Happy 6th Birthay Baby Girl...
Today would have been Grace's 6th Birthday. After having only shared 2 birthdays with her while she was alive, and now this is the fourth without her alive, you would think that this day without her would feel more like the "norm", yet it doesn't. My heart aches missing Grace everyday, but today my grief is overwhelming. I'm so grateful for Eli, Naomi and Ian who carry me through days such as these. Thank you to my family and friends who continue to remember Grace and live differently as a result of being touched by her life.
Last month I received a letter from one of Grace's oncologist. This oncologist we only met with once. It was towards the end of Grace's treatment, post bone marrow transplant and shortly after her second brain surgery. For those of you who followed Grace's Blog, you may remember that she always had a "spot" on her brain post the resection of her first tumour. This spot remained stagnate for months through rounds of aggressive chemo. Therefore the decision was made to proceed with Grace's bone marrow transplant without doing exploratory surgery on this spot, which was in conflict with Grace's treatment protocol that suggested all suspicious "spots" be investigated prior to bone marrow transplant. This decision was made because the physician's caring for Grace felt so strongly that it was not malignant (suggesting it was not missed at the time of her original resection) but simply scar tissue as a result of the surgery. Ian and I agreed, hoping to minimize Grace's side effects post treatment and not expose her brain to a second major operation. We proceeded with the bone marrow transplant. Then post bone marrow transplant something changed that led Grace's physician's to now want to resect this spot and biopsy it. It was explained to us that this would be the only way that they would be able to determine what was the next step in Grace's care. This really caught Ian and me off guard. We didn't think there was a "next" step. We thought Grace's care was complete since we were under the impression that she was cancer free and at the end of her treatment protocol. We agreed to the second brain surgery and then biopsy of this spot. What were our options really? During the days following this surgery we received daily updates from the lab with regards to whether or not the biopsy was positive (malignant - cancer) or negative (benign - not cancer). For 6 days we received reports that the biopsy was benign! Day 7 we would receive the final report. The oncologist who wrote us this letter we met for the first (and only time) on day 6 of these biopsy reviews and she communicated to us that the biopsy continued to prove benign and she expected nothing to change in the next 24 hours when the final review was presented to us. Ian and I celebrated, under the impression that Grace was definitely cancer free and at the end of her protocol and we were simply days away from returning home (after living at Sick Kids for 8 months) with a "well" baby girl to love and enjoy. We spent the evening talking about all the simple pleasures we so looked forward upon our return to home, most notably all going to bed and waking up under the same roof, together as a family. Well... on day 7 the final biopsy was presented to us and malignancy was found in the final 24 hours of testing. Although we were hopeful at the time, the threat to Grace's life could not be ignored. Ian and I were devastated. We knew Grace's post bone marrow transplant body could not endure the level of chemo needed to attack this kind of malignancy. Her physicians were hopeful, reassuring us that her scans were now completely clear, so the entire "spot" was resected in the second surgery, and they would send her home on some low dose oral chemo for additional reassurance. I felt that I had failed Grace, in that our decisions with her medical team were poor and if we had pushed for exploratory surgery on this spot prior to bone marrow transplant (as per her treatment protocol), she would be more likely to win then fail this battle that she had so bravely endured for the last 8 months. If we would have been aware that this spot was malignant prior to bone marrow transplant, we could have added additional rounds of high dose chemo to fight the malignancy, chemo that her post bone marrow transplant body could not endure. Grace DESERVED for better decisions to be made for her by the adults in her life, directing her care. The "what ifs" are never ending...
Here is the letter from Grace's oncologist:
Dear Ian and Lesley,
I hope this letter finds you and your son in good health and in a joyous mood for the holiday season. Although it's been a while since we last met, my recollection of the events around your daughter Grace's diagnosis and clinical course is still and will remain vivid in my memory. Our last interaction was when I delivered a falsely optimistic view of the preliminary studies on Grace's second surgery. Unfortunately, with quick change of service staff in our busy team practice, I was unable to personally follow up on the unfortunate delivery of that falsely-placed optimism. I apologize for not having taken earlier opportunities to confront/apologize for this unfortunate series of events. Certainly as a parent and a physician, it is an omission I have regretfully re-called many times.
