Jan 24, 2017 Latest post:
Dec 17, 2017
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.
During a routine annual health fair visit in April it was discovered that one of the numbers on Denis' blood test was a bit elevated. After a visit with Dr. Alvardo, who repeated the test to make sure it was accurate, it was decided to check into it a bit further (Thank you Dr. Ali for taking care of us!). A couple weeks & the first bone marrow biopsy later, we found ourselves at Siteman Cancer Center meeting with Dr. Stephen Oh, who got us started on this new adventure called MDS/Leukemia. Since then Denis has had a month of a daily chemo drug at home, 2 weeks in the hospital with penunomia (he had NEVER been in the hospital before this except to be born), many blood tests, a few more bone marrow biopsies, and a couple months of a clinical trial chemotherapy done at Siteman on an outpatient basis.
We were told in the very beginning that the only cure that was possible for Denis was a bone marrow transplant. There are 2 parts to that: One is to get the patient's blood/marrow numbers in the best condition possible - the chemo therapy he was getting was to achieve this; Two was to find the best possible donor for him from an international bone marrow bank. His name was entered into this list & the search begin - there are 10 different numbers that they try to match - blood type has nothing to do with it. Friends & family held a bone marrow donor drive with the help of BeTheMatch and 194 folks between the ages of 18-44 showed up to join the bank. Many more who did not live in the area have also signed up on-line & received their donor kit. We found out on Friday 1/20 that Denis does have 2 perfect donor matches - one that has agreed to be the donor & was to get a blood test the previous Tuesday. We were told that it usually takes 6-8 weeks for this process to get completed. It is definitely good news ! An answer to many prayers by many people.
So, in order to get Denis ready for all this, we will be spending the next month (beginning this Tuesday1/24) at Siteman receiving a very strong, aggressive chemo regiment. He will have 7 days of continuous chemo and then remain there for the next 3 weeks to deal with the side effects & to have treatments as needed (blood, platelets, antibiotics, etc.). We expected the change in chemo treatment - we didn't expect the month in the hospital. But if that's what it is going to take, then that's what we will do. At the end of the month of chemo the plan is (as of now) for him to be at home 1-2 weeks depending on if the donor marrow is ready and then to return to the hospital for the next 4-6 weeks to get the transplant. That's the plan as of now - still writing down everything in pencil and carrying a big eraser. At least we have a donor and a plan in place with action in the middle. While not looking forward to so much time in a hospital room, we are ecstatic that it's because we have a perfect donor (actually had 3 - one could not commit to it at this time). We know nothing about the donor - don't think it is anyone from our drive here since it is so quick. We will find out that information a year after the transplant if both parties agree to meet. Thanks for keeping us in your prayers - please continue. While we have a light at the end of the tunnel now, the space between now and then looks pretty challenging & unpleasant. Our plan is to do the best we can and let the Lord do the rest. He got us to it and He'll get us thru it. Thanks for all your cards, phone calls, prayers, conversations, and support. SO glad to have all of you on our team. I''ll do my best to try to update this site regularly.