Yesterday, in addition to chemo, my Dad received his first dose of ATG (antithymocyte globulin). ATG is an immunosuppressant drug, one that lowers the body’s immune response. ATG is used as an anti-rejection drug for stem cell transplant patients, with the hopes it will allow the bone marrow to grow and make new blood cells. Patients are unable to leave the hospital once they begin taking this drug, as it comes with many possible side effects that the medical team must closely monitor. So, Jer is back to adult sleepovers at Hotel du Foothills.
‘Fun fact’: the medical team calls ATG, the rabbit drug… because it is made from rabbits. I was wondering why my Dad had begun to do the Bunny Hop to the bathroom. Now I know why.
Today is Monday, or as people around here would call it, Day minus 1. This morning my Dad underwent total body radiation, and is currently receiving ATG. Later this afternoon, he will go in for his second, and last, dose of total body radiation.
If you didn’t catch it…Sunday was our last day of chemo… hopefully…forever!!!
Tomorrow is Day 0… TRANSPLANT DAY!
The transplant team set a number we had to reach in order for us to begin chemo safely… and I’m happy to report that Jer crushed it! He is not ‘back to normal’, but with much hope and positive thoughts, my Dad’s liver levels have came down enough for us to begin the transplant process. Hiiiigh-five (in a Borat accent)!
On Tuesday, my Dad had the test dose of chemo. This round of chemo is different then the others as he will be taking different chemotherapeutic agents, which are both (yes, 2 different drugs), quite aggressive. The test dose is done to make sure the amount of drug administered is the correct dose for my Dad’s height, weight, and condition. He had blood drawn every hour, for 7 hours once the drug had been administered to see how his body was reacting and metabolizing the drug.
Today my Dad started one of the chemo drugs (this one was not tested, as it isn’t as sensitive). This drug will be used for all 5 days of chemo, and tomorrow, the second chemo drug will be added and piggyback the first drug for the remaining 4 days of chemo.
Today is a BIG DAY in the Team Jerry world. Today, my Uncle Don bravely donated his stem cells! My Dad and Kelly went down to visit him during this process, and told me that Don was looking great, feeling great in spite of the fatigue, and he said it didn’t hurt one bit!
Stem cell donation is a completely self less act, and we are so appreciative and incredibly thankful that my Uncle has agreed to participate in this process.
Just when I told you there was a plan…
We were SCHEDULED to have the test dose of chemo last Tuesday, but we had a minor setback.
About 10 days ago, my Dad began to experience severe abdominal pains, which were only relieved by taking T3’s. The medical team had my Dad come into the hospital to access what was going on. The blood work showed that one of his liver levels, his ALT level, was elevated…a lot. As it was the long weekend, and the pain had ceased, they monitored him with daily blood work until the doctors came back from their camping trip (that’s a lie, I’m sure doctors don’t camp). On Tuesday the transplant doc decided to go ahead with the central line procedure, but ordered an ultrasound and a CT scan to further investigate the liver situ. Both the ultrasound and CT came back clear, but his ALT level was still elevated (it had came down a bit since the spike over the long weekend, but not near normal).
The transplant team made the executive decision to delay transplant until the ALT number had decreased to a level where they felt comfortable proceeding. We were instructed to go home, and return to the hospital every second day for blood work so they could follow my Dad’s levels.
Unlike Team Jer, Team Uncle Don is still following their regime, and the transplant team will be harvesting his stem cells on June 1st, which will then be frozen until my Dad is ready to accept them. Please keep Uncle Don in your thoughts tomorrow as we are all hoping for a smooth, easy and successful donation!
From now on, I promise, no more lies. That hurt me as much as it hurt you.
I am sure everyone missed me… how could you not?!? Have you seen this face?
These last few weeks have been great! We managed to sneak away to Victoria for 4 days, where we caught some nice weather, felt the ocean breeze and saw some beautiful scenery. That trip was much needed for all involved. My Dad was even able to break free from prohibition and have some drinks! After not drinking for over 3 months, I am sure he was sauced after one drink… jealous. While in Victoria we had a very good friend of mine take some family pictures of us at Fishermen’s Warf. We are all eagerly awaiting the results of this photo shoot and will definitely be sharing some pictures with you all when they become available.
Now back to reality.
At the beginning of May, my Dad was discharged from the hospital and released from the care of the hematology team. The hematology team at the Foothills was outstanding! There are no words to express how thankful and grateful we are for everything they have done for our family in the last 3 months, but I hope they know how valued their work is. Today, my Dad was admitted back into the hospital. The bell has rung and the trade deadline is over. We have officially been traded to team Bone Marrow Transplant (BMT).
Today my Dad will be getting his CVC (central venous catheter) line inserted and will undergo a test dose of the chemotherapeutic drug that they will be administering in the coming days.
I will try to update the blog every day or two, so I can keep everyone up to date and by our side as we embark on this next chapter of our fight against leukemia. Stem cell transplant, here we come!
**a Jer Diddy post**
While recovering from round 3 of chemo we learned my oldest brother Don was a donor match. As a result we had a decision to make on my treatment plan- whether to carry on with chemo for 2 more rounds, or proceed with a stem cell transplant.
We met with the doctors and the transplant team and were provided with all the statistical outcomes for each treatment plan, the risk factors and the possible outcomes for my genetics, age, health, etc. After going back and forth on a decision, we decided to proceed with the transplant. While the transplant comes with higher risks and are told will be more physically and mentally challenging than what I have experienced to date, it offers much greater odds for a full recovery than does continuing with the chemo alone.
The transplant is scheduled to occur on June 1. Both Don and I are going through numerous medical tests in preparation for the transplant. I will be admitted back into the hospital a week ahead of time to receive chemo and total body radiation. This is to help my body accept Don’s stem cells. On morning of June 1st they will take Don's stem cells from his blood (a process that takes 5 to 7 hours) then that night transfuse them into me. The following 90 days are critical in the recovery and dealing with grafting issues and other possible complications, mostly risk of infection. Similar to chemo, I will be immune suppressed and most of this time will be spent in the hospital.
I can't thank Don enough for doing this. Don has always been a big brother who has always looked after his younger brother and been there for me throughout my life. Again he has stepped forwarded without even asking, Thanks bro.
Other than trips to the hospital for appointments I am spending my time resting and my new job – eating… as much food I can to try and put back the weight I have lost; as it will be all coming off as food intake becomes a problem during the stem cell procedure. (Sam note: Its awesome having all these high calorie foods in the house and watching someone try and GAIN weight, when I am eating my rice crackers and going to the gym… every woman’s dream roommate) We also plan to take a quick trip to Victoria to spend some time around the ocean and smell the flowers.
A big THANKS to everyone for your continuing prayers and positive thoughts as I go through the next round in this fight.
**Sam note: For everyone that is wondering…. We DID get out of the hospital in time to have Easter chocolates at home! No hospital Easter egg hunt, unfortunately.
