I don't have much to say but I know some people check for updates so here goes.....

First of all, my neighbor, Mary Gibbins, is doing Team in Training for the Leukemia & Lymphoma Society. She got involved because she wanted to do something for Alaina. Mary is not a sports minded person so this is really something. She decided to race/walk a half marathon locally, but once she got into training she decided to do the race in San Diego. Training was going so well she thought she would do a full marathon except now she is sidelined with a pinched nerve so its back to the local event. At any rate she has raised lots of money for the society. You can read about her mission, see photos and keep up with her daily diary at: http://mgibbins.pledgepage.com.

The Alaina Enlow Fund is still growing at Cook Children's. In the coming weeks we will meet to decide how best to direct the funds. Also in the next couple of weeks we should have a link to Alaina's photo page. Aside from just looking at her art on the web, we are trying to come up with the best way for you to own some of her works. The proceeds would go into her fund.Some ideas are; notecards, mounted limited edition photographs, and/or a book. If you have an opinion or other ideas ,please let me know.

Next week the family will gather in Santa Barbara, California and have a small ceremony for Alaina.

Thank you for the many thoughts and e mails. Check back in a couple of weeks and I should have more information and stories.

Leslie

I thought it was about time for me to write my own tribute to Alaina. Although first I would like to thank Uncle Tom and other family members for keeping the site updated for the past several days.

I hope that everyone who has looked in on the website, whether occasionally or frequently, has a better picture of who Alaina is. The battle that she fought was a testament to her strength. A strength few of us possess and one that she never questioned nor did she give it any real thought. She touched so many lives, which was evident by the overflowing church and the amount of e-mails and cards we have received so far. You know, we wander around this earth wondering why we are here (if you are the philosophical sort) and in Alaina's case it was clear, not that she ever knew it, which is the beauty of life. She touched people in different ways and never intentionally and she will live on in us all in those ways. She is the most humble and honest person I have ever known. In life she had no boundaries and she certainly has no boundaries now. I don't have to worry about Alaina any more. Her work is done.

Thanks to all for being a part of her journey. Your thoughts and prayers kept us going. Please check the site from time to time. We hope to start a web page of her photos. [For those who can't wait, I just discovered her photos of a local band at http://www.web-forge.net/trent/lastinline/photos.html. -tom]

One other note.... people have asked me where and when to send memorials. Please chose from the entries below. The Cook Children's memorials will go to the Alaina Enlow Fund. Once the memorials are in we will designate where the monies will go. We have a few ideas, including a GVH research fund. The fund will be used by the hematology/oncology department in some capacity. Stay tuned. Alaina's legacy lives on.

Leslie

Alaina Jean Enlow

Alaina Jean Enlow, 18, of Denton died Tuesday, Feb. 4, 2003, at Cook Children’s Medical Center in Fort Worth, following her long battle with leukemia.

Alaina was born Aug. 5, 1984, in Somers Point, N.J. She attended Denton High School and graduated in 2002 from the Backporch School. Her passion was photography and she was accepted at Brooks Institute of Photography in Santa Barbara, Calif.

In the summer of 2000, she was diagnosed with acute myelogenous leukemia. Her courageous fight was an inspiration to all who knew her.

She is survived by her parents, John and Leslie, and sister, Callie, all of Denton, and grandmothers, Dorothy Enlow of Gig Harbor, Wash., and Peggye Enlow and Patricia Savage of Tulsa, Okla. She also survives in the hearts of so many, especially the remarkable staff at Cook Children’s Medical Center.

In lieu of flowers, memorials may be sent to Cook Children’s Medical Center, 801 Seventh Ave., Fort Worth, TX 76104 or the Leukemia and Lymphoma Society, Donor Services, 1311 Mamaroneck Ave., White Plains, NY 10605.

She was our favorite monkey!

A memorial service will be held Sunday, Feb. 9, at 6 p.m. at the Gribble Springs Baptist Church, FM2164, Sanger, 940-458-3274, with Rev. Chris Ruwalt officiating.

Mulkey-Mason, Jack Schmitz and Son Funeral Home in Denton is in charge of arrangements.

(The Denton Record-Chronicle)

Alaina's service rocked!

The church was filled beyond capacity. Family, friends, and doctors and nurses (who have become both family and friends) were surrounded by photographs of and by Alaina.

Her high school teacher, Rodney Love, told of her enthusiasm, humor, and, well - determination. Dr. Bowman from Cook Childrens Medical Center, summarized the course of her illness and her incredible strength and courage in facing each and every day. Rev. Chris Ruwalt attempted to get the last word in a long-standing debate with Alaina of the relative merits of rock groups U2 versus Greenday by quoting U2's "In a little while":

In a little while
Surely you'll be mine
In a little while...
I'll be there
In a little while
This hurt will hurt no more
I'll be home.

