Support Claire's journey
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From a family of 4 (soon to be 5), Dimitri (dad), Kelsey (mom), Logan (5), and Claire (2.5):
Hello everyone thank you for taking the time to read our story ❤
On Sunday Feb 24th we noticed weird little pin prick size bruises on Claire's legs and decided to take her into a walk in clinic. The Dr. there had no idea what it was and was going to refer us to a pediatrician. The next day (Mon 25th) she had a couple of spots in her mouth that looked like blood blisters. So we decided we would just go to the stollery emergency in the morning as she was otherwise behaving normally. Monday night around 10pm she woke up screaming in pain, holding her stomach, and her mouth and gums were bleeding. We immediately called our wonderful neighbors to come stay with Logan(5) until dimitris mom could get there, packed Claire up and headed to the stollery.
There were 35 other patients waiting to be seen when we arrived but as soon as the triage nurse examined Claire we were bumped to the front and taken to a room. They came to do some bloodwork very shortly after that. Within 2 hours of us arriving they came to tell us that it was definitely leukemia. Two hours for our world to be absolutely turned upside down. Within another hour or so Claire was getting her first of many platelet and blood transfusions as well as fluids and antibiotics. Shortly after that we were moved upstairs to the pediatric oncology ward.
Wednesday early afternoon Claire had her first lumbar puncture done to test for leukemia cells in her spinal fluid which has since come back negative ( yay! ). She also had her first chemo treatment at that time. Wednesday late afternoon she had a second surgery to put a central iv into her chest which will remain there for the duration of her treatments. It didn't take long for the team to determine that Claire's leukemia is acute lymphblastic b cell, or ALL. The Dr.s were quick to assure us that this is the most common , as well as the most treatable with highest cure rate(80%) kind of leukemia she could have (yay again!).
This last week has been a blur of information, procedures, and treatments. As well as overwhelming support and comfort from family, friends, everyone is our ward ( Drs, nurses, social workers, childlike specialists, psychologists, occupational therapists, and more!), even strangers ❤ Our baby girl has gone through so much in such a short period of time, but she is such a little trooper. She is responding very well to the chemotherapy and is exactly where the Drs hoped she would be at this point in the treatment ❤
Treatment includes 1 month of aggressive chemotherapy to break up all of the existing leukemia cells, the first 9-10 days of which we stay in the hospital exclusively (we are on day 8 right now). Depending on how she does after these first 10 days we may get to go home and just come back in for a few hours or the day depending on what she needs done.
After this first month she will go through more tests and assessments to determine how aggressive treatments will be for the next 6-8 months.
Following that will be 2 years of maintenance chemotherapy.
This is going to be a long haul experience with lots of challenges and adjustments ahead of us. Especially this first stretch while we are figuring out the practicalities as well as learning to cope with the mental stress, and coming to grips with the fact that our beautiful little girl has leukemia.
With a third little blessing expected to join us is approximately 6 weeks, one of our biggest challenges is figuring out our finances. It would be a huge help and weight off of our shoulders to have Dimitri be able to stay at home/ at the hospital as much as possible while we navigate this new path, as Claire's treatment schedule is quite intense. Particularly this first month.
As one might expect there are many extra costs that come with getting Claire well. She will be on many medications over the next month's and years. At home chemo, medications to counter side effects of the chemo, anti nausea meds, pain meds, meds to flush out broken down leukemia cells, etc. And many trips to the hospital.
We are not sure yet what all of this, plus time off of work and baby coming will look like finance wise. We are looking into and applying for as many programs/benefits as we can. But in the meantime we would be forever grateful for your generosity and support in our time of need ❤
Since we do not quite know what the future looks like in terms of finances , we have set our fundraising goal high. This way we can get on our feet, get our baby well, and anything extra we may have recieved after we figure out life again, we would love to pass on to another family who may be struggling with finances in our ward ❤
Hello everyone thank you for taking the time to read our story ❤
On Sunday Feb 24th we noticed weird little pin prick size bruises on Claire's legs and decided to take her into a walk in clinic. The Dr. there had no idea what it was and was going to refer us to a pediatrician. The next day (Mon 25th) she had a couple of spots in her mouth that looked like blood blisters. So we decided we would just go to the stollery emergency in the morning as she was otherwise behaving normally. Monday night around 10pm she woke up screaming in pain, holding her stomach, and her mouth and gums were bleeding. We immediately called our wonderful neighbors to come stay with Logan(5) until dimitris mom could get there, packed Claire up and headed to the stollery.
There were 35 other patients waiting to be seen when we arrived but as soon as the triage nurse examined Claire we were bumped to the front and taken to a room. They came to do some bloodwork very shortly after that. Within 2 hours of us arriving they came to tell us that it was definitely leukemia. Two hours for our world to be absolutely turned upside down. Within another hour or so Claire was getting her first of many platelet and blood transfusions as well as fluids and antibiotics. Shortly after that we were moved upstairs to the pediatric oncology ward.
Wednesday early afternoon Claire had her first lumbar puncture done to test for leukemia cells in her spinal fluid which has since come back negative ( yay! ). She also had her first chemo treatment at that time. Wednesday late afternoon she had a second surgery to put a central iv into her chest which will remain there for the duration of her treatments. It didn't take long for the team to determine that Claire's leukemia is acute lymphblastic b cell, or ALL. The Dr.s were quick to assure us that this is the most common , as well as the most treatable with highest cure rate(80%) kind of leukemia she could have (yay again!).
This last week has been a blur of information, procedures, and treatments. As well as overwhelming support and comfort from family, friends, everyone is our ward ( Drs, nurses, social workers, childlike specialists, psychologists, occupational therapists, and more!), even strangers ❤ Our baby girl has gone through so much in such a short period of time, but she is such a little trooper. She is responding very well to the chemotherapy and is exactly where the Drs hoped she would be at this point in the treatment ❤
Treatment includes 1 month of aggressive chemotherapy to break up all of the existing leukemia cells, the first 9-10 days of which we stay in the hospital exclusively (we are on day 8 right now). Depending on how she does after these first 10 days we may get to go home and just come back in for a few hours or the day depending on what she needs done.
After this first month she will go through more tests and assessments to determine how aggressive treatments will be for the next 6-8 months.
Following that will be 2 years of maintenance chemotherapy.
This is going to be a long haul experience with lots of challenges and adjustments ahead of us. Especially this first stretch while we are figuring out the practicalities as well as learning to cope with the mental stress, and coming to grips with the fact that our beautiful little girl has leukemia.
With a third little blessing expected to join us is approximately 6 weeks, one of our biggest challenges is figuring out our finances. It would be a huge help and weight off of our shoulders to have Dimitri be able to stay at home/ at the hospital as much as possible while we navigate this new path, as Claire's treatment schedule is quite intense. Particularly this first month.
As one might expect there are many extra costs that come with getting Claire well. She will be on many medications over the next month's and years. At home chemo, medications to counter side effects of the chemo, anti nausea meds, pain meds, meds to flush out broken down leukemia cells, etc. And many trips to the hospital.
We are not sure yet what all of this, plus time off of work and baby coming will look like finance wise. We are looking into and applying for as many programs/benefits as we can. But in the meantime we would be forever grateful for your generosity and support in our time of need ❤
Since we do not quite know what the future looks like in terms of finances , we have set our fundraising goal high. This way we can get on our feet, get our baby well, and anything extra we may have recieved after we figure out life again, we would love to pass on to another family who may be struggling with finances in our ward ❤
Organizer
Maggie Bekolay
Organizer
Edmonton, AB