As many of you know Karlee has had a pretty rough year and a half. There are so many people out there that have shown their love and support and we feel it is important to include all of you in her journey to live a long and healthy life.
I thought it prudent to give a little history so you can catch up to the present, so here goes. Please bare with me, I tend to type like I talk, fast and all over the place. Oh yeah, this is Jody, Karlee's Mother.
So in February 2016, at the age of 22 Karlee was diagnosed with cervical cancer. Not really the news that any 22 wants to hear. The only good thing is that generally this type of cancer is very treatable and curable. Well for Karlee this didn't turn out to be the case and in order to help understand just how much she went through I will just lay it out in a timeline fashion.
#1 - Surgery #1 - Biopsy to stage the cancer to determine course of treatment. There is always the hope of removing the tumor and being able to get it all in one shot. The mass was too big and the doctor wasn't able to get clean margins so this determined that Karlee would have to have the chemo and radiation route. This would be a 5 week, 5 days a week radiation with a 1 day a week chemo, ending with 5 internal radiation treatments called Brachytherapy. The doctor pushed to get going as quick as we can which makes sense, any person with cancer wants it out of them as fast as they can!
#2 - But wait, Karlee is only 22 and has her whole life ahead of her, things such as marriage and children, most importantly the ability to have children was discussed. The chemo and radiation treatment she was about to undergo would take this away from her. For Karlee she handled this like a champ, for me not so much, there were many sleepless nights of tears at the thought of my daughter not being able to have that experience and was devastating to say the least. So, Karlee chose to go through hormone therapy to allow her to have some eggs harvested for future use through a surrogate. They told us that given Karlee is a healthy 22 year old this process would only take about 10 days, but possibly upward of 20. Downside to this is that health insurance does not cover this, SHOCKER, not! The fee to the tine of about $13,000 was mostly covered by programs which was great. Karlee moved forward. This process required Karlee to give herself shots twice a day in the belly and 2-3 trips a week back and forth to Portland for a 5 minute blood draw and ultrasound to see if her eggs were ready to be harvested. 4 weeks later and about 15 trips to Portland they were able to harvest only 3 little eggs. Which seemed odd to the doctors given Karlee's age and health. (Hint #1 with regard to the Fanconi Anemia.) also, Surgery #2. We were all happy that they at least got 3.
#3 - Ovary transposition. With chemo and radiation it can cause woman to go into early menopause, but this procedure called ovary transposition they go in laparoscopically and literally tie the ovaries up out of the radiation field with the hopes of prevention of early menopause. Surgery #3! Poor kid!
So in between Step 3 &4, Karlee ended up spending a couple of days in our hospital in Enterprise due to a narcotic induced bowel blockage, which is common after any surgery because of the pain medicine they give. We should have listened when we were told that Karlee should start taking prune juice and fiber chews way before! 😳
#4 - A process they call simulation, this is where they make a mold of the area of the body where they plan to radiate. In Karlee's case it was a mold from the hips down. Basically everyday when she goes in for radiation she will lay in this mold which helps them align her up quickly for the field of radiation. Also, Karlee has chose to actually receive the chemo and radiation in Walla Walla, WA. So the daily trips back and forth Walla Walla begin! (i.e. 2 hrs one way for those that don't know)
#5 - May 17, 2016, first day of chemo and radiation. Plan for a long day. It takes about 5 hours for chemo. She made it through like the champ that she is and we headed home. This is where we hit the first major bump in the road. By the time we got home Karlee was in excruciating pain, doctors say to wait it out and come back the next day. Very strange though, I had this same treatment and suffered all but no side effects until week 3. But she made it through the night and we headed back over the mountain for day two of radiation, she is still in excruciating pain. They give her the radiation and then immediately admit her to the hospital when it is discovered that she has some sort of bowel obstruction. Long story short, 10 days in the hospital, Surgery #4 for a partial bowel resection, several blood transfusions and platelet transfusion. Karlee's blood numbers were dropping fast after just 1 chemo and 2 radiations! (i.e. Hint #2 with regard to the Fanconi Anemia.) we finally get her home for Memorial Day weekend. The plan is to return on the Tuesday after Memorial Day to start the chemo and radiation again.
