Margaret Alaina Williams
March 14, 2002 – October 27, 2005
Margaret Alaina Williams, 3, died Thursday in her
Beaverton home surrounded by her loving family after a
brave battle with a rare form of leukemia.
Pastor Rick Ellingson will officiate at a
traditional memorial service for adults only at 11:00 am
on Tuesday, November 1st at Skyline Memorial Gardens.
Maggie was born March 14th, 2002, at Providence St.
Vincent Medical Center in Portland. She was the oldest
child of Rick and Elizabeth Williams of Beaverton.
Although she was named Margaret after her great
grandmother, it was the nickname of “Maggie May” that
stuck. Maggie was a third generation Rod Stewart fan, and
last month realized a dream when her favorite rock star
invited her and her family to a tea party in his Beverly
The precocious 3-year-old girl was bright, funny and
at times determined to get her way. She was a natural
charmer who loved to sing, dance and play. She attended
preschool at Creative Children’s Center, where she enjoyed
painting, drawing, playing dress up and entertaining her
young peers at circle time. Maggie also liked to read
books, have tea parties, dress up like a princess, eat
finger foods that she could dip in an array of sauces and
dance along with singers in the "American Idol" and
"Rockstar: INXS" competitions.
Her all-time favorite activity was playing with her
baby sister Angelina, who she taught to dance. Maggie was
a proud big sister and a cherished daughter, cousin, niece
Her smile could light up any room and brighten the
life of anyone she encountered. She had a strong will and
carried herself with a dignity and grace rare for one so
young. Maggie wanted to one day become a doctor, nurse,
rock star and princess. Instead, she became a hero with a
heart of gold.
Survivors in addition to her parents and baby sister
include grandmother Sharon Trett; grandparents Robert
Trett and Sara Nelson; grandparents Al and Elaine
Williams; great-grandmothers Margaret Borchardt and Lois
Trett; and many loving aunts, uncles, cousins and
A special thank you to Dr. Oleson, Dr. Norwood, the
nursing staff at Legacy Emanuel, the transplant team at
Doernbecher and the hospice staff who opened their hearts
and gave so much to Maggie and her family.
Memorial contributions may be made to the Children’s
Cancer Association, www.joyrx.org.
Thursday, October 27, 2005
Our precious Maggie May joined God in heaven this evening. She was surrounded by family, just like the day she was born, and she went very peacefully. A traditional memorial service for adults only is being planned, as well as a special children's service.
Monday, October 24, 2005
It was a weekend surrounded by family for Miss Maggie. She had visits from grandmas, grandpas, aunts, uncles and cousins. It was a very loving, and busy, time. Her pain medication is keeping her comfortable most of the time, but her body is having a hard time keeping up with her disease and she's been sleeping a lot. She had a very busy day at clinic today where she received platelets and a few other things. Maggie's parents, with the help of her oncology and hospice team, have stopped all medications with the exception of her pain pump. This has brought a little more comfort for Maggie who was ready to be done with all those icky medicines. This is a very hectic time for Maggie and her family so we anticipate fewer journal entries.
Saturday, October 22, 2005
The last couple days have been pretty hard on Maggie and her family. Her disease is progressing, and she's been very uncomfortable. So doctors have started a pain pump that is keeping Maggie comfortable, but also sleepy. Her GVHD rash came back when they stopped the anti-rejection medicine, which showed once again that our little angel is one in a million.
Thursday, October 20, 2005
Maggie spent Monday at clinic receiving red blood cells and platelets. Both should help boost her energy level and reduce the number/severity of her bruises. She's been hanging out at home the last few days. Her energy level continues to slow down as well as her appetite. She's been sleeping more, except late at night when she should be sleeping. Mom and dad are doing their best to manage her pain; she's been complaining of headaches lately. The doctors were able to bring her daily medicine count down to 12, but she's still struggling with those. Beth's letting some of the antibiotics slide, but some medications must continue, so they're doing their best to get them in.
Beth was hoping for a shopping trip to Toys R Us this week, but Maggie prefers hanging out at home right now. So, she's playing with Angelina, Grandma, aunts, uncles and cousins. She's been enjoying the Food Network and doing puzzles. And today she had a special visitor, Janie, a former physical therapist who she enjoyed playing with while at Emanuel. Beth tells me that between the pain and the attitude, there's still lots of laughter.
Monday, October 17, 2005
This last week Maggie slowed down a bit. She's still playing a lot at home, but she was preferring staying home to play, with the exception of the grocery store of course. So, there were trips to Albertson's and Costco, and lots of time with Angie and family.
Saturday night was movie night at Aunt Becky's house with some of her cousins. There were Halloween videos, popcorn, candy, cookies, cotton candy and junk food galore! Maggie was thrilled to eat pizza on the couch while watching TV with everyone.
She's been struggling with taking her daily meds, which are currently anyway between five and nine syringes orally three times a day. Mom and Dad are working with the oncology team to start reducing some meds and switching to oral tablets to try to reduce the stress around medicine time. Some days, it can take 90 minutes to get her medicine down, which is very difficult and draining for everyone involved. Maggie's off to clinic this morning, so there should be another report soon. And be sure to check out the latest pictures in the gallery.
Tuesday, October 11, 2005
Did You Say Breakfast?
For anyone who is doubting just how much food one little girl on steriods can eat, here's Maggie's menu from breakfast this morning. Grandma Sharon reports she ate all of this by 9:15 this morning: milk; coffee (1 teaspoon with 1/2 cup whipped cream); banana oatmeal; chicken nuggets; cheeseburger; fries with barbeque sauce and sweet & sour sauce; pancakes (with boysenberry syrup, maple syrup & whipped cream); sausage; banana; chocolate donut and a powdered sugar donut all followed up with a pepperoni pizza lunchable! Of course some things were only a bite but others were all eaten. Mom, Dad and Grandma are now officially short-order cooks, and will each have a new career to fall back on should they need to.... Other than that, Maggie chose to have a day at home resting and playing today after a great shopping date to Target with Mommy last night.
Tuesday, October 11, 2005
Maggie's visit to the clinic went as expected. She stayed for a bag of plateletes and her current counts. Her leukemia blasts are up to 93%, but you would never guess that by the smiles on her face. Doctors are going to reduce some of her medications, including the steroids and antacid type medicines (since she doesn't seem to have any problems digesting food anymore). They're hoping the reduction in steriods will also help curb her appetite (which might also give Mommy, Daddy and Grandma a break from the kitchen). A trip to OMSI is in the works for later this week, as well as some more family fun.
Monday, October 10, 2005
Miss Maggie's adventures continue! Maggie's family continues to fill her days with fun activities and time with family. Late last week, Maggie and family went for a special portrait session at a very nice studio. They get to take a peek at the proofs later this week. Friday was a play date with cousin Katy, and they made a birthday pizza for Dad. There have been trips to the grocery store and Costco A big Williams family dinner at Uncle Rod's house. And even a Sunday brunch at Newport Bay. Maggie's energy, attitude and appetite continue to be strong! Her medications make her a bit bossy, cranky and demanding, which can be tiring for her parents, but they put on their best face and keep moving forward. This morning Maggie's off to clinic for the latest round of blood tests and platelets.
Wednesday, October 5, 2005
More Fun & Games
Today Maggie was off on another adventure. Nana and Papa Williams, Aunt Tammy and cousin Felicia met her at the Children's Museum for an afternoon of play. Big surprise - she really loved the play grocery store and restaurant! Beth said she filled the shopping cart over and over again, making sure to use the cash register and scan everything. I asked Beth if they remembered to take pictures, she said yes 2 or 3 - rolls! There was also playing in the Water Works, sculpting with clay and some music. Angelina loved playing, and she really liked the music area.
Food continues to fill Maggie's days. Tonight she spent an hour and a half preparing the perfect chef's salad to go with dinner! (Dinner was a little later than usual).
Tuesday, October 4, 2005
More of the Same
Sorry for the slowing journal entries. The good news is that there isn't much new to report. Last week Angelina had a touch of the stomach flu, so the family was pretty home bound. Being together, being home and having some down time was good. Maggie was at clinic yesterday, where her numbers were pretty much as the week before. She still has 89% leukemia blasts in her blood cells. Morphine has been added to her menu, and it is helping a lot with her pain. Doctors believe the cancer has probably spread into her spine, which would explain her bone pain. Other than that, she continues to eat, play and spend lots of time with family. There have been many visits with grandparents, cousins, aunts and uncles. Today was another visit to preschool, which was very fun!
I was recently telling a friend how normal Maggie's life seems to be while this horrible disease is growing inside her body, but then I realized how normal was too kind of a word. My children have been three, and their lives weren't much like Maggie's. Sure, there's the occasional spat over a toy with her sister and testing her independence with her parents, but there's also waking up at 5:00 am demanding artichokes, steak and cottage cheese. Maggie's home has become a 24 hour cafe with every imaginable food and combination of foods that Maggie can think of. At first it's humorous and you're glad she's eating, but when she's insisting on chinese noodles from Happy Panda, and it's only 8:00 in the morning, you know it's going to be a long day. You can't open the fridge or cabinet, because it only offers her more options. She might only want macaroni and cheese, but if she sees something else, she'll want that too. You even have to be careful what you say because just hearing someone say a food, can make her want it that very instant! Today at lunch, while she was eating three different foods with three different utensils, she was also drinking four things: ice cold water, lemonade, milk, ice cold root beer and then she requested hot chocolate. She's hungry 24/7 and very persistent in her demands. The doctors tell us it's the steroids and transplant causing her behavior, and I can tell you that it's not your typical three-year-old tantrums either. Beth, Rick, and even Grandma Sharon, are doing their best to keep her happy, and they have become the most patient people I have ever met.
There are other parts of Maggie's life that are not so normal. It's not her little bald head, bloated steroid body or even her "buddy" plugs that dangle out of her chest, it's her vocabulary, her understanding. Not very often do you hear a three year old request prescriptions by name. "Mom, I need phenegram for my tummy." "Daddy, can I have some morphine now? How long do I have to wait?" "Mommy, it's time for my benadryl. I'm sleepy." These are the words I hear that remind me that Maggie's life isn't normal. But then, on days like today, I see her holding hands with her cousin, playing with friends at school, choosing fruit snacks with her favorite characters, and I appreciate the beautiful little woman she has become.
p.s. There are new photos in the gallery!
Tuesday, September 27, 2005
Life with leukemia is one big roller coaster ride. I'm starting to think it's like Space Mountain at Disneyland - it's fast and you can't see where you're going. Yesterday brought an unscheduled visit to the clinic for platelets. Maggie count was nearly zero, and it was time for some pumpin' up! Over the weekend she was developing some bruises again which was a sign for Beth to give the doctors a call. This week's blood tests showed that the leukemia is on another upswing. Maggie's white blood cells have tripled again and 88% are leukemia blasts. The oncology team is analyzing the medication that had been slowing down Maggie's white blood cell production. It worked well for about two weeks, but now the cancer has figured out how to work around it. So now, the oncologists do some research and see if they can get the upper hand back.
Today was a trip to Costco for some more shopping. Maggie is a true girl - give her a mall! I hear it was also a day of temper tantrums, whining and being three. It's hard to tell if Maggie's mood swings are caused by her age, her medication or just her body's reaction to what's going on. Like most preschool parents I know, Beth and Rick could use some Tylenol to get through the day.
This morning the family also had their consultation and first visit with the hospice care nurse and social worker who will be supervising Maggie's care. It sounds like the meeting went well. Beth said she enjoyed the sense of humor that the two men had and their repoire with one another.
Tomorrow it's back to the zoo for some more fun with the animals! We'll try to post some pictures afterward.
Sunday, September 25, 2005
More Weekend Fun
It was another weekend of family visits and playtime at home. One of Maggie's favorite things is shopping with Mommy, so there was a girls' trip to Target for some red cart riding. Maggie also got to play at cousin Katy's again. There was coloring, games and puzzles, which Maggie discovered she loves. Saturday cousin Kristina came to help with Maggie and Angelina while Mom got a little break. Sunday was more food with brunch with Ali and Lucas.
Maggie's routine is pretty normal right now (or as normal as it gets when you're living with leukemia). There's lots of playing and doing the normal things a three-year-old does. She eats, she plays, she fights with her sister. On occasion, she even talks back! The day is interupted with short breaks for medications both orally and through her buddy IV. She has started to complain about some pain in her bones, which doctor's said would come, but they are still able to manage her pain with medications. This week is currently scheduled for more relaxing and playing at home, with a trip to clinic on Wednesday.
Friday, September 23, 2005
Wednesday brought a trip to clinic and some good news. Maggie is taking a drug that helps slow the production of white blood cells. The drug is working, and her white cell count is down. Her leukemia continues to spread however, with blasts in about 75% of her cells. Doctors are cautiously optimistic that this can provide Maggie with more days at home than originally thought, which was good news. They warn us however that there is no magic formula, they can't look into a crystal ball and tell us the magic amount of time that is left. So, we continue to pray for good days and fill the days we have with as much laughter and joy as possible. They're monitoring her medications very closely and are reducing her steriods a bit since they're causing high blood pressure. It will be a balancing act to keep her rash at bay, her appetite healthy and her blood pressure in check.
Wednesday afternoon was a trip to Astoria for an overnight stay. Beth called on Thursday morning to share part of their experience. They were near a pier full of sealions who could be heard from quite some distance, so the kids had enjoyed hearing the sealions bark most of the day (and night). Then it was off to Long Beach for more beach fun, including driving in the sand!
Maggie's energy and strength continue to be good. She's acting like a three-year-old fighting with her sister, having attitude with her parents, the usual preschool behavior - which is really fun to watch!
Tuesday, September 20, 2005
More Full Days
Maggie's energy and strength continue to hold strong, while Beth and Rick do their best to keep her days full of fun activities and family time. Yesterday there was a trip to the zoo, where Maggie finally got to meet Tusko, the new male elephant. Sounds like she even got to see him doing some of his "business." Again, it's the steriods that seem to be giving her energy and an appetite. She was up at 5:00 this morning wanting leftover chinese food warmed up.
Today was a trip to visit Teacher Sami and her friends at preschool. She's been wondering why her cousins are back to school while she's still at home, so Teacher Sami invited her to come and play. She was able to play with a few old friends from last year's class, and she made some new friends too. There was dramatic play in the kitchen, songs during circle, snack and a bit of outside time. She even visited Teacher Lucy's Kindergarten (with cousin Lucas) where she got to have some more snack! She asked Teacher Sami when she could come back, and, of course, the answer was "whenever you want." So they made her a cubby and left her nametag there :)
Tomorrow morning it's a stop at the pharmacy to fill up on supplies, then a stop at clinic before hopefully heading to the beach for an overnight stay. After her check-up, Dr. Olson will determine if she can travel away from home again.
Thank you to everyone for your patience with the website. I know some of you would love to wake up every morning to a new journal entry and more photos. I'm doing my best to keep up with it, but some days I can't muster the strength. For Beth and Rick, it's a constant juggling act right now. They would love to spend 24/7 catering to Maggie's every little whim, but they're also trying to keep a sense of normalcy in managing their household, getting some sleep, etc. Thank you for your continued prayers and support.
Monday, September 19, 2005
A Happy Weekend
It was a busy, happy weekend for Miss Maggie. Her energy continues to be high, and these last few days have been the best days she has had in months. It's pretty remarkable. Her parents are thrilled and perplexed because no one saw this level of energy coming. The steriod medication is helping Maggie's stomach and digestive system. And, can she eat! When I was with her last evening, she had two plates: a turkey/ham/mustard sandwich, wheat thins, string cheese, carrots & ranch, ham, mashed potatoes, fruit salad, milk and sparkling apple juice. She'll eat for five minutes, go play for five minutes, then come back and eat some more. You can't put away her food or wash her dishes because she'll come back (as Uncle Tim learned last night). After dinner, she had dessert too, and then she asked that I pack her a sandwich for the road! Granted, she's not eating all of it, but she's definitely sampling everything.
It was a another weekend full of family visits. Lots of aunts, uncles, cousins and grandparents came to visit. And Maggie loved every minute of it. On Friday night, the family went to Aunt Becky's for dinner, and on Sunday night it was Aunt Kimmy's. I must say, these were the most normal feeling days our family has experienced in six months. A dinner with all four of the Williamses together is pretty amazing. Add to that everyone eating, smiling, laughing and no throwing up! These are pretty darn good days. A special guest was also in town, Beth's best friend Angie flew in from Reno. Angie and Beth have been friends since grade school, and we all enjoyed catching up with her. Maggie and Angelina loved showing off their abilities and entertaining Angie.
This week includes another trip to the zoo, maybe a visit with some school friends and clinic on Wednesday. And, yes, there will be more Rod photos.
Friday, September 16, 2005
Here's A Little Something To Hold You Over Until We Have More Digital Images Ready...
Thursday, September 15, 2005
Maggie spent yesterday afternoon at clinic catching up with her oncology team. Her counts were what doctors expected, so there was no real new news. Maggie's energy continues to be high, and the steroids are really helping with her appetite. She's been eating almost non-stop, and keeping most everything down! It's hard to catch up when you haven't eaten much for six months. She was a good patient today taking her oral medications in the morning and afternoon without any fuss. Sometimes she can throw a big enough fit to cause herself to throw up.
Maggie's family has been hanging out at home, letting Maggie play and spend time with family. There has been much discussion about what fun activities to do next, and I suspect some plans will be made for the weekend. Because Maggie is progressing as expected, she only has to visit clinic once per week for now, so Beth and Rick are enjoying more time at home. There are some new princess photos in the Gallery, but it will be another day before we have digital Rod Stewart photos to share.