Each of the speakers shared how much Alaina taught them in their short time of knowing her. Each now strives to emulate Alaina's ability to savor the present. To live each day to it's fullest. To see the extraordinary in an ordinary world.

Alaina knows no boundaries.

(We exited the church to a recording of "2000 Lightyears Away" ... by Greenday.)

Alaina passed away very peacefully at 11:25 this evening surrounded by her family.

Alaina's pneumonia worsened overnight. Doctors removed support other than oxygen, nutrition and morphine. She was agitated all night and they've spent the day just trying to keep her comfortable. John, Leslie, and Callie are constantly at her bedside. During a brief period of lucidity this morning Callie asked if Alaina would like a tattoo drawn on her arm. She requested a monkey with a blond wig. Callie may have found a new career.

Waves of doctors and nurses have taken turns visiting all day. It's incredible how many people that tough little kid has touched so deeply. They've become a large, close family over the last couple of years and are grieving as much as we all are.

Thank you for your continuing thoughts and prayers.

Uncle Tom

Alaina developed pneumonia a few days ago and is in pretty serious condition. Doctors are not optimistic, but Alaina is still fighting and this wouldn't be the first time she surprised them

Callie came home Saturday. Alaina is frequently awake and alert and the family is having a good time together.

A houseful of relatives is hovering nearby to feed and support them whenever they want to take a break, which isn't often.

Uncle Tom

I've lost track of the date. I'm sure you understand.

Alaina has shingles on her head. She has been in a lot of pain, understandably. She had shingles about a year ago on her stomach, which is probably a much better place to have them if you have to have them. We also found out that her thyroid level is low. They took another lab to confirm it but in the meantime thay are treating it with thyroid medicine. The symptoms are very similar to GVH and the effects of some of her medication. Hopefully the new meds will clear up some of the problems Alaina has been having.

On the up side... the cancer is still in remission, she is gaining weight and her eyes are getting better. We will be in the hospital a while so stay tuned.

Leslie

Alaina is holding her own. Some things are getting better and some things are the same. She has gained some weight back. She is still on 24 hour feeds and she eats a little "real" food. Her problem isn't so much not being hungry as not absorbing what she eats. Not only does she not keep the calories, she doesn't keep the vitamins, minerals and fats.

We have settled into the hospital. We bring our own towels, blankets and pillows. The only problem is we have changed rooms 3 times in less than 2 weeks. We should be able to stay where we are now but I'm holding out for a bigger room.

Callie got back to California and started classes this week. All is well on the coast.

Alaina went into the hospital last Thursday.She has not been having the weight gain the doctors had hope for in the last few months. On the contrary, she lost 10 lbs last week, so..... she is now inpatient and can be constantly monitored.Some of her meds are now being given IV. As of today, Wednesday, she is stable and shown a little improvement.She will probably be in the hospital at least a couple of weeks.Recovering from what she's been through will take a long time. She is able to get up and walk around which is a good thing because she has had to change rooms twice already. Unfortunately, there are more cancer patients than beds. Cook Children's Medical Center is a comforting place to be. After 2 1/2 years we know quite a few people, hence I never eat alone and keep the new nurses in line.

All for now. Check back periodically.

Leslie

Alaina went back in the hospital Thursday. Malabsorbsion and GVH have got her down. Hopefully it will be a short stay. Her spirits are good and she is feeling better already.

Callie leaves tomorrow to drive back to school. We will all miss her. Check the website for occasional updates.

love,

Leslie

For those of you who periodically check in... here is your periodic update.

Alaina's counts are great.She's gaining weight. No cancer in sight but GVH has still got a hold on her.It has effected her eyes,gut, liver and intestines. She is back on steroids but we have already started to wean them. She is still on formula feeds which involve a pump and a pole so consequently we will not be travelling over the holidays. You can come to us though.

She is feeling better this week. The GVH is a little better. Let's hope this is a trend that continues through the new year.

Its been quite a year. She relapsed in February so we have been dealing with this for 11 months non stop. Thanks to everyone for your support, thoughts and prayers. It has made the journey a little more peaceful.

We are planning a quiet Christmas at home. Callie will be home this weekend. The tree is up and the lights are on. Shopping is almost done.

Merry Christmas. May your holidays be stress free and full of good cheer.

Leslie

Its been six months since Alaina's transplant. She is in complete remission! but.... the GVH is still giving her fits. The G button is working well and she has started to gain a little weight. She's on about 10 different meds throughout the day so she is constantly taking something. She's a trooper though, she never complains ,she just doesn't always take her pills. Oh well.

She has started working with a photographer here in Denton. She goes once a week and he gives her assignments so she has something to do besides take meds. Since Alaina is unable to go to the photography school she was accepted to, this keeps her interest up and is not too taxing as she is still incredibly weak.

