Give Life

Receiving my second platelet transfusion.
32 /100

I tested positive for covid in November and ended up in the hospital for a couple weeks. Not necessarily for covid but what it exposed. When they admitted me to the hospital, they took a blood test and discovered my platelets and red blood cells were “shredded” as the doctor described it. I ended up having 4 blood transfusions in the hospital. I have had 2 units of blood and 2 units of platelets in the past week or so, I have another blood transfusion in the morning. They did a bone marrow biopsy, and I got the results of that this morning. I have been diagnosed with myelodysplastic syndromes (MDS) with excessive blasts (High Risk). My doctor has put in a urgent referral to University of Washington and now we wait for an appointment. My doctor said her job now will be to monitor my blood and schedule me for transfusions as needed. Not sure where this will lead but prayers and good thoughts are welcome.
I would like to add how important it is to donate blood. Right now, they are keeping me alive with transfusions. Please donate blood thru the Red Cross is you are able. Someone’s life is depending on it.

Moving to Caring Bridge

Posted on: April 23, 2022

I appreciate all you blood and platelet donors. I set the ending date of my Sleeves Up campaign on my birthday and I cant find a way to adjust the end date. So i have migrated all these updates to my new Caring Bridge Site. I will try to be more consistent with updates in the future. I am doing well started my 4th cycle of Chemo with no side affects so far. Its a big weekend here as My Brother Tom and My brother Dave and his wife Dee are here for the weekend. Nice to see everyone. I get handed off to the transplant team next Wed. 4-27-22 to start the next phase of my treatment.
Thanks for being a donor and I really appreciate your support.
My new Caring Bridge Site is: https://www.caringbridge.org/visit/markhohn

Thanks
Mark

Started Cycle 3 of my Chemo this week

Posted on: March 22, 2022

Thanks to all you who have pledged to donate blood and I appreciate all of you who have contacted me or sent a photo of you donating blood and platelets I am up tp 56 units of blood projects so far. All the blood sample tubes are what we collected at the end of cycle 2 of my chemo. Research requires several so they can track my progress. We are starting to get the results in from my bone marrow biopsy. Initial results look promising. The flow cytometry test indicates my blasts (undeveloped red cells) have been reduced from 25% to 4% last week. The goal is zero blasts. This is really positive news and tells me the chemo is doing its job. I have a follow up with my Hematology Oncologist this week and hope to get more insight and her opinion of my progress. I started Cycle 3 of my chemo this week. Its a continuation of the trial I have been on the last 2 months. I am amazed that I do not have any real side effects from the treatment and pray it stays that way. Short update this week and if you are able please donate, It helps everyone in your community that might need blood. Thanks you all for your support. #keepmarkalive #donateblood #Sleevesup #savealife #givelife

Biopsy week

Posted on: March 13, 2022

Thanks for your pledges to donate blood. I hit the 50 units of blood and platelets transfusion milestone this week. 27 units of blood and 23 units of platelets. Never thought I would ever be tracking how many blood products I would receive. I just finished my second cycle of chemo therapy. I still feel good and do not have any side effects to speak of. This next week we will do my third bone marrow biopsy to see if the chemo is doing what the doctors expected it to do. Once they get the results we will discuss if we proceed with a third cycle of my current chemo or do something else. The goal is to get the blasts (undeveloped red blood cells) to zero in my blood. I still have a blasts show up in my blood but the bone marrow biopsy is the only way they can get an accurate measure of the total blasts. Again thanks for supporting me and even if you are not is the Seattle area you donations will help someone in your community. I would not be here today if it wasn’t for donors like you. Once again Thank you!

I am still here

Posted on: February 26, 2022

Sorry for the lack of updates. I am still alive #keepmarkalive. I have started my second cycle of chemotherapy and have survived the first week. We have to get an infusion every day for the first 8 days. That makes for a long week, Our Friday appointments are the longest as we meet with out care team and the infusion appointment is usually scheduled for 8 hours. We got home last night about 9:30. The chemotherapy s going good as i still feel good other that some fatigue. I went thru my records today and totaled up all the blood and platelet transfusions I have had since my diagnosed in November of 2021, It turns out that since my hospital stay in November i have received 22 units of blood and 18 units of platelets.. That is only possible because of donors like you. I will need blood and platelets until I have a successful stem cell transplant. We are working hard to get there. Again thanks for being a donor and encourage others to donate as well. Special shoutout to my sister Sheila and her daughter Heather they seem to be platelet generating machines and have scheduled or have already donated platelets. Thanks for helping to #keepmarkalive. #giveblood #sleevesup #givelife.

PS I try to send each donor a thank you by using the thank the donor app on my phone. I can send a phot and a note that they receive anonymously. You can visit their facebook paher here: https://www.facebook.com/search/top?q=thank%20the%20donor

What is in the green bag?

