surgery. Shiri picked up on my distress and was not as cooperative as she normally is in getting dressed. We whipped on her Emla cream (she calls it "magic" cream - it freezes the skin around her central line where chemo is administered and blood drawn) and raced up to the hospital. We then met with her doctor, Dr. Stobbart, who told us that he didn't yet have the results but that any surgery would not be until late next week or early the following week (December 1st). She will definitely have surgery - the scan results will decide if the surgery will be another biopsy or complete surgery to remove the tumour and infected kidney. He decided to administer her regular chemo as there will be time between today and her anticipated surgery date for her body to recover and her counts to remain high. The blood work also showed today that her counts are still high and that the chemo has not resulted in her immune system being bottomed out. Dr. Stobbart also examined Shiri. He indicated - HURRAY - that her tummy today is a very different tummy than the one he examined over seven weeks ago when this journey first started. In addition, her blood pressure continues to go down (it was initially sky high as a result of the huge size of the tumour on her left kidney and has been steadily reducing - more so this past week) and that is a positive sign as it likely means that the tumour is shrinking in size and places less pressure on her veins. Finally, he was amazed at how absolutely good Shiri looks and commented a number of times very favourably on her physical appearance and wellness. Even though he didn't have the results available from her scans, all signs are that things are going well! So we went from real concern about the reason for this rushed chemo session to feeling very positive about all these indicators although it also means that our return to Yellowknife will be delayed (we were both hoping to be back around the first week in December - she will not have recovered from whatever form of surgery she has by then).
The next step is to wait for the scan results to be reviewed by Dr. Stobbart and her surgeon, and possibly the tumour board, and then for a meeting with us to decide what type of surgery will occur in a week or two. That meeting will happen very soon and we will then know the date of her surgery, the likely recovery time, and know when we can come home. In the meantime, we feel very positive about how Shiri is looking and acting and are confident that the scans will show that the chemotherapy is working. There is just too much evidence for it not to be positive!
Grandma MacPherson is here and Shiri is keeping her very busy. We expect this week and the next to be relatively quiet ones which is good after the hectic nature of Shiri's birthday celebrations. In the meantime, thank you all for signing our guestbook and for sending so many supportive emails and cards. And for the gifts for Shiri. I have tried to acknowledge the gifts by thank you notes when my brain is functioning, but I am woefully behind. There are days when my mind cannot function beyond dealing with Shiri and the impact of her cancer. Additionally, we have saved some gifts to give to Shiri during difficult procedures as a bit of a treat to her and a distraction from some of the tough things she must endure. So a number have not even been opened, but that is not because they are not appreciated - we just didn't want to overwhelm her! Thank you, all.
Sheila
Tuesday, November 18, 2003 8:51 AM CST
Good morning from Edmonton. Shiri had a spectacular birthday party on Sunday - dressed in red velvet and faux fur (her diva outfit!), she was a very excited little princess. She was surrounded by children, friends, family and lots of noise and activity at the West Edmonton Mall party site. It was rushed and hectic (at least from an adult perspective), however, she was one happy little girl. We had a quiet family dinner (and more presents!) last night to celebrate her "real" birthday. We will post pictures of her party as soon as we get them on cd and will try to rotate them as often as we can.
We have been so lucky with our friends and family who have come here or been in contact via email or the guestbook. Your presence has illustated to me how important family and friends are in our lives. Last Friday, I was feeling at the end of my emotional rope and today I feel much more postive and confident of good results for Shiri this week. While I know that this journey is a long one, and it is a rollercoaster of so many emotions - fear, hope, pain, laughter, most of all love - right now, we are all optimistic. Shiri continues to do well - she is a bit paler than normal, but otherwise active and healthy - and I now believe that her external appearance will be reflected with positive results this week. So much of that positive attitude, for me, is because of our friends and family, and even friends we have not yet met. There is a little girl in Norway, Martine, who has the same unusual manifestation of Wilms as Shiri - stage five but also metastatic at diagnosis - and connecting with her mother, sharing information, and supporting each other has been important for me.
We had an abdominal scan at the Cross Cancer Institute yesterday and today are scheduled for more tests. We should know the results by Friday and will immediately let our family and friends know through this website. In the interim, Shiri remains happy - yesteray, she was running and skipping through the Cross! - and we are looking forward to a reasonably good week while we wait for the results.
Sheila
PS - for those of you that don't know, the front page photo is of Grandpa MacPherson and Shiri at the "Beach" - a wonderful play area at the Stollery Children's Hospital.
