New to CSN wanting to meet others that have been on this journey.

LisaWins

Hi,

I wanted to write a post introducing myself, and telling about the journey we have been on for the last 18 months.

My name is Lisa, I am 45 and I am the primary care giver for my sister who is 57. My sister is battling Acute Myeloid Leukemia for the second time. She was first diagnosed on Jan 24, 2014, she underwent Induction and consolodation chemo in Jan/Feb. She was only able to compete 2 1/2 rounds of the chemo, because she became toxic and had life threatening consequences from the chemo. She spent a couple of weeks in ICU b/c her bp bottomed out, and they didn't know if she would survive. She did thank GOD, but had some serious gross and fine motor issues, along with speech issues due to the chemo. She also, while in the hospital, contracted a flesh eating bacteria that attacked her eye and cheek. She was pronounced in remission on March 20, 2014, and began the long road of recovery. Luckily the fine and gross motor skills, and speech issues, began to resolve as the chemo worked its way out of her body....she still struggled but was able to leave the hospital, and return to what was left of her life.  Although, in remission she had to deal with the flesh eating bacteria infection which eventually resulted in having cosmetic reconstructive surgery on her eye and cheek. It was a long process that took its toll on her.

Finally, after recovering from the cosmetic reconstructive surgery, she was able to visit her oncologist once a month, and all looked good...or better for her health. However, my sister has a masters degree in Speech Pathology, and was working as a Speech/Language Diagnostician for a school district. She was forced to take early retirement because being exposed to the children, with all the germs they carry, was not something that her doctors would sign off on. She was placed on long term disability, and began to try and get her life back on track, until the end of the school year. Knowing that her retirement would begin at the end of the 2015 school year.

Then in February 2015 she began to not feel well again...lots of fatigue, and bruising. When she went to the doctor at the end of February 2015, a bone marrow biopsy was scheduled for March 4. I drove to MO from my home in TX to go with her. 2 1/2 hours after the biopsy, we were told to get to the hospital in KC...asap...it was back! We were 16 days shy of her 1 year remission anniversary. She was devastated....as were the rest of us in the family.

So...we entered the hosp on March 4, and chemo was started again. She met with a new team of doctors, at the new hospital, because during her previous chemo battle, she had been put in contact with a specialized team that said she would qualify for a Stem Cell Transplant, and hopefully for one of the new clinical trials. She did qualify, and we began the road to transplant. Luckily, I had been in the donor system since October of 1998 and I was a 100% match!! It was a long tedious, trying process in which she went through many tests, and procedures, and I had a few of my own to get through also. We had one scare where it appeared I would not be able to donate, but after additional testing it was found to be inconsequential and the date was set for the transplant!

On May 26, 2015 I donated the stem cells she needed, and 2 hours later they were given to her! Since then...other than nausea and fatigue, she has done exceptionally well. I have only returned home to see my family for approximately 3 weeks since March 3 when I left. I have been sure to be there for my daughter's big events: prom, & graduation for my youngest, and I was there when my oldest was proposed to by the love of her life! It is so hard being away from my husband, daughters, and grandbabies...but I am doing all I can to stay up beat and positive. When we began this in Jan. 2014, as my sister listened to her oncologist explain that there was no time to wait, and really no time for a second opinion (if they had caught it a week later, she would not have survived) my sister looked down at the floor, then looked at our mom, and at me, and then back up at the doctor, and simply said "OK...Game ON!" That has been our motto ever since!

We are now staying at a facility operated by the American Cancer Society, and we are at Day +28 post transplant, today is actually her 1 month "Re-Birthday"! The days are so long for me, and her when she is awake! LOL We have several TV shows that we never miss, and have started several new series (Thank Goodness I have ROKU and thought to grab it the last time I was home) but boredom does hit, and she is not allowed to go outside, or go anywhere other than the room/facility we are in, my vehicle, and the clinic! I started a Facebook page for her back in 2014 after she was diagnosed, and we have a huge support network of family and friends that are constantly in touch, and several that visit regularly! It has been such a blessing! I designed and sold GAME ON!!! T-shirts that many bought, and I established a GOFUND me account for her also at the time of the original diagnosis.

She hates not being able to see her son and granddaughter more regularly...although they visit 1-2 times a week, and our mom is elderly and needs help that we are not able to provide at this time. As for me, I am homesick...although I don't bring it up she doesn't need the stress. I know that she thinks about it though, and she knows that I miss my family, and my home, and honestly my life! I just try to remember that 5-6 months of homesickness is awful, but compared to having her still with our family for the next 5-10-15 years...it is just a drop in the bucket, and worth the sacrifice. Still doesn't take away my homesickness, or guilt for feeling that way.

Her counts are rising, and the doctors are extremely pleased! That is all that matters right now!

 

Are there any other caregivers to AML patients that have gone through a SCT? If so could you please share your post transplant experience? I would appreciate it very much. It feels sometimes like we are always waiting on "the other shoe to drop!" Is that how we will feel forever? Does it get better? When does her energy level increase? Thanks for any info you can share!

 

GAME ON!!!!

 

a_oaklee

I read your post and I just

I read your post and I just wanted to reach out to you.  You have such a special relationship with your sister.  The two of you are inspiring.  I hope that she continues to do well, and that you will be able to spend more time back home with your husband and kids.  My sister is my best friend.  I think we teach our children how special the relationships with their siblings can be, by example.  I am very glad that you aren't missing those really important times with your own children.