Help bless our Gwenyth
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Anyone that knows the Hayden girls will tell you they are something special! Janelle, Rilyn and Gwenyth are, well, the best way for me to describe them are as 3 rays of sunshine. I have been so lucky to get to photograph each one of these girls and I distinctly remember photographing Gwenyth’s newborn photos and just being in awe of her smile, easy going nature and energy. Janelle has become one of my best and dearest friends and I have been so lucky to witness how her daughters have changed her life. Her girls are EVERYTHING to her. Every single thing she does is with purpose and for her girls. This is why hearing the news of Gwenyth’s sickness was absolutely devastating. Sweet 4-year-old Gwenyth was diagnosed with Leukemia mid-January and the lives of these beautiful girls haven’t been the same since. Janelle is a single working mother and this heartbreaking news has not only been catastrophic emotionally but financially. Since Gwenyths diagnosis Janelle has only been able to work one day in a three-week period. She has been practically living in the hospital unable to leave her daughters side. We can’t fix what has happened to this family but we can help alleviate some financial burdens.
I asked Janelle to tell us in her own words Gwenyths Story:
On January 17th our lives were forever changed….As I rushed Gwenyth my 4 year old to the ER I kept pleading with God to please just let it be something stupid. Deep down I knew, but I wanted to believe something so different than what my heart was telling me.
Her pediatrician was the 3rd doctor appointment she had within a week and at the previous 2 she was misdiagnosed with a severe sinus infection. At that 3rd appointment her pediatrician told me within minutes of being there that a team of people would be waiting for us at the ER of Randall’s Children’s Hospital. My heart sank and my world began to crumble.
As the team of ER nurses walked into our small room I felt a sudden shift in the air, it’s true, a mother always knows. They held their heads a little lower upon entry this time and said the words no parent should ever have to hear, Gwenyth has Leukemia.
It's been hell ever since. No child should have to endure the pain and discomfort we have had to watch her go through these past few weeks. No parent ever thinks it will be their child. Most parents have nightmares about these things happening to their precious children. Never did I think I’d be fully awake living this nightmare!
She was diagnosed with Acute Lymphoblastic Leukemia. She has, since diagnoses and biopsy results, been upgraded to high risk which means a more intense and aggressive treatment plan than most cases of this horrific cancer.
The word cancer is something I still can’t get myself to say out loud. I haven’t come to terms with it being associated with my precious baby girl! We are devastated....
I never dreamed as a mom I would have to learn about any of this. Sitting down with my beautiful 8 year old daughter Rilyn, Gwenyth’ s big sister, and having to tell her that her sister has cancer, was the second worst day of my life. Rilyn’s daily life has changed so much and it breaks my heart to watch her miss her sister and worry about her so much. Watching tears drip from her face when I told her Gwenyth would lose her hair was one of the most painful moments I’ve had to bear. As a hairdresser I felt in that moment I had truly failed my girls. Our home was a home full of talk and love for long, beautiful and abundant locks of hair. Everything has truly changed.
This is a description of the start on her long journey ahead.
She has undergone about 5 blood transfusions, 5 platelet transfusions, tons of different types of antibiotics, 1 bone marrow biopsy, and 2 spinal taps with Chemo injections in her spine, a PICC line inserted, which will be replaced with a port in her chest that she will wear for several years. Multiple rounds of intravenous chemotherapy along with so many medications that we have spread sheets to keep track of times and doses given. She unfortunately has developed unstable blood sugars from the steroids she has to take; therefore, has her blood sugar tested 3 times a day. This leads to the possibility of daily insulin injections. Unfortunately on day 14 of her treatment she was rushed into the hospital after only 3 days at home since diagnosis and admitted to the ICU again - nearly lifeless from a sudden blood infection called sepsis. She will now be on IV antibiotics for several weeks to treat that after another weeks stay to stabilize her. We almost lost her. Throughout all of this we have watched the life just drain from her once beautifully energetic eyes. They seem to be filled with pain and suffering and it is a sight I can’t even put into words.
She has a very long battle ahead of her. She has at least an 8 month intensive and aggressive chemo treatment plan with at least 2 years after that of in home treatments. It is a full time job giving her the tender care that she now needs. She will also have doctor appointments at the hospital up to 4 times a week for her treatments.
She is in home seclusion as soon as she gets to leave the hospital, as my baby’s body has absolutely no ability to fight any germs. A simple cold could kill her so unfortunately we were told to remove her from preschool to avoid contact with any germs. She is supposed to start kindergarten in the fall, but that too may be on hold until she is well enough to be around so many others.
