Brothers face 4th Cancer Diagnosis #BeLEIGHve
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The Leigh’s are facing their 4th cancer diagnosis - making this Kaleb’s 3rd time battling Leukemia. His younger brother, Noah, completed treatment for Osteosarcoma earlier this year. This hit us all like a shockwave. We were all hoping that we had closed this chapter.
I am setting up this page as a support for Taylor and Heather Leigh, as I’ve had many people express they wanted to help. Due to the nature of a second relapse, they will be relocating to Philadelphia for significant part of Kaleb’s treatment and going back and forth to the hospital at iNOVA. Let’s help the Leigh’s not worry about expenses (mortgage, utilities, medical bills, lodging in Philadelphia, gas back and forth to hospital and Philly, food, etc.) while they start this journey for the 4th time. Please keep them in your thoughts and prayers. Your support is what helps lift them up.
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To keep up with Kaleb (and Noah) you can read Heather’s blog posts on:
https://facebook.com/beleighvenoah/
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July 17th- update from Heather:
“Hello guys, It is actually physically making me sick to write this, but we need prayers, so I am just going to say it. Yesterday, during a routine follow up with Noah and Kaleb at their oncology clinic, we found out Kaleb has relapsed…again. This comes as a complete and total shock. He was fine, he felt good, he had no symptoms…nothing. This was supposed to be a quick in and out visit, we had plans for the rest of the day, just needed to get this one unpleasant “chore” over with first…
Kaleb was admitted to Fairfax immediately, they have started the array of tests that have to be done. He received a blood transfusion over night and today he will have his port placed, bone marrow biopsy, spinal tap, and an echo of his heart. We really have no other answers as of right now. We don’t know if this is the same type of cancer he had before or if it has morphed into something new. With this being the third time, there are no clear treatment plans. His oncologist, who has been with Kaleb since he was five years old, is working hard to find the best options for him. Everyone is just shocked and we are terrified.
I am sorry to have to call upon you all once again, but we need help. We need all the prayers, good vibes, positive thoughts, whatever it is that you do to lift us up.
Kaleb, in true Kaleb form, is taking care of everyone else. He is calm on the outside, but I know he is hurting on the inside. He is going to need more strength than he has ever needed before.
This is all I can write for now, my head is spinning, our hearts are hurting. I will update more later. I am going to use the Beleighve page going forward. Thank you for your support once again.”
July 18th update from Heather:
“It has been a very busy couple days, lots of tests, procedures, tons of researching, phone calls, etc. We are pooped. Tomorrow morning Taylor and I have a meeting with Kalebs doctor to hopefully get some more results and to really start seriously honing in on some treatment options. I will update more tomorrow.
Thank you all so much for the outpouring of love. I am at a loss for words. I apologize if I am unable to respond to all the messages, texts, and emails, but we are reading them, we see the comments, we feel the love and support, and right now that is what is holding us up.
Below is a message Kaleb posted on his instagram account tonight…
“Sooooooo this sucks, as some of you might know and others don’t, on Tuesday the doctors gave us the bad news. Once again I have relapsed and find myself for the 3rd time fighting leukemia. From the bottom of my heart I want to thank everyone who has supported Noah and I both in the past and I ask one favor and that’s to help support me kick cancers ass for what is to hopefully be the last time” ”
July 20th:
“After many, many long hours of research, emails, phone consults, etc, we finally have a plan! Our meeting with Kaleb’s oncologist yesterday went really well, she has also been reaching out to hospitals, researching and weeding through all the studies and trials to find the best possible course of treatment for him. Long story short, between her research and Taylor and I’s research we ended up at the same place.
The overview plan for now, Kaleb will stay at Inova Fairfax for induction chemo (about 4 weeks). He will then do another bone marrow biopsy to see how he has responded to initial chemo. For CAR-T, he does not have to be in complete remission, which is much harder to achieve with every relapse, but we will need for the disease to be “under control” in order to move forward. If it is under control, will go to CHOP for CAR-T cell therapy. We know CHOP has a couple different options for CAR-T, one of which is a new trial, but more on that later. The first visit to CHOP will be only a few days, during this stay they will take out the cells they need and send them off for “manufacturing”. This process takes 2-3 months. We should be able to come back home during that time and Kaleb will remain on chemo to keep his disease under control. When the cells are ready, we will go back to CHOP for the infusion. It is a one time infusion, but we will be there for 6 weeks for monitoring and testing. After this 6 week period, we will discuss whether or not do proceed with a bone marrow transplant.
We feel a sense of peace about this plan, and we give that credit to all of you who have been feverish praying for him. Our specific prayer this past week has been to be able to find the best option for him, and we feel that is exactly what we have achieved.
