My Story
Wednesday, July 27, 2022 · by kathy howe
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
We wish we didn’t have one, but we do — this is Sam’s story of B Cell Acute Lymphoblastic Leukemia. Before I go any further, please *do not* go to “Dr. Google” and read about it — it will only result in information that is not helpful, and can be scary.
If you want to learn more about pediatric B Cell ALL visit this website:
National Comprehensive Cancer Network:
https://www.nccn.org/patients/guidelines/content/PDF/ped_all_patient.pdf
And if you are able, please please please donate blood. Sam relies a lot on transfusions and blood products as do all cancer patients (especially leukemia and lymphoma patients).
(Also, we can no longer have flowers in our house as they can harbor bacteria and fungi so please don’t send flowers — make a donation to St. Balderick’s or Leukemia and Lymphoma Society instead 😊 or to your favorite charity in Sam’s honor :)
So to the beginning we go:
Sam left the day after school finished, June 3, to go to San Antonio to volunteer at Camp CAMP, a residential summer camp in the TX Hill Country for kids and young adults with special needs. He’d wanted to volunteer for 2 years but couldn’t due to Covid so was very excited to get to go this summer (it’s the same camp that Kathy and her sister, Beth, volunteered at, as well as Beth’s 3 now young adult children, as well as their mom, Linda). He also had broken his wrist on May 22nd at a soccer tournament in Davis so we were wondering how that might impact his experience at CAMP but the director reassured us that having a cast wouldn’t be an issue.
His plan was to be there for 3 weeks: 1 week of training and 2 weeks of volunteering. Then at the end of the 1st week with campers, he decided he wanted to add on another week and stay until July 1. Great! We started rearranging plane tickets etc. Well, thankfully some other factors changed and he ended up deciding to come home on June 27th as originally scheduled and thank the good lord and the spirits of the ancestors because little did we know what Tuesday June 28th would bring.
Monday, June 27, he arrived home at 9:30 am and spent the afternoon with a friend. We all were glad to have him home. We started talking about what the rest of the summer might look like: did he want to get a job? Did he want to do some more volunteering? Did he want to do some SAT prep class? He was also figuring out how to get in a workout routine as he’d recently tried out and made the Palo Alto Soccer Club U18 Blue Team (which is National Premiere League level) and they were gearing up for a tournament, but with his wrist being broken, he couldn’t play but wanted to stay in shape as much as he could.
Tuesday morning, we’d find out later, he woke up with many spots of blood on his pillow case. He may have mentioned it to us - -I don’t remember. I know I didn’t think much of it because I only thought it was a “few drops.” He mentioned a spot on his face but said he thought it was a pimple or something - it was tiny so again, I didn’t think anything more (and he’s a teenager — and he’s always been very good at tending to his own cuts and scrapes). He made plans with his best friend Alec to go to the YMCA and then headed out (he’s driving now!). He called later to say that he wanted to go to Alec’s house and I said that would be fine. Sometime mid-afternoon, John got a text from him with a photo and a big 3”x2” bandaid on his cheek with a silver dollar sized blood spot. I thought to myself, “hmmmm…..that seems unusual.” And then my brain started thinking “why would he bleed like that?” And I thought “Oh _______, Advil can cause platelet supression and he’s been taking it since his wrist was broken for pain management (I had lived 51.25 years and not known that you’re not suppose to take Advil over 10 days — but then I thought to myself “but he was getting it from medical staff at CAMP so they were overseeing it so…..why is this happening?”
He also had this large, raised 3” x2-3” welt on his inner thigh which also had some bruising but I chalked that up to history: the TX bugs *love* Sam and Zack both — I swear they lie in wait outside the airport arrival to pounce on them when they arrive (and Sam hadn’t been to TX in over 3 years thanks to Covid). Sam had had a similar welt when he was younger so I just thought it was a repeat of that.
It wasn’t.
So by now it was 5:30 pm and so I called the Lucille Packard Children’s Hospital (LPCH) on-call nursing service that all the pediatric offices use after hours in our area and described what Sam was presenting. I said “I either need reassurance that this is something that can wait until tomorrow (we already had a med check appointment with his pediatrician scheduled for 2 pm on Wednesday 6/29) or tell me he needs to be seen. She didn’t miss a beat: “You need to go to the ER right now.” “Is Urgent care, ok?” “No, you need to go right now to Stanford Pediatric ER.”
