Love,
Team Certain
Monday, November 27, 2017
Biopsy on Tues
All business here ... 9am needle biopsy Tuesday morning. Thanks for staying close and for the huge rally of support.
Tuesday, November 21, 2017
Still I Rise
Yesterday was hard. Our little bubble of "normalcy" popped. I knew it would at some point, it has to. This is nature - everything that comes together fall apart. Stability and change are always present. If you add a tiny grain of sand to another, the sand piles up (each day, a gift) - it eventually reaches a point of criticality but then that pile of sand falls back to the ground. It' been over three years since my last blog post...someone do the math here, but at least 1200 days. If you're just jumping in here, it's been over 4 years since Jack's second kidney transplant.
My mind is crazy busy. I have secrets (everyone thinks we're healthy), I have fear and panic knocking down my door. I see my husband calm as a cucumber. I look into my sons brave eyes and see his innocence and his strength. We are at the Masonic Children's Hospital. We are each falling into our familiar roles. While Jack is focused on getting last night's Indiana Hoosiers basketball game on dad's phone, I am trying to check boxes, anything to move us forward to answers. I am doing stupid things- like canceling our ortho appointment for next week and casually letting yoga students that my class will be subbed tonight. I am snapped right into the moment of what could be our new norm.
Deep breath. I've got this... I remind myself.
Dr. Verghese, Jack's primary kidney doctor, intercepted me yesterday as I was walking into the hospital to help prep him for sedation for a kidney biopsy. No, the kidney biopsy is not a routine thing. Biopsy's are invasive and are only performed when there is a red flag. Labs have been off lately and we were considering growth hormones which brought us to this moment. Dr. V pulls me into a private room and tells me to sit down. I am immediately n o t i n m y b o d y. I am witnessing someone else's story here...
"The ultrasound that we did in preparation for the biopsy revealed a mass. We were not expecting this at all. We need to aggressively rule out cancer. It could be anything. It could be fatty tissue, it could have been there from the beginning and we missed it, it could be benign, it could be malignant. The only way to know is to biopsy. There is minimal blood flow in the mass which is in his favor. The patchy shape of the mass is not typical and therefore in his favor. But, he does have Epstein Bar Virus, which is a marker for cancer with transplant kids". I remember hearing about the elusive EBV virus during his first transplant 10 years ago. I put that little secret in a box waaaay back in my head.
Oncology arrives shortly later. This is not happening. Oncology is here? She is lovely and I want to not like her because I need to put my anger somewhere. But she comforts me in an odd way and even makes me laugh as she sees my hands typing in "Post Transplant Lymphoproliferative Disorder" (PTLD) into the Google machine as I attempt to maintain eye contact. "Be careful which websites you go down, Mom."
MRI follows at 4:00. The MRI confirms another mass. This is real and I'm slowing sinking in and letting the food show up at the door, trying to remember the password to this blog, and keep it cool for Jack.
Dr V. greets us and tells us that she thinks this is PTLD and the only way to confirm is via biopsy. She wants to know with absolute certainty what we are dealing with. She wants to do an open biopsy versus the "simple" needle in the abdomen, stick a band-aid on the wound option. The transplant surgeon does not not want to do an open biopsy for obvious reason and reasons I probably can't handle knowing at this point. So while she, our transplant surgeon, and oncology debate this overnight we go home. I make soup -- because what else do you do when soup has already been delivered?? I let myself bury my emotion in this pot of soup and listen to Sam and Lucy (Jack's sibs) carry on like any other day.
Now, we wait for the call to see who wins the biopsy plan debate. Jack goes to school, Harry and I go back to work. This biopsy will most likely happen this week but of course it's complicated because of the holiday. She wants it as soon as possible - she would do it today if there was room in the operating room and agreement amongst the team. She tells me an angel brought Jack her for this ultrasound. Part of me thinks "duh" and part of me thinks "bleepity bleep bleep bleep". Doubt trains faith, according to my previous blog post, Jan 2013.
I don't carry secrets well so hence this post. I need to keep it real and clear this out. I also need to keep this out of my yoga studio as much as possible because you show up for you, not for me. Most importantly, I also need to protect my children and keep it "normal" for Jack, Sam (yes, Jack has a twin bro), and Lucy as long as I can. So please help us with that. And if you run into Harry, I'm sure he will tell you Jack is just fine. He exudes more confidence than maybe necessary around Jack's health. I am grateful for that.
Please keep us in your thoughts, prayers, sun salutations - however it is you "connect".
