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!

Free at last, free at last, we are free at last!!!

Alaina is home. She is eating and drinking and taking her meds by mouth. This is all good stuff. I really didn't think she would leave without any home health support, but she did. check the website soon for pictures from her breakout party. It is day 53 post transplant and believe it or not we are one of the first transplant patients that had transplant around the same time to leave.

To catch those of you up that have not been following her progress,or a brief recap....Alaina went in for stem cell transplant on May 1. She had chemo then the transplant on the 9th. She did pretty well except she got extreme mouth sores(a reaction to the chemo). She could not swallow anything but her blood count showed that the transplant was a success. She almost went home 2 weeks ago but came down with graft versus host disease in the form of a skin rash and upper GI trouble. That is under control now and she is up and around. She is in isolation at home which means she can't go out but can have visitors. She is also on a strict diet - no fresh veggies or fruit. This will last for several weeks when she will get reassessed. We still live day to day. It has been two years since Alaina was first diagnosed. Its been quite a journey so far

Thank you for your thoughts,prayers and emails,

Leslie

Alaina is doing better. She's been on steroids for several days for her GVH and it appears to be working. She's not as nauseous this weekend. She has started drinking again. She stopped when the GVH set in as it made her queasy.The best news is her interest in food is coming back. I'm sure we will stay the course for a few more days then try taking her meds by mouth.

Lets hope for a good week with nothing but progress.

Leslie

I guess by now you have figured out that Alaina didn't get to come home on Friday. She tried for a week to take her meds orally without much success. She also got a little GVH( scroll down to the first part of May for an explanation). Its in the form of a skin rash and most likely in her GI tract. A little GVH is good so its a good thing. Her meds were switched back to intervanous and one was added to combat the GVH. As always its day to day.

Alaina's spirits are good. She has been able to go outside and get a breath of fresh air. Today for Father's Day we had a picnic lunch ( we ate, she drank) on the hospital terrace.

All in all she is doing good. It just takes time to heal.

Alaina had a bone marrow aspiration today.The results were good. This week she has been drinking juice and trying to take her medications by mouth. She has been somewhat successful. She does physical therapy everyday which usually consists of walking 2 or 3 laps around the hall and some stretching and strengthening exercises.She is doing so well that her doctors gave her the ok to go downstairs to the gym for her sessions.Its nothing too strenuous but it breaks up the monotony of the workout.

We are aiming for a Friday release. We have learned over our many stays not to count on anything because plans can change at the last minute. So... check back Friday.

If you're interested in learning more about childhood cancer try: www.megansmission.org. This is a foundation started by a family that lost their daughter in October 2000 to cancer. Megan was at Cook Children's the same time as Alaina.The affects of having a child with cancer touch the parents in many ways. For some of us we want to reach out and help cure this horrible disease or at the very least help the families going through it. Megan's parents organized this non profit foundation to help fight the disease and provide information to the public. I urge you go look at the website. Read about Megan's battle and the foundation's goals. There are many useful and informative links. This is just one way one family has directed their energy after experiencing the devastating effects of cancer. Leslie

Alaina continues to get a bit better each day. Its taking a very long time for her mouth to heal so that is what keeps her in the hospital. She is trying to take more sips of water despite the pain and nausea. Hopefully she will come home this week. Her counts and everything else are great. I'll keep you posted and remember , no news is good news.

Thanks for the thoughts and prayers,

Leslie

We are still here. The good news is Alaina got moved out of the bone marrow unit. That means she's not in isolation anymore.Her counts are good. She is engrafted. She is still recovering from the mouth sores which keep her from swallowing. Her new room is much smaller so we are all adjusting to the cramped quarters. They try and make things as comfortable as possible. Today she got a new mattress, TV and remote control for her room. That was the big excitement of the day, except for the nose bleed this morning. She gets those occasionally. They're not too bad just annoying.

All for now.