Wednesday, September 14, 2005
The Royal Princess And Her Family Have Returned
After the most incredible family vacation to Disneyland, the royal family returned late last evening. And although we got to their house after 11:00 pm, everyone was wide awake, still on the "high" from meeting Mr. Rod Stewart. Yes, it happened! Yes, it was incredible! Yes, there are photos and video! A limousine picked the family up yesterday morning from their hotel and drove them into the hills of Beverly Hills into an exclusive, gated community with the likes of Denzel Washington and Sylvester Stallone. Beth says it was the most amazing home and property she's ever seen. Rick said the art was so beautiful it was like being in a museum. They were escorted to the outdoor living room, which was poolside, where they were met by Rod's fiance, Penny. A tea party table had been set up with small triangle sandwiches: peanut butter & jelly, turkey & cucumber, turkey & tomato; fruit and cupcakes. Here's the amazing part - Maggie, who just started developing an appetite on this trip (thanks to some steroids), was so impressed with the turkey sandwiches that she ate for almost the entire hour they were there!
I got to see some of the video footage last night, and it was so cool. Rod and Penny made the meeting so casual, so welcoming. He played on the couch a lot with Maggie and Angelina. He would hide Angelina's pacifier, talk and joke with the girls. He has lots of little dogs, I believe he said one for each child. So, three little dogs were up on the couch playing with Rod and the girls. Maggie told him that her favorite song was "Maggie May." He asked her if she wanted to sing with him, but she asked for more cantaloupe instead. He did sing the first line to her, and I'm sure both Beth and Grandma Sharon were weak in the knees. Come to think of it, I don't recall Grandma Sharon saying much of anything on the video. I think her heart may have stopped while there! At one point, Maggie requested a glass of milk, and Rod jumped out of his seat to head indoors for it. Can you believe it? Rod Stewart fetching a glass of milk for our Maggie May?
There were special gifts for Maggie and her family. Maggie received a small teddy bear, balloon bouquet and large pink mug reading "I love you." Then they brought out a gift that he said was more for mom - a large, framed, platinum record type display with his first two Songbook albums. This was his recognition for selling 8 million copies of these cd's internationally. Beth was completely overwhelmed by his kindness. He asked if she was familiar with these newer cds... well, duh! Actually, Beth responded quite graciously letting him know that they played these cds every evening for the girls who both loved them so much.
There was time for a little walk around the beautiful pool area before they left. Maggie was pretty impressed not only with the pool, but all of the poolside furniture and statue-type decor. Before they left, there were hugs and kisses for everyone! I know that it is a moment none of them will forget, especially Beth and Grandma Sharon. In fact, I'm sure that they're both still in complete shock this morning of meeting the man who inspired their Maggie May. And I imagine that his music will play even more in their house and cars (if that's possible). Rod did mention that he was working on his 4th Songbook collection and one of the reasons for their short meeting was that Elton John was waiting at the studio for him! Sounds like Maggie's in pretty good company!
I know you're all dying to see photos, and I should be able to get some from Beth later today to post. There's more to tell you all about their last couple days in Disneyland as well, but I'll save that for another entry. Today will be a busy day for Maggie and family, as they head back to clinic and try to recover from their week away from home.
Monday, September 12, 2005
When You Wish Upon A Star... Makes No Difference Who You Are...
When That Star Is Rod Stewart... Your Dreams Come True!
Beth just called to tell me the latest on the Rod Stewart front. Now, make sure you're sitting down in your chair for this one, Mr. Stewart was so moved by Maggie's story, he has invited Maggie and her family to meet his family tomorrow afternoon at his home in Beverly Hills! Today I am so excited to use the word - unimaginable! Maggie's pretty excited about meeting the man behind Maggie May and her favorite slow songs (his newer Songbook songs). What a ray of sunshine for Maggie, Beth and Grandma Sharon. I'm so thrilled that they will have this special event together. If it wasn't for Grandma Sharon's love of Rod Stewart, her need to play his music in our house while we were growing up, Beth wouldn't love him like she does, and Maggie wouldn't be our Maggie May. A parent has a very unique way of helping shape children. Sharon passed her love of Rod to Beth who has passed the torch to Maggie, and none of us can imagine Maggie anyother way than as Princess Maggie May who shakes her booty to Rod Stewart! And now, at 14 months, even Angelina is a big Rod Stewart fan, shaking her booty too to all his music (which plays almost all day long at the Williams' household).
Sunday, September 11, 2005
When You Wish Upon A Star...
I'll get you updated on Disneyland in a minute, but first things first... Rod Stewart would like to meet our little Maggie May! Yes, it's true! The details are being ironed out for Maggie to meet Mr. Stewart himself on Tuesday in Los Angeles. Thank you to our friend Lisa and the Make-A-Wish foundation for pursuing this dream for Maggie. We've been working on this dream for quite a while now, and it's finally going to happen. Thank you to Dr. Norwood who has also signed off on letting Maggie stay in LA for another two days! Luckily Beth and Rick were prepared with enough medications to get them through an extended stay. (And they even get more time in Disneyland)! Beth promises they will video-record the entire thing. But I must confess that Aunt Kimmy and Aunt Becky wish they were still in California too.
Now, back to Disney business. Maggie continues to win the hearts of every person she meets. Angelina is having a bit of what doctors are calling "disorientation," but I'm thinking sensory overload. So while Maggie has been quite the trooper, it's little Angelina who has been keeping mom, dad and grandma up at night! After a very long night with Angelina, it was a late morning start for Maggie and crew yesterday. Grandpa Bob had left on Friday, and the rest of the entourage returned to Portland Saturday afternoon. Maggie ventured on Pirates of the Caribean again, and Rick and Beth had a chance to ride Indiana Jones while Grandma sat with the girls. A big highlight of the day was seeing the "Aladdin" theater production. After the show, Maggie was invited to a private meet and greet wtih all the main characters. Beth said Jasmine was especially taken with Maggie, and it was another great visit. Back at the hotel, it was time for a nap and dinner courtesy of room service (a first!). At 9:00, the family was off for a shopping spree at the World of Disney in Downtown Disney, and then back outside in time for the fireworks!
Today, they slept in again (another long night with Angelina) and then it was off again to California Adventure. After riding "Heimlich's Chew Chew Train" in Bug's Land, it was several rounds on King Triton's Carousel. Seems Maggie has a thing for carousels. Then they played games on the boardwalk, and Maggie came home with an amazing five stuffed animals! Wow!
Tomorrow will be another day of Disney excitement before the big date with Rod Stewart! Be sure to check out the gallery page for some Disney photos. (More will follow).
Friday, September 9, 2005
Another report on Disneyland from Aunt Kimmy. The only bad thing about the happiest place on earth is that there aren't more than 24 hours in a day to enjoy all of it. This morning while Maggie was still resting at her hotel, her cousins ran into Mad Hatter, Alice and Tweedle Dee at the TeaCups. They recognized all of us and were asking us for Maggie. They interacted with our kids for quite a while, which was so fun for them. Mad Hatter requested that Nick make another speech, and when the Queen of Hearts wasn't cooperating with autograph books, he made her do it!
Then it was off to Playhouse Disney so Maggie, Angie and all the kids could see Bear in the Big Blue House, Jo Jo's Circus, Pooh & Friends and Stanley. Again, our entire group was treated like royalty. We were given early access into the theater, where we sat front and center. Then, they allowed us to stay after the show for a private meet and greet with Bear! Maggie gave him lots of hugs, and he was great!
After lunch, we hit King Triton's Carousel, where Maggie rode for five or six times! She absolutely loved it, and didn't want to get off. After a nap back at the hotel, she was ready for some people watching. She said she wasn't interested in rides, but she wanted to watch everything happening from her wheel chair. Of course, like any special princess, she also got in some shopping!
Many of the extended family head home tomorrow, but not before some final fun with Maggie! Maggie also has a special date at the Aladdin theater where she will have a private meet and greet after one of the performances. It should be pretty spectacular.
Our entourage is travelling with two camcorders, three digital cameras and a couple 35mm cameras. I am certain that over a thousand photos must have been taken by now. We'll start sorting through them as soon as we get home, and we'll get some posted.
Thursday, September 8, 2005
Another report from Aunt Kimmy in Disneyland! There is a reason why they call this place the happiest place on earth. I've believed in Disney's magic my entire life. Our morning got off to the most wonderful start. We were greeted with a personal escort, who wisked away Maggie, Angelina, Beth, Rick, Grandma Sharon and Grandpa Bob to City Hall. After they settled in, the first surprise arrived - Prince Charming and Cinderella! Then it was Snow White, Belle and Maggie's favorite, Sleeping Beauty. Sleeping Beauty brought Maggie her own doll, and they spent about 30 minutes with Maggie, taking pictures, talking and sharing. They all knew Maggie and family by name, and I hear that Prince Charming said Papa Potato was pretty charming too. While this was happening, another Disney escort, took the rest of us down for a ride on the new Astro Blasters with Buzz Lightyear. It was all very Secret Service like, being escorted with castmembers with walkie-talkies who were coordinating everything. We were then all escorted to our second surprise - a special meeting for all of us with Mickey, Goofy, Pluto, Alice, Mad Hatter, Tweedle Dee & Tweedle Dum, Peter Pan and Wendy. What a party! Again, we had a lengthy, private visit. There were hugs, kisses, stories, jokes, a speech by cousin Nick (who was put on the spot by Mad Hatter) and lots and lots and lots of photos and autographs. Maggie was treated so sweetly, so gently, so beautifully. Little Angelina was afraid of the characters who don't have a human face, but Pluto and the others tried so hard to make her smile and feel comfortable. So many thanks to everyone who made this special visit possible - the Havelind sisters, Kym, Ruth, Lori, Josh and anyone else who worked behind the scenes whose names I have missed. This was magical!
Then it was off for some good, old-fashioned fun - rides! Maggie was ready to get the party started. First up, Jungle Cruise. Late this evening, she told Beth that the Jungle Cruise was her favorite because even though the elephants weren't real, they were pretty cute (especially the little ones). Maggie also tried Pirates of the Carribean, Dumbo, Sleeping Beauty's Carousel and Autotopia! And somewhere in there she had some lunch. (Thank you steroid medications for letting Maggie eat and keep her food down). Then it was back to the hotel for a brief rest with Angelina.
After a rest, everyone girl needs a little shopping! So, while the grown ups took turns getting wet on Grizzly River Run, Maggie took a break in a shop for a new stuffed animal. She also enjoyed watching all the grown ups coming screaming down the river! Then it was back to Disneyland for dinner (a hot dog covered in mustard and relish) and a parade, the Parade of Dreams. Maggie loved all the characters. There were far too many to list, but she seemed to be thorougly enjoying it.
We're all taking lots of pictures, and we'll start posting them when we get back. Tomorrow morning we're off to Playhouse Disney to see some of our favorite characters. Based on Maggie's energy level so far, I won't be surprised when she gets up to sing and dance and be part of the show. I can't wait to tell you all about it.
Wednesday, September 7, 2005
Hi Everyone. Aunt Kimmy here reporting from Disneyland. Maggie spent the day at clinic yesterday getting blood cells, platelettes and other good things to pump her body full of energy. It worked! The family was picked up by a limousine this afternoon that drove them to PDX. The flight went well, Maggie slept most of the way. A limo driver greeted them at John Wayne Airport. Maggie was excited the whole way to the hotel, often reporting she could already see Disneyland. The family quickly checked in, and it was off to Goofy's Kitchen for some character dining. Now, you must know, there are 17 of us in Maggie's Entourage. We all have big buttons on with Maggie's face and "Maggie May's Dreams" printed on it. It's pretty easy to find us!
Goofy's Kitchen was just awesome. Maggie was anxious to see Goofy. First we saw Goofy's son, Max, who instantly fell in love with Maggie. There were lots of hugs and kisses for her. Then, it was Minnie, Dale, Aladdin, Princess Aurora (Sleeping Beauty) and Goofy! All of the characters treated our princess like true royalty. Princess Aurora presented her with golden Mickey Mouse ears and stuffed Minnie Mouse in a Sleeping Beauty costume. Her time with Aladdin was just precious. He sang a little bit of "A Whole New World," to her and there wasn't a dry eye in the house. (This is one of Maggie's favorite songs). She was excited to see Goofy who spent a good amount of time with her. We were all so impressed with the quality of care and customer service that was provided by the Disney castmembers. It was truly magical. Aladdin requested a Maggie May button to keep for himself. Max came back to wish her a good night. Max also seemed to have his eye on cute, cousin Kristina too.
Maggie said she was tired and requested to head back to the hotel, but then someone mentioned Build-A-Bear. Magically, she had renewed energy and so we were off, all 17 of us to build bears! Maggie picked a Candy-Corn teddy bear with a Jasmine costume, and little Angelina fell in love with a pink flamingo.
So far, we're off to a fabulous start. Thank you so much to Bev and the whole team at Children's Cancer Association for making this trip possible and to all of our pop-can collectors and other angels. This is a fairy tale adventure that Beth, Rick, Maggie, Angelina and the entire entourage will never forget.
Tuesday, September 6, 2005
Another Good Day!
Monday was another good day for Maggie. The steriod medication is helping with her tummy. So she's actually been eating a bit of food and keeping it down. There was more visits with cousins, aunts and uncles today. She played board games, did art projects, read books... she was really living the life of a three-year old! Maggie's morning got off to a great start when her teacher from preschool came for a visit. She was pretty excited to see Sami! They read many books together, and Maggie enjoyed the time together.
Today is a trip to the clinic, and tomorrow is the day Princess Maggie flies to Disneyland. She's getting very excited. It may be a few days before we're able to post a new journal entry, but we promise to post pictures when we get back.
Monday, September 5, 2005
A Family Filled Weekend
Maggie had a pretty busy weekend. Some of her new medications are helping with her energy level and trying to control her vomiting - which is good! Saturday was full of family - grandmas, grandpas, aunts, uncles and cousins. She slept through some visitors, but I understand she put on quite the show on Saturday evening. Not only was she up, singing and dancing with everyone, at one point she actually got into a fight on the floor with Angelina over a toy. The joys of being three!
On Sunday, there were more family visitors. Beth and Rick could have a mansion, and there still wouldn't be enough room for the visiting family members. It's pretty great. She was actually running around the house yesterday, which we couldn't believe. She made macaroni necklaces with her great grandmas and great aunts from Tacoma. What a site, as they all broke into song, "Yankee Doodle went to town riding on a pony...." Then it was sensory play - buckets and bowls with rice, beans and popcorn seeds. This is an activity that's really popular in preschool, and Maggie loved it at the hospital as well. She was pouring, scooping, hiding treasures, etc. and enjoying it!
A new member joined Maggie's family yesterday as well - pet fish! Maggie first fell in love with fish at Emanuel hospital. There are fish on the children's floor, as well as down in the lobby areas. Then when she got to Doernbecher, there were fish in the clinic area. A favorite pasttime has been visiting the fishtanks. So, Rick couldn't help himself when he was at Petco yesterday getting supplies for Taz (their dog). I haven't seen the fishies yet, but I bet it was a big hit!
Today will be a day of rest as the family gets ready for the trip. Mommy and Daddy are getting things prepared for the trip, and tomorrow will be a long day at the clinic. Thank you to everyone who has helped with arrangements for this magical, fairy tale adventure to Disneyland. Maggie's looking forward to meeting princesses, Mickey and Minnie. Our entire family has been overwhelmed with the outpouring of love and support this past week as everyone has been working to make this trip possible for Maggie. A special thank you to our friends at the Children's Cancer Association and the Dreamcatchers program for making this dream a reality on such short notice.
Friday, September 2, 2005
A Long Day
Today was a very long day in the life of Maggie. It started with a trip to the clinic at Emanuel where she received blood platelettes and red blood cells(which give her energy!). Maggie was happy to see Dr. Norwood and Dr. Olsen. Her blood tests revealed that her leukemia is spreading rapidly. This was not good news. After discussion with Maggie's doctor, Beth and Rick decided to continue with their plans for Disneyland next week. Maggie will visit the hospital next Tuesday where she will receive blood, fluids, etc. to help pump up her energy level for the big trip.
After the clinic, it was off to the Oregon Zoo with the "entourage." There were aunts, uncles, cousins and Grandma Sharon, along with Mommy, Daddy and Angie. Just like her last trip to the zoo, she enjoyed a strawberry ice cream cone! And although Tusko, the new elephant, wasn't on display, it was a great visit for everyone.
The evening was full of family members visiting. Maggie seems to understand what is happening and is getting a little shy of the attention. While she loves being home, her energy level is lower, and she often pretends she's asleep to avoid the extra attention.
Thank you to everyone for the generous donations this week to assist with Maggie's fairy tale adventure to Disneyland. What a blessing for Maggie's family. Now more than ever, Maggie's family needs your love and prayers to guide them on this journey. And please send prayers for our friend Oliver who received his bone marrow transplant today courtesy of his big brother!
Thursday, September 1, 2005
A Trip To The Beach!
Maggie and family headed down to Cannon Beach today. It is one of the most beautiful beaches along the Oregon Coast. Maggie wasn't so sure about walking in the waves, but she couldn't resist playing in the sand with sweet Angelina. Beth said they had a great time. Maggie requested ice cream before heading home, and Grandma reports that Maggie chatted the whole way home! This is big news, as Maggie hasn't been as outspoken as just a few weeks ago. Guess the Oregon sunshine did her some good. (We'll post pictures soon)!