Thankfully Zack was swimming with John so it was just me and Sam and Milo (our dog) at home. Much easier to mobilize.
So we arrived at the ER in 5 mins because we live that close to LPCH (this is another good fortune part of this whole marathon). We got triaged but didn’t get assigned a room until 8:30 pm or so. I forget the timing now but we weren’t rushed into a room. Eventually they got us a shared room with a curtain for privacy — the little girl sharing the room had split her lip and was probably 4 or 5 and had to get stitches so was understandably very upset.).
They drew his blood and then put an IV line in (the nurse missed his vein though but it didn’t bruise so she was pleased about that as it was a sign to her that thismight not be as serious — but boy did this spot bruise later).
The doctor also came in and did an exam and noticed additional bruises on his legs (his hairy, tanned by the TX CAMP sun had masked them to the mom eye) and noticed some red dots on his ankles. “How long have you had those?” She asked. “I don’t know — maybe a couple of months - -maybe 3? Sam answered. The careful eye of medicine was putting together the signs of something that wasn’t caused by Advil — but I was careful not to jump to any conclusions myself.
We were waiting until 11;30 PM or so — i got some paperwork back that had the word “coagulopathy” in the diagnosis box and so I quickly looked that up. What I read was still in line with my Advil hypothesis so I just continued to wait until we heard from the doctor.
I forget what the timing was but either at the very end of June 28th or in the wee hours of Wednesday June 29th, the doctor came in and said “I looked at your cells under the microscope and there are signs of leukemia.”
Sam just looked at me and started crying — what a shocking thing to hear. This otherwise strong, in the best shape of his life, teenager has what?!@??!?! Cancer!??! Leukemia?!?!? WTF universe!?!?!?!
And while I write that in strong language - -Sam has never once gotten angry or showed resentment — he handled this gut punch of a diagnosis with grace and strength.
We wish we didn’t have one, but we do — this is Sam’s story of B Cell Acute Lymphoblastic Leukemia. Before I go any further, please *do not* go to “Dr. Google” and read about it — it will only result in information that is not helpful, and can be scary.
If you want to learn more about pediatric B Cell ALL visit this website:
National Comprehensive Cancer Network:
https://www.nccn.org/patients/guidelines/content/PDF/ped_all_patient.pdf
And if you are able, please please please donate blood. Sam relies a lot on transfusions and blood products as do all cancer patients (especially leukemia and lymphoma patients).
(Also, we can no longer have flowers in our house as they can harbor bacteria and fungi so please don’t send flowers — make a donation to St. Balderick’s or Leukemia and Lymphoma Society instead 😊 or to your favorite charity in Sam’s honor :)
So to the beginning we go:
Sam left the day after school finished, June 3, to go to San Antonio to volunteer at Camp CAMP, a residential summer camp in the TX Hill Country for kids and young adults with special needs. He’d wanted to volunteer for 2 years but couldn’t due to Covid so was very excited to get to go this summer (it’s the same camp that Kathy and her sister, Beth, volunteered at, as well as Beth’s 3 now young adult children, as well as their mom, Linda). He also had broken his wrist on May 22nd at a soccer tournament in Davis so we were wondering how that might impact his experience at CAMP but the director reassured us that having a cast wouldn’t be an issue.
His plan was to be there for 3 weeks: 1 week of training and 2 weeks of volunteering. Then at the end of the 1st week with campers, he decided he wanted to add on another week and stay until July 1. Great! We started rearranging plane tickets etc. Well, thankfully some other factors changed and he ended up deciding to come home on June 27th as originally scheduled and thank the good lord and the spirits of the ancestors because little did we know what Tuesday June 28th would bring.