Leslie

Day20

No news is good news. Alaina continues to improve daily. Her mouth is clearing up but its taking time.She can not swallow because it makes her nauseous.She has to be able to drink water and take her meds orally before she can go home. That day is on the horizon.There is no need to push her. It will happen when the time is right.

Leslie

I'm back from California with Callie.Alaina is doing much better. Her counts are roaring back and going to the trouble spots so her mouth sores are getting better.She is on a new anti nausea medicine thats working so far. She started losing her hair last week and is almost bald today. She will be going home soon!

Day 8 Not much to say. All is the same. Alaina still has terrible mouth sores and until her white blood cells come back her mouth will stay that way. Hopefully they will start coming in this weekend. John is on duty for a few days while I go out to California to help Callie drive home. I will continue to update the page if there's anything to report.

Leslie

Day 5 Alaina is not feeling well. The chemo and lack of white blood cells makes life very uncomfortable. Even though she has morphine for the pain she still doesn't complain. We expect her to feel this way for a few more days until her white count starts coming back. Not much to say and not very cheery but this is for all of you who are checking in.

Thanks for your thoughts and prayers,

Leslie

This is Day 2. The countdown starts on the first day of transplant at 0. She had a second dose of stem cells yesterday. Nothing out of the ordinary is happening. The ordinary consists of mouth sores,mucousitis, diarrhea, and nausea. Sounds like fun, doesn't it? She is on TPN all the time now. Her days are filled by sleeping till 1 or 2. Walking around a little. Watching movies, doing crossword puzzles, reading. Somehow the time goes by.

Callie went back to California to take her exams and move out of the dorm. I know she was glad to get back.

Stay tuned......

Leslie

Transplant day! OK so theoretically they were to collect Callie's cells yesterday and today with the assumption that they would collect enough cells on the first day transplant today and freeze the rest. Things don't always go as planned.

Callie's collection yesterday was not enough because she moved her arm slightly, got a hematoma (like a bruise) and they stop an hour early. They had only collected 1.3 million stem cells per kilo and were hoping for 2 million. The transplant went ahead as scheduled with half the amount. So Callie went back today and had a good experience, they collected double the amount from yesterday and will transfuse the rest tomorrow with no harm done. The transfusion today took about 30 minutes. It's almost anticlimactic.

In the picture is the good Dr Howrey, one of Alaina's transplant doctors. I think you can tell by the picture he enjoys his work. [I think he looks like Alaina's next unsuspecting victim. -ed.] As for Callie, she had to sit still and watch a lot of movies.

So far Alaina is feeling fine.

Hope this clarifies some things

Leslie

Ok I have all the answers or at least some of them about stem cells. First of all Alaina had stem cell transplant last year it was just harvested through bone marrow therefore the more common name, bone marrow transplant. This time she is having a stem cell transplant because the cells are harvested through apheresis, which is just like giving platelets. The blood is taken from the donor's one arm, the stem cells removed then the blood is put back in the other arm. These stem cells are primed and ready to make red or white blood cells or platelets as are the cell collected from the bone marrow. The difference between bone marrow and stem cell transplant is that stem cells grow a little quicker and there is a greater risk of graft virus host disease. The cells can be collected from umbilical cord or peripheral through a related donor or a blood bank. (Note if you are in the bone marrow registry you may be called to give stem cells or bone marrow.)

Now the controversy over stem cells is about embryonic cells. These cells have the potential to grow tissue anywhere in the body. These cells can only be collected from fetuses or cells used for in vitro insemination. I hope this answers some questions. For answers to more medical questions just Ask Leslie.

Alaina had her last chemo today. The transplant is Thursday. I will try and post a picture to clear up any other questions of how its done. She is feeling the effects of the chemo and has been a little pucky. Otherwise she is doing well. Callie has started her GCSF shots to boost her cells. So far she's gotten a bit of a headache but that's all. She will take the shots for a couple more days. Tomorrow she starts her collection.

