My Story

In July of 2021 I went in for a routine doctor visit and had comprehensive blood tests after not feeling quite right for about a week and a half. I was experiencing high heart rates of over 120 several times a day after normal activities (doing dishes, taking a shower, watering plants, etc.) and feeling completely wiped out and tired. Since my primary physician was out of the office I saw the PA who ran an EKG, wanted me to go on high blood pressure medicine, suggested the usual tests: mammography, colonoscopy, pap and the like. All of which I knew was not the issue, I knew that something else was happening to my body. So after I went in for the blood tests, the following week, I received a phone call late afternoon from a dear friend who was a physician from the family practice where I had my tests done. I thought she was calling to catch up yet I soon realized why she called. Very calmly and quietly she told me “what I was about to hear I wasn’t going to like, I needed to check myself into the ER right away because my platelet count was at 11k, I was extremely anemic, I would need a platelet transfusion and a bone marrow biopsy right away because this could be Leukemia.” She prayed with me on the phone then asked if I understood everything she just told me while my husband and I scrambled to pack up what little we could and headed off to the ER. I am SO grateful I heard the news from her rather than a random nurse.

After being in the ER for 12 hours, I received my 1st platelet transfusion, I was moved to a room in the hospital where I met my team of doctors. Who were perplexed as to my condition and thought this could have been brought on by a virus. I needed to have a bone marrow biopsy to see exactly what was really happening. My primary oncologist Dr Prins, ordered a series of blood panels and began to unravel the mystery. She thought I looked “too healthy and young” for this to be happening to me. She assured me that whatever I had it could be taken care of. She was insistent on moving me to a private room in Oncology. Before I had my biopsy I needed a plasma transfusion as well. Results from a biopsy can take up to 10-14 days depending on the complexities and/or abnormalities shown. The initial findings showed severe fibrosis (Myelofibrosis) in my marrow preventing proper blood cell distribution. Along with possible MPN (Myeloproliferative Neoplasm) or MDS (Myelodysplastic Syndrome) they weren’t exactly sure and the sample had to be sent out to multiply pathology agencies over the following weeks.

In the meantime, I went in routinely for blood draws twice a week and transfusions when needed. In the month of July I had a total of 5 platelet transfusions and spoke to an expert in Stem Cell Transplants from OHSU, which was my only chance for survival. In August I had 6 platelet transfusions and 2 plasma transfusions. I had my second bone marrow biopsy on the 20th and after a week it was concluded I indeed had MDS with Dense Marrow Fibrosis 3/3. To say I was devastated would be an understatement but I knew God was with me and would take care of me no matter what lay ahead.

You can read about all the details in the links below…Through it all God never left my side, He continues to heal and strengthen me each and every day. To Him Be The Glory Now And Forever!

JULY 13th: Day 5 Hebrews Study Week One
O: “He who built all things is God.” Hebrews 3:4
A: Let Us make man in Our image. God, the Father, the Son and the Holy Spirit were there at the beginning. All things were created when He spoke them into existence. Nothing is random, there is a plan/purpose for each and every life.
P: Lord Father help us to live out our lives with purpose. Help me seek that daily. Hold fast to this family. Come quickly Lord Jesus amen.

JULY 14th 1 Timothy 1:1
Emergency Room 5:30 PM | 1st Platelet transfusion 3-5AM
PRAYER REQUESTS: “Please pray I’m Checking in to Salem Hospital right now, low platelet count.”
“Having platelet transfer tonight, then bone marrow biopsy in the morning.”

JULY 15th Hebrews 4:12-13 Matthew 6:10 Colossians 3:16
Hospital Day 2 Room #4109 2 Red Blood Cell Transfusions 6AM | 1st Meeting w/Dr Prins | 1st Biopsy 1PM | Moved to Oncology Floor Room #5027 7PM
“The Word of God is living and powerful, sharper than any two edged sword piercing soul/spirit, joints and marrow…”
PRAYER REQUESTS: “Waiting on biopsy results, probably hear by morning. Had 2 blood transfusions today feel much better. Praying for clear results and being able to come home tomorrow if all looks good 😉”

JULY 16th Hebrews 4:15-16 Ephesians 2:10
Hospital Day 3 | Cardiac Ultrasound 10AM | Platelet Transfusion #2 | Home 5:30PM
“Let us come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.”
PRAYER REQUESTS: “Preliminary bone marrow core evaluation shows significant fibrosis. The differential diagnosis for bone marrow fibrosis can include an autoimmune process, infectious/toxic/reactive process, primary myelofibrosis, etc. There is no obvious evidence of acute leukemia, but additional studies are pending. More information may be available late this evening or early next week. Sounds like we will be able to go home tonight just not sure when. We have an appointment Monday so please be in prayer for some good results from the biopsy”

JULY 17th Saturday Mom and Pops Visit

JULY 18th
“Thy kingdom come, thy will be done…have Your way Lord Jesus.”

