Samantha’s Story

Site created on June 10, 2023

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Newest Update

Journal entry by Josh Teslow

Bone-Marrow Transplant Updates (Day +43)!
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Hey everyone, Josh again! Sorry for the lull since our last update. Tough to keep up with this. A lot has happened though, so here we go! 

Sam received her brother Brandon’s stem cells on Friday, November 3rd! This process, (the most important event in Sam’s life) took only 15 minutes... There was extensive work behind the scenes (including her brother’s donation time, which took five hours - see amazing machine pictured below), but the actual infusion / transplant was rather quick and anti-climactic. Just looked like a regular IV blood transfusion. There was no shortage of emotions however. There were 4.6 MILLION stem cells in that bag (pictured below). And they are ~the only way~ someone can survive the amount of radiation Sam received... We will never be able to thank Brandon enough for this gift.

Sam was monitored by a few docs / nurses to make sure there weren’t any adverse reactions, but all went smoothly! She and I spent the rest of the day celebrating and playing games with Brandon. He had lots of appointments and a strict diet all week, so I treated him to some Boludo pizza that night as well! It was a good day :)

On November 6th, Sam woke to intense chest pressure and pain. After hours of testing, and 13 people in and out of Sam’s room at any given time, it was finally discovered that Sam had pericarditis. Pericarditis is the swelling and irritation of the thin tissue surrounding the heart, which causes sharp chest pain. Along with the pain, the pericarditis also caused Sam’s heart rate to spike (150-160’s) while doing simple tasks like adjusting in bed, or even getting up to use the restroom. The doctors informed us that this was not due to her recent transplant, but rather the total body irradiation, and that it was thankfully not life-threatening. Sam was monitored heavily and placed on a low-dose steroid for two weeks to resolve this matter. 

The next day, November 7th, Sam began to develop mucositis of her mouth and throat (also caused by both the high dose chemotherapy and radiation). This can look different in patients, but for Sam, this presented as severe inflammation and incredibly painful sores in her mouth and throat. For a while, Sam attempted to eat smooth soups and yogurt to get by, but after a few days she couldn't swallow anything (including water) nor talk much. She was in a lot of pain. She was placed on IV nutrition to get the nutrients her body needed. Her nurses were also able to convert most of her required medications to liquid form so she didn’t have to attempt to swallow 16 pills a day. This was helpful, but ultimately the pain worsened as the days continued. Sam eventually required her own pain-pump. This was connected to the central-line in her chest, and she was then able to control her own pain medication every 15 minutes. While this didn’t eliminate the pain, it significantly improved Sam’s day-to-day, and allowed her to sleep a bit more. Unfortunately, the only real solution to mucositis is having white blood cells to heal the damage. Sam’s new stem cells had not engrafted quite yet, so her white blood cell production was zero. The nurses explained that once the white blood cells start coming in, they heal the body quite quickly.

I spent basically every waking moment with Sam. All day every day in the hospital for about a month. Man did I miss her cooking... A lot of it was quiet time since speaking was not her favorite thing to do. We watched Movies, played games, watched the great British baking show, watched Alone, went for walks, etc. - as much as she could handle. After 17 long days of severe mucositis (I wish that upon no one), one morning Sam’s blood labs showed a little blip of white blood cells start to appear! The next day, they doubled, the next day they doubled again, and so on! It was quickly after where Sam started to feel some relief and didn’t need the pain-pump any more! Pretty soon her hemoglobin, platelets, red blood cells, etc. were all increasing and she started to feel so much better so quickly! All great signs of engraftment! 

Due to these improvements, Sam was discharged on Thanksgiving (day +20)! She was able to finally sleep in her own bed for the first time in almost a month! Our house had felt so empty and weird without her here (granted I was only sleeping and showering here), but I will never forget her first day back; I had a home again (She had a home again). We cooked dinner together and as we sat down to eat, I just started weeping tears of joy... We have been so fortunate that so much has gone in Sam's favor since this all began in June. There have been a lot of bumps, don't get me wrong - many things cancer steals from someone that they will never get back. Sam won't have a 100% normal life again - but MAN, she is ALIVE and doing great, She is as beautiful as ever. She is home, and she is sitting right in front of me singing, smiling, and sharing a delicious meal with me. Life is so good again.

She's started to get into the swing of her new routine now. She takes 20 pills a day to ensure her body continues to improve, to keep graft vs. host disease (GVHD) at bay, and to ensure the best chance of no relapse. She also administers her own anti-fungal infusion medication 3x a week through her central line in her chest. This was an option for her to complete at home, as opposed to receiving at the clinic. The home-infusion (along with 6 other pills) will be done in two days! This also means she can have her central line removed next week! As a bone-marrow transplant patient, Sam requires a 24/7 caregiver at home for emergencies and for transport to appointments. This is mainly myself, but Sam's mom has been helping 1-2x/ week as well. (Thanks Cheryl!) Sam goes into the clinic ~3x/week to get her blood labs drawn, meet with the doc, and receive any dressing changes / treatments needed. Soon the frequency should diminish to 1x/week! 

Lately, Sam has been doing quite well, and the doctors have been very happy with her progress. Sam’s energy fluctuates, and she often takes naps throughout the day, but this is lessening and her energy is improving every day! Her blood-counts have been looking great, and increasing on their own without any transfusions! Her liver enzymes were a concern for a while, but those have been stabilizing as well! Sam had her first post-transplant CT scans and bone marrow biopsy on Dec. 1st and there was "NO RESIDUAL LYMPHOMA FOUND"!! Man these are the most stressful, but then the happiest days... The biopsy results also showed that Sam’s bone marrow is already 100% her brother’s cells! The doctors didn’t expect this until later on in recovery, so this was a very exciting surprise :) She will still receive two more bone marrow biopsies (day +100 & day +182) to double / triple check everything is still looking great!

43 days down, and 57 to go until we can bust on out into the world again.

Love you all.

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