Pictures

Some days, only pictures will tell the story.

The last day of chemo, and the final prep for the transplant.

A warm soccer jacket from the other side of the planet, on a cold day of chills and platelet transfusions.




















The first day of a lifelong relationship between an uncle and his nephew.

More or less

Today's "mores":
- more IV pumps. How about eight? Four or five were running today, but Drew is prepared for anything.
- more visitors. Ben and Jordan and Melissa and Dan and friend Lee for Gen X/Y, Ginny and Jane and Boxley for the baby boomers, and Aunt Jackie and Grandma Llew for the "greatest generation ever".
- more cards. Dozens. Lotsa funny ones. One from Australia with pictures of Oz from the IBM team. Lots of cards from folks he knows and folks he doesn't.

Today's "lesses":
- less weight. After a peak around 215 pounds last year, Drew hit 167 today. Thin is not bad going into transplants, we are told, so less is best.
- less food. No one likes a food after getting sick shortly after eating it. Drew is running out of foods to dislike. He is putting up with an odd mix of pastas, shakes and energy drinks, but we will switch to the other way of feeding soon. Even less fun.
- less Westbrook. After showing up at 9 pounds, he has also lost some weight (a normal thing) as he gets ready to go home tomorrow. Mary and baby are fine...Wade has already changed more diapers than most of the fathers of the "greatest generation" ever did.

Monday is the last day of chemo.... T-1. We hope the cancer and old bone marrow are gone, and Tuesday's transplant will start a new immune system.

T-3, WAC+2

Today is T-3: That means Drew has two more bags of chemo to tolerate (one on Sunday, one Monday) and then it's transplant time. There is only one decision left to make: "push or in a drip?" Apparently, the whole event is pretty anti-climatic - 10-15 minutes and he is transplanted. Depending on the number of cord blood cells, they can be pushed into Drew through a syringe or added to saline as an IV drip. No complicated procedure - just push or drip. Don't worry - we will document the moment!

Drew continues to feel pretty good. He continues to walk the halls hoping one of the other patients will come out and play. No such luck! We know the crash is coming with the TBI and chemo already completed, and a few more doses to come - it is destroying the cancer cells and his bone marrow as well.

All the pictures today were taken back in Charlotte. Mary and Wade's baby is really gorgeous, and everyone is doing fine. We are working on plans to let Westbrook and his Uncle Drew meet very soon.

Bring on the FLUDARA!

TBI complete this morning - Fludara (the chemo of choice) began late morning as we close out today, also known as T minus 4. Actually, the chemo is uneventful compared to the previous protocols Drew has endured. The drug is administered IV for about an hour -and only once a day. So, we spend our days walking the halls, reading, attemping crossword puzzles, watching ESPN (can't wait for the World Cup games to begin) and making power shakes. Maintaining weight has been one of Drew's challenges - so the shakes are thick and made with bunches of REAL ice cream - yum.

News of Westbrook has brought smiles to the entire ABMT ward and there isn't a prouder uncle than Drew. Westbrook's picture is already on display in his room for all staff to drop-in and comment on how gorgeous he is - Drew and I politely smile and together respond - WE KNOW!!

Getting closer to transplant every minute.

The Schedule...for now

It's Monday morning at 6:30 a.m. The doctor came early, and we missed his soccer jokes and daily inspection to see who has the most hair - Drew is still winning, but not by much. He got a trim from Brian to stay stylish as long as possible before it all falls out. Jordan noted that it is easier to forget he is sick when he has hair. She is right.

We are on schedule to finish chemo today and escape from the hospital tomorrow. No blood transfusions so far - a pleasant surprise. Drew's schedule, if everything goes like a normal transplant:
- visit the hospital/office every day this week for blood tests plus heart and lung tests in prep for the transplant.
- visit Duke next week for prep, a tour, and probably an avalanche of paperwork and discussions around the process
- check in to Duke the next week (around May 1st) to begin a week of super-chemo, irradition, and then transplant
- be in Duke hospital through May and move to an apartment in early June
- be in the apartment for two months and returning home, hopefully in early August, for strength-building and getting back to normal

Our calls and meetings with the Duke transplant team will tell us more, and we expect constant change. Planning around a cancer adventure is like airline travel through Dallas in the late summer - hope to be on time, expect turbulence and a few thunderstorms, and bring a good book.

Long Day

Wow! Yesterday, we reached the "Fire Marshall's" maximum number of visitors but it was so fun and uplifting for all of us. I think with raising four children and all the excitment that continues to provide - TEAM LLEWELLYN is nourshed and powered by all our family and friends. Thank you!

