Hello all! Today is DAY +69!! 😉 For updated blood counts, please CLICK HERE
Yesterday we were in Ottawa for Kevin’s routine BMT Clinic follow-up appointment. It was relatively uneventful, except for the fact that it took over an hour for him be called for blood work. I was furious because we got there two hours early to ensure that we would get the blood results before we left Ottawa. I am really concerned about his platelet count. It is progressively going down. When Kevin was finally called for blood, they apologized profusely and told him that his paperwork got mixed up with someone elses. UGH… Then they told him that he should always get called within 15 min of his arrival and instructed him to advise them personally if it’s more than that. This must be the result of me dealing with Patient Advocacy, because he has never been told that before.
It’s ridiculous that BMT patients are expected to wait in a PUBLIC waiting area with all other Ottawa Hospital patients when they are instructed by their BMT specialists to “stay away from crowds”. The place is packed and full of people who have lord only knows what infections or diseases. It’s bad enough that the blood lab techs “are not trained to use his Hickman Line” and therefore poke a needle into his arm, causing unnecessary bruising and site for potential infection. It’s frustrating. It should be changed. Even Kingston’s blood cancer and cancer patients have their OWN blood lab that efficiently provides patient results in a timely manner, yet Ottawa, the capital city of Canada, who claims to provide patients with “world-class care” cannot provide better care to Bone Marrow Transplant patients who are at extreme high risk of dying from ANY infection. These patients deserve a better, more efficient process for collecting their blood. They even deserve to be segregated in an area of the hospital with a separate main entrance, like the Cancer Clinic. I know that not all BMT patients are cancer patients. However, many are and they have already endured so much during the course of their aggressive, invasive treatment. This aspect of the Ottawa Hospital health care system must be improved. It’s sad that it takes a caregiver to recognize this and trying to make the Ottawa Hospital acknowledge that they are not providing the best care to their Bone Marrow Transplant patients is exhausting. – End of rant.
Now back to Kevin. He is still doing well. The GvHD of the skin is still improving, so the doctor reduced his Prednisone dose again and we will see how that is tolerated over the next week. If all is well, the Prednisone will slowly be reduced until eventually he is off of it. So, fingers crossed that the donor cells have finally called a truce and decided to get along with Kevin’s body. 😉
I am concerned about Kevin’s platelet count. It has been going down consistently and Kevin’s bruising is pretty bad. We don’t know what the count was yesterday, thanks to having to wait so long for blood draw. The BMT Clinic will not call us unless it’s close or under the transfusion count of 10. lol The doctor didn’t even examine Kevin physically. He didn’t check his rash, just took our word for it that it seemed to be getting better. He also didn’t check any other part of Kevin’s body. He didn’t listen to his heart or lungs. He didn’t check his lymph nodes. He also didn’t even ask to look at the “bad bruising”. He just stated that the steroid is causing the bruising…. even though his platelet count is low! Oh and he asked him to get up off the chair without using his hands and said he was still doing well. lol I didn’t have the strength to get upset about the fact that the doctor didn’t examine him. It’s the same doctor that told him his excessive thirst and hunger was simply from the steroid, when he first started it, and didn’t discuss checking his blood sugar. Then a few days later Kevin was admitted into emergency for blood sugar that was through the roof. I’ve accepted the fact that some doctors are more thorough than others. However, I hate that we need to travel so far for an appointment like that. – End of another rant.
We should know the results of his PCR test for CML soon. I hope to be shouting from the roof tops that Kevin is finally cancer free!!! I know the results of this test are weighing heavily on Kevin’s mind. I am super confident that the results will be “undetectable”, but until Kevin hears those words once and for all, he is going to worry.
For those of you who are local, I am running a group booking blood donor clinic in honor of Kevin on Saturday, May 16, 2015. I am booking appointments between 11am and 12pm. I know it’s the long weekend, but it’s only an HOUR out of your entire long weekend and you can save up to THREE LIVES in that hour. OH, and burn about 650 CALORIES!!! YES! It’s true! Google it yourself! So, if you would like to join us, please contact me via Facebook or email and schedule your appointment time.
If you are not local, but live in Canada, you can still donate blood in honour of Kevin. You simply register as a member of our team online here: https://www.blood.ca/en/blood/how-do-i-join-team and click “Register as a member online”. A form will pop up and you will be asked to provide our Partners for Life ID # AWES070342 You will provide your personal information and then select that you are a “member” (not an employee) of our team. Once you register, all of your donations, retroactive to Jan 1/15 will count toward our annual goal of 100 donations! Thanks so much for all of your love, support and awesomeness! xo