We have another long road ahead of us, but Kaleb is amazing. He is funny, incredibly kind, smart and wise beyond his 14 years, he is a talented artist, Noah and Hannah couldn’t ask for a better big brother. We love him to the deepest part of our souls. How I got so lucky to be his mom I will never know.
Please pray for him, pray for Noah and Hannah, and for Taylor and I, we are somehow back in this awful fight, but we know we are not alone and together we will get our boy through this once again.
#BeLEIGHve”
July 22nd:
From Heather:
“Sorry this is a little deep, sometimes it just helps to write it out sometimes. ❤️
I am sitting here, in my sons hospital room, once again, while he fights for his life, for the third time. Just 10 months ago, we were here in this very room with Noah. Surreal doesn’t seem to come close to the right word.
It is 6:00 am, I have been unable to sleep for hours, a pattern that is becoming very familiar. Everyday, when I wake up, the tears are already there. Then when the quiet of the night creeps back in, they return. They are just permanently there now, like a deep sorrow that is just a part of me now.
I think of how everyone would always tell me, “You guys have been hit so hard, its just got to get better from here”, “no way could this happen to your family again”, “It just can’t, it would be too much, too unbelievable”. I think sometimes I would hang on those words like they had some hidden knowledge I didn’t know about. I would say to myself, they are right, it would just be too much, it just couldn’t happen, again…
It has been 7 days since his relapse. I want to go back to last Monday so bad. Our kids were healthy, I thought. Those of you who have been around them lately, know that both boys were doing great, they looked great, they felt great, they just got back from spending two weeks in Nashville with family. I was just telling people how they have finally been able to have a good summer. All to be ripped away in a heartbeat. One moment we were really good, the next we were not.
I think back and I look for signs, what did I miss? The only thing that comes up is he complained of jaw pain (he NEVER complains of pain) while we were in Nashville, I took him to urgent care and they said probably TMJ, he got a steroid shot, and a shot for pain and we were on our way. When we returned to Virginia I took him to the dentist and they agreed with a TMJ diagnoses. Taylor and I both had to talk each other into believing this. Now we know different.
This is hitting Kaleb hard. He just wants to start high school in a few weeks. He wants to go to marching band camp this week, something he was so looking forward to. He wants to go outside and go to the pool. He wants his life back. And we cant give that to him. This fact is soul crushing.
Cancer, you are so cruel, you are relentless, you have tried to beat our kids down over and over and over and over again but they have risen up each and every time. You will not take their spirit, you will not break them, they are fighters, together we will beat you once and for all.
#BeLEIGHve”
I am setting up this page as a support for Taylor and Heather Leigh, as I’ve had many people express they wanted to help. Due to the nature of a second relapse, they will be relocating to Philadelphia for significant part of Kaleb’s treatment and going back and forth to the hospital at iNOVA. Let’s help the Leigh’s not worry about expenses (mortgage, utilities, medical bills, lodging in Philadelphia, gas back and forth to hospital and Philly, food, etc.) while they start this journey for the 4th time. Please keep them in your thoughts and prayers. Your support is what helps lift them up.
************************
To keep up with Kaleb (and Noah) you can read Heather’s blog posts on:
https://facebook.com/beleighvenoah/
************************
July 17th- update from Heather:
“Hello guys, It is actually physically making me sick to write this, but we need prayers, so I am just going to say it. Yesterday, during a routine follow up with Noah and Kaleb at their oncology clinic, we found out Kaleb has relapsed…again. This comes as a complete and total shock. He was fine, he felt good, he had no symptoms…nothing. This was supposed to be a quick in and out visit, we had plans for the rest of the day, just needed to get this one unpleasant “chore” over with first…
Kaleb was admitted to Fairfax immediately, they have started the array of tests that have to be done. He received a blood transfusion over night and today he will have his port placed, bone marrow biopsy, spinal tap, and an echo of his heart. We really have no other answers as of right now. We don’t know if this is the same type of cancer he had before or if it has morphed into something new. With this being the third time, there are no clear treatment plans. His oncologist, who has been with Kaleb since he was five years old, is working hard to find the best options for him. Everyone is just shocked and we are terrified.
I am sorry to have to call upon you all once again, but we need help. We need all the prayers, good vibes, positive thoughts, whatever it is that you do to lift us up.
Kaleb, in true Kaleb form, is taking care of everyone else. He is calm on the outside, but I know he is hurting on the inside. He is going to need more strength than he has ever needed before.
This is all I can write for now, my head is spinning, our hearts are hurting. I will update more later. I am going to use the Beleighve page going forward. Thank you for your support once again.”
July 18th update from Heather:
“It has been a very busy couple days, lots of tests, procedures, tons of researching, phone calls, etc. We are pooped. Tomorrow morning Taylor and I have a meeting with Kalebs doctor to hopefully get some more results and to really start seriously honing in on some treatment options. I will update more tomorrow.