We are looking forward to a quiet Thanksgiving. Callie is coming home on Tuesday. I am particularly pleased because I don't have to fix a turkey. There's no need since Callie is a vegetarian and Alaina is on formula(actually Alaina can eat and has requested a ham).

Here's wishing everyone out there in cyberspace a Happy Thanksgiving.

Leslie

Alaina got her G button in last Monday but had to stay in the hospital a couple of days after surgery. She came home Wednesday and is doing well. She gets "fed" for 12 hours at night. She is on her own the rest of the time.She is still incredible weak but hopefully the nutrition will help get her strength back. Last night two of our neighbors presented Alaina with a photo quilt.

(click for a closer view, use back button to return)

The inscription on the back reads:

"Celebration of Courage"
To honor and celebrate your strength of heart.
Created and quilted with love and admiration by Ellen Ralph and Deborah Mouser.

How awsome! I am overwhelmed by our friends and neighbors generosity and caring. Alaina was really touched also. The quilt has pictures of Alaina throughout her life and of course pictures of the rest of the family, but also some of her own photoghraphs as well as pictures of some of her interests(i.e.bands, movies, etc) The amount of thought and time that went into creating the quilt leaves me speechless. To Ellen and Deborah- thank you from the bottom of our hearts.

Leslie

Alaina got sprung today! Her weight is still down and she has a feeding tube in her nose but she is home. She will have the feeding tube for at least a couple of weeks. She goes to clinic twice a week so meds/feeds can be adjusted as needed. Her pnuemonia is under control but it takes a long time to be completely well. Her counts are good so we are barreling along. Thanks for checking in.

As always,

Leslie

Alaina is still in the hospital. Her pneumonia is under control although she will be be on antibiotics for some time. She has steadily lost weight since she was released from the hospital in July. That weight loss escalated since being in the hospital and resulted in malnutrition. Part of this is due to GVH (See April 23rd). It makes her metabolism work faster so she needs more calories than the normal person. She has always eaten like a bird so this is a real challenge. A challenge, that like the others, Alaina is up to. She now has a feeding tube to supplement her diet. Her weight is on the rise. Yeh! Hopefully she will be home next week.

Thanks for checking in,etc.

Leslie

Alaina continues to recover from pneumonia. She moved to the H/O floor on Sunday. We expect to be there a few more days. She wants to come home so she can go to the Texas State Fair!

For those of you who check the site occasionally...

we just got back from Italy. The four of us met in Rome and proceeded to Naples where the girls boarded a ferry to the island of Ischia and John and I went to Positano and Ravello. While the girls enjoyed massages and the beach and Capri, John and I enjoyed the beaches , good food and wine. We met up in Naples, then spent a day in Rome before saying goodbye to Callie. John, alaina and I went on to Florence for a few days, Tuscany, one night, then back to Rome for a few days.Alaina did great with all the walking. She took some great pictures. Her favorite place was Rome.

We just had time to recooperate from jet lag when Alaina went back into the hospital. Well, she'll get her rest.

Callie's having a great time at school this semester. Loves her classes and professors. I'll let you know when Alaina gets sprung.

Leslie

Its definately pnuemonia. She's stable and doing well. Eating some. We are waiting for a room to open on the thrird floor so we can get out of PICU. Hopefully that wil happen today.

She's on major antibiotics she can get better and get home.

more later,

Leslie

Sorry to say that Alaina is back in the hospital. Its just an infection and a little pnuemonia. Things are under control and we anticipate a short stay. She started throwing up early Friday morning. By late morning she had a fever so I took her to clinic where her blood pressure proceeded to drop. She is in the PICU at the moment but should be released to the floor today.

I will keep you posted or check her website.

Leslie

I have not updated the page lately because there has not been much to say. Alaina is steadily improving and everyone is glad she is home. She goes to clinic once a week now. Her 100 post transplant day is rapidly approaching. What that means is... she gets her central line removed and they do a bunch of tests. Its one of the many red letter days.

Alaina had her graduation ceremony today. (Click here to see graduation pictures.)It was short(only 4 grads) and sweet and Alaina was all smiles.Many family members and friends were there to help celebrate. It was rather informal. You can't see it in the pictures but Alaina's tassel is a bottle cap with a picture of Bob Marley in it.Her school is open minded to that sort of thing. They also held up graduation until Alaina was out of the hospital and able to attend.Very cool!

It has been a huge weekend at the Enlow household. Friday was Callie's 20th birthday, Saturday was graduation and parties for both girls and Monday is Alaina's 18th birthday. Needless to say we are very glad to be able to enjoy this special time together. I will periodically update the site . Remember... no news is good news!