It’s DAY +0.5… Well the doctors call it a “double Day 0” and the BMT nurses call it a “Day +0.5″… so I’m going with the BMT nurses because they are awesome! The only explanation that we were given about why today is not Day +1, is simply that Day +1 is the day they start the Methotrexate treatments and they couldn’t start them today. I will learn more about these treatments tomorrow. However, what I do know is that they are small doses of chemotherapy that “keep the donor cells quiet”. The doctors also mentioned that the Methotrexate can and most likely will cause Mucositis (painful mouth, throat and digestive tract inflammation and ulcers). OH JOY!!
Kevin’s blood cell counts have dropped faster than anticipated. For updated blood counts, please CLICK HERE. The doctors said that he must have “sensitive bone marrow”. The counts usually take about 7 days after transplant to bottom out, but his white blood cell count is already at 0.8 (normal is 3.5-10.5) so they started antibiotics early. His platelets are 37 (normal is 130-380) and his Hemoglobin is 125 (normal is 140-174 for a man) This is why Kevin is pretty sick and weak. He is also very high risk for infections, fevers and bleeding. The doctors seemed to be a little bit concerned about this, but they were happy to tell us that the donor was able to give Kevin a super fantastic amount of cells… 7 million/KG of Kevin. (They usually hope for at least 3 million/KG) The reason that is good is because that means the donor should engraft a little sooner than usual. We shall see! In the meantime we need to be extra cautious about making sure Kevin does not get any infections or bad bacteria in his body. I do disinfect the entire apartment every day, so he is safe at home… just getting to and from the hospital is a bit tricky. However, he does wear and mask and gloves and washes his hands like crazy and I make sure I’m sanitized before I get him anything or touch him.
Kevin is having a hard time staying awake today. I now have to check his body temperature frequently…. (He LOVES that! lol) He can’t eat very well, but he is able to keep the Ensure drinks down. He did manage to eat and retain some of his favorite lasanga that I made for him. So that is awesome! Small victories mean a lot at this stage. The doctors did double up on his nausea meds, so perhaps that is helping. Kevin says that he feels like his own weight is crushing him and it’s hard to “carry” himself around. Again, all of this is normal given his circumstances, but he must try his best to keep his energy up and exercise when he can. His organs depend on it. This is one of the benefits of the OUTpatient program. Kevin is forced to get to and from the hospital every day for about 6 weeks. When he is not strong enough to do that, and that time might come, he will be admitted.
A lot of Kevin’s strength comes from the support that he has received by so many awesome people and I second that! We couldn’t get through this without so many of you! The kindness, encouragement, positivity, humor, hope and prayers are overwhelming… in an awesome way! All of that stuff is powerful! It really is. Science can only do so much under these circumstances. Kevin gets teary eyed when he talks about how much he appreciates each and every one of you. Yes…big men DO cry. ; )
Many of you have commented about how inspired you are by how we are handling this situation. There are two ways of dealing with ANY situation… you can make the best of it or you can let it get the best of you. That’s why we choose to focus on the positive, recognize the blessings and find the humor, even in the face of seemingly insurmountable adversity. Not to say that there are not moments of weakness and worry, because there definitely is. We just don’t dwell there for very long.
Kevin makes it easy to care for him. He means the world to me and my children. He’s my true soul mate. He is kind and genuine. We laugh every single day…even on the worst days and I need to keep him around so he can continue to make me happy until we are both old and senile! Then we will be new soul mates! lol
It’s time for me to get some sleep! We will be back at the hospital at 8:00am. I will update about our adventure again tomorrow. Thanks for stopping by!