Posted on: February 2, 2022

Thank you to all the donors and supporters. I am still being kept alive with blood and platelet donations from friends like you. The green bag in the photos is part of my chemotherapy regimen. I am taking part in a chemotherapy drug trial at Seattle Cancer Care Alliance. The trial is to measure the effectiveness of adding in a new drug Magrolimab in conjunction with an existing chemo drug Azacitidine. It is a blind trial so I do not know if I am getting the Magrolimab or a placebo. This is real science. I will go thru at least 2 cycles of chemo in this trial. I will have a bone marrow biopsy after each cycle to measure the effectiveness of the chemo. I have myelodysplasia with excessive blasts and the chemo goal is to reduce the blasts to zero in my body. Blasts are undeveloped cells that should have matured into red, white or platelet cells. My marrow is defective and that is the problem we are going to correct with a transplant. On the transplant donor front we got good news last week. My younger brother Dave was a match for being my donor. He was a 10 out of 10 match for the markers they look for in a donor.
I am tolerating the chemo well. The only side effect I have experienced is some random episodes of fatigue. A nap on the couch takes care of that. I am fortunate that the side effects have been minimal. That will change I am sure once we move into the transplant stage.
Thanks again and I apologize that this update is a bit long. Thanks for committing to be a donor to #KeepMarkAlive

Mark’s cancer Update, starting chemotherapy

Posted on: January 22, 2022

This is how most trips to Seattle Cancer Care Alliance start. A stop in the lab for blood draw is normal. In this picture I only have 3 vials. The most I have had in one day was 12. Each vile is important to help inform the days activities. Most times its to check the levels of hemoglobin and platelets with a cross and match to make sure I get the right Blood (0+ if your curious). Those two numbers drive my transfusion schedules. I have been getting additional blood this past week because the drug trial I am in requires a hemoglobin level of 9 or above. Normal range is 13 to 18. I am in a blind trial to test the effectiveness of a promising new drug to help high risk MDS patients like me. I do not know if I am getting the real drug (Magrolimab) or a placebo. That’s called science. The chemotherapy cycle is about 28 days. After the first cycle I will do another bone marrow biopsy to measure the effectiveness of the trial. The goal of the chemo is to reduce the number of blasts in my blood. Blasts at underdeveloped blood cells that my defective bone marrow push out. My blasts have been as high at 10, the goal is zero blasts. The fewer blasts in my blood when I go into bone marrow transplant the higher the rate of success for the transplant. My Nurse practitioner indicated that it may take 3-4 months to get my blast to hopefully zero.
On the transplant donor front I got promising news that my brother Dave looks to be a match. Need some additional testing and such to confirm but that made me smile when I got that report.
That’s a lot to just thanks for donating blood. Your donations are keeping me and countless others alive. Each package of blood comes with a green heart attached from Thankthedonor.org. I have started sending anonymously thank you notes to the donors that actually donated the blood I am receiving. Pretty neat idea. I hope the thank you means as much to them as the donation means to me.
Thanks for all you prayers and support.
Mark
#keepmarkalive #giveblood #sleevesup #givelife

Another week another infusion

Posted on: January 8, 2022

I appreciate each and everyone of you who have pledged to donate blood.
Midweek i received another transfusion of blood and platelets at Seattle Cancer Care Alliance. The last time I got both blood and platelets it kept me going for a full week before i needed a transfusion. We are testing that combination to see if that will work to limit my time in the infusion center.

Working with my doctor at SCCA we have a plan and are moving forward with our treatment plan. The rest of this month is appointments to make sure I am healthy enough to get started. I have an EKG and another bone marrow biopsy scheduled next week. As always prayers and good thoughts are appreciated and welcome.

Thanks again,
Mark

Happy New Year!

Posted on: December 31, 2021

Just wanted to tell you all Happy New Year .
I have a 7:30 appointment at the infusion center on New Year’s Day to get tested and see if in need another transfusion. I can tell from my energy level that I will probably get at least another unit of blood. My last transfusion was on Christmas morning and I received one unit of platelets and one of blood. That combination seemed to work well for me as it’s kept me going for a full week. Happy about that.
I had my first appointment at Seattle Cancer Care Alliance this week. I met my doctor and they took a bunch of blood to start the process. They also took blood to start donor matching process. They said it takes about 4 weeks to process my blood to start the search. Three of my siblings will get tested to see if they are a match. This will be a long haul until I am at the point they can actually do the stem cell transplant as part of my treatment. Stem cell transplant and bone marrow transplant are equivalent terms. I appreciate your support and good thoughts and prayers are welcome. Lets hope 2022 is a year of health and healing for everyone.
Happy New Year!

I have an appointment at Seattle Cancer Care Alliance today!

Posted on: December 28, 2021

Seattle is in the midst of a snow and cold event. We have 8 inches of snow at the house and temps are in the 20’s. SCCA called me yesterday and said they had a cancellation and would I be able to make the appointment today. I said yes. We will be trekking to Seattle soon to have out first appointment with the SCCA Doctor. Excited and nervous at the same time. It will be comforting to finally have a treatment plan.
I spent The Morning of Christmas Day at the infusion center getting a unit of platelets and a unit of blood.
I came home to a house full of kids and grandkids. The day was perfect.

Thanks for your support and donations of blood.

Mark

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