Tell the Bees

Last Wednesday, April 16, an exhausted father Craig, and an almost sick daughter Chloe boarded a plane, beginning their 8 day adventure in the deep South making last minute visits to the two schools Chloe had targeted: Savannah College of Art & Design (GA) SCAD, and Ringling College of Art & Design (Sarasota, FL). Craig worried about leaving me alone with Moriah, and organized a league of friends to drive me to appointments, visit on a regular basis to make sure I was doing OK, and to help with some errands like grocery shopping. I did sleep 24/7 for at least the first week we were home after the transplant, so I can understand his concern about me. The title of this post is a little misleading because the response to his request for help was so good.

This past weekend we had overnight guests. Saturday night our friend Becky arrived prepared to cook us a wonderful dinner, and to stay overnight with her daughter Kisa, one of Moriah’s best friends. After our delicious meal all four girls settled in to watch a movie together. Sunday night Lina was joined by friend Hannah for dinner and another overnight stay (complete with movie.) Both of our daughters were spending the night with friends.

Other friends have grocery shopped for me. Others have driven me to doctor’s appointments. The last two appointments proved to be endurance tests… how long can you sit in a hospital waiting room? At both visits it was determined that I needed platelets. They had to be ordered from another hospital in town, and then they needed to be irradiated. About a 2 hour process. Both times my friends serving as chauffeurs opted to go home for a while and pick me up when it was over. Our friends are very generous with their time, and also smart. (What are platelets? irregularly shaped bodies that live in our blood. They provide the necessary proteins, along with other substances, to cause coagulation when bleeding occurs.)

Meanwhile Craig and Chloe are recuperating in the warm sun of Georgia and Florida. Their first destination after flying into Jacksonville, FL was Savannah, GA.-SCAD. They were able to see the school though the eyes of a SCAD student tour guide, but found that it was impossible to just wander around on your own without a student ID. So they went to the SCAD book store, walked around town and went to the beach. You drive 18 miles through marshlands to a long white sand beach, with a lively surf. At this early date in the season, the beach was basically theirs. After two days of this rough life, they drove 7 hours to Sarasota, FL. They walked around town, visited the Ringling Art Museum, as well as the Circus Museum, and scoped out the beach (of course). Today they toured the school. They spent some time at the beach, and lounged around the hotel pool. Tonight they’re going to a Sarasota Reds minor league baseball game. Did I say this was a college tour trip? Chloe has to decide between these two before May 1. But right now, her tan is more important. After all, she’ll have a full week to decide after she gets home.

I can’t wait for them to get back here.

Happy Birthday, Lina! Today is the first day of life with my new stem cells from my brother, and therefore new blood made by the merger of my stem cells with his, and therefore – from some perspectives- a new person. It’s kind of wild to think about…my DNA will now be xy, I’ll get his allergies, and who knows what else? I can’t wait to find out. We’re coming together, right now.

The transplant went smoothly yesterday afternoon – no vomiting, no cramps, no convulsions, no problems breathing. So far, I’d say my blood stream is happily accepting these new brothers and looking forward to the work they are going to do battling against cancerous cells. As a refresher, let me explain again the kind of transplant I just went through. It’s called a “mini allo” because it uses a lower dose of chemotherapy, followed by an infusion of disease-fighting stem cells from a donor (my brother) whose white cell antigens closely match mine (allogeneic transplant.) The low initial dose of chemo “stuns” cancerous cells into not growing, while the infusions of donated stem cells then battle against the cancerous cells.

Of course the chemo also wipes out good cells in my body, including my immune system. My blood counts and therewith my immune system will continue to drop for the coming two weeks or so. This means I will pretty much be hibernating in my clean (thanks to all who helped!) house, eating a restricted diet of food that must be cooked by us. While I can’t go out into the public arena, visitors are welcome at our house, or outside if it’s warm enough. You won’t even have to wear a mask or gloves. This will go on for around 90 days. Then we will see how I am doing.

Enough for today. I’m going home this afternoon. I just wanted all of you to know that I am doing really fine, and that I know it is because of all of your support and positive thoughts, images, prayers, hugs, good food, and just plain love. I figure the best way to thank you is to get well and live a long time. I’ll do my best.

xo~L

My view is exactly the same one I had two years ago, just two floors higher. Huge ventilation pipes no longer dominate; instead I see buildings, all variations on the theme of rectangle, and some sky – blue today. My room is a double room, but I am the only person in it – so I have lots of space. I feel like I should be using the space to exercise, but yesterday I felt drugged all day due to a large dose of antihistamine I got to help with the itching from the shingles. I just laid around, hardly even watching TV. Today I feel better, but not yet inspired to work out.