Thank you all so much for the outpouring of love. I am at a loss for words. I apologize if I am unable to respond to all the messages, texts, and emails, but we are reading them, we see the comments, we feel the love and support, and right now that is what is holding us up.
Below is a message Kaleb posted on his instagram account tonight…
“Sooooooo this sucks, as some of you might know and others don’t, on Tuesday the doctors gave us the bad news. Once again I have relapsed and find myself for the 3rd time fighting leukemia. From the bottom of my heart I want to thank everyone who has supported Noah and I both in the past and I ask one favor and that’s to help support me kick cancers ass for what is to hopefully be the last time” ”
July 20th:
“After many, many long hours of research, emails, phone consults, etc, we finally have a plan! Our meeting with Kaleb’s oncologist yesterday went really well, she has also been reaching out to hospitals, researching and weeding through all the studies and trials to find the best possible course of treatment for him. Long story short, between her research and Taylor and I’s research we ended up at the same place.
The overview plan for now, Kaleb will stay at Inova Fairfax for induction chemo (about 4 weeks). He will then do another bone marrow biopsy to see how he has responded to initial chemo. For CAR-T, he does not have to be in complete remission, which is much harder to achieve with every relapse, but we will need for the disease to be “under control” in order to move forward. If it is under control, will go to CHOP for CAR-T cell therapy. We know CHOP has a couple different options for CAR-T, one of which is a new trial, but more on that later. The first visit to CHOP will be only a few days, during this stay they will take out the cells they need and send them off for “manufacturing”. This process takes 2-3 months. We should be able to come back home during that time and Kaleb will remain on chemo to keep his disease under control. When the cells are ready, we will go back to CHOP for the infusion. It is a one time infusion, but we will be there for 6 weeks for monitoring and testing. After this 6 week period, we will discuss whether or not do proceed with a bone marrow transplant.
We feel a sense of peace about this plan, and we give that credit to all of you who have been feverish praying for him. Our specific prayer this past week has been to be able to find the best option for him, and we feel that is exactly what we have achieved.
We have another long road ahead of us, but Kaleb is amazing. He is funny, incredibly kind, smart and wise beyond his 14 years, he is a talented artist, Noah and Hannah couldn’t ask for a better big brother. We love him to the deepest part of our souls. How I got so lucky to be his mom I will never know.
Please pray for him, pray for Noah and Hannah, and for Taylor and I, we are somehow back in this awful fight, but we know we are not alone and together we will get our boy through this once again.
#BeLEIGHve”
July 22nd:
From Heather:
“Sorry this is a little deep, sometimes it just helps to write it out sometimes. ❤️
I am sitting here, in my sons hospital room, once again, while he fights for his life, for the third time. Just 10 months ago, we were here in this very room with Noah. Surreal doesn’t seem to come close to the right word.
It is 6:00 am, I have been unable to sleep for hours, a pattern that is becoming very familiar. Everyday, when I wake up, the tears are already there. Then when the quiet of the night creeps back in, they return. They are just permanently there now, like a deep sorrow that is just a part of me now.
I think of how everyone would always tell me, “You guys have been hit so hard, its just got to get better from here”, “no way could this happen to your family again”, “It just can’t, it would be too much, too unbelievable”. I think sometimes I would hang on those words like they had some hidden knowledge I didn’t know about. I would say to myself, they are right, it would just be too much, it just couldn’t happen, again…
It has been 7 days since his relapse. I want to go back to last Monday so bad. Our kids were healthy, I thought. Those of you who have been around them lately, know that both boys were doing great, they looked great, they felt great, they just got back from spending two weeks in Nashville with family. I was just telling people how they have finally been able to have a good summer. All to be ripped away in a heartbeat. One moment we were really good, the next we were not.
I think back and I look for signs, what did I miss? The only thing that comes up is he complained of jaw pain (he NEVER complains of pain) while we were in Nashville, I took him to urgent care and they said probably TMJ, he got a steroid shot, and a shot for pain and we were on our way. When we returned to Virginia I took him to the dentist and they agreed with a TMJ diagnoses. Taylor and I both had to talk each other into believing this. Now we know different.
This is hitting Kaleb hard. He just wants to start high school in a few weeks. He wants to go to marching band camp this week, something he was so looking forward to. He wants to go outside and go to the pool. He wants his life back. And we cant give that to him. This fact is soul crushing.
Cancer, you are so cruel, you are relentless, you have tried to beat our kids down over and over and over and over again but they have risen up each and every time. You will not take their spirit, you will not break them, they are fighters, together we will beat you once and for all.
#BeLEIGHve”
Organizer and beneficiary
Morgan Leigh Garner
Organizer
Warrenton, VA
Taylor Leigh
Beneficiary