She's off to clinic tomorrow for blood tests, a possible blood transfusion and check-up. I believe she's going to clinic at Emanuel with her oncologists, which would also mean a trip to the 3rd floor to visit her many friends she has been missing. There should be lots of smiles and happiness as she's reunited with the friends who take care of her for so long before her transplant.
We can't believe the outpouring of messages and love that have been coming. Thank you all so much. You touch our hearts in ways we didn't know possible.
Wednesday, August 31, 2005
Maggie came back home yesterday! Angelina was so happy, as was mom, dad and grandma. It's so nice to have everyone together. Maggie is still on some IV medications, so Beth continues to work with home health and practice being a nurse. They will transition to hospice care in the coming weeks as it becomes necessary. She's been pretty tired the last couple days, but she perks up for her favorite songs and tonight sat up for some Baskin-Robbins Daiquiri Ice ice cream (her favorite)!
Beth and Rick have decided to add some adventure back into Maggie's life, so they're heading to the beach tomorrow, and next week we're off to Disneyland! Thanks to our friends with the Children's Cancer Association for helping make the last minute trip possible. Maggie is so excited about meeting the princesses! Little do those Disney princesses know, that Maggie will be the shining star in all those princess photos. Make-A-Wish is also trying to help coordinate a special event for Maggie which will be something local. Aunt Kimmy and crew are still working on Maggie's big wish, which is singing "Maggie May" with Rod Stewart. Maggie's been practicing lots, and now even Angelina shakes her booty to Rod. We'll try to post some video clips later this week with Maggie singing and dancing.
I imagine a trip will also be planned to see Tusko, the new elephant at the Oregon Zoo. With school going back in session, there should be fewer people at these attractions, which means fewer germs for Maggie.
Thank you to everyone for your prayers, love and support over these past few days. Your love provides the strength that our entire family needs during this unimaginable time.
Monday, August 29, 2005
Maggie checked back into the hospital last night with a low-grade fever. This was suppose to be just a routine round at the hospital, making sure that Maggie didn't have anything viral/bacterial in her body. However, this morning we found that Maggie has relapsed and her leukemia is back. The news has been devastating for the family. Beth and Rick spent the day with their medical team discussing how to best keep Maggie comfortable, a possible transfer back to Emanuel (for extended care if needed) and home health/hospice options. They're hoping to take Maggie back home tomorrow and spend some time as a family doing some fun activities - like meeting the new elephant at the Oregon Zoo and playing at the beach. Please continue to pray for Maggie and her family as they continue on this very difficult journey.
Thursday, August 25, 2005
Life At Home
Everyone's getting use to life back at home. Thanks to Grandma Sharon for providing this journal entry of life at Maggie's house. Maggie is still at home & enjoying it, but boy oh boy, is life hectic around here! Typical day: awake at 6 AM when Maggie throws up. Change the bed, change Maggie & change mommy (1st load of laundry for the day). The IV pump shut off in the middle of the night, so needed meds are not delivered (1st call to Home Health). Meds are given all day (& every 4 hrs during the night) for nausea, stomach pain, anti-rejection, low-grade fevers & GVHD rash. Maggie needs to eat, wants to eat & tries to eat but most of the time it comes back up (more laundry). Her fever starts to climb (1st call to clinic). The IV pump has been pre-set to start at the wrong time (2nd call to Home Health). It won't restart (3rd call to Home Health). Maggie's rash seems to be coming back (2nd call to clinic). Friends have brought dinner & she tries to eat, but once again it doesn't stay down. (More laundry).
You would think through all of this Maggie would be miserable, but between the bumps during the day she plays with Angie, watches her favorite TV shows and naps. Her cousins visit. She somehow manages to be a happy little girl enjoying life with her family.
Have I mentioned how AMAZING my daughter (Maggie's mom) is? She has learned to give all of Maggie's IV meds with the portable pump & through her "buddy". She doses her meds throughout the day (& night). She does blood draws for the clinic, which daddy delivers, so Maggie won't have to go in so often. She and Rick manage to always keep calm and get the job done. When Maggie is sick to her stomach they comfort her. They clean up behind her. When she's hungry they fix whatever it is she's asked for, knowing full well that she most likely won't eat it. Then they fix her something else that sounds good to her 10 minutes later. They are THE MOST PATIENT parents I've ever seen. They are both amazing.
So life here is hectic, that's for sure. But love abounds. Happiness prevails. One smile from that beautiful little face, one hug for Angie from her big sister, one kiss good night in her own bed make it all worthwhile. I don't think any one of them would have it any other way. Please keep praying for the whole family.
Saturday, August 20, 2005
Maggie's on her way home! The house is clean, her fever's gone and Home Health is on the way! Premilinary lab results are not quick to identify the ailment in her stomach, but doctors believe it is not GVHD, so it's probably something viral. There are far too many viruses to test, but they're hoping that once Maggie gets home, gets some energy and starts to eat, it will work itself out. Her skin rash is definitely GVHD, which is great - no surprises. As long as there are no major changes, Maggie should be home for quite a while (with regular day trips to Doernbecher starting on Monday). Thank you everyone for your prayers last night that helped get Maggie home today. Once again, the Williams family is reunited!
Friday, August 19, 2005
A Roller Coaster Ride That Lasts All Day!
Whew! I think today makes the best roller coasters at Magic Mountain look like a little kiddy-car ride. Maggie started her morning with her endoscopy, colonoscopy and a skin biopsy. Doctors are hoping to confirm their suspicions about Graft Vs.Host Disease and her current symptoms/side effects. The doctor was surprised to see that Maggie had an irregular colon, with some bloody areas. He took biopsies that have been sent to pathology and the lab. This wasn't expected news, and Beth and Rick assume this means their stay at the hospital will be longer. They assumed that the lab results wouldn't come until Monday, so it was going to be another weekend at the hospital. But then doctors said, since they believe it's GVHD, they were going to release Maggie today.
Now, gGoing home isn't quite as simple as packing your suitcase and riding in the car. First, all of Maggie's prescriptions have to be filled at the one pharmacy that handles these medications, if the one pharmacist who mixes them is in. Then, there's the matter of Home Health and whether or not they can get someone to come out on a Friday afternoon/evening with Maggie's new IV's and get Beth trained on them. Of course, to go home, the house also has to be clean/sanitized, so there's vacuuming, mopping, dusting, sterilizing to be done. And then there's the matter of packing up all of the clothes, blankets, toys, books, etc. that are in Maggie's hospital room. All on a moment's notice. These are the days you wish you were Samantha Bewitched and could just twinkle your little nose because you so desperately want to be home with your whole family, but you can't make it happen in a New York minute.
So, the nursing staff starts working on their end, Grandma starts cleaning the house and Beth and Rick, although they're excited, are anxious about going home with so much care still required. At home, we're all waiting by the phone wondering what time Maggie will be heading home. Then Beth calls to say, Maggie's spiked a fever of 101, and they probably won't be heading home. It's not definite, but standing orders call for Maggie to be fever free for 48 hours before she can be released. Beth says there's still hope of Maggie coming home tomorrow, and we all pray that whatever is best for Maggie, whatever makes her most comfortable, whatever helps her smile from ear to ear, we pray that it happens for her tomorrow.
Thursday, August 18, 2005
Maggie is still struggling with vomiting and diarrhea, so today she'll have an endoscopy procedure where they will send one camera down her her throat and one through her bottom to take a good look at what's going on in there. I'll post more as soon as we know something.
In more fun news, there's lots of new photos in the gallery!
Monday, August 15, 2005
Life continues in the hospital for Maggie. Her rash has spread from her head down to the bottom of her feet. Some areas are actually peeling, almost like after a sunburn. They're able to keep her fairly comfortable with an assortment of ointments and lotions that help make it not so itchy. This is a form of GVHD, and it was one side effect we knew could come. My daughter Ali thinks it looks like a bad case of the chicken pox.
Maggie hasn't been able to get rid of her fever for more than 24 hours, so she needs to remain in the hospital for the time being. And due to her vomiting and lack of eating, the transplant team would prefer to keep a close eye on her at the hospital. There is a chance that if she can get rid of the fever she can head home (at least for a little while), but it will mean running extra IV's at home since she is not eating, vomiting, battling diarrhea and has the rash. This would be quite a workload for Beth, who is getting more and more practice of the world of nursing every hour. Doctors would still like to see some improvement of these current symptoms, and they're hoping a new oral steroid will help at least with her esophagus and stomach. If they can't stop the vomiting by the weekend, Maggie will probably have another endoscope procedure early next week. Sometimes the GVHD can hide in tiny little spaces in your body, and the doctors want to make sure they know where every little speck is.
Maggie's spirits are still good. She has more "gusto" than anyone I know. With the tea party this weekend, there were lots of out-of-town guests visiting, and Maggie enjoyed entertaining each and every one of them. She's been playing with Polly Pockets a lot and a new set of Kid K'Nex she earned by taking her oral medicines. She's nibbled a bite of food here and there, from Easy Cheez to baked potatoes, but it all comes back up. She doesn't seem to mind though, and at least tries something here and there.
This is such a long journey, and I think it's finally settling in for Beth, Rick and all of us, that God has created a new path for Maggie and her family. It's not the path any of us imagined when little Maggie was born, but it is the path we must follow. There's definitely a difficult adjustment period when you no longer control your life and you must learn to roll with the punches, so to speak. Adrenalin can only take you so far, and I think Beth, Rick, Grandma Sharon and the entire family are running on fumes. God only gives us as much as we can handle, but a few extra prayers for more strength and courage would sure come in handy. Thank you.
Wednesday, August 10, 2005
Maggie is re-adjusting to life back at the hospital. She had a fever most of today and doctors are monitoring her rash/GVHD. It looks like she will be at the hospital until Friday or Saturday. Today they took some tests/cultures to further investigate her symptoms. Although she didn't complain at all going back to the hospital last night, Beth said she was a bit whiny today and wanted to go back home.
She did get to participate in a fun event today, when Hyundai came to make a donation to the Doernbecher Children's Hospital. They invited several children to come and place their handprints on a car that is being auctioned off for a fundraiser. Sounds like Maggie had fun participating in that. The good news about this trip back to the hospital is that Maggie can at least leave her room, take walks and have visitors, so not all is bad. A special thank you to Nurse Cathy who helped with some preparations to get Maggie's room ready for her when they arrived late last night. I can't imagine it was easy for anyone to head back after just a few short nights at home.
Tuesday, August 9, 2005
Two Steps Forward, One Step Back
Maggie did great overnight and through most of today. A home health nurse brought a new IV medication to help with acid reflux last night, and Maggie was able to keep her meds down today. She had a very low fever throughout the day, and later this evening her fever spiked and the rash spread to her chest and back. Beth and Rick took her back to the hospital where she'll spend the night for observation. We believe this is just some GVHD, which is a good thing, even though it means sleeping at the hospital.
Maggie really enjoyed playing with Angie today. She was up and about, dancing and even jumping at times! She's still not eating, but she's full of smiles and laughter. Her best giggles come when she's playing with Angie or her cousins. I think she really enjoys being with people her own size again. We'll post more as soon as we learn anything new from the doctors.
Monday, August 8, 2005
Life At Home!
Maggie's weekend went pretty good! She only had to head back to the hospital on Saturday and Monday morning for blood work and tests. Her rash has been diagnosed as GVHD, which is great (even though the rash is awful). They're able to keep some ointment on it so it's not too itchy for Maggie, so she's still pretty comfortable. She's been struggling with taking her medications and keeping them down, so Beth is working with doctors to tweak her medications and routines. We're keeping our fingers crossed that it can get resolved in the next day or so, otherwise, Maggie will need to re-admit to the hospital.
Maggie is loving being home. She's playing a lot with Angie, watching her favorite movies, doing some singing and dancing, playing Polly Pockets and all of her favorite activities. She's had a chance to see a couple of her cousins, and her laughter was infectious as she played (and sometimes watched) her silly cousins. I think she just enjoys the sound of children so much, and she is finally surrounded by it again. She hasn't eaten since Friday night, but her TPN continues to give her the nourishment she needs.
The family as a whole is adjusting to the changes of being home and caring for a child with a serious illness. Maggie is up several times a night, similar to a newborn, but often throwing up and requiring a clothing and bed change. The washer and dryer seem to be running 24/7, and there are about 22 syringes to wash and sterilize daily from medications. But it is all worth it! Maggie's smiles are back in full force, as are Angie's. It's pretty great!
Maggie's Nana Williams has been battling her own health issues recently, and we ask that you please include her in your prayers this week. Thank you.
Friday, August 5, 2005
Yes, it's true, Maggie came home today! It's been more than two months since Maggie saw her own house, slept in her own bed or was even in the same room as her Mom, Dad and baby sister all at once. It's so incredible. She got home in the middle of the afternoon, luckily before too much of that crazy Sunset Highway traffic. She had some artichokes with mayonnaise and baked potato with sour cream for dinner. It looked pretty yummy.
She still has a rash on her face, which we're hoping is the GVHD. She was very talkative tonight and happy to be home and socializing with kids again. Beth and Rick have over 20 medications to give Maggie each day, as well as her TPN which is given through her "buddy" over 12 hours each day. I'm pretty sure they have much more medical experience then they ever thought they would need in a lifetime.
It will be a busy weekend for Miss Maggie. She has to return to the hospital Saturday morning, Sunday morning and Monday morning for a variety of tests and procedures. Next week she will also start outpatient physical therapy and occupational therapy as she works on getting her strength back. I think more than ever her parents will have to juggle the care of Maggie, her sister, their work and home. Your prayers and words of encouragement coupled with Maggie's smiles give them the strength they need for these very busy, very stressful days.
Thursday, August 4, 2005
The Next Chapter Begins!
Well, it looks like Maggie is ready for the next step in her incredible journey. Doctors are hoping to send Maggie home tomorrow afternoon! Maggie is now on Day 132 of the journey, and tonight will be Night 64 in a hospital without seeing home. Pretty hard to believe.... Once she gets home, she'll return to the hospital 3 to 4 times per week for bloodwork, transfusions, physical therapy and more. She'll be taking more than 20 medications per day. There are nine in the morning, nine in the evening and several scattered throughout the day. Unfortunately, this is also the part where the hassles of insurance come into play. Although insurance will cover transplants, it does not cover all of the necessary medications before and after the transplant. Beth has been doing a lot of legwork to find a pharmacy that can mix the medications she needs as well as bill their insurance (even if it's only for partial payments). Sure makes you want to live in a land where every citizen gets full insurance coverage.
In more good news, Maggie's teddy bear arrived from her donor today. It looks like the delay in receiving the bear was because the bear is about the same size as Maggie! Beth reports she's super soft and cuddly. Maggie named her "Katy, not for my cousin Katy but for my imaginary friend who looks just like this in my head."
And, in just the last couple hours a rash has begun to develop on Maggie's face. It's unknown what it is at this point, but we're hopeful that it GVHD (Graft V. Host Disease). As soon as we know more, we'll post it.
Wednesday, August 3, 2005
Wow, I didn't realize how long it had been since the last update. The good news is that there isn't a lot to report. Maggie continues to have some vomiting that is keeping her in the hospital. Last Friday, she had an endoscopy to look at her stomach. Doctors did not find any ulcers, blockages or evidence of GVHD. Over the weekend, more of Maggie's pain medications were reduced, and she is now taking all of her anti-rejection, pain and assorted medications by mouth. Her only IV items are her TPN (nutrition) and stomach-related meds. On Tuesday, she had drank barium and had a GI to look for blockages in her small intestine. We're still waiting for results on those tests.
In the meantime, doctors are still prepping the family for Maggie's move back home, hopefully by the end of this week. Their only concern is that she will throw up medication that she needs. Everyone is pretty excited about the prospect of sleeping in their own bed each night. Once home, Maggie will still travel 3-4 times per week to the clinic at Doerbecher, but she should be able to spend lots more time with her whole family.
Maggie's attitude continues to be great. She's been having fun with visitors, physical therapy and her child life therapist who comes to play with her. She scheduled to paint some pottery later this afternoon with her Chemo Pal, and yesterday she baked chocolate chip cookies in an Easy Bake Oven. Pretty fun! Her fuzzy, brown hair and eyebrows have fallen out, which was expected to happen after the radiation/chemotherapy. Her weight is still much higher than just a month ago, but with fewer steroids and less nutrition in a bag, I think it will start to come back down.
Thursday, July 28, 2005
One Step Forward, One Step Back
Maggie's ANC and good cells are on the rise! She actually got to leave her room yesterday for a quick stroll around the oncology floor. It was pretty exciting! Maggie's room has a special room outside of her main room that is used for washing hands, etc. before you enter her room. I understand she threw quite the fit when they hit the little room, and she refused to go back in her room without some more walking. Who can blame her? Her physical therapist was bringing her back after a short walk since Maggie was a bit shaky, but Maggie wouldn't have any of that. Her stubborn streak kicked in, and she was able to walk a little more!
Seems like some of the doctors may have been a little too optimistic about Maggie's return home next week though. While she isn't battling any major side effects at the moment, the throwing up has returned. In order to go home, Maggie needs to be able to take all of her meds by mouth (which she's getting pretty good at), but they have to go in and stay in, which isn't very likely.
The oncology team would still like to see Maggie get GVHD (Graft vs Host Disease) and beat it. This is her best chance for staying leukemia free. The return of throwing up can be a sign that the disease is on it's way. So, although we've all been praying for her to be healthy, a little bout of this icky disease would actually be a good thing.