Monday, June 27, he arrived home at 9:30 am and spent the afternoon with a friend. We all were glad to have him home. We started talking about what the rest of the summer might look like: did he want to get a job? Did he want to do some more volunteering? Did he want to do some SAT prep class? He was also figuring out how to get in a workout routine as he’d recently tried out and made the Palo Alto Soccer Club U18 Blue Team (which is National Premiere League level) and they were gearing up for a tournament, but with his wrist being broken, he couldn’t play but wanted to stay in shape as much as he could.
Tuesday morning, we’d find out later, he woke up with many spots of blood on his pillow case. He may have mentioned it to us - -I don’t remember. I know I didn’t think much of it because I only thought it was a “few drops.” He mentioned a spot on his face but said he thought it was a pimple or something - it was tiny so again, I didn’t think anything more (and he’s a teenager — and he’s always been very good at tending to his own cuts and scrapes). He made plans with his best friend Alec to go to the YMCA and then headed out (he’s driving now!). He called later to say that he wanted to go to Alec’s house and I said that would be fine. Sometime mid-afternoon, John got a text from him with a photo and a big 3”x2” bandaid on his cheek with a silver dollar sized blood spot. I thought to myself, “hmmmm…..that seems unusual.” And then my brain started thinking “why would he bleed like that?” And I thought “Oh _______, Advil can cause platelet supression and he’s been taking it since his wrist was broken for pain management (I had lived 51.25 years and not known that you’re not suppose to take Advil over 10 days — but then I thought to myself “but he was getting it from medical staff at CAMP so they were overseeing it so…..why is this happening?”
He also had this large, raised 3” x2-3” welt on his inner thigh which also had some bruising but I chalked that up to history: the TX bugs *love* Sam and Zack both — I swear they lie in wait outside the airport arrival to pounce on them when they arrive (and Sam hadn’t been to TX in over 3 years thanks to Covid). Sam had had a similar welt when he was younger so I just thought it was a repeat of that.
It wasn’t.
So by now it was 5:30 pm and so I called the Lucille Packard Children’s Hospital (LPCH) on-call nursing service that all the pediatric offices use after hours in our area and described what Sam was presenting. I said “I either need reassurance that this is something that can wait until tomorrow (we already had a med check appointment with his pediatrician scheduled for 2 pm on Wednesday 6/29) or tell me he needs to be seen. She didn’t miss a beat: “You need to go to the ER right now.” “Is Urgent care, ok?” “No, you need to go right now to Stanford Pediatric ER.”
Thankfully Zack was swimming with John so it was just me and Sam and Milo (our dog) at home. Much easier to mobilize.
So we arrived at the ER in 5 mins because we live that close to LPCH (this is another good fortune part of this whole marathon). We got triaged but didn’t get assigned a room until 8:30 pm or so. I forget the timing now but we weren’t rushed into a room. Eventually they got us a shared room with a curtain for privacy — the little girl sharing the room had split her lip and was probably 4 or 5 and had to get stitches so was understandably very upset.).
They drew his blood and then put an IV line in (the nurse missed his vein though but it didn’t bruise so she was pleased about that as it was a sign to her that thismight not be as serious — but boy did this spot bruise later).
The doctor also came in and did an exam and noticed additional bruises on his legs (his hairy, tanned by the TX CAMP sun had masked them to the mom eye) and noticed some red dots on his ankles. “How long have you had those?” She asked. “I don’t know — maybe a couple of months - -maybe 3? Sam answered. The careful eye of medicine was putting together the signs of something that wasn’t caused by Advil — but I was careful not to jump to any conclusions myself.
We were waiting until 11;30 PM or so — i got some paperwork back that had the word “coagulopathy” in the diagnosis box and so I quickly looked that up. What I read was still in line with my Advil hypothesis so I just continued to wait until we heard from the doctor.
I forget what the timing was but either at the very end of June 28th or in the wee hours of Wednesday June 29th, the doctor came in and said “I looked at your cells under the microscope and there are signs of leukemia.”
Sam just looked at me and started crying — what a shocking thing to hear. This otherwise strong, in the best shape of his life, teenager has what?!@??!?! Cancer!??! Leukemia?!?!? WTF universe!?!?!?!
And while I write that in strong language - -Sam has never once gotten angry or showed resentment — he handled this gut punch of a diagnosis with grace and strength.
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