I am now writing, with some trepidation, to share good news regarding breakthroughs in studies of the aggressive brain tumor that Grace suffered from. As you heard from us during her treatment, that she has an uncommon tumour, for which we have limited understanding and therefore even less insight into best treatments. Even though you were probably not aware, Grace's tumour was analyzed as part of a genetic study on aggressive childhood tumours in my laboratory at the Labatts Brain Tumour Research Centre. Our goal was to determined the genetic features of these aggressive "embroyonal brain tumours" diagnosed in Grace and several other children in our hospital. Unfortunately due to the unusual and rare occurrence of these tumours, we worked over a period of 4 years to collect tumours from 12 centres worldwide including centres in Asia, Europe and North America to try and put together the molecular picture of these tumours. As a result of this effort, we have now identified a specific molecular marker for these tumours variously called, ependymoblastoma and other PNET variants. Our study, which I have attached, is an important sageway into developing specific diagnostic marker for this disease and critical for ultimately developing more sophisticated and specific therapeutics.
We are hopeful that our research, which represents one of the first breakthroughs in the study of these aggressive tumours will translate into more powerful methods for diagnosis and a better chance at cure. Clearly, in addition to have a lasting impact on all who were involved in her care, your daughters, Grace's legacy continues in this most important contribution to advances in this unfortunate disease.
Again, my sincere apologies for wishfully sharing false optimism, there was no intent to cause you more pain than you had to endure. Thank you again for your passionate support of Brain Child and all the research advances at the Labatts Brain Tumour Research Centre.
Many wishes and much joy, good health and prosperity in the New Year.
Merry Christmas.
Sincerely,
Annie Huang
So are these incredible people or what? Yes, the higher your highs, the lower your lows, so when Ian and I were told of the malignant biopsy after expecting it to be benign, maybe our fall was a bit harder then it may have been if eased into it. But without this false optimism, we would have never enjoyed that sleepless night of sharing what simply luxuries we most looked forward to upon our return home as a family. Believe me, I have dissected every moment of Grace's care, every decision made, requested and review her scans and reports since her death from all parties who participated in her care and on MANY occasions better decisions could have been made for Grace now given the information that we have today. However, at the time, I believe that all parties involved were making the best decisions they could have with the information we had at the time. I believe we all wanted Grace to live, to win, to enjoy the world that a little girl should free of disease, I.V.'s, surgery's, chemo... the list of the negative she endured in her short life is never ending. But it just is, what it is. And sometimes I hate simplifying such a monumental chain of events with that statement, but what else can be said really? We must love what is, be grateful for what we are given, and choose not to live as if we are owed. Grace was an absolute gift. I am forever indebted that it was through her suffering from which I grew. I am committed to Sick Kids, their physician's, their research, their goals... every child deserves to be healthy.
Happy 6th Birthday Baby Grace.
Mama misses you baby.
Les
Last month I received a letter from one of Grace's oncologist. This oncologist we only met with once. It was towards the end of Grace's treatment, post bone marrow transplant and shortly after her second brain surgery. For those of you who followed Grace's Blog, you may remember that she always had a "spot" on her brain post the resection of her first tumour. This spot remained stagnate for months through rounds of aggressive chemo. Therefore the decision was made to proceed with Grace's bone marrow transplant without doing exploratory surgery on this spot, which was in conflict with Grace's treatment protocol that suggested all suspicious "spots" be investigated prior to bone marrow transplant. This decision was made because the physician's caring for Grace felt so strongly that it was not malignant (suggesting it was not missed at the time of her original resection) but simply scar tissue as a result of the surgery. Ian and I agreed, hoping to minimize Grace's side effects post treatment and not expose her brain to a second major operation. We proceeded with the bone marrow transplant. Then post bone marrow transplant something changed that led Grace's physician's to now want to resect this spot and biopsy it. It was explained to us that this would be the only way that they would be able to determine what was the next step in Grace's care. This really caught Ian and me off guard. We didn't think there was a "next" step. We thought Grace's care was complete since we were under the impression that she was cancer free and at the end of her treatment protocol. We agreed to the second brain surgery and then biopsy of this spot. What were our options really? During the days following this surgery we received daily updates from the lab with regards to whether or not the biopsy was positive (malignant - cancer) or negative (benign - not cancer). For 6 days we received reports that the biopsy was benign! Day 7 we would receive the final report. The oncologist who wrote us this letter we met for the first (and only time) on day 6 of these biopsy reviews and she communicated to us that the biopsy continued to prove benign and she expected nothing to change in the next 24 hours when the final review was presented to us. Ian and I celebrated, under the impression that Grace was definitely cancer free and at the end of her protocol and we were simply days away from returning home (after living at Sick Kids for 8 months) with a "well" baby girl to love and enjoy. We spent the evening talking about all the simple pleasures we so looked forward upon our return to home, most notably all going to bed and waking up under the same roof, together as a family. Well... on day 7 the final biopsy was presented to us and malignancy was found in the final 24 hours of testing. Although we were hopeful at the time, the threat to Grace's life could not be ignored. Ian and I were devastated. We knew Grace's post bone marrow transplant body could not endure the level of chemo needed to attack this kind of malignancy. Her physicians were hopeful, reassuring us that her scans were now completely clear, so the entire "spot" was resected in the second surgery, and they would send her home on some low dose oral chemo for additional reassurance. I felt that I had failed Grace, in that our decisions with her medical team were poor and if we had pushed for exploratory surgery on this spot prior to bone marrow transplant (as per her treatment protocol), she would be more likely to win then fail this battle that she had so bravely endured for the last 8 months. If we would have been aware that this spot was malignant prior to bone marrow transplant, we could have added additional rounds of high dose chemo to fight the malignancy, chemo that her post bone marrow transplant body could not endure. Grace DESERVED for better decisions to be made for her by the adults in her life, directing her care. The "what ifs" are never ending...