Tuesday, July 26, 2005
The Magic Begins
It sounds like the magic of science, biology and faith are finally coming together for little Maggie May. Doctors said today that her body is starting to graft to her new marrow! We're all on the edge of our seats praying that Maggie's body will accept this new, healthy marrow. Some doctors are optimistic enough to think that Maggie may head home next week, at least for some day passes! I think we were all shocked at that announcement. Some doctors caution that next week might be a bit early, as GVHD (Graft vs. Host Disease) will start to develop this week (probably).
Coming home is a HUGE step requiring lots of work. Maggie's immune system will be under par for some time, which requires a very rigorous cleaning schedule. For example, before she can come home, the house must be sanitized from floor to ceiling. They will shampoo carpets, wash all draperies, pack up all trinket items that are dust magnets, send the cat in for all her vaccines and countless other tasks. There is also a cleaning routine that will need to be maintained once Maggie gets home, it almost feels a bit like Cinderella, requiring much more cleaning that the typical household with toddlers.
Thank you to everyone who participated in last evening's prayer vigil. Maggie was curious about just who God is and why everyone was talking to him last night. I understand that her prayer was quite simple, "God, please make me feel better." I am sure we numbered into the thousands last night, and I can't imagine a more glorious, uplifting thing. Thank you.
Monday, July 25, 2005
The Road Is Steady/Prayer Vigil Tonight!
There has been more of the same over the weekend - no news is good news! Maggie has felt pretty good these last few days, with no fever or other new side effects. She is still not eating as the sores in her mouth, throat and stomach are healing, but the road has been pretty steady this last week.
Doctors still expect the twists and turns to come probably this week as her body begins grafting to her new bone marrow. In the meantime, there are long naps, playtime with mommy & daddy, a few visiting nurses and new toys and games to play with! Grandma Sharon even brought Angie down for a very short, but very happy, visit! And those silly clowns from the Strelchun family were back with another puppet show and other silly acts over the weekend.
Please join us all this evening in a Prayer Vigil for Maggie at 8:00 pm Pacific Standard Time. Knowing that hundreds, perhaps thousands, of echoed prayers were being sent to the Heavens at one time will truly be a spiritual uplifting for us all.
Wednesday, July 20, 2005
No News Is Good News
There isn't much new news to report on the Maggie front. She's been having some great days! She is able to play on a mat in her room, plus she's been enjoying Polly Pockets, a new magnetic storyboard and the computer. She usually is up for a few hours, then naps for a few hours, then back up for a few hours. If you're lucky, her timing is good, and if not, she sleeps through the late afternoon and evening and wakes up around 9:30 pm. This is a picture of her napping on the daybed in her room after playing on the mat with her toys.
Monday, July 18, 2005
Maggie had a good weekend, that was pretty uneventful! Yippee! Doctors were thrilled at her response to her treatment thus far. Although she is fighting the blisters in her mouth/throat and a potential viral infection, she remains fever free and her vomiting is only occasional. Initial tests on her liver function after the radiation are good, which is helpful as GVHD (graph vs. host disease) can also strain the liver. On Thursday, she got a pain medication pump which allows her to control her pain medication. Doctors do not want her to feel any of the pain associated with the side-effects (and those that are still coming). This allows her to receive a low-dosage of pain medication on a continual basis rather than dosing every several hours, waiting for the medication to kick in, etc. It's certainly helped her be in a better mood.
She had some more visitors from Emanuel late last week, and she's started physical therapy and other play in her room. She has really taken to talking on the phone, and makes frequent calls to her aunties and Papa Potato. While Beth was on the regular phone this morning, Maggie helped herself to Beth's cell phone to call her old room at Emanuel and ask for Quoc. Oops! She's definitely mastered phone dialing at an early age.
Maggie's spirits seem to be good. She's playing computer games, singing with her cd's, doing art projects and other fun things to pass the time. Beth and Rick have enjoyed the breaks provided by Doernbecher volunteers. It gives them a chance to get some fresh air, grab a bite to eat and make phone calls. Although Maggie's room is cute, bright and sizable, you do get a bit stir crazy.
More side effects are anticipated to arrive this week from the transplant, and Beth and Rick are as prepared as they can be for this leg of the journey. We posted some new photos, so check out the Galleries too.
Friday, July 15, 2005
Time For Fun & Games
Maggie's energy has returned these last couple days. Although the side-effects of radiation are starting with blisters in her mouth and throat, she has been mostly smiles. Physical Therapy brought in a play mat so Maggie can get down on the floor, play games, do puzzles, etc. She loves to talk on the phone, so she's having mom or dad dial numbers for her throughout the day so she can say hi to different family members. She's been very talkative and playful, but then there are reminders that she's sick like she doesn't eat and can't leave her room.
Yesterday a couple clowns came to visit. (Okay, they weren't clowns, it was Aunt Kimmy, Ali and Lucas). Because kids can't come in to visit, they entertained Maggie through her window. There was dancing, singing (into a cell phone), peek-a-boo and funny faces. Maggie was laughing so hard, she had to hold her belly, and we could hear her laughing in the hallway. This princess has a million dollar smile, and her giggle is even better!
Wednesday, July 13, 2005
Maggie is starting the next leg on her journey. Although it will take two to four weeks to start seeing side effects from the bone marrow transplant, doctors have prepared Beth and Rick for what should be a very hard couple of weeks. The effects from radiation and chemotherapy are starting to hit Maggie now. She is developing sores in her mouth and mucusitis. Radiation causes the salivary and mucus glands to overproduce, which can cause sores in the mouth, "gunk" in the lungs and vomiting.
Maggie's post-transplant regiment is also underway. This includes lots of medicine. She is taking 5 or 6 antibiotics, anti-rejection medications and a list of items to ward off all the ickies. Daily showers have been added to her routine, as germs can be in the air on and her skin even in a protected environment. Yesterday she spent a good part of the day sleeping (which meant she was awake most of the evening). Toys, TV and the computer are helping Maggie (and Mommy) pass the time.
Tuesday, July 12, 2005
A Patient, Courageous Girl
Maggie successfully received her bone marrow transplant last night!!! There was traffic in Portland, so it arrived a little later than planned. The transfusion started around 10:30 pm. Due to the high amount of fluids she had received earlier her blood pressure went through the roof. So, they slowed down the transfusion and it ran for about 2 1/2 hours. There was a nurse, resident and oncologist on-site managing the transplant. After about an hour, Maggie fell asleep, and Beth said she and Rick closed their eyes before it was over as well.
Maggie playing on the computer as her
transplant is starting.
Maggie fell asleep about an hour into
Maggie fell asleep about an hour into the transplant.
Two cards arrived with the cells, and we wanted to share their messages with you:
"Hello, We don't know each other, but we've been connected. I just hope that it works. All it takes is a little faith and hope and things will turn out ok. Our prayers are with you. Get well soon and stay in touch. Your donor."
The second card was suppose to arrive with a teddy bear (but it had to be sent separately). That card read, "Hope you feel better soon and that your new teddy bear brings you years of joy that I'm sure you'll bring your mommy & daddy. Get better soon. Your donor." The staff said they had never seen a gift or card arrive with cells before. What an amazing young man who gave our Maggie May a second chance at life.
When Maggie gets up this morning she has two new beads to add to her journey bead necklace: a Clock Bead that symbolizes her patience and a Lion Bead that symbolizes her courage.
Sunday, July 10, 2005
Tomorrow's The Big Day
Maggie's bone marrow is arriving tomorrow evening, so she will actually receive it tomorrow evening around 10:00 pm! She finished her radiation on Friday and tolerated it pretty well. It gave her a tummyache, but she never developed a fever as was expected. Saturday and Sunday both brought chemotherapy and lots of throwing up. Maggie's still adjusting to her new room, but she really loves the computer and access to her favorite websites for playing games and other special activities.
Maggie doesn't look quite like herself these days, or I should say, she doesn't look like she did three months ago. She has lost the bulk of her blond hair, with a just a couple strands that are still hanging on. After losing her eyebrows and eyelashes, they're returning and coming in a shade of brown. She also has some new hair just starting to come in and it's also looking brown. I'm not sure if this new "peachfuzz" will stay, or if it will be lost as a side effect to this week's radiation and chemo. Between the steriods and loads of fluids she's getting through her "buddy," Maggie has developed a really round face and tummy. Of course her best feature, her smile, is still there and as big as ever. I'm amazed that she still has the strength for smiles and laughter, but she does, and she still melts every heart that comes in her room.
Keep those prayers comings. Tomorrow's the big day when little Maggie starts the next chapter on this journey. Let's hope she doesn't have too many twists and turns.
Wednesday, July 6, 2005
Maggie moved into Hotel Doernbecher yesterday morning after 100 days at Emanuel Hospital. OHSU is a much bigger hospital, and the whole family is trying to make the transition as smooth as possible. There are new doctors & nurses to meet, and all of the little details to figure out (like where can you get dinner at 9:00 at night and where do you park?).
Maggie's radiation started this morning. She has one round at 7:30 am and a second round around 3:30 in the afternoon. Between the two rounds she has a window of 30 to 60 minutes to eat (if she's interested). Beth said they felt very welcomed when they arrived at the radiation center this morning, and Maggie's photo from The Beaverton Valley Times was posted on the wall. Also, a resident came in to have Maggie autograph her copy of the Valley Times. We are fortunate that a team of residents, who just finished their round at Emanuel, are currently at Doernbecher - so there are some familiar faces!
We heard today that Maggie's marrow is arriving at PDX at 7:00 pm on Tuesday evening. She will receive the marrow around 9:00 pm that night. For Maggie, this is not a surgical procedure. It is similar to a blood transfusion, so there shouldn't be any adverse reactions that night.
Monday, July 4, 2005
A Good Weekend!
Maggie has had a great weekend. Her energy level and mood have been good. She's even been acting like a normal three-year-old, independent streak and all. There have been lots of visitors this weekend since Maggie was feeling decent and didn't have chemo or procedures happening.
Tonight, Maggie is going with her mom, dad and Nurse Quoc over to Dr. Norwood's office at the hospital to view the fireworks. We're have great sunny weather in Portland, and she'll have an awesome view. She's very excited about it.
Tomorrow is the big day when they move to Doernbecher. Rick and Beth will drive her over in the late morning. It's expected that she'll have some lab work, maybe minor procedures to check on her bone marrow before the radiation treatments begin on Wednesday. It's going to be a very long, grueling weekend for Maggie and her parents, so it's been great to see them have a fairly relaxing, enjoyable weekend before it all gets started. Thank you so much for your continued prayers and support as this new chapter for Maggie May gets started.
Thursday, June 30, 2005
The Next Chapter Begins
Today Maggie travelled to Doernbecher with her mom and dad to meet the transplant team and start some preliminary lab work. She met the Transplant Coordinator who has accepted Maggie's case. Maggie is scheduled to move in to Doernbecher on Tuesday morning. She will receive three days of radiation, followed up with two days of chemotherapy, one day of rest and her bone marrow transplant on July 12th. This plan should only change if Maggie develops another fungal infection.
This is going to be a difficult chapter in the journey. Beth and Rick are prepared for the coming weeks (or as prepared as you can be). Maggie will probably feel a lot worse before she feels better, so everyone is gearing up for the challenging weeks ahead.
Wednesday, June 29, 2005
The Roller Coaster Ride
I've often compared Maggie's journey to a roller coaster ride with twists, turns and loops that throw you upside down. Today was suppose to be Maggie's last day at Emanuel, but as luck would have it, the ride didn't go that way today. Maggie woke up this morning with a fever and more nausea. She was also complaining of chest/side pain. So, she will continue on at Hotel Emanuel until her move to Doernbecher on Tuesday. Beth tells me she's actually happy about staying, as she and Rick were so nervous about going home. Maggie's special hospital room is a much more controlled environment that being at home with a toddler, cat, dog, grandma and two parents :)
Her continued stay at the hospital hotel meant a new round of antibiotics getting started today, as well as a CT-Scan to check out her lungs. Maggie was such a good patient at CT, they didn't even sedate her as they usually do. I guess she went right in, told them what to do and why she was there, and they were done in no time at all. What a girl!
Tuesday, June 28, 2005
Big Hospital News!
Beth just met with Dr. Norwood who announced that Maggie will be released from Emanuel on Thursday! He said as long as Maggie stayed at home, indoors, she could spend the weekend at home before her big move to Doernbecher. Wow! She still has to be careful about infections, but Beth assures me they'll be hanging out at home, resting, relaxing and enjoying family time before the long stay for her transplant.
Monday, June 27, 2005
Maggie finished her fourth round of chemotherapy this afternoon. Beth said she wasn't much interested in playing with the cold ice today, so they let her nap, and packed ice around her hands and feet while she slept.
Her daily bloodtests are not showing any new blasts, so we're praying that the chemotherapy is doing its job. It looks like Maggie will transfer to Doernbecher on Tuesday, July 5th. Initially we thought she would need to have a bone marrow test before she could go, but today they said they would accept her on the 5th without the test. So, now we wait and pray that the next week is uneventful and restful so Maggie is ready for her transplant.
Thank you to everyone who dined at Chevy's today. We saw lots of friends and family there tonight. It was like a party without cleaning your house or doing any cooking. Perfect!
Sunday, June 26, 2005
An Amazing Day!
Maggie did get a short pass to leave the hospital this evening after her chemotherapy. It's still amazing to me that this sweet little girl has cancer raging in her body, and 30 minutes after chemotherapy she's up for a field trip. I wish we all had her strength and courage.
The family all met up at Aunt Becky's house for an impromptu BBQ. And while the food was delicious and the company good, it was Maggie's doling out of kisses that brought that family running like a herd of elephants. Maggie doesn't feel much like kissing most days, and when her tummy was feeling better, she felt like handing out kisses to everyone... twice! Personally, I jumped out of my chair and knocked over my husband to get a Maggie kiss!
After dinner, Maggie played doctor with Katy, read books with Ali and laughed at Lucas and Nick who were enjoying entertaining her. Then, Maggie put on a show for us. She stood up, with a Lincoln Log for a microphone and belted out "Maggie's Gallery." Like a true performer, she stood for the whole song, using the best facial expressions and hand gestures. Look out Celine Dion - this little girl will give you a run for your money someday. All this from a girl, who has spent so much time in bed lately, she can hardly walk. It was truly incredible! She enjoyed the performance and round of applause so much, that she and Katy preceded to do several songs from the TV show, The Backyardigans. When Grandma Sharon asked for an encore, it was "A Whole New World" from Aladdin. I'm telling you, Maggie is meant to be a performer. She's a natural. It was an absolutely perfect way to end a field trip home with family. And, being the little trooper that she is, when Beth told her it was time to head back to the hospital, she sat down, put on her shoes, hat and mask and waved her princess wave to all of us. I wish you all could have been there with us (and I'll try to post photos soon).
p.s. Check out the new Golf Tournament Gallery!
Sunday, June 26, 2005
New Chemotherapy Going Well
Maggie started her new round of chemotherapy on Thursday afternoon. This drug has an unusual side-effect called Red Man's Disease. This rash causes red skin and itching on the hands and feet, so to prevent Maggie from getting this disease, the team of doctors have had some tricks up their sleeves. By keeping Maggie's hands and feet cold during the chemotherapy treatment (two hours each day), the rash is staying away. The Child Life Specialist worked with the doctors to come up with lots of fun activities to keep Maggie interested in buckets of ice. The first day was a bucket of shaved ice mixed with shaving cream. There was lots of creating and sculpting going on. They have also been playing with polar bears and penguins, which has led to stories and research about these animals. Maggie has been doing well with the treatment so far, and it's expected that her counts and energy will start to drop early this week.
She has had a couple good days with some walks, singing and visitors. She was happy that Daddy was there to spend the night last night, and I hear they had a great sleepover party. There's a chance of a short day-pass this evening, which would be her last pass home before the transfer to OHSU's Doernbecher Hospital.
Wednesday, June 22, 2005
Busy, Restful Days
As is always the case, there have been scheduling changes since the last time we wrote. Maggie is starting a new chemotherapy this week, Clofarabine. However, it's such a new drug, there wasn't any in Portland. So, her new chemo will start tomorrow. The exciting part of this delay is that Maggie has had a couple days of rest before this new round. And they've been fun days!
On Monday, Grandma Lois came to visit from Tacoma. When the physical therapist came in, Maggie decided she was up for a walk! Not only did she take Janie, Grandma and Mom for a walk, but they walked through the garden outside! This was the first time since being readmitted that Maggie had been outdoors. And on such a beautiful day! But a walk wasn't enough for our little princess that day, she then had Nurse Shari, Grandma and Mom take her for a wagon ride down to the cafeteria so she could pick up some food. Beth says they walked so much, even she was tired! There was a pretty long nap in the late afternoon after all that excitement.
Monday was also the Maggie May Golf Tournament. So many people came out to celebrate and honor little Maggie May. Mom and Dad were both able to be at the tournament to meet all of the people who came together to help our girl. It was an incredible day!
Since the chemo was delayed, Dr. Olson decided Maggie was ready for a break from the hospital! Maggie had a day pass for home yesterday and today. She gets to come home for several hours, without any IV's plugged in. Yesterday she had many visitors and got to have McDonald's for lunch. When she walked in the front door, Angelina blurted out, "MAG!" Then she got to read books with cousin Ali, play legos with cousin Lucas and do make-up with cousin Katy. A pretty busy day! Daddy came home early from work both days too! When he came home today he was blending up milkshakes for Maggie, who also requested artichokes for dinner. After dinner, she'll head back to the hospital with Mommy in preparation for tomorrow's therapy.
