Carelines Fund


Carelines Fund

Welcome to Chelsey’ Carelines page! Thank you for coming to support Chelsey in her journey of recovery. Here you can:

Chelsey’s MOST RECENT UPDATE

March 31, 2022 (Day +58)
Mar 31, 2022
Recovery definitely isn't a linear path. My blood counts are still good and my skin is healing from the chemo rash, but my appetite is gone again and I've been vomitting more frequently. I lost 8 pounds in the past week and a half. I've lost 51 pounds since my transplant. My sense of taste still hasn't fully returned, which doesn't help with trying to eat.   Yesterday's blood counts: White blood cells: 7.5 Hemoglobin: 9.3 Platelets: 238 ... READ MORE

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March 31, 2022 (Day +58)
Mar 31, 2022
Recovery definitely isn't a linear path. My blood counts are still good and my skin is healing from the chemo rash, but my appetite is gone again and I've been vomitting more frequently. I lost 8 pounds in the past week and a half. I've lost 51 pounds since my transplant. My sense of taste still hasn't fully returned, which doesn't help with trying to eat.   Yesterday's blood counts: White blood cells: 7.5 Hemoglobin: 9.3 Platelets: 238

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March 17, 2022 (Day +44)
Mar 17, 2022
Recovery is still going well, but my blood pressure is still a little low. I still have to sit down to let my heart rate come down after simple tasks, like showering or getting dressed. My hands shake anytime I try to use fine motor skills and my strength is not what it was before. My taste buds are still recovering and it's difficult to eat enough every day. The chemo rash has gotten worse and is peeling in some areas. Everything will recovery eventually, I just have to be patient and rest as needed. This week's blood counts: White blood cells: 6.6 Hemoglobin: 9.3 (still low) Platelets: 213

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March 8, 2022 (Day +35)
Mar 8, 2022
Today is the last day I have to take Cellcept, one of the several immunosuppresants I've been taking. My blood counts are still recovering well, but my blood pressure is low (98/58 yesterday). Hopefully my blood pressure will come up some once the Cellcept is out of my system. The doctor also told me that I should not be doing as much as I have been and to rest more. My sense of taste is still slowly coming back. So far the only food I've found that tastes like it should is carrots. Everything else, I either don't taste or it tastes different. I'm still dealing with some of the physical side effects from the chemo and all the medicines I have to take now, but I'm also having to deal with the mental part of not being able to go anywhere other than home and the doctor's.  Yesterday's blood counts: White blood cells: 4.0 Hemoglobin: 10.0 Platelets: 253

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March 1, 2022 (Day +28)
Mar 1, 2022
I had my usual doctor appointment yesterday that led to having a dermatologist appointment today. I've had some rashes pop up that they needed to check on. The good news is that it's not GVHD. The rashes are irritation and hyperpigmentation resulting from some of the chemo I had before my transplant. They prescribed some creams to help with the irritation and inflamation, but there's nothing to do about the hyperpigmentation for now other than see if it goes away on its own, which could take months or years. My blood counts are recovering well, but recovering from the chemo is going to take a while. I'm still dealing with fatigue, digestive/appetite issues, loss of taste, hair loss, and skin sensitivity/irritation. Also one of the immunosuppressants I have to take to prevent GVHD causes tremors. Yesterday's blood counts: White blood cells: 4.3 (within normal range!) Hemoglobin: 10.3 Platelets: 175 (within normal range for the first time in a year!)

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February 25, 2022 (Day +24)
Feb 25, 2022
I have been home for a week now and am still recovering well. My doctor has already decided to only have me come in twice a week instead of 3 times. I still have almost no taste and I have very little energy. Recovery is a long road. Hopefully some parts of it will get easier as my taste comes back and I can eat more solid foods. Hopefully I catch a financial break soon because all the bills really add up. Yesterday's blood counts: White blood cells: 2.0 Hemoglobin: 10.1 Platelets: 92

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February 19, 2022 (Day +18)
Feb 19, 2022
I'm home! I was discharged yesterday evening and have been adjusting to being home again. I'm still waiting for the last of the mucositis to pass. I can't taste anything right now and still am not quite to eating solid foods yet, so I'm surviving on juice and smoothies. I can't wait to be able to taste and swallow without any pain again. I'm exhausted but things are slowly improving, and hopefully will keep improving so I don't end up back in the hospital. Monday will start my going to outpatient appointments 3x per week. For the first 6 months, that will be my life; home and doctor appointments. I am not allowed to go out in public places or do a lot of other things, not even cleaning, until approved by the doctor. For now, I am not even allowed to drive. Latest blood counts: White blood cells: 2.8 Hemoglobin: 9.5 Platelets: 39

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I'm so glad you get to go home! Here's to a restful & speedy recovery.
Shelby Benson
Feb 19, 2022 at 10:01 pm

February 16, 2022 (Day +15)
Feb 16, 2022
Things are starting to get better as my counts are coming up. I still have some mouth pain and digestive issues from the mucositis, so I'm not really able to eat yet and can only drink a little. If things continue improving as well as they have the past couple days, then it is likely I will be able to go home this weekend. Last night's blood counts: White blood cells: 2.3 Hemoglobin: 9.3 Platelets: 43