Saturday, November 15, 2003 3:43 PM CST
Where many this weekend are enjoying Grey Cup Festivities, Shiri celebrates life, and her birth. She has a short repreive from Chemo as early next week she will undergo diagnostics to evalute the effectiveness of her treatment thus far. From this diagnostic imformation shall be developed the next phase of her treatment protocol by the end of the week. This weekend, for Ms. Shiri - medical concerns are in the background in her celebrations. On Grey Cup Sunday, Ms. Shiri enjoys a special birthday party in the West Edmonton Mall; The party is a "Blues Clues" theme as it is her current favorite educational television / video program. On her actual birthday, she has an eighty minute diagnostic session and an intimate family celebration in the evening. Ms. Shiri has the unusual experience of having both Grandmas, both sisters, both parents and a host of friends celebrate with her.
Mom and Dad both are still a little "brain dead" and we appreciate all that assist us with a special event such as this and many other pragmatics of living. In this place, this is a very special birthday for all of us.
We thank, and gratefully acknowledge the help of Charlene from Hub Photo, and her friend Kim for putting the party together. A thank you to Julie Snee at the West Edmonton Mall. Thank you to all for support, prayers, well wishes, greetings.
We shall update this journal with new information as soon as it is available to us.
Marino
Wednesday, November 12, 2003 2:32 PM CST
Good afternoon, everyone - and a big THANK YOU for all the wonderful messages. Grandpa (Dad)- glad to hear you arrived home safely. Shiri misses Grandpa! Shiri continues to do well - she had her sixth chemotherapy treatment today. The blood counts were not available by the time she had finished chemo, so I am waiting for the clinic supervisor to phone them in to us so we can continue to track them. She looks good, has lots of colour and energy, consequently, the nurses think her counts likely remain quite high. Which is great. We have a "chemo holiday" next week while Shiri undergoes her tests and we await the results of them - the doctors don't want to give her chemo if the results indicate that she should have surgery soon. We were told today that the Tumour Board meets on Thursdays, and the results will likely be reviewed by them, so it will either be late next Thursday or even Friday before we know the results and what the future will hold for us and for Shiri for the next little while.
In the interim, it is a good thing we are occupied with preparing for Shiri's birthday party. Many people have been helping us and we are hoping to have a very special party for her at the West Edmonton Mall. Grandma MacPherson and Jessi, Reasha and Daddy will be here as well as other special friends and relatives.
Thanks to everyone again. Yellowknifers truly are a wonderful group of people and we have many reasons to be grateful.
Sheila
PS - the oncology clinic phoned in her blood counts results - I hung up the phone, checked with last week's counts, and said "odd, they are identical" - all four values. They are supposed to be going down. Marino checked with oncology, sure enough, the lab had sent up the wrong week's results and the real results do show a decease from last week's level. Lesson learned - know what is going on and question things if they don't feel right.
There have been a few requests for our tempoary Edmonton mailing address:
Sheila MacPherson
901
10649 Saskatchwan Dr.
EDMONTON, AB. T6G 6S8
Marino Casebeer
1003
10649 Saskatchewan Dr
EDMONTON, AB T6E 6S8
Saturday, November 8, 2003 4:55 PM CST
Good afternoon to all of our friends and family. It is a cold and sunny day here in Edmonton. Shiri continues to do well this week - amazingly so. Grandma Casebeer and Reasha are visiting so the household level has been active which gives her parents a real break!
We have changed the pictures on the website. The main page is a picture of Shiri and I taken with one of her oncologists - Dr. Dussei - during the halloween rounds at the hospital. The first picture in her photo album is Shiri with one of her favourite nurses, Dawn, who was her discharge nurse. Dawn also taught Marino and I all about discharge issues and caring for Shiri outside of the hospital (we had to go to discharge school with her and another nurse). The second picture is of Shiri carving a pumpkin at a wonderful play area in the hospital called "AT the Beach" - one of our favourite places. The third picture in the photo album is Shiri taking one of her sessions of chemo (October 29th).
We are just waiting now. Shiri has one more chemo treatment this Wednesday and then on Monday, November 17th and Tuesday, November 18th, we are off to a battery of tests at the Cross Cancer Institute. The doctors will then schedule a medical conference after they have reviewed the results - hopefully, Wednesday or Thursday of that same week. Patience has never been my strong suit and I am anxious and somewhat nervous about this meeting. We will know then if the chemo is working in her kidneys and what the next course of action will be (I'm hoping that the chemo will have shrunk the tumors sufficiently to allow surgery to remove them). Other outcomes are continued chemotherapy if the tumors have not sufficiently shrunk. Marino and I discuss the possible outcomes but it is all just speculation; until we actually have the results, we just do not know what our future will hold after the week of November 17th. Our three week lung xray was positive re the size of those tumors, but her abdomen remains large - which the doctors say we shouldn't be surprised about as this tumor has a strong membrane. In other words, the continued size of her abdomen doesn't mean that the chemotherapy is not working.