This new round of chemotherapy will run for five days, and they anticipate to see the results of the medications 7-10 days out. The current plan is for the chemotherapy to run June 23-27, with Maggie transferring to Doernbecher on July 5th. Once at Doernbecher, she would have six days of radiation & chemotherapy, one day of rest, and her bone marrow transplant on July 12th. It's not certain if her cancer has to be in complete remission for her to transfer to Doernbecher, but it's certainly what we're all praying for.
Sunday, June 19, 2005
Good News/Bad News
Dr. Norwood was in today with good news and bad news. Maggie's lungs are improving, and her ANC count is quite high, over 1,500. But he also had bad news, AML cells were in her latest blood work. He's not happy about the short duration of her remission and is puzzled about the next steps in Maggie's treatment. So, Maggie is currently scheduled for a bone marrow test on Tuesday morning, and she will start a new round of chemotherapy on Tuesday afternoon/evening. The oncology team has been working all weekend with other doctors/oncologists in Portland and around the country to come up with a new chemo protocol for Maggie. Unfortunately, Maggie has seen most of the intensive chemotherapy medications that are out there, so doctors are not positive what to give her next. We have much confidence in Dr. Norwood and Dr. Olsen, and we know they will come up with the right plan for our little girl.
At this time, Maggie's bone marrow transplant is postponed. She'll need to get back in remission before she can transfer to Doernbecher for the transplant.
I saw her tonight though, and she was looking and sounding much better than earlier in the week. She was sitting up, smiling, talking and even took a bite or two of food. She ate 56 Cheerios today with Angelina! She let Beth and I take her for a walk (she rides in the stroller), but we headed down to the cafe where she picked out strawberries. She never ate the strawberries, but it was so good to have her out of the room. Nurse Shari was with her today, and Nurse Quoc is with her tonight, so she's a pretty happy girl. She was asking for tummy medicine and sleepy medicine when I left tonight. I love the fact that she knows what to ask for, and even by name. Earlier today she asked for Mylicon and Prilosec. Wow! What an amazing girl.
I told Beth today that I know God will answer our prayers and maybe I just need to talk louder to him. So, tonight when I say more prayers, I'm going to really loud and really clear. Join me!
Saturday, June 18, 2005
A Mixed Bag of Results
Dr. Norwood was in this morning to announce that Maggie's ANC is over 1000! This is a big improvement of her healthy, fighter cells. He also said there were some blasts in her test last Tuesday. The blasts could be premature cells that are not formed yet, or they could be new leukemia cells. They will conduct a bone marrow test this Tuesday morning, which should help determine just what the blasts are. Keep praying for good cells.
Doctors also stopped her anti-fungal antibiotics, and they're switching up her other antibiotics. She started a form of chest physical therapy to help loosen up the material that is gathered at the bottom of her lungs. And it's working! She's had three or four sessions now, and I understand her lungs are sounding better with every treatment. She even asked for some breakfast this morning.
Teacher Sami came down yesterday to read books with Maggie, who was all smiles. And then Grandma Sharon gave Mom and Dad a break and had a sleep over with Maggie. All went well, and Mom and Dad both got a good night sleep at home with Angie!
Friday, June 15, 2005
There's not much new to report today. The lab tests show there is not a fungal infection in Maggie's lungs, so doctors are not really sure what is causing the lung problems. Her sinus infection is viral, and it is starting to clear up. That's good news! It's been a long week for Maggie. Her breathing remains to be labored, and she's feeling tired and achy. She's taking a number of different medications that require constant monitoring of her heart and vital signs, and she's wanting to sleep most of the time.
Maggie hasn't wanted to play or do much of anything this week. But Beth tells me that last night she and Nurse Quoc took Maggie for a stroll around the hospital. She visited the big fish tank downstairs, and even cruised through the infant/toddler section looking for babies. Beth said it was nice to be out of the room even if Maggie was just in her stroller.
Tuesday, June 14, 2005
Tough As Nails
Our little angel is tough as nails, as tough as they come, or so a nurse told us today. This morning Maggie had three procedures: a lung biopsy, sinus drain and bone marrow aspiration (test). The nurses couldn't believe Maggie's threshold for pain, and that she wasn't requesting pain medication. Preliminary results look like her sinus infection is viral, and it will just need to run it's course. It doesn't look like she has a fungal infection in the lungs, however, they do have cultures still growing in the lab. This leaves a question mark about what is causing the problem in the lungs however.
After several hours under general anthesia, Maggie returned to her room in the early afternoon. Beth reports she was pretty uncomfortable and medicated most of the afternoon. But by this evening she was perking up, playing with Nurse Quoc and requesting french fries. Doctors left a small tube in her chest for drainage, and if all goes well they will be removing that tomorrow.
Monday, June 13, 2005
A Busy Weekend Leads To A Busy Day
Maggie perked back up a bit on Saturday, just in time for some visitors. Aunt Becky and Grandma Sharon came to crochet and play. Then Aunt Kimmy and Ali came for a sleep over! Maggie's heart rate and respirations continued to be quite high, but she was awake until 10:30 reading books and drawing pictures with Ali. The infection is wreaking havoc on her body. She struggles with a fever, sinus drainage, vomiting, diarrhea, high pulse and general discomfort.
On Sunday more visitors came to cheer Maggie up: Grandpa Bob & Grandma Sara, Aunt Terri, Aunt Tammy & Uncle Scott and Papa Williams. By late afternoon, doctors were not liking her oxygen saturation levels, which means even with all the hard work she was doing to breathe, she wasn't getting as much oxygen absorbed into her system as they would have liked. Small tubes were laid inside her nose to supply her with extra oxygen. She was annoyed with it at first, but Beth says she quickly forgot it was there and went on about her day.
She continued with the oxygen today. She had a CT-Scan to check out her lungs, which are worse than last Monday. The right lung is the same, but the left lung looks worse. Her sinuses are also still yucky too. So tomorrow morning, Maggie will get an early start with a lung biopsy, then an ENT will do a surgical draining of her sinus passage, and Dr. Norwood will do a bone marrow test. The biopsy and sinus samples will go straight to the lab with the infectious disease team. Doctors believe Maggie is fighting a fungal infection. If they can determine exactly it's cause, they will be able to hit it with the most appropriate antibiotic. They are also talking about doing some more shots that help produce more healthy white cells (I can't remember the technical term).
So the good news is that by the end of tomorrow, we should have a diagnosis for Maggie's infection, and then the fight is on! Doctors are hopeful that Maggie will get to transfer to Doernbecher on July 5th, with her bone marrow transplant tentatively scheduled for a week after that. Please pray for a treatable, curable, easy-to-fix infection so our little girl can get to her transplant soon!
Friday, June 10, 2005
Maggie continues to fight off an infection. She's been pretty tired the last couple days, sleeping most of the day and being awake at night. She is currently taking a combination of six antibiotics in her fight against infection. On Thursday evening she had her procedure where a sample was taken from her lungs. The procedure went well, and results should be available in a few days. Beth reports that Maggie's bottom is doing better.
Her ANC has dipped a bit, but her cancer remains in remission. Beth said she seems bored and would rather sleep than play the last few days. We're hoping that when her temperature drops, and her healthy cells numbers come back up, she'll have more energy for painting, walking and playing.
Tuesday, June 7, 2005
What an incredible journey this is. As I sit here typing in today's message, this beautiful family picture is staring back at me. What an amazing family the Williams are - Beth, Rick, Maggie and Angelina. What strength, courage and love they have shown us all in these last few months. The smiles on these four faces is what's it's all about.
Today was another bittersweet day for this family. Maggie's lab and CT-Scan results were not so good. She has developed a sinus infection and some form of lung disease/infection. (Doctors use the word disease when they do not know the specific cause of infection). Maggie's lungs are showing some collapsed parts, as well as material described as the texture of shattered glass. Tomorrow she'll have a day of rest, then on Thursday she'll have a bronchial-scope where they pull a sample of material from her lung through a tube in her nose. This will give the lab a chance to culture a sample and determine the cause of infection. Doctors never know how long a culture growth will take, so if necessary, she would have a surgical procedure on Tuesday to biopsy her lung. In this procedure, they would need to make an incision in her chest to get into her lungs, and they would actually cut into her lung. This is a medium risk procedure ("not as intense as a bone marrow transplant, not as simple a tonsillectomy," says Dr. Olson). On the positive side, her cancer remains in remission!
The chemical burn on Maggie's bottom is getting better. They are doing a special cleansing routine every hour, and Beth reports it is helping.
These infections have caused the transplant and oncology teams to postpone her bone marrow transplant for a few weeks. Doctors will continue to conduct weekly bone marrow tests but she should not need any regular chemotherapy unless leukemia cells return. Even then, our understanding is that it would be lower-dose chemo medications.
Now for the sweet part of the Williams' day. Little miss Angelina celebrated her 1st birthday today! There was a small party in a hospital conference room, and Angelina enjoyed her first slice of cake and ice cream. She went right for it, sticking her fists into the frosting. Maggie joined us, and she enjoyed watching the unwrapping of presents and testing out Angelina's new toys. It wasn't what Beth had really wanted for Angelina's first birthday, but we were all together and it was great fun. Angelina seemed to really enjoy herself. Maggie wore a birthday hat and lei, she even ate some ice cream and cake too.
Monday, June 6, 2005
Friday afternoon Maggie's bone marrow test results came back with good results. Her cancer remains gone, and her ANC (good cell count) was still in the 400's. This was great news! Then the weekend brought another bump in the road for Maggie and her family. As they checked in for what was scheduled to be a 3 to 4 day visit, they were all feeling a bit sad about leaving their friends at Emanuel who have become like family. But over the weekend, Maggie developed a bacteria staff infection, and her stay at Emanuel has been lengthened. It started on Friday with what was initially thought to be a very severe diaper rash. After further investigation, it is actually a chemical burn from the chemotherapy. Her entire bottom is purple with welts and her diaper needs to be changed every hour. She's been pretty good about it, but everyone is feeling a bit sleep deprived with the hourly changes.
The infection has brought a fever with it and lots of medications, so doctors decided to keep Maggie at Emanuel. It sounds like there has been a lot of activity in her room with the diaper changes and meds. Beth said some nights she's buzzing for Nurse Quoc to come about five seconds after he leaves. Maggie was originally scheduled to have a pretty low-key week at home with some tests at OHSU in preparation for checking in next Monday. The team at OHSU is working closely with the team at Emanuel so that many of the necessary tests can still happen this week. It's unclear of what the implications of this current infection are in relation to the transplant. I'm sure news will be developing about that in the coming days.
Tomorrow is Angelina's first birthday! The staff at Emanuel have helped Beth arrange for a conference room space so some family can come to celebrate the big day, and Maggie will get to be a part of it too!
Watch the web site this week as we hope to add some new photos and a photo gallery of Maggie and her family.
Thursday, June 2, 2005
Maggie got up bright and early this morning and headed back up to Emanuel with her mommy. She had a bone marrow test, spinal tap and other procedures in the day treatment center before checking back into her hospital room. She was very excited to be back in "her" room after getting a different room last week. Many of her nurse friends were working today, so there was lots of visiting, playing and catching up with her best buddies.
Maggie's hospital stay has been so long, that she has actually adapted to her hospital routine, and I think she prefers it. She was much more talkative today than she has been the last few days. She was able to spend time with her Child Life Specialist, she did painting, played guitar with the Music Therapist, played DJ with her cd player, had many laughs with her nurses who helped build her princess canopy and tent. Hard to believe that a hospital room can be more entertaining than home, but it is (at least today).
On the medical front, she's responding well to treatment this week. Her ANC count is higher again, which is great! She's almost done with this round of steroids too. The steroids cause her to crave salty foods, and all she has wanted this week is cheese pizza, hot dogs and pickles. Beth said yesterday morning Maggie sat up in bed at 7:30 and demanded a hot dog with mustard, relish and a pickle. When Beth reminded her that it was only 7:30 in the morning, Maggie repeated her order for a hot dog with mustard, relish and a pickle.
Beth said it's very bittersweet being at Emanuel this time. If Maggie's progress continues, this should be her last in-patient stay at Emanuel. Next week she will be doing all of her transplant prep at Doernbecher before checking in. Once she's at Doernbecher, the transplant team will manage her care until 100 days post transplant. And although she'll return to her team at Emanuel, we're all hopeful that she will only be a day-treatment patient when she returns. Beth, Rick and Maggie have made countless friends during their time at Emanuel. Beth has formed friendships that I know will last well past Maggie's illness. The nurses have become like family, and we all look forward to the shift changes each day because we know we'll get to see another friend. The care and love of this nursing staff has moved Beth so much, that she is considering nursing school after Maggie's recovery. Wow! So, it is bittersweet. We're so excited about Maggie's chance for a cure, but it will be sad to say goodbye to our extended family who have become such an integral part of our days.
Wednesday, June 1, 2005
Maggie has been home for several nights now. She had a bit of an appetite yesterday and today. She sat up in bed yesterday morning and requested a baked potato with butter and sour cream. Today it was a cheese pizza that she just had to have while they were at OHSU. So they ventured from building to building on the large campus in search of pizza. Beth says they found pizza, but Maggie only ate three bites.
Today was a busy day for Maggie. She and Beth spent 7 1/2 hours up at OHSU doing tests and exams to start the preparation for her transplant. Beth said Maggie was the perfect angel, going in and out of labs, always smiling and talking to the doctors and technicians. She had more tests today than some of us will ever have: a kidney function test, blood work, EKG, echocardiogram, CT-scan, X-rays and a consultation with the radiologist. Beth says the radiation treatments will be very intense as they are long procedures and require Maggie to be sedated.
Tomorrow morning Maggie returns to Emanuel for this week's chemotherapy. She'll start the morning with blood/platelet transfusions, then it's off for a bone marrow test, spinal tap and chemotherapy medications. She's expected to stay in the hospital for a few days.
Rumor has it Maggie was requesting to shave her head tonight. Now, I haven't heard the full story yet, but I understand that she's getting frustrated with the messy hair that keeps getting tangled, and she's ready to be done with it. Mom and Dad realize that with more chemo and radiation, the hair is going to come out anyway. So, maybe tomorrow there will be a new photo of our beautiful, bald little angel.
Sunday, May 29, 2005
I've decided that Sundays are a good day. Maggie is on her way home this afternoon to sleep in her own bed for the next few nights (just like last Sunday)! She's completed this series of chemo which has dropped her ANC (good count) again, but she's well enough to be at home! Yesterday she wasn't sure if she wanted to head home. I think she likes getting spoiled at the hospital where she is treated like a queen. But when I talked to her this morning, she was excited about being at home in her princess sleeping bag lounging around again.
There have been lots of visitors this weekend: Aunt Lynette and Uncle Ronnie came with Grandma Margaret from Tacoma, Papa Potato and Grandma Sara came from Tacoma too. Aunt Terri came and spent the night with Angelina on Saturday night and gave Grandma Sharon a night in her own bed. Maggie is still struggling with stomach/bowel problems as her digestive tract learns to work again. She's taking Mylanta, Mylicon drops and other tummy-medicines to help with the stomach cramping and pain. Doctors hope it will work itself out (literally!).
Her appetite has returned, so she'll be receiving her nutrition (TPN) IV at home, and Beth and Rick will be administering it. Thank you home health care! It looks like it's going to be a busy week as preparation for her transplant gets started at OHSU, but she'll be tucked in her own bed at home at least until Thursday evening.
Friday, May 27, 2005
Wow! Maggie's bone marrow transplant is scheduled. Beth spoke with the Transplant Coordinator at OHSU this morning and received the schedule of events leading up to Maggie's big day. Sometimes I think Beth and Rick need a personal assistant just to keep their calendar for them. Maggie is currently at Emanuel with her chemotherapy protocol running. It's expected that she'll go home on Sunday or Monday if there are no complications or setbacks. She moved into a new room when she was re-admitted yesterday. No more special filtration room with the door always closed! Beth and Aunt Becky brought a bag of Maggie's things to decorate the room as soon as they arrived. I haven't seen it yet, but I'm sure it's magical just as before. Maggie continues to be tired and grumpy, but really, who wouldn't be? I remind Beth everyday that a three-year-old doesn't need to be sick to have an attitude, at least Maggie has an excuse.
The transplant prep begins on Tuesday with a radiation consultation at OHSU with Beth, Rick and Maggie May. For those of you who don't live in our area, OHSU is Oregon Health Sciences University, and they have their own children's hospital, Doernbecher. On June 1st, it's a day of testing at OHSU: GFR (kidney function test), Chest X-Ray, EKG and Echocardiogram. On June 2nd, Maggie returns to Emanuel for three to four days of her ongoing chemotherapy. With this protocol, she should be in the hospital until the 5th or 6th. On the 6th it's back to OHSU for a bone marrow test. The family gets a break on the 7th, and hopefully, they'll get to celebrate Angelina's 1st Birthday! On the 8th, there's a full body CT-scan at OHSU. On the 9th, the family meets with the transplant doctor, Dr. Kurre. Then lucky Maggie, she gets a few days off! Ideally these will all be days at home and not the hospital.
On June 13th, Maggie will be admitted to Doernbecher. She will undergo three days of radiation treatment and then two days of very high dose chemotherapy. On Sunday the 19th, she will get one day of rest before her transplant on the 20th.
As we know, this journey is always changing and evolving. This schedule of events is based on Maggie's current health conditions. Should her cancer cells come back, her healthy cell count come down or an infection develop, things will change. The transplant coordinator said there is no way of knowing how long Maggie's stay will be at Doernbecher. It all depends on how she responds to the transplant, if she develops any infections, etc. Some children are there for a couple weeks some with complications are there for a few months. So, again we pray for the best but prepare for the worst.
