Day +9: Holding Steady
June 25, 2008
From Lisa:
Hi Everybody,
- Managing side effects has continued to be a challenge, but Roger is more comfortable today. Since we last wrote, he’s had a couple of red blood cell transfusions and one platelet transfusion (with another on the horizon). These boosts of blood and platelets will continue until the engraftment occurs and his new system becomes self-sustaining.
- Because the morphine made Roger quite itchy (as though he had bugs crawling on him), he’s switched to Dilaudid for pain relief. It occasionally feels as though we’re just swapping the side effects of one drug for those of another, but Roger seems more satisfied with Dilaudid at the moment.
- Despite the mucositis and nausea, Roger is trying to reduce modestly the number of meds he gets via the Hickman line and to take their equivalent in pill form. Although we know it will be some time before he can be released to come home, we both feel more independent, and therefore better psychologically, when his IV pole is not groaning with 8 (or more) bags of meds and fluids. There may still be days coming when he cannot swallow the small mountain of pills he faces a couple of times a day. But every day he keeps swallowing, we treat as a victory.
- One other issue has been a significant rise in Roger’s blood pressure, apparently due to the cyclosporine that he is taking to prevent future graft vs. host disease. The team is still experimenting with various blood pressure meds to find the optimal mix to control the newly elevated BP.
- The fabulous sunshine we’ve been enjoying for some time is still with us, so the girls are having a blast in their kayaking/rowing/sailing camp this week. We’ll post some of Caleb’s photos of their fun later today.
- We feel very fortunate to have such a supportive family and group of friends. Thank you for helping us through this. Roger will write soon.
June 25, 2008 at 2:36 pm
Thanks for the update- keep them coming!!! As you know, I was BP meds for a few months because of the TAC. I was on Amlodiphine/Norvasc and have been off for almost a week. You both are doing a wonderful job and keep trying to take some pills orally. I know this is a tough time post transplant- it WILL GET BETTER!
-Lea
June 25, 2008 at 5:41 pm
Dear Roger,
Hang in there!! Wow! You are doing so great!! I can’t believe that you walk so much every day. I know your Mom is there now which is wonderful. Tell her I’ll miss her tomorrow (Thursday) at our lunch at Rehearsals Cafe!! I’ll tell everyone there about your progress. There are some people who still don’t have computers!! Can you believe it???
Say Hi to Caleb for us. I think he knows us better than you do. I enjoyed seeing the pictures that were sent several days ago — especially the one of you and Caleb together. Looking forward to pictures of the girls at camp!
Love and hugs from all the Littlefield’s
June 25, 2008 at 9:18 pm
Dear Roger and Lisa,
Thanks for the update. I check your blog every time I get to my laptop, and every time my thoughts and good wishes are sent your way mentally.
We are looking forward to Connie’s and Caleb’s visit tomorrow.
Glad to hear the girls are having a good time.
We hope to welcome all of you to Whidbey Island in the near future.
Fondly,
Alya Baker
June 26, 2008 at 6:02 am
Hi Lisa and Roger:
Thanks for the ongoing updates. I know the progress is slow but ‘holding steady” is good news! So wonderful that Connie and Caleb are able to be there much of the time, and always look forward to Caleb’s photos of all of you. I am hoping that the amazing Seattle sunshine is a harbinger of good things to come for all of you
Love Marly
June 26, 2008 at 8:22 am
Many thanks for the update. Think of you guys every day. Keep on holding steady, and popping those pills! You both are doing an amazing job of getting through this. Shway shway, you will keep on chipping away at this thing until it has passed, and you can move on with your lives.
Off to Sharm tomorrow. Will give the big guy your best.
June 26, 2008 at 9:46 am
Hi! I’ll try not to be selfish and ask that you send sunshine our way. We’re to have rain for several days, so it may be falling on our Strawberry Festival this Sat. at church for which Bill picked 46 lbs. of berries. Oh, well, they’re good wet or dry.
I continue to be amazed at how marvelous you are doing day by day, both of you. Our continued love and prayers that the side effects will lessen. We think of you often every single day!
Love,
Jan and Bill
June 26, 2008 at 5:10 pm
Dear Roger and Lisa,
Thank you for the updates.
We hope the new drug will help the mucositis in a more
beneficial way, and that the doctors will find the best
blood pressure med possible.
Once again, the courage and perseverance of you all is
without description. We are full of hope for you all.
It is wonderful that your families can be out there with you;
I know Margie is really looking forward to going out there.
Our love and prayers from our hearts continue as always,
Love,
Suzanne, Ken and Jennie
June 27, 2008 at 9:47 am
Roger and Lisa: Perhaps it is symptomatic of my lamentable obliviousness that 7 months after you all departed post, I just learned why. I’m plumbing the depths of my soul to find and send you what positive energy I can, late though it is. Your courage is inspiring and humbling to those of us who think we face difficulties…but we really have no idea what it truly means to struggle. Forgive me for not adding my own voice to the hundreds who wish you well before today, but please know you are and will be daily in my thoughts. Take comfort in the love being sent your way by all of your friends and colleagues, but most of all in your love for each other. Cathy
June 27, 2008 at 8:10 pm
Dear Roger,
You are such a brave, courageous person and we read your updates and Lisa’s postings knowing that every day you are dealing with your transplant in the best way possible with the best team possible. Know that when you walk the halls you have many people walking with you in spirit. We would love some of your wonderful Seattle weather here and are so happy the girls are enjoying camp and school. We read your postings and think of what you are going through every day.
Judy
Judy
June 28, 2008 at 6:53 am
Thanks to Lisa for filling in when needed to keep the updates coming. It sounds like slow-and-steady is the order of the day, so keep it up, Roger. We’re all packed out and Corinne and the girls left post yesterday for France. Like a good patriot, I depart July 4 (the big reception is the 3rd, alas). A few days in France and then we’re all off on home leave.