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Nov 25, 2018 Latest post:
Dec 2, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On 11-19-2018 my mother finally went to the doctor after a week of just not feeling well. Symptoms reminded me of your common flu with tiredness, nausea, shortness of breath, lack of energy, bad migraines. The doctor was a little stumped as to what was going on so they did some blood tests and my mom left the office. About an hour later, the doctor called and told her that wherever she was to turn around and go directly to the ER. Her white blood cell count was 307,000 (normal range 3,000-10,000). So they drove to Shawnee Mission Hospital. After a few hours there, the pathologist knew they were not fully capable of handling the situation so an ambulance literally got her to the university of Kansas hospital in a matter of 5 min. They straight up left Larry behind as he waited :) and told my mom to hold on as they were going to go fast...she said it was the ride of her life. Of course I started reading and came across some information that I just had to put my phone down...
Over the evening, in ICU, a catheter was inserted into her jugular vein (in the neck) and over the course of 5 hours they tried to remove as many WBCs as possible. And lab after lab was taken.
On 11-20-2018 my mother underwent a bone marrow test. She was a nervous wreck about this because they weren’t able to sedate her in her state. So when it was time, I held her hand she squeezed mine, I almost passed out, Larry took over (thank Goodness for that man). We got through it...thank heaven. Later that evening Dr. Lin came in and said I know your results...my mom was officially diagnosed with Leukemia B-ALL. (B acute lymphoblastic leukemia). And EVERYTHING stopped. I don’t recall anything in that conversation except when I look back at notes. I just held her hand at bedside and we cried and my brothers (Tyler and Jr ) held me.
On 11-21-2018, my mom called around 6:11 am. She couldn’t recall much of the day before and was upset. Of course she worried about everyone else instead of herself. We talked for about an hour, went over her daily goals (insertion of PICC line, eat a little, IV fluids), uncle Ron, uncle Fred, aunt Patsy and cousin Erika arrived. The doctor came in and she was able to further classify this type of leukemia as (pH-), instead of (pH+). Given that information, we classify for a phase 3, clinical study through the course of treatment. Basically, the added component is the addition of a drug that attaches a receptor to mutated chromosomes t9 and t22. Which has been shown to help the WBCs produce and mature normally instead of immaturely.
A few things we have learned at this point: -Do you know that this type is soooooo rare in adult females? It’s like 1,000 women of this age bracket had this diagnosis in the last year! -Our treatment will be in 3 phases: 1) 3-4 weeks confinement in the hospital where chemotherapy will be given. No radiation. During this time no one under the age of 13 is allowed to visit. She just doesn’t have an immune system to fight the little germs 🦠 from kids (this killed me as my kids see my mom all the time). If you are sick at all, do not visit. If you visit, you must sanitize your hands and wear a mask at all times. Blood will be given and in fact, we’ve had to have it twice already so if you want to help GIVE BLOOD to your local blood center. She is O+!
2) 6 months of outpatient chemotherapy will be phase 2. This phase will be more intense. Soooo we will more than likely need help during this phase with meals and such. I promise to communicate!!!
3) once we get her in a “tight” remission we will need a full bone marrow transplant. Please NOW and if you meet the criteria help us find her a match should one of us 3 kids don’t match. Go to www.bethematch.org and join. There’s a fee but it’s tax deductible. It can take, days, months, years to find a match so I want to start now. Us kids will be tested after the holidays but in a more urgent clinic.
On 11-22-2018, Thanksgiving Day, we had our first chemotherapy treatment and a spinal tap where they removed some spinal fluid to see if if the cancer has moved into the CNS and as a precaution they doses her with chemotherapy in the spinal fluid. Those results are pending. I will update once I know. We then had a small Thanksgiving dinner in the hospital which was a time I will always remember.
Yesterday, 11-23-2018, we had to have our hair cut. My cousin Evy gave her a cute pixie cut (see pic in photos). She will soon lose all her hair but she’s in good spirits and we are going to decorate her room this week. My brother Aaron and sister-in-law Christine made it up to visit. Since she cannot have live flowers/plants, I’ve asked cards, photos be sent to:
12151 S. Clinton St. OLATHE, KS 66061
The outpour of support and thoughts have been amazing! The power of your prayers more so. We officially chose a song for this journey... “Warrior” by Hannah Kerr and you will see me #warrior on my posts. Download it and listen to it. What a representation of my mama.