We're all excited about the transplant coming together so quickly. We don't know much about her marrow match other than he's a 22 year old man who lives in the continental US which helps facilitate the hospital's ability to pull this together so quickly. The Maggie May Golf Tournament is scheduled for June 20th as well, and we're happy about the prospect of coming together to celebrate Maggie on such an important day.
Love to you all on this holiday weekend.
Thursday, May 26, 2005
Maggie checked back into Emanuel today as was planned. She had a bone marrow test and spinal tap this morning before getting checked back into a "suite" at Le Emanuel Hospital Hotel. Beth said it was strange to be back but not going to Maggie's old room. Maggie's scheduled to stay in the hospital for 3-4 days for chemotherapy and observation. Doctors hope she'll be able to go home for a couple days before her next spinal tap and chemotherapy next Thursday morning.
There were some complications with Maggie's move to home this week and her home health care/nutrition IV. Dr. Norwood said she was a bit dehydrated this morning and had lost some weight, but they'll get things turned out with this hospital stay. Maggie hasn't had much of an appetite or energy level with this trip home, but I understand that she was happy to be at her own house, with her own pillow, her special sleeping bag, her family and her toys!
There should be some test results on her cancer counts/healthy cell count in the next couple days. With the holiday weekend, some labs may not be running regular hours. As soon as we have some results, we'll get them posted for you.
I haven't heard yet how she handled the big American Idol upset last night, with her favorite Bo Bice, taking second. I know that her mommy was hoping to watch it on TV with her live last night, so I'm sure it was a fun evening.
Tuesday, May 24, 2005
Maggie has spent two nights at home now. She is really enjoying her princess bed and her new sleeping bag, which has taken over the couch in the living room. She continues to be tired and complain of a tummy ache, so not much activity beyond the couch and tv. She spent most of today at the oncology clinic. Doctors did an ultrasound, chest x-ray, stomach x-ray and blood work. Her x-rays were clear, and her ultrasound showed that her enlarged kidney was smaller than last week. Doctors believe her tummy ache is from lack of eating for several days, and her digestive track going back to work. There have been some headaches working out all of her medications from home, but Beth and the oncology team seem to have worked it out today. Because she's not eating, it will be necessary to use TPN again for her nourishment, which runs through her buddy 18 hours a day. Beth will be able to administer it from home, but doctors did keep Maggie at the hospital long enough today to pump her full of fluid before sending her home.
The plan is to return to the hospital on Thursday morning for all of her tests and chemo treatments. At that time, she will be admitted to the hospital for what is expected to be three to four days. Because her tummy was hurting today and her energy level has been so low, the doctors asked Maggie today if she would like to stay at the hospital. Of course, she said no! So she's home tonight with Mommy, Daddy, Grandma and Angelina.
It's a bittersweet week this week as Maggie is finally home. It's so incredible to see her in her own space with all of her family. Yet, her classmates at preschool graduate this week, and they're missing our little Maggie. This journey is so intense, and it seems like it's been such a long time since Maggie was singing and dancing at preschool. Her friends talk about her everyday and have even been singing her song at school. I understand that her teacher is hoping to make special visit to her home tomorrow after graduation to celebrate the school year with Maggie. And I think I speak for all of us, when I say I can't wait for Maggie be cured of cancer and back at school full time enjoying being three. Make God continue to answer our prayers.
Sunday, May 22, 2005
MAGGIE'S HOME! After 66 nights at Le Emanuel Hotel, Maggie is back at her own house for what is hopefully several nights. Beth and Rick took down all of the room decorations, packed all of the toys and books, and several wagon loads later, they headed home, where baby Angelina was waiting for them! Beth said you never would imagine just how much stuff you can cram into one little hospital room.
Maggie's still not feeling that great, she's pretty tired and dealing with nausea and diarrhea, but she's dealing with it from the comfort of her couch with her on-demand remote. Beth and Rick had some lessons yesterday on administering shots, Maggie is learning to master oral medications, and it sounds like the home-health nurse will be paying some visits to help with TPN since she's not eating much. If all goes well, Maggie will visit her doctors' clinic on Thursday morning. It's unclear whether she'll be able to head back home on Thursday after tests and treatment, or is she'll be admitted for a few days.
Saturday, May 21, 2005
We have the most amazing news. Our Maggie May is in remission!!! Dr. Olson was in this morning to announce that Maggie is in full remission, which means she has no cancer blasts. And her ANC, which is her healthy count, is up to 590! I think these numbers are even better than what the doctors were hoping for.
Remission also means that Maggie gets to come home tomorrow and stay! She will be released in the morning, and if all goes well she will get to stay at home, in her own bed, with both of her parents and precious little Angelina until Thursday morning. The nursing staff will be training Beth and Rick today on administering some of her medications that are given through shots, but the rest of her medication will be oral, so there won't be any need for her IV to be used or for a home health nurse to come visit her. They believe that Maggie is eating enough now that she won't even need her TPN (nutrition). She will return to the hospital on Thursday for several days of chemotherapy. She'll have a bone marrow test, spinal tap, 24 hour dose of chemo and 2-3 days of other medications. I believe if that round goes well, she may get another home pass.
As you can imagine, there have been many tears this morning. We have been praying for 66 days for these results, and it is so overwhelming to hear the word remission. I haven't talked to Maggie this morning, but I'm assuming she's pretty darn happy. Her infection seems to be gone, her antibiotic medicines are done, and she gets to sleep in her princess bed tomorrow night.
If she continues to make progress like this, her transplant in mid June is looking more and more feasible. Please keep the prayers coming, our miracle is so close.
Thursday, May 19, 2005
Today is Day 64 on this journey, and we have a match!!! So let's focus on the positive for a moment. Our little angel has a perfect bone-marrow match. He is a young, 22-year-old man who lives somewhere in the United States. He is of North American/European descent, and he matches 12 of 12 criteria for Maggie. He has completed his secondary testing, and the tentative dates for his portion of the bone marrow transplant are June 17, 21 or 22. He will be able to do his procedure at a donation center near his home, and a transplant team member from OHSU will travel to him to secure his bone marrow and transport it back to Oregon for Maggie. The transplant team has also identified two other 12 of 12 matches, and a perfect cord blood match, should we need more options. Yippee!
On the good news front, Maggie had her Day 15 bone marrow test for this round of chemotherapy. The preliminary results are showing no cancer cells or good cells. Doctors say this is what they had hoped for. Although we need her good cell (ANC) count to come up, it was expected to do so yet. If final test results tomorrow show no cancer cells, her protocol will continue for another 2 weeks or so, and it's possible she would transfer to OHSU at that time. Once she arrives at OHSU, she'll have 6-7 days of very intensive treatment before the transplant. This will include two days of very intensive, continual chemotherapy and three to four days of total body radiation.
But as we have learned, this journey is a roller coaster ride, and today also brought some twists and turns. Maggie's tummy ache developed into something more than just a tummy ache. She started having some severe diarrhea late yesterday that led to testing for what doctors believe is a bladder and/or urinary tract infection. She also had an ultrasound this morning, where it was determined that she has one enlarged kidney, and they are doing tests for a kidney infection. Since her body is fighting off these bacterias, she had a bout of high fevers and very high pulse in the afternoon. For several hours she was placed back on a heart monitor. I understand that by bedtime tonight, her fever was lowering, as was her pulse. Beth said Maggie slept most of the day.
And with all of these symptoms going on, our little girl continued to put on her brave face as she always does. Her procedure and medication list was quite long today. She had the ultrasound, a bone marrow test, a spinal tap (chemo directly into the spine), two chemo shots that are placed in the thigh muscles, chemo through her IV, and if my count is correct a combination of 5-6 antibiotics. This would be in addition to her fluids, nutrition, tylenol, existing antibiotics, ulcer medication... The amazing thing is that somehow Beth keeps all of this straight. She knows what medications are due at what times, and she give any nurse a run for her money.
I have to take just a moment to thank the staff at Legacy Emanuel Children's Hospital who have become family members to all of our family. The doctors continue to work around the clock when necessary to provide Maggie with the absolute best care. The nurses have become our friends, and not only do they give Maggie the best care, they take care of Beth and Rick as well. Whether it's a glass of water, a smile or just a shoulder to rest on, they provide so much more than medical care. Their strength, training and love get us through days like today.
Wednesday, May 18, 2005
Maggie was able to head home this morning on another day pass. It was a quiet day at home, as her energy level was low, and she was complaining of a tummyache. Our guess is that after not eating for two months, her stomach just doesn't know what to do yet.
Results are back from her lengthy fungal testing, and the results were negative, which is great! Maggie is scheduled for her Day 15 bone marrow test tomorrow morning, which will help determine if her cancer has gone into remission or not. Today she developed some severe diarrhea along with her stomach ache, so her doctor is doing an ultrasound in the morning as well as tests on samples from her diapers. That will happen before the bone marrow test.
Beth and Rick were both able to stay home last night, and I heard they enjoyed some "normal" time. They had dinner at a restaurant together with Angelina and did some birthday shopping for Angelina's first birthday which is approaching quickly. Grandma Sharon spent the night with Maggie May, and they got to watch American Idol. Maggie is voting for Bo all the way!
Be sure to check out the Get Involved page. Friends from Rick's work, Vencore Solutions, are hosting a Benefit Golf Tournament that sounds like a lot of fun. You don't even have to be a golfer to participate!
Tuesday, May 17, 2005
Maggie has bounced back from her weekend fever! After a weekend with lots of fun visitors, she was given a day pass to play at home yesterday and today! With this new protocol she does not have to be hooked up to her IV's as long, so they are able to coordinate all of her medicines, nutrition, etc. and give her 4-5 hour breaks during the day.
Yesterday, her friend Brenna and cousin Katy come to join her at home. There was lots of princess play, and even some fighting! We love when Maggie gets to act like a 3-year-old. No princess party would be complete without some fingernail painting. Maggie got her nails painted for the very first time! Beth reports that the steroid medication makes her Maggie very hungry, so she was opening the fridge every 15 minutes asking for more food! What a change from a couple weeks ago.
When Maggie headed home on her day pass today, she made Beth stop at McDonald's for hash browns and mustard. I heard that she announced to every in the hospital halls that she was having hash browns and mustard! She insisted that cousin Katy come back over and bring her play make-up set. So after lots of play and lots of snacks (hash browns, bananas, tortilla chips, fruit snacks and more), she crawled up in her princess sleeping bag for a nap.
The day passes have been great for Beth, Rick and Angelina too. It's great to see them spending time together as a family again. Angelina just lights up when Maggie is around. Maggie is scheduled for her next bone marrow test on Thursday, so hopefully, there will be some results on Friday about how this protocol is working. It's expected that doctors will tweak the medications this weekend, and there has been some talk of the transplant happening in June. This is all tentative, and subject to change, but we continue to pray for the earliest transplant possible, so we can get Maggie back home full-time soon.
Saturday, May 14, 2005
Friday was another good day. Maggie was given another day pass, and she got to leave the hospital for a couple hours. First stop, Albertson's. Grocery shopping is Maggie's favorite thing, so Beth just had to ask the doctor if they could stop by the store. Maggie enjoyed every minute of it, picking out artichokes to eat at home with mayonnaise.
She played a bit with cousin Ali and Lucas, but was pretty tired on this home visit. She did eat almost the entire artichoke though. She kept looking at Grandma Sharon and demanding, "Grandma, Artichoke!" They just weren't cooking fast enough.
Saturday morning brought a new fever, which doctors expected would come back with more chemotherapy. However, they had been hoping for more day passes before the fever came back. Maggie was pretty tired today, with a low fever and high pulse during most of the day. But feeling a little blue doesn't keep the visitors away! There were lots of out-of-town visitors with Uncle Rod from the gorge area, Aunt Tammy and Papa from southwest Washington, cousin Brenda and Tim from Tacoma and Mommy's friend Michelle from Eugene. I hear that was even some singing and karaoke for Uncle Rod!
Beth and Rick continue to take turns sleeping at the hospital on the weekend. Beth came home on Friday night and got a chance to play with Angelina, and Rick will stay with Maggie on Sunday night so Beth can attend the Campaign Kick Off meeting.
The Beaverton Valley Times did a great cover story about Maggie in Thursday's edition. If you're not in the Beaverton area, you can view the article at www.beavertonvalleytimes.com.
Thursday, May 12, 2005
What a perfect day! It was so perfectly fitting that today, eight weeks after this journey began, Maggie got a day-pass to visit her own home! She got to see her new princess room, she played with all of her favorite toys (I hear it was the toy vacuum she was most excited to play with), she ate her favorite foods (mac & cheese, olives, chef salad, milk), played Candyland with Daddy and even went pee on her little potty! This is her first pee on a toilet since March 18th. So, it was a very good day indeed. There are new photos so you can see all of the fun she had.
Beth reports that when it was time to go back to the hospital, Maggie grabbed her shoes and coat and completely cooperated. It seems that she's use to her new routine, and luckily her young age helps her adapt to life's changes. Grandma Sharon, who stayed at the house with Angelina, cried as soon as Maggie left, but I understand Maggie was quite the trooper with no tears. Angelina, who every day reminds me more and more of Maggie, found the t-shirt Maggie had worn home, and curled up with it to take a nap after she left. :) When I asked Beth what she thought about the day, she could only say that it was GREAT!
On the medical front, Beth received a message today from OHSU that they have found a perfect bone-marrow match!! Now, we just have to get Maggie healthy and ready for transplant. Before she came home this afternoon, she did have a bone marrow test (results should follow in a day or two) and a spinal tap (where chemo is placed directly into the spine). Her ANC (good counts) have come back down, which was expected. With the low ANC again, her risk of infection begins to increase. At this point an infection wouldn't be something transmitted by a visitor, it's more likely to be something that already lives in our bodies but that Maggie can't fight off without a healthy immune system.
This is day 8 of Maggie's 48 day round of chemo. There will be another bone marrow test next week, which should indicate to doctors whether or not this chemo protocol is working or not. If all goes well, the chemo will be working, Maggie will complete the 48 day round, and then she would transport to OHSU for the bone marrow transplant.
Wednesday, May 11, 2005
It was another great day for Miss Maggie May. Doctors test her blood daily for her cell counts. Yesterday morning her ANC (good cells) were 130. She needs the count to be around 700 to be healthy enough for transplant. Beth reports that her ANC count this morning was 440! We think that is the highest count she has had since checking in. Woo hoo!
Tomorrow marks eight weeks of hospital life for Maggie, Beth and Rick. If her ANC count continues to increase, it looks like Maggie may get another day trip or two! If all goes well, she may actually spend an afternoon at home, checking out her new Princess room and playing with her own toys. We'll be sure to keep you all posted and take lots of photos if it happens.
Thank you again for your continued prayers. I'm telling you that they are working!
Tuesday, May 10, 2005
What an awesome day! Maggie's good cell count was above 100 this morning, so Dr. Chu let her head out on a day pass. Maggie and mommy headed to Aunt Becky's house for a play date with Katy and Angelina. Daddy, Grandma Sharon, Aunt Kimmy and Lucas came too. It was great!
Maggie was so happy to see everyone. She ran, jumped and even skipped while there. She played dress up with Katy, helped feed Angelina, encouraged Angelina to walk and ate McDonald's! It was the best McDonald's meal I think I've ever had. She ate bits of a cheeseburger, chicken nugget, french fries, chocolate milk and apple juice. It was unbelievable! We couldn't believe the amount of energy she had. She actually ran across the room to jump into Grandma Sharon's arms when she saw her. Of course, there was singing and dancing, a bit of princess make up and even a little bit of "Lazy Town" tv.
By the end of her visit, she was ready to go though. After a couple hours, she was tired and ready for a slower pace.
An added bonus was a photographer from the Beaverton Valley Times who was able to photograph Maggie at her best. Watch for a feature about Maggie in this week's issue. And be sure to check out the new photos we posted.
Monday, May 9, 2005
Whew... it seems like the behavior side-effects of the steroid medication have passed! Beth and Rick report that after a pretty crazy day/day and a half, Maggie is acting like herself again. We believe the irritability was so bad due to the high dosage of medication over a short period of time, so things are looking up.
Maggie was able to visit with lots of family over Mother's Day weekend. She saw Nana Williams, Grandma Sharon and even Great Grandma Borchardt. Plus she saw aunts, uncles and cousins. Her favorite visitor may have been Angelina though. I hear she really wanted to hug, squeeze and cuddle Angelina, who was distracted by all the fun things to play with in Maggie's room.
This round of chemo seems to be going well. Although it's a mix of six or seven medications (some IV, some shots in her thigh muscle, some oral), the medicines are less toxic and have fewer side effects that her previous rounds. So over the weekend there was no vomiting! Maggie actually asked to use the toilet yesterday, which was the first time in almost 8 weeks! She hadn't even seen the bathroom in her hospital room. (So much for potty training)!
Doctors say that Maggie and her test results so far are better than they hoped for, so keep sending your prayers.
Saturday, May 7, 2005
Things have got a bit interesting the last day or two with Maggie. She started her new protocol on Thursday. This round includes a steroid that can cause irritability, strange behavior, etc. Beth reports that things all changed on Friday morning. Maggie went from her usual, quiet, loving self to a kicking, screaming, crying, temper tantrum throwing girl. It sounds like it was a very long day. Maggie will be fine, then have an outburst with crying, arguing and fighting, then go back to herself. This medication runs for 21 days, so Beth and Rick are already counting off the days on a calendar until their serene little girl returns.