Gwenyth is a child so full of life, laughter and spunk. She is my quiet, shy one until you get to know her. She makes you work for the precious gift of her love and affection, something I have always admired about her as she is a very confident and self-assured child. She is the biggest goof ball and the sound of her laugh makes you realize that pure and precious good is still so very present in this world. She has such a long and painful road ahead of her, but I know she is full of strength that even I feel blessed to learn from. I know she will do big and amazing things with her life and I can’t wait for her to get past all this to watch her grow.
So many people have reached out and asked what they can do to help. And I know Janelle is beyond humbled by the generosity of those around her. It's the hardest thing for her to do; asking for help is not within her comfort zone.
Between Weny’s home care, hospital stays and doctor appointments Janelle is financially drowning. Her job requires her presence and that has been nearly impossible. The financial burden has quickly become too much to bear and the hospital bills haven't even hit yet. Along with that is the realization as a mother that she cannot and will not leave her baby's side.
Janelle has requested that a portion of this money raised to help her will be going to a foundation for leukemia or to another single mom in need during a time that cancer has invaded their lives.
We are asking you to support her and others on this difficult journey by spreading the word and educating yourself on this horrific disease. Please go to
https://www.cancer.gov/ publications/patient- education/leukemia.pdf
http://www.childrensleukemia. org/
https://www.cancer.gov/types/ leukemia/patient/child-all- treatment-pdq
Thank you for reading Gwenyth’s story.
UPDATE from Gwenyth's mom Janelle:
Well Today February 22nd was met with devastating news. Today was the day that we went in to get the results of Gwenyths Bone Marrow biopsy that was done last Friday February 17th. This was the end of phase one what’s called the ‘Induction Phase’ and we were getting the results that would tell us whether or not we were on the right path to cure Gwenyth’s body of Leukemia.
Unfortunately this cancer wants to stick around. We were praying so hard and had so many people hoping for the best. We were told that the Leukemia is still very present in Gwenyth’s frail little body. We were told that she is now in the highest risk category for leukemia. This news came with a punch in the gut and a literal ripping out of my once whole heart! It seems the blows continue to come and this ride gets scarier and scarier. Losing hope is just not an option, but slowly I allowed the unthinkable thoughts seep into my once strong and shielded mind that we may be losing this battle, that losing was even a possibility now was something I cannot describe! I felt robbed of all hope and faith in chemo, doctors and treatments. I began to allow anger, sadness and pure fear began to creep into the very spots of my mind and heart that I was trying so hard to protect. I can’t let those walls crumble for then as a parent I will lose the strength she needs from me!
Since this devastating news she has begun an unimaginable phase 2 treatment of this horrible Cancer. She takes chemo orally daily and is in the hospital 4 days a week to have it also injected into her port. Thursdays are HELL days. Poor sweet thing has 4 different chemos in one day including one injected into her spine. Last week on Thursday February 23rd the doctors made the decision to put an NG tube in for nutrition. It has been a battle from the beginning to try to keep weight on her at all. She is beyond frail and no longer walks much and if she does it is a short distance with lots of help. She is just very quiet these days. We rarely see a smile or hear her beautiful little laugh. It’s like the darkness of the disease has finally made its way through every pore in her body and seems to even be trying to suffocate her soul. She has lost all of her incredibly beautiful hair to reveal the cutest little bald head I’ve ever seen in my life! Losing her hair has been much harder on her than I ever expected it to be. She has cried many times saying that she is ugly and now won’t go a second without her hats. I feel sometimes we forget that even though these little beings are possibly only 4 years old they still feel every ounce of this painful process in every way possible.
I have honestly lost count of how many blood transfusions, platelet transfusions and Spinal taps she has had, not to mention fevers and antibiotics. Some nights her pain isn’t even soothed by pain meds, those nights I just chose to lay with her and cry with her. I’m just taken back every second that I am with her, as she rarely ever complains. To witness such strength is truly inspiring.
With Leukemia there is a great survival rate and we are so thankful for how far they have come in research. However Gwenyth is now one of only 2%-3% of all cases where they first round of chemo doesn’t work. This unfortunately puts her survival rate much lower than the typical statistics. We have now been seeking out different options for a better chance for Gwenyth. We have been informed that she qualifies for a couple different hospitals on the leading edge of research who offer treatments proven to further help her very high risk ALL. This unfortunately will mean that we will be possibly traveling to another state for her treatments. We will do anything possible no matter the travel or cost to save her life.
