T + 5 Months







This update is in no particular order.

Happy St. Patrick’s Day a few days late. We and the Wilson’s had a fun time Saturday. Downtown early and in a garage by 7:30 am. Unpacked the car and my car (left downtown overnight) and set up our spot on Oglethorpe Square. Then we’re off to the Desoto Hilton for a big buffet breakfast. We take our time and wander back through the parade route to our square and say hello to many friends. Best new find (for us this year), 4 port-a-john’s mostly hidden by a tent just south of our square. Thanks Karen H. Surprisingly short lines. We had a big picnic and fun at the parade. Karin and I wander to River Street for a few hours after the parade. Paul and Marie take Bennett home for us. He slept through the air horns on the Full Throttle energy drink semi, but didn’t nap long for them back at their house.

Bennett had a good Dr. visit 2 weeks ago. 16 months, 30.5 lbs, 34 inches tall. His rapid growth has slowed a bit, but he is still off the charts. Dr. Ben encouraged us to discontinue giving Bennett a bottle of milk, but rather use more of a cup. He suggests Nubie’s. We make the transition in 1 try. He no longer has to be put to sleep (or close) in our lap. We just give him the Nubie, a pacifier, comfort him and put him in his bed awake.

I have had good blood CBC’s the last 2 weeks. I had a good office visit with Dr. Negrea. He has suggested that I do maintenance Rituxin (the monoclonal antibody therapy) that was part of my R-CHOP chemo. This will be done in 4 visits a week apart every six months for 2 years. We have not determined the start time, but it will likely be in May after my 6 months follow-up testing in Atlanta. Had I not had the transplant, we would have already been doing this as it is standard protocol post R-CHOP. With transplant though, there are no studies published with maintenance Rituxan follow-up. It makes sense that it is the right thing to do, but there have been no published studies completed. I will discuss it more with Dr. Negrea in May, and I may call him before then to get it started sooner. Besides some fatigue by the end of my week when I don’t get all the sleep that I should, I am feeling very good. I am making it through the pollen season without terrible problems. I will see my Allergist in 2 weeks and will get all my meds updated post transplant.

We are having problems catching a break from the medical field (except for Bennett). Karin is probably going to have to have her gall bladder removed. She has been experiencing occasional major pains in her right side for the past month or so. She has also been throwing up/bathroom emergencies along with the debilitating pain episodes. She will get the results from her ultrasound this week. We will proceed from there.

Thanks for all of your continued caring and support. Take care,

Mark