JULY 19th Matthew 26:39
Dr Prins 1PM Lab 13k
PRAYER REQUESTS: “We saw the Oncologist today and the platelet count dropped again to 13k from 23k she had on Friday. Final bone marrow biopsy results are still pending, but at this point the pathologist sees fairly significant bone marrow fibroses, and increased numbers of immature cells called blasts. She does not appear to have acute leukemia, but there is a spectrum of bone marrow conditions with increased number of blasts. This could be the start of leukemia but again we are not sure. Waiting to hear back from OHSU and will be referred to see a myeloid bone marrow expert ASAP. This will probably mean she will need another biopsy but we are praying she doesn’t. Sandy will be getting two more units of platelets tomorrow. The hemoglobin numbers were great so that is a positive. Pray for continued wisdom for the doctors, settling for Sandy and I. His presence to go before us through all of it. Thank you all for your prayers!”

JULY 20th Nehemiah 8:10
PLT Transfusion #3 & #4

JULY 21st Galatians 6:9

JULY 22nd Hebrews 6:18-19
Dr Prins 9:30AM Lab 16k
PRAYER REQUESTS: “Got a platelet transfusion Tuesday, two units and got blood drawn today. Her count was 16k as of today so the doctor ordered another unit which we will get Saturday. We still have no news on the results from the biopsy. We have an appointment next Thursday 3:30 at OHSU to see an expert on bone marrow. Please pray for good results so they can formulate a plan to get this fixed. We are praying for God to work through her body so it starts creating platelets and heals itself. We don’t have a lot of information but wanted to give everyone an update. God’s got us, and we appreciate what everyone is doing for us and especially all the prayers.”

JULY 23rd
Ultrasound 10AM

JULY 24th
PLT Transfusion #5

JULY 25th Psalm 143:1, 4-8, 10-11

JULY 26th
Dr Prins 4:15PM (1st diagnosis MPN/MDS) Lab 23k
PRAYER REQUESTS:”The pathologist sees a significant amount of fibrosis on her bone marrow. There are immature cells (blasts also know as leukemia cells) in her blood and in her bone marrow. At this time there aren’t enough blasts to qualify as a leukemia diagnosis. They see these findings in myelofibrosis either primary or secondary. This falls into the category of a myeloproliferative neoplasm (MPN). The pathologist also sees “dysplastic” cells, meaning cells that don’t appear normal. This can be seen in bone marrow disorders such as myelodysplastic syndrome (MDS). It might be a type of overlap disorder between the MPN and MDS diagnosis. Genetic studies are pending on the blood and bone marrow. We have an appointment Thursday at OHSU to get a diagnosis and a treatment plan God willing. Our doctor is very optimistic about this and believes it will be treatable so please be in prayer about that. Again thank for all your prayers we couldn’t do this without them.”

JULY 27th

JULY 28th

JULY 29th
OHSU 1st meeting w/Dr Gandhi 12:45PM (transplant only option)
PRAYER REQUESTS: “So we saw the Oncologist expert at OHSU today. In staying with the norm there still isn’t a diagnosis. What she did say was her fibrosis is at stage 3 on a scale of 0-3. She wants to have her pathologist look to confirm there isn’t more than 20% of blasts in her blood to confirm it’s not acute leukemia. If that’s not the case then it’s one of three things, myeloproliferative neoplasm (MPN), myelodysplastic syndrome (MDS), or a combo of both which is very rare. Regardless she will need a stem cell transplant and chemo before hand. They took a bunch of blood, her platelets are staying consistent which is good. They are also looking for a donor to match so they can schedule the transplant. We don’t know what God has in store for us but we are continuing to trust in Him. Thanks for all your prayers, we will update when we know more. Love you all, Jason and Sandy.” Malachi 4:2

JULY 30th

JULY 31st VOTD Ephesians 3:20-21