Thank you so much for all your support throughout this horrible process. Gwenyth is strong and none of us will ever give up hope that she can beat this horrible cancer.
I have set up an email address for anyone who wants to write words of encouragement to Gwenyth or the family. I would love for her to look back on all this many years later and get to read it all.
[email redacted]
I asked Janelle to tell us in her own words Gwenyths Story:
On January 17th our lives were forever changed….As I rushed Gwenyth my 4 year old to the ER I kept pleading with God to please just let it be something stupid. Deep down I knew, but I wanted to believe something so different than what my heart was telling me.
Her pediatrician was the 3rd doctor appointment she had within a week and at the previous 2 she was misdiagnosed with a severe sinus infection. At that 3rd appointment her pediatrician told me within minutes of being there that a team of people would be waiting for us at the ER of Randall’s Children’s Hospital. My heart sank and my world began to crumble.
As the team of ER nurses walked into our small room I felt a sudden shift in the air, it’s true, a mother always knows. They held their heads a little lower upon entry this time and said the words no parent should ever have to hear, Gwenyth has Leukemia.
It's been hell ever since. No child should have to endure the pain and discomfort we have had to watch her go through these past few weeks. No parent ever thinks it will be their child. Most parents have nightmares about these things happening to their precious children. Never did I think I’d be fully awake living this nightmare!
She was diagnosed with Acute Lymphoblastic Leukemia. She has, since diagnoses and biopsy results, been upgraded to high risk which means a more intense and aggressive treatment plan than most cases of this horrific cancer.
The word cancer is something I still can’t get myself to say out loud. I haven’t come to terms with it being associated with my precious baby girl! We are devastated....
I never dreamed as a mom I would have to learn about any of this. Sitting down with my beautiful 8 year old daughter Rilyn, Gwenyth’ s big sister, and having to tell her that her sister has cancer, was the second worst day of my life. Rilyn’s daily life has changed so much and it breaks my heart to watch her miss her sister and worry about her so much. Watching tears drip from her face when I told her Gwenyth would lose her hair was one of the most painful moments I’ve had to bear. As a hairdresser I felt in that moment I had truly failed my girls. Our home was a home full of talk and love for long, beautiful and abundant locks of hair. Everything has truly changed.
This is a description of the start on her long journey ahead.
She has undergone about 5 blood transfusions, 5 platelet transfusions, tons of different types of antibiotics, 1 bone marrow biopsy, and 2 spinal taps with Chemo injections in her spine, a PICC line inserted, which will be replaced with a port in her chest that she will wear for several years. Multiple rounds of intravenous chemotherapy along with so many medications that we have spread sheets to keep track of times and doses given. She unfortunately has developed unstable blood sugars from the steroids she has to take; therefore, has her blood sugar tested 3 times a day. This leads to the possibility of daily insulin injections. Unfortunately on day 14 of her treatment she was rushed into the hospital after only 3 days at home since diagnosis and admitted to the ICU again - nearly lifeless from a sudden blood infection called sepsis. She will now be on IV antibiotics for several weeks to treat that after another weeks stay to stabilize her. We almost lost her. Throughout all of this we have watched the life just drain from her once beautifully energetic eyes. They seem to be filled with pain and suffering and it is a sight I can’t even put into words.
She has a very long battle ahead of her. She has at least an 8 month intensive and aggressive chemo treatment plan with at least 2 years after that of in home treatments. It is a full time job giving her the tender care that she now needs. She will also have doctor appointments at the hospital up to 4 times a week for her treatments.
She is in home seclusion as soon as she gets to leave the hospital, as my baby’s body has absolutely no ability to fight any germs. A simple cold could kill her so unfortunately we were told to remove her from preschool to avoid contact with any germs. She is supposed to start kindergarten in the fall, but that too may be on hold until she is well enough to be around so many others.
Gwenyth is a child so full of life, laughter and spunk. She is my quiet, shy one until you get to know her. She makes you work for the precious gift of her love and affection, something I have always admired about her as she is a very confident and self-assured child. She is the biggest goof ball and the sound of her laugh makes you realize that pure and precious good is still so very present in this world. She has such a long and painful road ahead of her, but I know she is full of strength that even I feel blessed to learn from. I know she will do big and amazing things with her life and I can’t wait for her to get past all this to watch her grow.