Not sure if this is an approved website from Oncology, but this is a decent link at first glass that explains PTLD which we suspect we are dealing with: https://www.kidney.org/atoz/content/post-transplant-lymphoproliferative-disorder-ptld
Unedited, raw, slightly over caffeinated, phone ringer on high, waiting for Dr V. to call, full of fear and hope, stabilizing and changing. Still I rise.
Love,
Ali
My mind is crazy busy. I have secrets (everyone thinks we're healthy), I have fear and panic knocking down my door. I see my husband calm as a cucumber. I look into my sons brave eyes and see his innocence and his strength. We are at the Masonic Children's Hospital. We are each falling into our familiar roles. While Jack is focused on getting last night's Indiana Hoosiers basketball game on dad's phone, I am trying to check boxes, anything to move us forward to answers. I am doing stupid things- like canceling our ortho appointment for next week and casually letting yoga students that my class will be subbed tonight. I am snapped right into the moment of what could be our new norm.
Deep breath. I've got this... I remind myself.
Dr. Verghese, Jack's primary kidney doctor, intercepted me yesterday as I was walking into the hospital to help prep him for sedation for a kidney biopsy. No, the kidney biopsy is not a routine thing. Biopsy's are invasive and are only performed when there is a red flag. Labs have been off lately and we were considering growth hormones which brought us to this moment. Dr. V pulls me into a private room and tells me to sit down. I am immediately n o t i n m y b o d y. I am witnessing someone else's story here...
"The ultrasound that we did in preparation for the biopsy revealed a mass. We were not expecting this at all. We need to aggressively rule out cancer. It could be anything. It could be fatty tissue, it could have been there from the beginning and we missed it, it could be benign, it could be malignant. The only way to know is to biopsy. There is minimal blood flow in the mass which is in his favor. The patchy shape of the mass is not typical and therefore in his favor. But, he does have Epstein Bar Virus, which is a marker for cancer with transplant kids". I remember hearing about the elusive EBV virus during his first transplant 10 years ago. I put that little secret in a box waaaay back in my head.
Oncology arrives shortly later. This is not happening. Oncology is here? She is lovely and I want to not like her because I need to put my anger somewhere. But she comforts me in an odd way and even makes me laugh as she sees my hands typing in "Post Transplant Lymphoproliferative Disorder" (PTLD) into the Google machine as I attempt to maintain eye contact. "Be careful which websites you go down, Mom."
MRI follows at 4:00. The MRI confirms another mass. This is real and I'm slowing sinking in and letting the food show up at the door, trying to remember the password to this blog, and keep it cool for Jack.
Dr V. greets us and tells us that she thinks this is PTLD and the only way to confirm is via biopsy. She wants to know with absolute certainty what we are dealing with. She wants to do an open biopsy versus the "simple" needle in the abdomen, stick a band-aid on the wound option. The transplant surgeon does not not want to do an open biopsy for obvious reason and reasons I probably can't handle knowing at this point. So while she, our transplant surgeon, and oncology debate this overnight we go home. I make soup -- because what else do you do when soup has already been delivered?? I let myself bury my emotion in this pot of soup and listen to Sam and Lucy (Jack's sibs) carry on like any other day.
Now, we wait for the call to see who wins the biopsy plan debate. Jack goes to school, Harry and I go back to work. This biopsy will most likely happen this week but of course it's complicated because of the holiday. She wants it as soon as possible - she would do it today if there was room in the operating room and agreement amongst the team. She tells me an angel brought Jack her for this ultrasound. Part of me thinks "duh" and part of me thinks "bleepity bleep bleep bleep". Doubt trains faith, according to my previous blog post, Jan 2013.
I don't carry secrets well so hence this post. I need to keep it real and clear this out. I also need to keep this out of my yoga studio as much as possible because you show up for you, not for me. Most importantly, I also need to protect my children and keep it "normal" for Jack, Sam (yes, Jack has a twin bro), and Lucy as long as I can. So please help us with that. And if you run into Harry, I'm sure he will tell you Jack is just fine. He exudes more confidence than maybe necessary around Jack's health. I am grateful for that.
Please keep us in your thoughts, prayers, sun salutations - however it is you "connect".
Not sure if this is an approved website from Oncology, but this is a decent link at first glass that explains PTLD which we suspect we are dealing with: https://www.kidney.org/atoz/content/post-transplant-lymphoproliferative-disorder-ptld
Unedited, raw, slightly over caffeinated, phone ringer on high, waiting for Dr V. to call, full of fear and hope, stabilizing and changing. Still I rise.
Love,
Ali
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