Drew continues to receive chemo round the clock with a few other drugs thrown in for added flavor. He sleeps when he wants, which for some of his visitors was right in the middle of their visit - oops!

Today we decided would be a good one for total rest and quiet. The doctor's visit this morning reinforced that Plan C continues to be our option and we are blessed to not only have Plan C, but a few others tucked neatly tucked away if we need them.

Occasionally, the management portion of TEAM LLEWELLYN may decide a few hours of R and R is needed. So if that happens to be the time you stop by the hospital - we apologize. Keeping Drew strong for his trip to Duke is our mission.

The Easter Bunny will visit 4907 tomorrow.

Highs and Lows

posted by Mary on The Me Two

Thank you everyone for all the well wishes for Drew. The last week has been an extremely difficult one for Drew, my parents and the rest of Team Llewellyn. We are all so humbled by the amount of prayers, cards, emails, and calls that have been directed his way since last Sunday. Thank you, thank you, thank you!

The short version of a very long story is that Drew's cancer is much more serious than we originally thought. At first it presented as a small area on the wall of the bowel, but the latest scans show that it is actually taking hold of a great deal of his abdomen and pelvis. We learned this past Monday at Duke that his version of Burkitt's Lymphoma is also related to leukemia (this explains why it is so aggressive).

The long version: We started out the week upset the cancer had returned and each day we got worse news about his illness. Wade and I were in Charleston for a business trip but came home quickly after getting the prognosis that Drew was not just concerning the doctors but he was in very serious condition. The difficult decision was made on Friday to withdraw Ben from school in Australia so that he could be home with the family. So he filled out the paperwork to take an "intermission" (sounds so much better than dropping out, doesn't it?) and quickly left the country. By the way, Ben would make a horrible escape artist since it took his girlfriend, girlfriend's mother, and dad's best friend to get him packed, ticketed, and out of the country. But they did it in 30 hours (plus flying time).

We bunkered down in the hospital in very large numbers (so much so that we got moved to the suite, complete with a sitting room) and all stared at Drew for about 24 hours. Then Saturday afternoon, in true Drew form, he bolted awake. The massive steroid dose, more than consumed by the entire NFL, and other chemo was finally working. For the first time in days, he was chatty and starving. It took the entire group to explain to Drew that you can't eat a 20 oz steak when you have not held down water in 5 days. Just the idea that he wanted to eat was good news enough to let us all sleep a little easier Saturday night.

By Sunday he was looking good, eating a little bit, and his blood work looked better than it had in days-all good news. Hopeful, tired and groggy, we packed Drew in a car Sunday afternoon to head to the Duke Adult Bone Marrow Transplant Center in Durham. Duke is the best place for the type of transplant Drew needs, so we all tagged along to hear their opinion.

In the Duke brochure, they suggested to be prepared for a long day, pack a snack, and hope for the best while expecting the worse. We brought an overflowing basket of snacks provided by Drew's wonderful friend Brian and somehow fit six Llewellyn-sized people plus Drew's tiny girlfriend Jordan into the cramped exam room. (I am sure we were their largest crowd yet.) Each person who came to talk to us (nurse, social worker, PA, doc, etc) was visibly uncomfortable at first with having to perform in front of such a big group. The day was very informative, filled with plenty of positive and negative news.

Here is what we learned:
-Drew will do another round of Chemo/Steriods in Charlotte over the next month.

-Drew will go to Duke for 9 days of extreme Chemo, followed by a bone marrow transplant. We all gave blood on Monday and are waiting to hear back if any of the siblings are possible donors. Ben would be the best option, so keep your fingers crossed. If there is not a family match we then turn to the donor registry and hope there is match there. We may also bank Westbrook's stem cells from his cord blood in case they could be used.

-Mom and Drew will then live in Durham for about 100 days while Drew gets poked and prodded on a daily basis. The clinic provides an apartment near by for Mom that comes complete with all the necessities and biweekly maids. Mom is thrilled with the idea of maids but after her last relocation of Australia, Durham is not really that enticing.

-From the first day he is at Duke until the transplant is considered finished/successful is about 1 year.

-Mom & Dad finally get to say one of their kids is enrolled at Duke - they just won't specify that the enrollment is at the medical center, not the medical school.

-This is an extremely risky procedure - however, Drew is younger, stronger, and healthier than the average patient for Duke and therefore he should do extremely well!