So many people have reached out and asked what they can do to help. And I know Janelle is beyond humbled by the generosity of those around her. It's the hardest thing for her to do; asking for help is not within her comfort zone.
Between Weny’s home care, hospital stays and doctor appointments Janelle is financially drowning. Her job requires her presence and that has been nearly impossible. The financial burden has quickly become too much to bear and the hospital bills haven't even hit yet. Along with that is the realization as a mother that she cannot and will not leave her baby's side.
Janelle has requested that a portion of this money raised to help her will be going to a foundation for leukemia or to another single mom in need during a time that cancer has invaded their lives.
We are asking you to support her and others on this difficult journey by spreading the word and educating yourself on this horrific disease. Please go to
https://www.cancer.gov/ publications/patient- education/leukemia.pdf
http://www.childrensleukemia. org/
https://www.cancer.gov/types/ leukemia/patient/child-all- treatment-pdq
Thank you for reading Gwenyth’s story.
UPDATE from Gwenyth's mom Janelle:
Well Today February 22nd was met with devastating news. Today was the day that we went in to get the results of Gwenyths Bone Marrow biopsy that was done last Friday February 17th. This was the end of phase one what’s called the ‘Induction Phase’ and we were getting the results that would tell us whether or not we were on the right path to cure Gwenyth’s body of Leukemia.
Unfortunately this cancer wants to stick around. We were praying so hard and had so many people hoping for the best. We were told that the Leukemia is still very present in Gwenyth’s frail little body. We were told that she is now in the highest risk category for leukemia. This news came with a punch in the gut and a literal ripping out of my once whole heart! It seems the blows continue to come and this ride gets scarier and scarier. Losing hope is just not an option, but slowly I allowed the unthinkable thoughts seep into my once strong and shielded mind that we may be losing this battle, that losing was even a possibility now was something I cannot describe! I felt robbed of all hope and faith in chemo, doctors and treatments. I began to allow anger, sadness and pure fear began to creep into the very spots of my mind and heart that I was trying so hard to protect. I can’t let those walls crumble for then as a parent I will lose the strength she needs from me!
Since this devastating news she has begun an unimaginable phase 2 treatment of this horrible Cancer. She takes chemo orally daily and is in the hospital 4 days a week to have it also injected into her port. Thursdays are HELL days. Poor sweet thing has 4 different chemos in one day including one injected into her spine. Last week on Thursday February 23rd the doctors made the decision to put an NG tube in for nutrition. It has been a battle from the beginning to try to keep weight on her at all. She is beyond frail and no longer walks much and if she does it is a short distance with lots of help. She is just very quiet these days. We rarely see a smile or hear her beautiful little laugh. It’s like the darkness of the disease has finally made its way through every pore in her body and seems to even be trying to suffocate her soul. She has lost all of her incredibly beautiful hair to reveal the cutest little bald head I’ve ever seen in my life! Losing her hair has been much harder on her than I ever expected it to be. She has cried many times saying that she is ugly and now won’t go a second without her hats. I feel sometimes we forget that even though these little beings are possibly only 4 years old they still feel every ounce of this painful process in every way possible.
I have honestly lost count of how many blood transfusions, platelet transfusions and Spinal taps she has had, not to mention fevers and antibiotics. Some nights her pain isn’t even soothed by pain meds, those nights I just chose to lay with her and cry with her. I’m just taken back every second that I am with her, as she rarely ever complains. To witness such strength is truly inspiring.
With Leukemia there is a great survival rate and we are so thankful for how far they have come in research. However Gwenyth is now one of only 2%-3% of all cases where they first round of chemo doesn’t work. This unfortunately puts her survival rate much lower than the typical statistics. We have now been seeking out different options for a better chance for Gwenyth. We have been informed that she qualifies for a couple different hospitals on the leading edge of research who offer treatments proven to further help her very high risk ALL. This unfortunately will mean that we will be possibly traveling to another state for her treatments. We will do anything possible no matter the travel or cost to save her life.
Thank you so much for all your support throughout this horrible process. Gwenyth is strong and none of us will ever give up hope that she can beat this horrible cancer.
I have set up an email address for anyone who wants to write words of encouragement to Gwenyth or the family. I would love for her to look back on all this many years later and get to read it all.
[email redacted]
Organizer and beneficiary
Christine Shields
Organizer
Vancouver, WA
Janelle Hayden
Beneficiary