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Very happy to hear this! I've been checking in every few days, I hope that you are able to go home soon!
Robby Lankford
Feb 18, 2022 at 02:18 pm

February 14, 2022 (Day +13)
Feb 14, 2022
Since my last post 4 days ago, I continued to get worse. They put me on a dilaudid pain pump and once we got the dosing adjusted where I needed it, it really started helping. I have not had anything to eat since those few sips of milkshake I had on Day +9 and last night was the first time I felt like I actually got a little sleep (not just slipping out of consciousness from dilaudid and exhaustion). I found some stuff on Amazon called UlcerEase that has really been helping with the mouth pain. My white blood cells are starting to come back up, so I've felt a little better today. Still can't talk or eat or really drink anything but hopefully everything will get better quickly. Also, the hair on my head is finally falling out so I had a nurse buzz it again yesterday so that it hopefully won't be too itchy as it falls out. Last night's blood counts: White blood cells: 0.3 Hemoglobin: 7.6 (got 2 units of blood) Platelets: 28 (got a unit of platelets)

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Glad to hear some good news. Hope everything keeps going on a positive path. Sending positive thoughts and vibes your way.
Jeremiah Harris
Feb 15, 2022 at 12:54 pm

February 10, 2022 (Day +9)
Feb 10, 2022
I have continued to get worse over the past couple days. With the pain and everything else, I haven't had any actual sleep in about 3 days. I've had a couple small naps on purpose, but at this point the most sleep I get is from slipping in and out of consciousness. I've hardly been able to eat anything; all I managed today was half of a strawberry smoothie and a few sips of a milkshake. Most of my medicines have been switched over to IV and I've been getting oxy and dilaudid to try to manage the pain. They've given me some medicated lotion to help with the itching as well as the rash where my PICC line used to be. I'm starting to slip out of consciousness again, so that's all I can do for now. Last night's blood counts: White blood cells: <0.1 (finally at rock bottom, please come back up soon) Hemoglobin: 7.8 Platelets: 30

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Precious Chelsey! Praying for rest and relief for you. ❤️
Melissa Teeter
Feb 11, 2022 at 04:20 pm

February 8, 2022 (Day +7)
Feb 8, 2022
I'm entering the lowest point of this whole process. My mouth and entire GI tract are inflammed; it hurts to talk, eat or drink. The inflammation in my gums feels like my teeth are being pulled. All the options they had here to help with the mouth pain (such as oncology mouth wash and lidocaine gel) all made me vomit instantly. They're giving me oxycodone to help with the pain. My skin is irritated and I'm itchy all over. My sinuses are dry and bleeding. The chemo triggered persistent mentrual bleeding. I'm completely exhausted. They've started giving me a shot in the belly every day to help stimulate white blood cell production. I really hope my counts start coming up by the end of the week so everything can start healing. Last night's blood counts: White blood cells: 0.1 Hemoglobin: 9.0 Platelets: 40

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Much love & positivity to you. I hope you have a much better day tomorrow.
Shelby Benson
Feb 8, 2022 at 07:58 pm

Chelsey’s STORY

Here is my story so far up to finally having a diagnosis and preparing for treatment, as best as I can remember.

In March 2021, my platelet count came back low from blood work for a health risk assessment. All other test results were within normal range. I followed up with my primary care physician and was referred to a hematologist, Dr. Deshpande, and we monitored my platelets as they continued to drop. My platelet counts briefly stabilized during May 2021, but a month later dropped further and I became dependent on platelet transfusions in August 2021. At this point my red blood cell counts were consistently low as well and Dr. Deshpande suspected ITP. We tried the usual treatments for ITP with no results. After 2 bone marrow biopsies in August 2021, Dr. Deshpande no longer suspected ITP and suspected we were seeing the beginning of a bone marrow failure. She referred me to another hematologist that also specialized in bone marrow disorders, Dr. Chojecki. 

Dr. Chojecki ordered another bone marrow biopsy at the end of September 2021. After receiving the results and still not having a clear diagnosis, Dr. Chojecki referred me to Dr. Powell for a second opinion. Dr. Powell and his team reviewed my file and also found it inconclusive. Dr. Chojecki ordered a 4th bone marrow at the end of November 2021.

Finally on December 16, 2021, Dr. Chojecki felt he had enough evidence to support a diagnosis of aplastic anemia with the presence of trisomy 6 and we could begin preparing to treat with a bone marrow transplant.

After 9 long months, I was able to end 2021 with a diagnosis and treatment plan. I've started 2022 with tests to prepare for bone marrow transplant, including a 5th bone marrow biopsy on January 10th. I still require weekly platelet transfusions and it seems I have started needing red blood cell transfusions weekly as well. I had continued working through all of this up until January 10th, when I started short term disability. I am currently scheduled for trifusion insertion on January 25th and admission to the transplant wing on January 26th.

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