The good news is that doctors are optimistic about this protocol. They have talked with some doctors from other hospitals around the country to develop this round. One hospital has used this mix of six medications to treat infants with the same disease as Maggie, so we're all very hopeful. If her cancer responds to this treatment, the goal would be 48 days of treatment, which would bring remission and then a transfer to OHSU for a bone marrow transplant. Of course, so far not much as gone as planned, so we're all prepared for the daily changes that come with fighting this disease.
Wednesday, May 4, 2005
There were some minor changes to Maggie's treatment plan today. Doctors have decided to go with a more aggressive form of ALL treatment. This protocol is similar to what an ALL patient in relapse would get. One of the medications can have mess with potassium levels and cause damage to the heart, so she'll be on a heart monitor to keep track of that. Today they did an EKG to have a baseline record of her heart.
She'll also be taking one steroid as part of this five-medication treatment. We understand there can be some side-effects from it like overeating, bloating, irritability and behavior issues, but since she hasn't been eating, we're thinking having an appetite might be a good thing.
After further review of her case and meeting with the infectious disease team, her doctors today determined that they will not be letting her go home after all. They feel like there is not enough time to get her healthy cell count up before they hit her again with chemo, so they're not going to take any chances of infection. Beth and Rick seem to be comfortable with this decision, as they don't want to take any risks either.
Tomorrow is Day 50 on this journey. The last couple days, Maggie has had energy, laughs, smiles, walks and songs. I was lucky enough to spend the night with her last night, and she had a case of the giggles. Her nurse and I hung sheets from the bed poles and created a giant tent out of her bed. We turned down the lights, except her little decorative Christmas type lights. It was great! I felt like a kid again. She had another good day today. She played dress-up with Aunt Becky and Grandma Lois. We got a great picture of the three girls with princess wigs on.
Maggie will start the morning early tomorrow with her bone marrow test and spinal tap. Her new chemo treatment will start later in the day. We're all just trying to take it all in and absorb all of her good days before the hard ones come back.
Tuesday, May 3, 2005
Maggie is enjoying a break between rounds of chemotherapy. Yesterday and today, she's been more active with lots of singing and playing. Doctors are trying to give her a body a chance to rest and recuperate before they start the next round.
Lab results are showing more ALL than AML cells right now, so the oncologists have decided to try a different group of chemo drugs this new round. On Thursday morning, Maggie will have a spinal tap and bone marrow test. Doctors will take a bone marrow sample to get an accurate cell count, and they will also administer a chemo drug into her spinal column. On Thursday evening, they will start the new drugs. It's a combination of five different drugs which is frequently used on ALL patients with good success. Because Maggie is still fighting two kinds of cancer, doctors will continue to try different drug mixes until they find the perfect cocktail for her. Maggie is definitely not a text-book case of childhood leukemia.
The new chemo treatment will run for four weeks if it is successful. Doctors will conduct more bone marrow tests at day 8, 15 and 22. If this protocol works, it would be followed by a new, very strong chemo that should force a short remission, allowing Maggie to go to transplant.
Beth received some good news from OHSU today who is conducting the donor search. Two candidates are doing additional testing this week for bone marrow, and one cord blood match is also in the final review process. We should know by early next week if these matches are a perfect fit.
The other battle in Maggie's body right now is an infection that doctors believe is fungal. Although her fever is down, and they're still waiting for some test results, doctors have been proactive in staying ahead of fungal infections. The infectious disease team is changing Maggie's main antibiotic to a stronger one today, but it is suppose to be less toxic and harmful to the liver. This round of medication would run for one month. Our understanding is that a patient can be on an anti-fungal medication when they go to transplant, but they can't have an infection, so doctors are trying very hard to stay ahead of the game.
There is a chance that if Maggie responds well to the new chemo and new antibiotic, she may get to go home for a while. It's still unknown and not guaranteed, but many ALL patients do get to do their meds at home, so doctors are trying to be optimistic. She would go home with her IV/Buddy and would have to stay indoors, but a home-health nurse would train Beth and Rick to administer her medications. So, we're keeping our fingers crossed for just a short time of "normalcy" at home.
Sunday, May 1, 2005
Wow... you're not going to believe where I have been this afternoon. It's sunny and warm here in Portland. Maggie's doctor liked her good white blood cell count this morning, she liked that there was vomiting only once in 72 hours, and I think she couldn't resist that beautiful little smile. So, for the first time in 45 days, Maggie left the hospital!
The whole family ventured to Maggie's favorite spot, the Oregon Zoo. Mom and Dad set her up in a wagon, she wore real clothes (!), a hat, new sunglasses and little face mask. She was the tour guide, and the entourage followed. First stop, elephants of course! (There was a little detour by the sea lions who were getting fed). She stood at the indoor window to look at Rama, then Dad carried to the bag viewing area to see Packy. Then around to the front to see "the girls."
After the elephants, she decided she was hungry. So, it was off to the cafe. She normally only eats a bite or two a day (at best), but she ate tomato slices, pickles, some corn dog, a french fry or two, some animal crackers, milk and water! We couldn't believe it. I have lots of photos to prove it though.
Then it was off to her next favorite - the giraffes. Papa and Nana Williams met us there and our parade of love just grew. Of course a trip to the zoo would not be complete without alligators, meerkats, monkeys, polar bears and ice cream! Maggie even enjoyed some strawberry ice cream with dad.
It was a wonderful, beautiful, perfect day. We can't thank Dr. Olson enough for giving little Maggie some sunshine before this next round of chemo starts. Thank you to Beth and Rick for allowing all of us (and our cameras) to join in the fun.
Saturday, April 30, 2005
The preliminary results are in from Maggie's bone marrow test, and they were not what we were hoping for. She does have cancer "blasts" again, however, about half of her white blood cells are good ones. Doctors now wait for the pathology report that determines which type of cancer cells they're dealing with. Over the weekend, Maggie's three oncologists will do more research, talk to more specialists around the country and determine a treatment plan for going forward.
The best thing about our little angel Maggie is that nothing keeps her down. As mom and dad were talking with doctors last night, Maggie was signing and dancing! Then she got up early this morning and took Daddy on a walk to the fish tank. It's the weekend, which means more visitors, and that's just the way she likes it!
Friday, April 29, 2005
What a little trooper our Maggie May is. She had an early start this morning with four scheduled procedures in just over an hour!
A dermatologist came from Doerenbecher Hospital and took two skin samples to analyze her rash. He removed a small spot from behind her left knee and one from her right wrist. She has a couple stitches in each area. Then the "gastro" person came in to look at her stomach. He found that she did have an ulcer in her esophagus, down near her stomach. He said it looked like it was healing, so they will just continue with the Zantac in her TPN (nutrition tube) and another medication that coats her stomach.
The pulmonary specialist was able to get some good samples from her lungs quite easily. He is sending the samples to the lab for analysis. Dr. Olson conducted the bone marrow test, and she expects results in a day or two from that.
Mom reports that Maggie did well through all of it. Because of the length of the procedures and the movement necessary for each one, they did need to use a breathing tube with her sedation. It's not ideal, so we're hoping she tolerates it well.
We'll keep you all posted as results start to come in.
Thursday, April 28, 2005
There were some curves on the roller coaster ride today. Maggie woke up throwing up blood this morning, so it was a day full of doctors, meetings and discussions. Some test results came in, and some more tests were ordered. The good news is that the Ear, Nose, Throat doctors thinks her sinuses look good, so no new medicine there! The neurologist also liked her spinal MRI and said it was clean!
One curve is the possibility of a fungus infection. Doctors found some spots on her lung-scan, and they believe an infection is in her lungs. They also need to determine what is causing the vomiting blood. So, she has a very full schedule tomorrow morning down in the O.R. area. First, a pulmonary specialist, will use a tiny wire that goes in through her nose and down into her lungs to sample the material in her lungs. They will then culture that to determine what type of infection/fungus is hanging out there. Second, the oncologist will perform a bone-marrow test to determine her cancer cell counts. Her blood cultures indicate that there are 200 or so white-blood cells, but the bone marrow test is needed to determine if they are good or bad cells. We're expecting them to be good cells because bad cells ("blasts") tend to multiply much faster. Finally, a gastroentologist will use a small camera on a wire to go into Maggie's stomach to check it out. He is looking for stomach ulcers or lacerations that can be causing the vomiting. All in all, it will be a busy morning. On the positive side, she will only need to undergo general anthesia once to do all three procedures and her mom and dad will both be there with her.
Waiting for tests and results can feel like the roller coaster climbing up the steep slope, click, click, click.... The unknown can make you so anxious. We know that your continued prayers will protect Maggie and her parents during these twists and turns and will cushion them during the scary parts of the ride.
Wednesday, April 27, 2005
It was a sunny day in Portland today! Maggie took a long walk around the 3rd floor. She got a chance to see the sunshine, view the gardens, etc. It was great. She really likes to see the view of her painted windows from across the building. She definitely has the best decorated room in the entire hospital!
In addition to her walk with her friends from Child Life, she also had a chance to do some painting at an easel that they set up by the "zoo" for her. The zoo is a display of large, paper maiche animals that Maggie likes to visit and pet. It had been a couple days since her last walk I think, so everyone was happy to see her out and about. (We'll post photos later tonight).
After her busy morning, it was off for a CT-Scan of her sinuses, neck and stomach. They did find that there is some fluid in one sinus, so a Ear, Nose, Throat specialist will be in tomorrow to start treatment. Since she has stopped throwing up blood, doctors think they may be able to skip the stomach-camera test tomorrow. Yeah - one less test!
Since doctors still don't know the cause of her fever and other symptoms, they started another high-dose antibiotic tonight that targets fungus. There are lots of ailments associated with fungi, and doctors want to avoid that. This medication is a tricky one that can mess up potassium levels, which can be risky to the heart, so with this medication starting again, she'll be back on a heart monitor.
Beth and Rick are both home tonight for some rest and time with Angie. Grandma Sharon is with Maggie for her weekly slumber party. It's a good break for Beth (and Maggie). Beth tells me she cooked her own dinner, washed some dishes and was looking forward to more playtime with Angie before crawling into her own bed for a solid-night of sleep. (At the hospital, Maggie is usually up 4-8 times a night, plus the IV machine beeps throughout the night as the multiple medications run their course).
Maggie is still scheduled for her bone marrow test on Friday, so we should have some more news to report then.
Tuesday, April 26, 2005
Maggie's energy level has been better the last day or two. Yesterday morning she sat up first thing and demanded to go on a walk. (Hey,even when you're sick, you're entitled to act 3). So, Beth got dressed and they went for a walk. This afternoon she got to venture down to the special bathing room. Baths are a little tricky because her "buddy" can't get wet.
Today also brought a spinal MRI. The neurologists wanted to eliminate any neurological causes for the shaking/twitching. We haven't heard back yet, but they say that no news is good news.
There is still some concern about the nausea/diarrhea that she is having, so on Thursday they will be doing an endoscopic (?) procedure, which means they'll insert a little tiny camera into her tummy to check it out. Again, they're trying to determine the cause of her problems by eliminating things one at a time. Because she is not using her stomach to process food, her stomach lining can be deteriorating.
On Friday, she'll have another bone marrow test with an oncologist. This will be analyzing the number of good vs. bad cells she has. We're praying for lots of good cells. Doctors even hinted today that with enough good cells Maggie may be able to head home for a short visit. This was a very exciting thought for Beth and Rick. This Thursday also brings their stay at the hospital to six weeks. That's a long time for a little girl to live in a box. So keep sending your prayers.
All three of these tests this week require general anthesia, so paired with her other medicines, it's going to be a sleepy week.
We'll be sharing some news later this week about our upcoming meeting with COTA. This is the organization that is helping to coordinate our fundraising efforts for Maggie's family. If you would like to learn more about our fundraising efforts, please visit www.curemaggie.com or email kim at strelchun dot com. Thanks!
Sunday, April 24, 2005
The side effects of chemotherapy and a depleted immune system continue to plague our little Maggie May. This round of chemo and antibiotics have left her again with lots of nausea, diarrhea and rashes. Maggie started throwing up blood late in the week. Doctors thought she had developed stomach ulcers, which is common in patients who are not using their stomachs to process food. However, they currently think she has a tear in her esophagus. This could be caused by continual retching or from an oxygen-tube that was necessary with general anthesia on Tuesday.
Her rash appeared one night this week, and her whole body turned red. The rash has come and gone throughout the week. She did start to have some itching with this rash, which has led to a couple scratches on her skin. Because doctors don't want her scratching and cutting her skin, she has had a lot of Benadryl this week, which has meant lots of sleeping. One of the nausea medications also makes her sleepy,so there have been many days were she sleeps through most of the day mom says.
Neurologists continue to monitor her shakes/trembling. After the clear MRI, they thought the shaking was just a side-effect from one of the chemo-medications. With the shaking continuing, they are monitoring Maggie very closely. The neurologist has talked about the possibility of some more testing this week, which would need to be coordinated with the oncology team. One of the constant struggles is keeping Maggie healthy enough for general anthesia for these procedures. And with some procedures comes the risk of infection, so the oncology team has to constantly access Maggie to determine from one minute to the next what they can/can't do.
And with all of this, they're also trying to determine what kind of infection she has. She started spiking high fevers again yesterday, so doctors are doing tests/cultures to try to determine the source of infection. There are so many unknowns with typing her infection, and all they can do is dose Tylenol every four hours to try to control the high fever.
Through it all, Maggie seems to keep her chin up. I saw her with her daddy on Friday evening, and she was so happy. She had slept most of the day and saved her "good time" for when Rick arrived. They were doing some cutting and gluing projects. She even licked a bite or two of ice cream. She gave Uncle Tim a kiss, hug and some smiles. We were lucky that our visit timed just right!
For Beth and Rick, the road seems so long and winding. There are many what-ifs and unknowns, and just when they think they understand and have a handle on things, something else pops up or changes. Treatment is very complex, and it seems as if something new is always being thrown their way. Little Maggie has struggled with so many of the unknowns, side-effects and "this could happen" things. I think Beth has reached the point of mentally preparing for them all. They have made many good friends among the nurses and doctors who treat Maggie, which is a comfort to us all. Beth and Rick give Maggie only the best, and they expect that of every other person who walks in her door (and they all rise to the occasion).
I think Rick said it best this past week, when he was interviewed by FOX news. "Maggie inspires me..." Seeing Maggie, watching her be brave, seeing the multiple IV's dosing her "buddy" all day & night, watching her lift her arm for yet another temperature or blood pressure check, getting those glimpses of smiles and laughter, those are the inspirations that are guiding all of Maggie's family and friends right now. She is inspiring us all to walk tall on this journey.
Thursday, April 21, 2005
Wow...as Rick and I read through all of the wonderful messages in the guest book, we can't believe how many people are thinking about and praying for our little Maggie. We want to send out a message of thanks to all of you that are helping our family get through this horrible time in our lives. We want to let everyone know how much we appreciate the kind words, thoughts, financial help, and especially all of your prayers. It has been a rough 5 weeks so far, and we are expecting that this will be a life-long journey for all of us. So, please keep sending the wonderful daily thoughts and prayers. It is very uplifting to be able to read them each day and see how much love our family, friends and especially those of you who have never met Maggie are sending to us.
Beth and Rick
Tuesday, April 19, 2005 - Thanks for waiting for an update. I know it's been a couple days, and we've had several emails requesting a new update today! This round of chemo has been pretty hard on Maggie. She did well with the first two days, but the last three days of ARA-C have been quite difficult. She experiences many side-effects from this chemo medication. The most noticeable is a very high fever. She's averaging between 102 and 104 degrees. These high fevers have led to a very high pulse rate (more than double what it should be) and some shaking/tremors. The shaking and twitching began yesterday, but doctors had to wait for her chemo cycle to finish before they could conduct tests on her neurological system. She had both a chest x-ray and MRI today to see if there was another cause of these symptoms. Both tests came back clear! The doctors feel that these symptoms are side-effects of the very high dose of chemotherapy she received this time. They're hoping that with this round complete, her fever will come back down, bringing her pulse down too and eliminating the shaking. The last couple days have been harder. Maggie is uncomfortable, doesn't talk much, is experiencing diarrhea and vomiting again. These are all effects of the chemo, so we're glad this round finished up today. In order to have the MRI today, Maggie had to have general anthesia again. This time they tubed her through her mouth/throat. This caused her to throw-up blood after the procedure, but nurses were quick to help, and it seemed to pass quickly. I think it was very unnerving for mom to see, but she was brave! Beth and Rick meet with the transplant coordinator at OHSU tomorrow, and we're praying that they accept Maggie as a bone marrow candidate. Preliminary searching has come back with a good count of potential bone marrow and cord blood donators! In more fun-spirited news, Beth joined the ranks of us short-haired folk today. Her hairdresser came down and helped her donate 10" of hair to Locks of Love. This left Beth with her first short haircut in about 13 years! It's completely adorable, and I'll post some photos soon for you all to see. She's getting use to feeling the cool breeze on her neck, and Maggie says she's pretty. Monday, April 18, 2005 9:24 PM CDT Visit www.kptv.com today to see the video footage of Maggie's story with the local FOX station in Portland. The story ended up airing on this morning's news several times, but the video is a great way for our family and friends who are not in Portland to see it.
Sunday, April 17, 2005 - MAGGIE HAS ANOTHER TV INTERVIEW! Watch tonight on Fox (Channel 12) at 5:00pm and at 10:00pm to see Maggie in a tv interview. She is so excited to have everyone watch her when she is on tv. She is quite the little movie star! The interview focuses on Maggie, her diagnosis, and the possible outcomes. They will also be airing information on the Children's Organ Transplant Association (www.cota.org) where everyone can now make tax-deductible online donations to help with Maggie's medical costs. Thanks again for all of your thoughts and prayers. We really appreciate it.