We head over the mountain on Tuesday, the 1st thing each week is labs to see where her blood counts are. Everyone assumes that with the blood & platelet transfusions her counts would have gone up, not so much, they plummeted even lower. One bone marrow biopsy later (you tube this procedure, most painful thing ever!) and it was discovered she had become aplastic anemic and would not be able to continue the chemo and radiation for fear of death. (i.e. 3rd hint of the Fanconi Anemia). No choice but to have a radical hysterectomy! More tears for Mom!
#6 - June 6,2016, we head to Portland, OHSU, for her hysterectomy, which didn't end up happening that day due to a reaction to platelets. She was instead admitted to the hospital. They finally decided, hey, there is something wrong here maybe we better dig deeper and try to see why this seemingly healthy 22 year old isn't responding. So another bone marrow biopsy it is. Karlee ended up in OHSU from June 6 to June 20. They tell us it could take up to a month to get the final results of the bone marrow biopsy, but that Karlee was suffering aplastic anemia and would most likely have to have a bone marrow transplant in the near future. The hysterectomy was performed on June 17 (Surgery #) and we headed home.
#7 - Karlee ended up back in the hospital a couple of times, about 10 days total from another narcotic induced bowel blockage. Let me tell you, those pain meds are terrible. They really don't tell you the importance of fiber before and after any surgery. Most painful thing for her.
On July 10, 2016, Karlee finally received the diagnosis from the bone marrow biopsy. It was discovered through various chromosome breakage tests that Karlee has a very rare disease called Fanconi Anemia. So rare that only 1 in 180,000 people are diagnosed a year in the world. This is a disease that affect the production of bone marrow which produces red and white blood cells and platelets. In looking back, Karlee had several of the signs of this disease her whole life, but given it is so rare it is easily overlooked! For more information in the Fanconi Anemia and not to bore you with pages of it, I suggest going to the Fanconi Anemia Research page. But, with Fanconi Anemia patients the risk of infection is huge due to low white blood cell counts, so Karlee is now forced to watch everything and being constantly nagged by her Mother about germs! She just loves it!
#8 - The treatment plan for Karlee. The only cure for this disease is a bone marrow transplant. But before that they try drug that helps boost the immune system with the hopes of several years of decent health without having to have the transplant. Karlee seems to be responding good over the next few months. She was able to return to work as a cosmetologist in Enterprise and resume a pretty normal life.
The first step just in case of a bone marrow transplant is to test Hayley to see if she is a match. Looking at the two of them you would never guess anything about them would match, but most fabulous news was that she was. In fact, she is a perfect match, almost as good as an identical twin! Also, with a sibling match, which is rare, the chances of curing the Fanconi is in the high 90 percentages.
She has a brief set back in December 2016 when she develops a pretty severe kidney infection which lands her in the hospital for about 10 days and one thrilling life flight trip to Richland, WA, but other than that things seem to be going well and 2017 is starts off on a positive note, or so it seems.
#9 - April 3, 2017, annual bone marrow biopsy, just routine to check out how her bone marrow is doing.
Good news was that her doctor released her to take a week vacation to Southern California. She went and had a fabulous time in the sun.
In the meantime, we get word from the doctor that the biopsy should a change in her chromosomes that appeared to be showing signs of the possibility of pre-leukemia and therefore would require Karlee to have the bone marrow transplant. Not a happy day!
So here we are June 22, 2017, sitting in hospital on the Bone Marrow Transplant floor at OHSU for upwards of 30 days.
The process leading up to this over the last two months has been long. Several trips back and forth to Portland, classes to learn how to take care of her post transplant, blood draw after blood draw, another dreaded bone marrow biopsy, and the placement of a central line called a Hickman Catheter, picture available in the photos section, also another surgery/procedure.
I have to say though, Karlee is an inspiration, and should never be taken lightly as a person. I honestly can say in my life I haven't met a person that has shown the courage and strength she has over this last year and a half at such a young age. Even in the most physical and mental painful times she held her head high and kept moving forward step by step! Not an easy feat for even the most brave person.
This is not what we had planned for our child and would never wish it upon any other person. The next 100 days will be the most challenging for Karlee, not only with regard to her treatment, but in general having to live away from home and all the people who truly love and support her.
Wallowa County and the people it is made of is a place to love and we will never truly be able to show our gratitude. So this journey, Karlee's Journey, is here to share with all of you.
Thank you and loves to all of you.
P.S. Thanks to my boss Marilyn Suarez a donation site was set up last year for Karlee to help ease the burden of the costs associated with everything that has occurred. The website is https://www.youcaring.com/riggs-family-coy-jody-karlee-hailey-590134.