See what I mean about patience not being my strong suit? I want answers now and am doing a lot of my own research on the internet.
Shiri's birthday is on the 17th of November. She will be three then. As she has medical tests of that date, we are planning a Blue's Clues party at West Edmonton Mall on the 16th. Her sister, Jessi, is coming down from Yellowknife for it and we are very excited about that. Next weekend will be a big one for Shiri!
Thank you all for logging in. We miss Yellowknife and will try to update this journal and rotate our photos regularly so that you have a glimpse of our life here in Edmonton.
Wednesday, November 5, 2003 9:37 PM CST
Shiri had her fifth chemotherapy treatment and continues to respond very well to the chemo. She is (regretfully) becoming quite the pro at assisting with the insertion of her line and helping the nurse throughout the process. All of the medical staff speak very positively about how she looks and her external appearance is reflected inwardly - her blood counts remain high for now which gives her the strength to fight off infections.
Sarah Kay visited yesterday and today (Auntie Sarah) and it was like an early Christmas! The excitment level was fairly high in our household. Sarah brought down warm clothes for all (we didn't think of things like winter books when we left), a webcam so that Shiri could talk and see her sister Jessi (they had a great conversation tonight), mail and a lovely scrapbook prepared by friends under the capable direction of Linda Whitford. We will spend many days making our own pages of the friends who have visited Shiri during her journey.
Grandpa MacPherson is also visiting for the week and has been kept busy by Shiri who has completely captivated him. Marino and I remain overwhelmed and so grateful for the love and support of our friends and family. We are convinced that trying to create a "normal" happy loving family home for Shiri is contributing to her good health and helping her get through this difficult time.
Thank you all for signing the guest book. It means a lot to us to log in and read your messages of hope.
Monday, November 3, 2003 6:12 PM CST
It has been thirty seven days since the sudden dramatic change in Ms. Shiri's world and our world as well. Although we have set up this site, we have not had opportunity to do daily journal entries, so today is a summary. We have kept a kind of journal which we started during our early dysfunctional in shock days; and will use that to add entries as time permits. More than a month ago Shiri was diagnosed with an advanced stage of Wilms Tumor(kidney cancer) and began a treatment plan. The treatment involves chemotherapy drugs. She has her chemo on Wednesdays in the Outpatient day ward of Stollery Childrens Hospital. Her status changed with a discharge to home care out patient on October 17th. Since than she continues her diagnostics as well as recreational activity including Kids With Cancer halloween party (group shot in photo album) and another halloween party on her ward including a hospital trick and treat trek.
Her next major assessment is on the week of her birthday, November 17. We are anticipant of positive progress. The next phase of her treatment protocol will be developed at that time. She recently had an xray of her lungs. The xray indicated the tumor deminished in her lungs from five cm to one point eight cm. Conventional xray can have some camera projection distortion so this still will need to be verified by other diagnostics. Her blood pressure with the assistance of a kidney medication has been steadily returning to normal and is approaching the threshold where medication can be withdrawn. She has been in good spirits (although getting more homesick) and seems to be improving.
We are all getting a bit homesick and look forward to our Yellowknife return. It is hoped the majority of her treatment and monitoring including chemotherapy can be done in Yellowknife. Thank you for your prayers, thoughts and support. Shiri, Sheila and Marino
Sunday, September 28, 2003
Today, we took Shiri to the Emergency Department because she had been continually vomiting since Thursday and her dad and I were worried about her distended abdomen. Apart from vomiting, she seemed relatively normal and her usual self, although somewhat more lethargic than normal. An xray was done and an hour later we both saw the massive tumour in her abdomen and two little tumours in her lungs. We were shocked and devastated. Shiri was admitted to hospital that night and we were told that we were all flying to Edmonton in the morning for an appointment with the pediatric oncologist at Stollery Children's Hospital. Mom and Dad shared caring for Shiri, alternating so that we could go to our respective homes and pack for the trip south.
Monday, September 29, 2003 8:59 AM CDT
Shiri Casebeer MacPherson is admitted to Stollery Children's Hospital Oncology Unit on referral from Stanton Yellowknife Hospital.
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