Thursday, March 30, 2006


"Holy Mackerel!!"

...was Dr. Hay's reaction to the healing in my legs, where just 10-days ago, I was being wheeled (literally) into her office for care.

Rachelle and I are still re-orienting to the "New Normal," and still find it hard to believe where I've been and where I am in a matter of 3 weeks.

We've lived/are living in that flux between wholly trusting in God and living responsibly. My healing is nothing short of miraculous and God's divine intervention thru good medicine. Praise the Lord.

My next step is to return to Yale in a few weeks to discuss the macro issues of my disease and determine the next treatment regimen. We are grateful for and continually covet your prayers. Thanks.

Update: The reaction from my dermatologist, Dr. DeBuys: "WOW!!"

Monday, March 27, 2006


The new normal

We are getting back to the new normal at our house this week. Meal and laundry angels continue to be a wonderful gift to us from our church. Scott is on the road to recovery. He is feeling much better and decided to work a 1/2 day today. He is still "narc-ed up" on morphine so I am his taxi since driving in his condition is generally frowned upon. He is fighting a secondary infection (serratia marcescens) resulting from the drug eruption but the skin on his legs look dramatically better as the healing process has really begun. Thank you to all of you who have prayed for his healing- we are seeing results. Just being home with Anna Scott and Will this weekend was rejuvenating for me but I am extremely fatigued. I don't know if it was some kind of catharsis or if a stomach virus zapped me the day we traveled home from Yale, but I haven't bounced back yet. Scott is doing great overall and continues to improved with each passing day. He has been remarkable through all the suffering he has endured. His spirits, sense of humor, and ability to hope carried all of us, especially me. I think is it finally safe to say we have "turned the corner", "daylighted", "taken the hill" and all other similar metaphors. It feels good to be back home.
-posted by Rachelle

Saturday, March 25, 2006


Just Because

Wednesday, March 22, 2006


Good Appointment with the Docs

Our day at Yale Medical started at 9:30 and finished around 2:30. We met with Dr. Foss (my CTCL specialist) and a dermatologist who specializes in CTCL & its related skin complications. In short, we came up with a good plan to continue to fight the skin infections caused by the drug eruption. We got good answers to immediate questions and are glad we came. We're all experiencing some relief having done so much prep to get here. I will need to return in a month or so, once my current drug reaction has subsided. At that time we will be able to evaluate the status of the CTCL disease itself. All-in-all, we're doing well and will "enjoy" a quietier evening in New Haven and then travel home on Thursday.

Thanks again for your continued prayers.

Tuesday, March 21, 2006


Plane, Cab, Train, Cab, Hotel

Rachelle, Macon (my good pal from Texas) and I all arrived safely in New Haven this evening. Thanks to my mom's good friend, Dottie, we all flew on buddy passess on Delta. Rachelle and I wisked thru Charlotte's security with no issues; everyone was nice and accomdating, even with the wheelchair we rented and brought with us. We met Macon at the airport and my dad had arranged for a car service to ferry us to Grand Central for our train to New Haven. Fortunately, the train was on the main level and we zipped right to it.

Comic relief: When we landed at Laguardia a little old lady tried to commander our wheelchair at planeside, thinking it waiting for her. Rachelle had to (kindly) inform her of her mistake and booted her into the passing luggage carrier.

I was able to stay ahead of my pain curve and have been (fairly) comfortable all day.
Tomorrow's schedule starts around 10 with more blood work, then my meeting with Dr. Foss. Please continue to pray for us, specifically for wisdom and clarity as we interact with her tomorrow.


Monday, March 20, 2006


Yale Bound

Rachelle and I had a hectic day with final logistics in preparation for our trip to Yale. God heeded the many prayers of His people and allowed us to accomplish a lot today. We feel ready and prepared to go. The docs all gave me "clearance" to go (that the risk of secondary infections are sufficiently mitigated), and my Wound Doc (did you know there was such a doc?) took a different approach to dressing my wounds for both healing and immediate comfort. My pain meds rock. I hardly feel any eaffffex.

We continue to covet your prayers, specifically:
-Flight logisitics: we're flying standby on a buddy pass and our friend Macon is joining us from Texas.
-Other travel logistics with the luggage and me being in a wheelchair.
-Wisdom for Dr. Foss at Yale on what has happened, what we're going to do about it in the near-term and the implications to my long-term care.
-My work: my office has been most supportive, but I've missed many days the past few weeks and don't need to nor want to stress over the work that I'm unable to delegate. Pray that I can reasonably return to the office and efficiently and quickly catch up.