We arrived Thursday evening. Craig, Chloe and Moriah escorted me to Brigham and Women’s Hospital. Two wings on each of two floors at this hospital are dedicated to bone marrow and stem cell transplant patients. The air is filtered. All guests wear masks and latex gloves. All of my things were wiped down with antiseptic wipes when we arrived. No live plants are allowed, and no cut flowers. We’ve been getting a minor charge out of watching the reactions of hospital staff when they see my two calla lilies – artificial of course. The lilies invariably evoke admonitions against cut flowers, until they realize the flowers are fake!

Today is my final day of chemo treatments. I’m receiving two chemo drugs: Busulfan and Fludarabine, along with “IV fluids” – usually a saline solution with something like Potassium or Dextrose added. Then there are anti nausea drugs, and basic saline solutions to clear lines. As I write I am being hooked up to my second to last bag of chemo. Tonight at 12:30 I’ll get the last one, for a final 3-hour drip. Tomorrow I have the day off – to let the chemo move through and out of my body.

Wednesday is “Day Zero” – the day for the transplant, when I receive the 15 million stem cells donated by my brother Mark. They will be introduced into my body via an IV line, much like a blood transfusion. And then the next chapter begins: how will our stem cells get along? My vision is the two sets of stem cells linking arms and marching through my body singing “Solidarity forever!”

I’m still at home but on the mend. My shingles and the sinus infection have run their course and I’m scheduled to arrive at the hospital in Boston Thursday, April 3. The actual transplant, when I receive my brother’s stem cells, will be next Wednesday, April 9.

Ten days earlier, as our Easter dinners were settling in, some of Chloe’s friends were plotting their “senior prank” to be carried out around midnight that night. We awoke on Monday to the early morning news that the “prank” that Chloe and nine other seniors (all boys) had carried out in the middle of the night March 23/24 had resulted in the high school being closed on Monday the 24th. Before the shocked seniors had a chance to throw on some clothes and get to the school to fess up, the school administrators had called the police from three towns, as well as the media, and generally created an atmosphere of hysteria.

The “Cape Elizabeth 10” had taken down many of the suspended ceiling panels in the library of the school (thinking they would be putting them back up the next day), moved a few desks from classrooms into the hallway, and then a couple of independent movers wrote & drew stupid – but erasable – images on a couple of white boards, and spread peanut butter on door handles in several classrooms. To the administrators – superintendent & principal – it appeared to be vandalism and they acted on that impression before the students arrived. Once they all confessed, all ten were immediately given a ten day suspension from school. Unfortunately, the media loves it when something goes haywire with “those rich kids” from Cape Elizabeth…and the general population (even here in CE) is easily swayed by the media’s message.

Chloe was among the first four students to arrive. The police immediately asked her about their mid-night activities and for a list of the remaining students. Let us be clear that we do not condone the “prank,” but we are proud of Chloe for turning herself in, but refusing to rat out her friends – offering instead to call them herself and urge them to come forward.

Over the course of one and a half weeks, the hysteria seems to have calmed down, and support for the “CE 10” is growing. Rumors of possible expulsion and criminal charges, among other punishments, woke lots of people up to the extremity of the situation. Letters, emails and calls of support for “the punishment must match the crime” have been mounting. All ten students have been doing “community service” work – picking up trash along the CE roads. Individual student hearings before the School Board have begun.

Life with Chloe can never be all dark. The current bright side is that she has been admitted to both of her favorite art schools – Savannah College of Art and Design (Savannah, GA), and Ringling School of Art and Design (Sarasota, FL). To make it even sweeter, SCAD offered her an annual merit scholarship. We’ll have to see what Ringling can counter with.

On March 29 Moriah turned 13. Her friends captured her for the entire day and night on her birthday, so we stretched the celebration to Sunday when we lit candles, ate cake, and shared our birthday offerings with our new “teenager.”

It’s April Fool’s Day. No jokes from me. Just a sincere hope that the next time I write it will be from a hospital bed in Boston. (I wish it were a joke.)