Here is the letter from Grace's oncologist:
Dear Ian and Lesley,
I hope this letter finds you and your son in good health and in a joyous mood for the holiday season. Although it's been a while since we last met, my recollection of the events around your daughter Grace's diagnosis and clinical course is still and will remain vivid in my memory. Our last interaction was when I delivered a falsely optimistic view of the preliminary studies on Grace's second surgery. Unfortunately, with quick change of service staff in our busy team practice, I was unable to personally follow up on the unfortunate delivery of that falsely-placed optimism. I apologize for not having taken earlier opportunities to confront/apologize for this unfortunate series of events. Certainly as a parent and a physician, it is an omission I have regretfully re-called many times.
I am now writing, with some trepidation, to share good news regarding breakthroughs in studies of the aggressive brain tumor that Grace suffered from. As you heard from us during her treatment, that she has an uncommon tumour, for which we have limited understanding and therefore even less insight into best treatments. Even though you were probably not aware, Grace's tumour was analyzed as part of a genetic study on aggressive childhood tumours in my laboratory at the Labatts Brain Tumour Research Centre. Our goal was to determined the genetic features of these aggressive "embroyonal brain tumours" diagnosed in Grace and several other children in our hospital. Unfortunately due to the unusual and rare occurrence of these tumours, we worked over a period of 4 years to collect tumours from 12 centres worldwide including centres in Asia, Europe and North America to try and put together the molecular picture of these tumours. As a result of this effort, we have now identified a specific molecular marker for these tumours variously called, ependymoblastoma and other PNET variants. Our study, which I have attached, is an important sageway into developing specific diagnostic marker for this disease and critical for ultimately developing more sophisticated and specific therapeutics.
We are hopeful that our research, which represents one of the first breakthroughs in the study of these aggressive tumours will translate into more powerful methods for diagnosis and a better chance at cure. Clearly, in addition to have a lasting impact on all who were involved in her care, your daughters, Grace's legacy continues in this most important contribution to advances in this unfortunate disease.
Again, my sincere apologies for wishfully sharing false optimism, there was no intent to cause you more pain than you had to endure. Thank you again for your passionate support of Brain Child and all the research advances at the Labatts Brain Tumour Research Centre.
Many wishes and much joy, good health and prosperity in the New Year.
Merry Christmas.
Sincerely,
Annie Huang
So are these incredible people or what? Yes, the higher your highs, the lower your lows, so when Ian and I were told of the malignant biopsy after expecting it to be benign, maybe our fall was a bit harder then it may have been if eased into it. But without this false optimism, we would have never enjoyed that sleepless night of sharing what simply luxuries we most looked forward to upon our return home as a family. Believe me, I have dissected every moment of Grace's care, every decision made, requested and review her scans and reports since her death from all parties who participated in her care and on MANY occasions better decisions could have been made for Grace now given the information that we have today. However, at the time, I believe that all parties involved were making the best decisions they could have with the information we had at the time. I believe we all wanted Grace to live, to win, to enjoy the world that a little girl should free of disease, I.V.'s, surgery's, chemo... the list of the negative she endured in her short life is never ending. But it just is, what it is. And sometimes I hate simplifying such a monumental chain of events with that statement, but what else can be said really? We must love what is, be grateful for what we are given, and choose not to live as if we are owed. Grace was an absolute gift. I am forever indebted that it was through her suffering from which I grew. I am committed to Sick Kids, their physician's, their research, their goals... every child deserves to be healthy.
Happy 6th Birthday Baby Grace.
Mama misses you baby.
Les
posted by Lesley at 9:45 a.m.
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