August Doug went to the doctor in late August because he suspected (correctly) that he had a blood clot in his right calf. The routine blood test sent us on this surreal journey. It started with "bizarre" platelets. Platelets of unusual size or shape. My response - Bizarre, you do know Doug right? Then it was immature or blasts of white blood cells. My response - Immature, you do know Doug right?
September Started treatment with Dr. Moran at the Rocky Mountain Cancer Center. He said he needed to test to find out if this was CML or ALL. Doug was hoping for CML so he could tell people he has "Chronic" and because it is a less aggressive form of leukemia - but mostly he wanted to be able to tell people that he has "Chronic" because we live in Colorado. Still can't wrap my head around the fact that he had a blood clot and we were staring down blood cancer. Doug had no signs, no symptoms, nothing to indicate that he is terminally ill. He just isn't sick.
On September 24th the hemotologist gave us the results from the first bone marrow biopsy - Acute Lymphoblastic Leukemia, with Philadelphia Chromosome Positive. Dr. Moran explained that two branches in the DNA chain, specifically 9 and 22, translocate by breaking off at a certain point and reattaching on the other branch. This was discovered in Philadelphia, thus the name. Found it quite ironic that both Dr. Moran and myself have birthday's on 9/22. Dr. Moran never made that connection, leave it to me. ALL is very common in kids, rare in adults, and complicated by the PH+.
Friday, September 28th Doug started on an oral chemotherapy/tyrosine kinase inhibitor - Dasatinib - and steroids. By the following Monday's appointment, all his blood counts were in the normal range. Doug asked Dr. Moran if he wanted to change his diagnosis. We're told that the only option going forward longterm is a bone marrow/stem cell transplant. I did ask Dr. Moran if we needed to go to a pediatric oncologist because they have a 95% success rate. He explained that kids go through 3.5 YEARS of chemo and adults can't handle the regimen. Asked Dr. Moran if we could travel to Bozeman to tell Bryan, and his response was "if Doug feels up to it."
October First order of business was to fly to Bozeman to tell Bryan. This is something that can only be shared to family in person and since he's the farthest away we needed to talk to him first. Not only did we break this news, I showed up with a stack of documents that I needed him to sign to get our estate in order. That was probably a little too much to drop on him all at once however I needed everything in order for my sanity.
At the referral with Dr. Purev at UCHealth we were told that bone marrow transplant is the only option if he wants to live, which he does. Dasatinib will continue to work for some period of time however leukemia is "smart" and will mutate and build up walls to prevent the medicine from working. Then if he can't get back in remission he will have missed his window of opportunity.
The next thing to do was to break the news to Doug's family. "Good news was that Kevin was good. Bad news was that Doug has ALL." Asked his siblings if they would be willing to be tested to be a bone marrow donor. All 3 were half matches. Kevin was ultimately selected because men produce more stem cells because they have larger bones: stem cell factories.
November Because Doug already had his hunting license, lodging and everything planned he made both oncologists schedule biopsies and testing around his week off. Afterward, Dr. Moran said he wouldn't tell Doug he couldn't do anything because he clearly felt well enough to do anything he darn well pleased. I do believe that Dr. Moran was amazed at how healthful Doug was at this time.
Met the Transplant Coordinator Ellen and the entire Transplant Team - psychologist, social worker, dietician, and pharmacist. They also all commented on how healthful Doug is going into transplant and thought that he will make it through much better starting from such a strong position.
The bone marrow biopsy in November showed minimum residual disease was positive at 0.06%. Doug is in clinical remission however not in molecular remission. Dr. Purev said that based on blood counts and testing available 5 years ago that they would have told us that he was cured and sent him home, until he relapsed. Leukemia is a difficult disease that will eventually grow back without the transplant. Today's testing is much more sensitive which is how they know that some leukemia cell is hanging out somewhere. Dr. Purev is the ALL specialist at UCHealth and the Blood Disorder Center does 120 bone marrow transplants a year. UCHealth is ranked in the top 10 in the nation for the last 4 years based on success rates.
Since Kevin is a half match they will use 1 unit of his blood as "seed" in a haplo transplant. They aim for 5-8 Million cells from the donor. Kevin predicted 13 Million and gave up 12.99 Million cells. They will take 8 Million for Doug and freeze the rest. The cells they are specifically isolating are the CD34 cells. These cells will provide a bridge for Doug's immune system and teach the baby stem cells where to go and what to do. The other unit is umbilical cord blood from a baby boy in Michigan. Doug says it is Kid Rock. Cord blood uses 6 markers and Kid Rock matches 5. Dr. Purev said that the other marker will help fight the leukemia. They use 10 markers for sibling match. Haplo and umbilical cord transplant has a higher success rate without chronic graft vs host disease than matched unrelated donors according to the team. It is more expensive however Dr. Purev doesn't want to trade one disease for another. Shahla paid it forward by donating Mia's cord blood at birth.
Chimerism (pronounced with a hard K and a long I) is the testing that they will track engraftment. Every one has similar DNA however there is a specific area that each person's DNA is unique. They will test Doug's blood each day to see what percent of his new blood cells are from his original, Kevin's, or Kid Rock's. As engraftment takes place the percentage of Kid Rock's will increase - eventually to 100%. It makes my head spin knowing that Doug will also be receiving units of blood from others during this time and they can isolate new blood cells in their testing.
Today is 2 years post transplant - called by many his rebirthday.
Remember the really expensive oral chemo drug that made Doug go into clinical remission oh so long ago. Well last night was his very last dose!!
Tomorrow he is planning on having a grapefruit with grapefruit juice and a Squirt on the side. He's been missing grapefruit - because he was told he couldn't have any. :) I told him that he can't have millions of dollars ... so you know what that means right? <wink wink>
The doctors moved his 2 year survivorship appointment up a couple of weeks and all his blood tests look fantastic. Everything is in normal range - except the creatinine - the kidney marker.
I'm sure you also remember the episode at the Emergency Department in February 2019. Well it turns out that between the chemo, radiation and that emergency visit Doug's kidneys took a hit and have not recovered. He has now been diagnosed by Dr. Flood (really) as having Stage 3A Chronic Kidney Disease. This is the lowest level of Kidney Disease and doesn't require any treatment. Dr. Flood will continue to monitor his kidneys to make sure nothing advances or deteriorates.
Doctor appointments are now stretched out to 6 months for 2021 and then annually after that until 5 years post. Happy dancing!
Endurance and strength are improving all the time. Looking at him I don't think anyone would guess that 2018 was the year he had Leukemia.
He told the doctor that he isn't worried about Covid-19 because he's 2 years old after all and it doesn't seem to affect kids too often. The doctor cracked up when he told her that. Same goofy sense of humor.
Very very mild graph versus host disease of his skin which the doctor sees as a good sign still. Given a list of symptoms to watch for but the doctor isn't too concerned. Each day lessens the chances of relapse so keeping fingers and toes crossed.
Hope that everyone has a safe and happy 2021. Thank you one and all for all the support during this adventure.