Sunday, March 19, 2006


Latest on Scott

Please continue to pray for Scott. We are managing his pain as best we can with the strongest drugs available to us but he still has break-through pain. This weekend a number of family members have been to visit Scott. It has been shocking for them to see the degree of severity of his wounds. Scott's dad and my dad separately commented that it looks like the scene from movie The Passion of Christ after Jesus was flogged. I can't speak to that because I didn't see The Passion, but it is certainly the worst thing I have ever seen with my own eyes.

We are beginning to pack for our trip to Yale. The logistics are tremendous...It will be very challenging for Scott to travel in his condition. I am so grateful that I am going and I thank Dottie for her generosity in providing my ticket to go. We are trying to secure a wheelchair for the trip that we can pick up once we are in NYC.

Pray most of all that the Lord protects Scott and I from ALL illness while traveling. The trip from here to New Haven requires many transportation legs (airplane, cab, train) and it will be very cold in the Northeast this week. It is critical that he not have any secondary infections because his immune system is extremely compromised at this time.

I am holding up okay under the circumstances.

Love to you all- Rachelle

Friday, March 17, 2006


En Fuego MUCHO

The last 11 days have been a blur. Scott and I have experienced the pain and complexity of treating his lymphoma and it's horrible side effects. Scott had a drug eruption beginning on March 6. In the last 11 days Scott developed a very serious skin reaction. The doctors are not clear if it is due to the topical cancer-treatment he was applying to his skin, other medication he was taking or a combination of the two. He now has open wounds on his legs which are incredibly painful when touched in any way or if he tries to move around. I realized we had bottomed out when I was pushing Scott in a wheelchair to his appointment with a wound care specialist today. The good news is we hit bottom today and there is nowhere to go but up from here. He is under the care of his oncologist, dermatologist and a wound care doctor. Together they are covering all the dimensions of this latest reaction. We are all under the care of our church family, Westminster. Their practical love has been expressed through meal angels, laundry angels, bathtime angels, airfare-buddy-pass angel and our oncology nurse at Westminster :) Please pray for his healing. I have decided to travel to Yale with Scott on Tuesday because he is no condition to travel. I will be leaving Anna Scott and little (9 week old) Will with Scott's parents while I am gone. Please pray for all of these things and most especially for healing.
-posted by Rachelle

Wednesday, March 15, 2006


Will pictures

Will was baptized this past Sunday. Here are two montages from the same day. The first is from the baptism and luncheon, the second is some cute expressions Rachelle caught later that same day.

Monday, March 06, 2006


En Fuego

The past week has been a bit physically challenging. Historically, extreme cold weather (that is, temps in the 20's, low 30's) has caused my rash (the manifestation of the lymphoma) to itch and burn. Last week was one of those cold spells, and my legs took the brunt.

In the last 6 months, the rash has spread to my calves, having previously been mostly on my thighs and arms. For some reason, my calves have been on fire since the cold spell last week and a few spots have degenerated to open sores. My legs feel like they have a bad sunburn. Anything that touches them, rubs them, breaths on them, looks as them cross-eyed, hurts. Ouch.

For the regular readers, you're aware that I'm between treatments (new regimen starts this week), which may also be a reason why the rash is acting out. I've been coping with the burning with my regular application of topical Targretin, triamcinolone (0.1% steroid cream), Cetaphil (over-the-counter, non-comedogenic moisturizing cream) and Sarna (a topical analgesic).

Whatever the reason, it hurts and is uncomfortable. Long pants and socks are particularly aggravating (Believe me, if I could go without...). Rachelle and I are considering my clothing materials (i.e. wool = bad, cotton/poly = good) and anything else that will help me cope. I've also been in contact with my dermatologist to inquire of other possible remedies. I'll update this post if so.

So, I write this post not to complain, but to ask once again for your specific prayers. Rachelle has been particularly supportive, but feels helpless in caring for me. Anna Scott, wanting to be just like daddy, has taken to covering herself head to foot with her Strawberry Shortcake, sparkly lotion, while I apply my layers of goop. So cute and no, my lotions do not have sparkles. Thanks.

Wednesday, March 01, 2006


Greatest Show on Earth

Last Saturday, I took Anna Scott to the circus. We got their early enough to participate in the "pre-show," which involved center ring-side seats as the clowns acted like..well, clowns. The highlight of the "pre-show" was the 9,000 pound elephant that was brought to the center ring. They did a few tricks then the elephant paraded around the inside of the ring as we sat on our knees just on the outside of the ring. Wow!! We even got to touch his trunk as he came by. ASM was really excited and didn't stop talking about it the whole time, though she continually refers to the elephant as the, "stinky elephant." We had a great time overall and it was a good Daddy/Daughter memory. Here are a few pics (taken from my cellphone, so they're not the best resolution).

This page is powered by Blogger. Isn't yours?

Weblog Commenting and Trackback by

Site Meter