Parrish's Place: A Change in Scenery (and in Plans)

My lack of posting is a clear indication of the craziness around these parts. As of Tuesday, we are officially no longer home owners. We are currently renting back from our buyers and still looking for a house to rent for a year while Parrish undergoes his bone marrow transplant/recovery. Rental houses are much harder to come by than I thought they would be, and we can't be just anywhere. We have certain needs relating to our two small children and Parrish's medical issues that make finding a rental even more complicated. But, I am keeping the faith (and frantically searching). I am also somewhat in denial about packing, but super excited about lightening our load. I secretly enjoy moving because it gives me an excuse to de-clutter my life. Goodwill better get ready because I've got lots of goodies coming its way!

A couple weeks ago, we did manage to escape to the beach. I had been lamenting the fact that the boys would not get any sort of vacation this year, and honestly, everyone desperately needed a change of scenery. So, we literally decided on a Friday morning to just go (and to leave the next day). Of course, cancer can get in the way of even the most last minute plans (a lesson I keep having to re-learn ). Parrish ended up not being able to go with us because of an infection in his foot. He got a mosquito bite or scratch on his foot that got some bacteria in it. A healthy person wouldn't have even realized it, and the body would have fought off the bacteria. Not so with Parrish. Because his white blood cell counts were so low, his body couldn't fight off the bacteria. He ended up with cellulitis in his foot that the doctor treated with IV antibiotics, followed by oral antibiotics. Trust me when I say, it was not pretty (and still isn't). After two full weeks of antibiotics, the infection is better, but still not completely gone. Something like this infection reminds all of us just how fragile Parrish's body is. It is easy to forget sometimes because he appears to be so highly functioning most days. But, even a small infection can wreck havoc on his body.

So, what about the BMT?

Well, we met with the BMT folks on Monday. The doctor wanted to see Parrish's foot, and we were supposed to receive the transplant schedule (with things to get started this week). Note: "supposed to." The doctor was concerned about the infection in Parrish's foot not being completely healed. So, he ordered another week of antibiotics. That means the BMT protocol gets pushed back a week. This wouldn't be that big of a deal, but it also means that Parrish has to have an additional round of chemotherapy. Typically, a transplant candidate has a pre-transplant dose of chemotherapy (in addition to the high-dose transplant chemotherapy). Parrish's third round of treatment was going to count as his pre-transplant chemotherapy. But, now, too much time will have passed between his third round and the start of the transplant process. So, he has to endure another round of chemo. Ugh. The doctors are hoping that they will be able to do this extra round out-patient, but we won't know for sure until tomorrow. In addition, Parrish will have to repeat all the pre-transplant tests, because he will have had more chemo. This just draws out the process even more. Not really the news we wanted to hear.

But, we have taken a lot of deep breaths since Monday afternoon, and are both in a little better place about things. Given the setbacks, Parrish likely won't go in-patient until mid-June, but the start date for all of the pre-transplant items will be mid-May. On May 13th, he will go in to have a special transplant IV placed in his chest (on the opposite side of his current port). The BMT folks use an IV line that runs outside the skin, not under the skin like his current medi-port. With transplants, you have to minimize all risks for infection, and under the skin ports can in small cases cause infection. He will have some light sedation for that placement, but it is done as an out-patient procedure. On May 14th, Parrish will have a follow-up appointment with the BMT doctor, and then on May 15th, he will have his pre-transplant chemo dose. On May 16th, he should start the seven days of Neupogen shots which will cause his body to produce a large amount of stem cells. These shots are given at home (by "Nurse Molly"). Then, on May 23rd and 24th, the doctors will collect the stem cells. Again, this is an out-patient procedure done in the BMT unit. Parrish will be hooked up to a special machine that will take his blood out, filter the stem cells for collection, and then return the blood to his body. They attempt to collect a minimum of four million stem cells, so depending on how many are collected at a time, it can take 1-3 days.

After that, there is just a waiting period (you must have a minimum of four weeks between the pre-transplant and transplant chemo doses). So, the doctors will let Parrish recover from the pre-transplant chemotherapy and the collection process. Then, mid-June, Parrish will begin the transplant chemotherapy regimen and will likely go in-patient around that time. This part of the calendar has not yet been determined, so I don't have actual dates. He will spend three to four weeks in-patient on the BMT floor. With the delay in the schedule, it means that Parrish will definitely be in the hospital for our 10 year anniversary and likely for both the boys' birthdays. Of course it isn't anyone's fault, and it is just the nature of the beast, but on top of everything else, that realization is a hard one to stomach. Most of our friends have celebrated their ten year anniversaries with a fabulous vacation...Parrish gets an all-expense paid trip to the BMT unit. Not exactly what he (or I) had in mind. But who knows, maybe Highlands will do carry-out dinner for two on the transplant floor!

Whew. A lot for one post. But hopefully that catches everyone up. As we head into the next few weeks, we would ask for prayers for Parrish's infection--that it will heal more quickly and completely so that the BMT protocol can begin, for a rental house to work out--so that we can have some clarity on where we will be living for the next year, and for peace and strength for us and our sweet boys.

Much love,
Molly

**A few beach highlights...as you can see, this change in scenery brought a lot of much needed smiles and laughter. (Thank you, thank you, thank you to my Mom for helping with and making happen all the (crazy exhausting!) fun.)