Saturday, April 16, 2005 - Friday was another great day for Maggie. She went for two more walks, and one of her bestest friends came to visit from preschool. Brenna and her mommy spent the whole afternoon with Maggie. They walked, played computer games, listened to music, fought over toys - everything normal for a three-year-old! Beth thought Maggie would crash after her lengthy play date, but she just kept on playing. There was lots of music in her room yesterday and lots of singing! It was the first time in a long time that Maggie talked for the whole day. She talked with her nurse, she even kept talking (and singing) when doctors were in her room! Part of the protocol for immunity is to sterilize Maggie's environment every 30 days. So last night, Maggie and her daddy moved out of her room into another "special room" for just one night. We had to take everything off the walls and move bags and bags of their things out, but the cleaning staff was going to work overnight, so that Maggie can move back into her room this morning. They are sterilizing everything in her room from top to bottom and in between. Maggie switches chemo treatments this morning, and this one may bring some fever or other symptoms. We're praying that she continues to be comfortable and acting like herself. It's great to see her singing, playing and laughing!
Thursday, April 14, 2005 - Maggie had another great day today. Grandma Sharon reports that her day was full of activities - physical therapy, two walks, two art sessions, a play session with her Child Life Specialist, time with Grandma, dinner with Aunt Tammy and Uncle Scott (she even ate - turkey, bread and Aunt Tammy's fish!). I saw her this morning, and she was playing DJ. She puts a cd boombox at the end of her bed, spreads out a collection of cd's and picks and chooses what to play, at what volume, for how long. Rod Stewart was a favorite this morning, and she was proudly pointing out to everyone her autographed photo of Rod Stewart on her wall :) She even told the oncology team this morning that Rod Stewart had a song for her, "Maggie May." Doctors are still concerned about germs, so when she leaves her room, which they are allowing her to do while she has the strength, she has to wear a little mask. She carries her baby doll who also wears a mask. It's very cute. Everyone stops to smile, wave and say hello as she tours around the wing. She started her more intensive, second round of chemo late this morning. This round is the continuous dosing. Her doctor said she will probably have energy and feel good for a couple more days, which is why he's allowing her to leave her room. But he expects that after a couple days, she will have less energy, get fevers, more side-effects again. Even though she looked and seemed to feel fabulous this morning, he said her cancer counts had gone from the hundreds to over 18,000 in the last day. Beth and Rick are really enjoying these good days. Maggie's smiles are completely infectious, and her room becomes more and more colorful each day. Beth told me today that yesterday was the best day she has had in four weeks. It was music to my ears.
Wednesday, April 13, 2005 - Maggie and her family received some good news today! Doctors have started searching the national registry for potential donors. Now these figures are for probable matches, and it is very preliminary, but they found 784 full-match unrelated bone marrow donors and 20 full-match cord-blood donors. Again, these are just preliminary, Beth said some donors may have already been used. But these numbers are good! Beth and Rick are now scheduling a consultation with the OHSU transplant coordinator to see if OHSU is a candidate. We understand that OHSU only takes patients with zero cancer cells, so Maggie's doctors are working hard to get that number down. If she is not accepted at OHSU, it is looking like they will try the University of Minnesota Bone Marrow Transplant Center in Minneapolis. Her second round of chemotherapy starts tomorrow morning. She will have a new, more aggressive medication this time, Pludarobine, which will run continuously for 2 days. It will be followed up with Arasy which will run continuously for 3 days. This 24-hour treatment is different than last time, where she only received doses twice per day for a couple hours at a time. After the chemotherapy, they will test her cells at Day 15 and Day 21 for cancer counts. Our hope is that she will be cancer-free and be able to transfer to OHSU at that time for a transplant. Our Cure Maggie foundation is almost up and running. We blanketed the press today, and I just got off the phone with KXL AM 750 in Portland. They will share Maggie's story on the air and on their web site. We'll continue to keep you posted on upcoming fundraisers. With the necessity of a transplant, we are really stepping up our fundraising efforts to best support Beth, Rick, Maggie and Angie during this time.
Wednesday, April 13, 2005 - Maggie had another great, active day! She went for two walks (with mom, grandma and Angie!). It was a very full day with physical therapy, art therapy, music therapy and more. She was asleep by 8:00. She's also been able to break the fever and little or no diarrhea and throwing up today. Yippee! Plus her favorite nurse was back tonight, so everyone was happy. Of course, there's also another side of the coin. Her cell counts show 50% cancer cells, so the next round of chemo is scheduled to start on Wednesday or Thursday. Doctors are hoping to get her into remission with this round so they will be using a more aggressive form of chemo this time and are preparing Beth and Rick for a rough week. They are trying to get to remission as fast as possible so they can perform a bone-marrow transplant or cord-blood transplant. Unfortunately, at this time, her body is not healthy enough to handle the transplants, so doctors are doing everything they can to get her ready for that big step. Beth and Rick are researching their options in terms of different transplant facilities. It sounds like the doctors' first choice is a cord-blood transplant at OHSU or a bone-marrow transplant at Fred Hutchins in Seattle. It's can be faster and easier to find a cord-blood match as you don't need to have a perfect match as is needed with bone marrow. Obviously, staying in Portland would be easiest on the family. They've also been looking at Duke University in North Carolina and the Minnesota Transplant Facility/Children's Hospital. The team of doctors at Emanuel believe that OHSU is a good candidate for the transplant, and the work is starting now to look for a cord blood donor in the national registry. We are opening a new account this week with COTA, which is a national foundation that does fundraising for transplant patients. We should have info to share with everyone later this week about this account, making donations, etc. This is a non-profit organization who will actually train us to do fundraising, so we're anxious to get started and we'll definitely keep you all posted. If you are interested in making a donation to help Maggie and her family, the COTA account is a non-profit, so your donations will be tax-deductible, plus many employers will match donations.
Day 26: Maggie underwent a bone-marrow test today to check on her cell counts. She has about 25% cancerous cells again, so a more intensive round of chemotherapy will begin for her tomorrow morning. Doctors had hoped to force remission with her first round and are starting to research options if they are unable to force remission with this second round. The most likely course of treatment looks like a cord-blood transplant after this second round of chemo. Her team of doctors are starting to look at databases around the country for suitable donors. If the transplant is necessary, Maggie would move to Doernbecher at OHSU. Doctors feel very strongly that Maggie's mood is very important, and that it's best for her to be near home surrounded by family. Beth is starting to develop a cold, so she's headed home for some rest, and Grandma Sharon will spend the night at the hospital. We're hoping with some vitamins and good, solid sleep Beth will be back on her feet very, very soon. Thank you again for all of your prayers and well-wishes. Beth has been printing the guest book pages and sharing them with Maggie. The whole family has been enjoying them. God bless.
Sunday, April 10, 2005: Maggie's having a really good weekend. She's perked up and is acting more like herself - smiling, giggling, even taking a walk on Friday and Saturday. Her new antibiotics started on Friday, and her fever has come down some but not disappeared completely. She still has some diarrhea and throwing up, some we're not sure how well the new medication is working. But, it's so exciting to hear her talking again and smiling after a very long week with very little speaking. Doctors continue to monitor her intake, output, heart, blood counts, etc. to make sure she's handling the treatment okay. In addition to her hickman, she's also on a heart monitor now, and her IV stand can actually dispense four medications/IV's at a time. It's amazing. Maggie tolerates it all very well, but she doesn't like the oxygen monitor that looks like a band-aid taped to the end of her finger. They hope that her lungs are clear enough tomorrow that she can tolerate general anthesia, so they can do a bone marrow test. This test will help them get a better look at the bad cells that are starting to show up, which will help with the next round of chemo. Because she has AML and ALL cancer cells, it's important for them to know which cells are the more populated so they can target those first. We continue to be amazed by the doctor's around-the-clock work to constantly monitor Maggie's progress. Maggie's had a full weekend with many visitors and many smiles. Aunt Tammy, Uncle Scott and Felicia came to visit, and I heard there were many laughs. Maggie enjoys when Felicia reads books to her. Great Aunt Lynette came with Great Aunt Kathy from Tacoma, and there were more smiles. Papa and Nana Williams came for a long visit on Saturday and got to see Maggie sitting up in bed, doing artwork and other fun activities. Sunday has been packed with visitors too. Ali and Aunt Kim came to play. Maggie and Ali did paper dolls, read books and watched videos. It was great to see so many smiles. Then Teacher Sami came for a visit; what a surprise for Maggie! Angelina has been able to visit more since she is not a bone marrow candidate, so she got to play with Maggie and Teacher Sami too. Uncle Rick and cousin Chad came by, and Uncle Rick played his guitar and sang. I heard there's been lots of singing and dancing this afternoon. So a very good weekend in deed.
Day 22: The results of Angelina's bone marrow tests came back in, and she is not a match for Maggie. The doctors are still optimistic about their current treatment plan which is several more rounds of chemotherapy. One doctor said when comparing the bone marrow transplant and chemotherapy, it's like six of one and a half-dozen of another. Maggie continues to fight some kind of infection, virus and/or bacteria. Yesterday she had a CAT-scan to look at her sinuses, lungs, spleen, kidneys and liver. Doctors were looking for any signs of infection. They did notice that her lungs were a bit collapsed, but they do not believe it is from an infection. Maggie has been laying on her back a lot lately, and the doctors felt this was causing the problem with her lungs. So, they're hoping to get her to sit up more today and maybe do an extra session of physical therapy. With all of the vomiting and diarrhea, Maggie's been pretty lethargic acting. She prefers to lay down over sitting up, and she's not spending time with paints, drawing or as many activities that require sitting up in a chair. The movement from laying to sitting often causes more throwing up. Dr. Olson explained that with AML patients it's almost impossible to determine the cause of their high fever, etc. They will continue to analyze Maggie, her symptoms and it sounds like they trial and error with many different medications until they find the one that drops the fever and perks her back up. Today they are starting a new medication that will have some side-effects like fever, chills/shakes and stress on the kidneys, but doctor feels like the benefits outweigh the cons, and as usual, they have many other medications to tackle the side-effects. This medication will hopefully be the one that gets rid of the infection.
Day 21: Maggie continues to fight an infection this week. Her fever varies from 99 to 103; there doesn't seem to be any rhyme or reason to when it goes up and down. Although the doctors found a strep bacteria in her mouth, they are still concerned about what her body is trying to fight. She continues on several different antibiotics, but the fever lingers. Doctors are conducting some more tests today to see if they can pinpoint the problem. The effects of chemotherapy are catching up with little Maggie, and she has lost about 75f her hair. She likes to have her mom run her fingers through it or comb it. We understand the loosening of the hair feels quite ticklish/itchy. She's been a total trooper about her hair loss. This morning she was laughing as were combing it out. She knows she's joining her cousin Nick and two of her doctors going bald this week. Grandma Sharon and Grandma Sara have brought her lots of hats, so she'll be a very stylish girl! The other effect of chemo and her medications is vomiting and diarrhea, often at the same time. While this would upset most adults, Maggie's age is working to her advantage. She doesn't seem to get emotional when she throws up or soaks her bed. She's such a great patient. She allows the grown-ups to clean her up, and she gets back to her activity. She's been watching videos, listening to music and reading lots of books. She isn't doing as many art activities the last few days as she prefers to be laying down (sitting up usually brings more vomiting). She's also not as talkative, but she does respond to us by shaking her head yes and no, and she still likes to smile and laugh. We just have to work a little harder for the smiles.A clown visited the other day, and she liked him. He brought her a funny clown nose and a peacock feather to tickle her visitors with. That made her smile. She also loves her Child Life Specialist - a grown up who comes in just to play with her - and her Music Therapist who plays guitar with her. We're still waiting to hear if Angelina is a bone marrow match; we're hoping to have preliminary reports by the end of the week.Thank you for your continued outpouring of thoughts and prayers. I think it really helps Beth and Rick keep positive.
Sunday, April 3, 2005: Thank you Nicholas! Maggie's 9-year-old cousin Nicholas joined doctors, nurses, firefighters, police officers, cancer survivors and other families affected by childhood cancer today at the St. Baldrick's Day shaving event. Nicholas collected over $2,000 in donations in just 10 days! The $2,000 Nicholas collected will benefit the St. Baldrick's Foundation, which is a national, non-profit organization that raises funds for childhood cancer research and Cure Search. Cure Search's goal is to "Reach the Day" where all children are cured from cancer. Beth put in a special word for Nick, and he was shaved by a Portland Trailblazer! So he's the proud owner of a bald head and a t-shirt signed by a Blazer. It's a winning day all around. Kudos to two of Maggie's doctors also. Dr. Olson was sponsored for over $30,000! It was amazing to see so many people come together to help raise money to find a cure for this horrible disease. Thank you to everyone who supported it.
Sunday, April 3, 2005: Maggie had her last dose of chemotherapy on Friday at 4:00 am. Doctors told us to expect a downturn after chemo, which is when many patients start to fight infections. Maggie spiked a fever on Friday night of 103 . She can only be treated with Tylenol, and she has been fighting the high fever all weekend. A rash developed on Saturday morning, so many tests were done, including growing cultures from samples from Maggie. Doctors were sure she had an infection, but they needed to determine if it was bacterial or viral. Saturday was a rough day for Maggie. She was quite uncomfortable, not talkative, etc. The fever was taking all of her energy. She received both platelets and blood transfusions and five different antibiotics as they awaited word on her infection. They have also done some cool baths to drop her temperature, but it makes her so uncomfortable and upset, they're trying to balance the fever and her temperament. (I can't imagine that's easy with a three year old). She was diagnosed with a rare strain of strep infection on Sunday morning. This strep is a bacteria that we all carry in our mouths, however, Maggie doesn't have the immune system to fight off this nasty bug. Doctors expect she'll be down for a couple more days fighting it off. In the meantime, Tylenol, antibiotics and more platelets/blood will help perk her up some. Although doctors had told the family there would be days like these, it's been a very hard weekend for Beth and Rick. Until this weekend Maggie has looked and acted like herself. And while they didn't know what was causing the infection, doctors stopped visitors from coming in to best protect Maggie. In more cheerful news, Nick is going bald today with many of the doctors and nurses from Legacy Emanuel Children's Hospital. Beth will take a short break from the hospital to come watch the "hair fly."
Day 14: Beth, Rick and Angelina were tested as potential matches on March 30th. Angelina is our best chance, which is 25% for a same-sex sibling. At this time, doctors only want to look at these three candidates. If they are not a match, the 10-day/18 cycle will continue for 6-8 months. Because she is such a high risk for any kind of illness, we believe the doctors will keep her at the hospital for the first 38+ days of treatment. It is unknown at this time when Maggie will be able to go home.
This was also the day little Maggie May became a “TV Star.” She spent the morning with Christine Miles from KOIN News. Like the true “star” she is she loved the camera - posing in bed, walking the halls leading a parade with the cameraman and family. She really does light up for a camera!
Day 11: Maggie enjoyed Easter today. She had an egg hunt in her room, lots of visitors including two Easter Bunnies and lots of toys and candy! She left her room yesterday and took a walk around her "wing." It was her first walk in many, many days. Beth says they were out for quite a while, which was refreshing. Maggie enjoyed seeing the game room with Nintendo's, but doctor says there are too many germs in the common rooms, so no more game room for a while.
Day 8: There are many things to keep Maggie entertained at the hospital - physical therapy, art therapy and music therapy. Beth says she loves the digital guitar and singing/dancing with the music teacher the most. Teacher Sami came to visit last week, but Maggie wasn't quite sure what to make of her teacher when she wasn't at school. (Of course, like all children, she thinks her teacher lives at school). One therapist gave her a haircut last week - a very cute bob. I'll be sure to get pictures posted. Beth likes it so much, she insists it's the cut Maggie will have when her hair grows back.
Day 6: Maggie started intensive chemotherapy on March 22nd. It's a 10-day cycle that involves three different chemo medications. She is responding well to the chemo with some nausea. Her immune system is depleted, so she has been moved to a special hospital room with an air-filtration system. The downside is the small size of the room, and the door must remain closed at all times. After her 10-day treatment, she will rest for 18 days, then another cycle of 10 days of chemo and 18 days of rest. The goal is to do a bone marrow transplant after the second cycle.
Day 4: The doctors are concerned about Maggie’s reduced immune system. She is a high-risk for any and every type of infection. She is moved from the Infant/Toddler’s Wing to a special air-filtration room in the School-Age Children’s Wing. The room is much smaller, but family helps decorate the room with paper flowers, children’s artwork, cards, balloons and more to make the family feel at home.
Day 3: On March 19th, Maggie underwent her first spinal tap to test for cancer in her spinal fluid. The doctors also install her "buddy" which is a main line IV port in her chest area. She understands that her medicine goes in and blood comes out. She's very fascinated with the medical stuff, and I'm betting she'll grow up to be a doctor. She's tired and doesn't have an appetite, but other than that she's her usual cheerful self. Doctors realize that the test results are not human error. Maggie has a rare form of dual-lineage leukemia, often called MLL. This is both AML and ALL types of leukemia. There is much discussion about the treatment plan when preparing to treat two very different types of leukemia.
Day 2: Maggie undergoes a bone-marrow test to determine her type pf cancer. The doctors are confused by the results which indicate two-types of leukemia.
Day 1: Maggie and family check into Legacy Emanuel Children’s Hospital in the evening. They meet Dr. Olson who is the lead oncologist who is heading up Maggie’s case. They discuss types of leukemia and what can be expected in the coming days.