Thanks for your thoughts and prayers,

Leslie

Alaina finally went in to the hospital yesterday. They wasted no time in hooking her up to pre medicate her for her first dose of chemo. So far, so good. She has six more days of chemo , then the transplant is on Thursday (I think). Callie will have to have GCFS shots to boost her cell production starting Saturday. Her cells will then be harvested on Wednesday and Thursday. She leaves Friday to go back to finish school and pack up her dorm room. She will drive back to Texas in a couple of weeks and stay here for the summer.

For all those who gave to the Alaina Enlow Fund....

The money was used to improve the food service. The new menus came out this week and so far there has been a good response. In a few weeks they will implement a program where the kids can order what they want when they want . A "hostess" will take their order and deliver it. I was kind of hoping we wouldn't be in the hospital when the program started but at least we can see first hand how it works. Our thanks to everyone who helped make this possible. I know that the patients and staff are grateful. Keep checking the page.

Leslie

Well we're still at home. we are waiting for one test result to come back before proceeding. Its throwing everything off. Callie needs to get back to school by the end of next week so the window to harvest her cells is closing. The good news is Alaina gets to stay home a couple of more days. She continues to feel better each day which means she will be that much stronger for the procedure.

Thank you for your prayers , thoughts and concerns,

Leslie

First I must apologize for my poor spelling. I get in hurry and don't always use spell check. I hope you get the drift.

Last day of freedom! Alaina goes in the hospital tomorrow. We are actually waiting for a test result on Callie but hopefully it will be in tomorrow and there will be no surprises.Alaina is doing great! She is off TPN and her stomach is much better. She has lots more energy and is going to the local festival and staying out late with friends. Her attitude is good. I think she's ready to go.

Stay tuned. I know this procedure is confusing so please feel free to write if you have questions or comments. Email is my diversion.

Leslie

We have been busy in Ft Worth with pre transplant work up. That's a bunch of tests. We were there all day Friday from 7:30, Monday from 9:30, Tuesday from 8:30 and don't get home til at least 5. Yuk! Now we have a couple of days off until Friday. I think I need to clarify what a stem cell transplant is( to the best of my knowledge). Its similar to bone marrow transplant except that the stem cells grow faster and promote more graf versus host disease (GVHD). It's not a new procedure for leukemia however they are using it more often now. Stem cells are younger than bone marrow. There has been a lot of publicity of late about getting them from umbilical cords but for cancer you can also use donor related cells or get them from a donor bank. Since Alaina already has Callie's marrow her stem cells should work just as well.GVHD can be very scary. You actually want to see a little GVHD because that means Alaina's cells are fighting off foreign bodies but a lot or chronic GVHD can cause serious problems. So I guess what I'm saying is... Alaina is fortunate to be able to have a transplant but it will not be a walk in the park. The good news is, she is feeling better each day. Her stomach is getting better but she's still not eating normal amounts. Until Friday, thanks for checking in.

Leslie

ALERT! Alaina will have a stem cell transplant next month. Things change quickly with her. The doctors are so encouraged by her remission that they want to do a stem cell as soon as possible. I got a call yesterday informing me of their recommendation and we have been at the hospital all day today for various tests. She has a couple of appointments on Monday and Tuesday then a few days off. She will be admitted on Sunday and start chemo the next day.

For Callie's part.... She has an appointment with the transplant docs on Monday as well as having some blood drawn. She will do two days of having her stem cells removed. The process is like giving platelets only longer. The blood is taken from one arm the the stem cells are separated then the blood is returned to the other arm. All in all her part is far less painful than the last time. This will take place on May 6 and 7. On the second day Alaina will have the transplant. Meanwhile, Callie will go back to school take her finals, pack up and I will hopefully drive her back to Texas.

We have a busy few weeks ahead. Things are never boring around here.

Stay tuned,

Leslie

Welcome to the remarkable Alaina story. Yes, she is officially in remission. Will the leukemia come back? Yes... so.... We will go over her options and hopefully come up with a plan on Friday. Her spirits are better and she is regaining her strength although her stomach continues to give her fits. The good news is she got the a ok to go to Fry Street Fair this Saturday. She's looking forward to listening to a lot of good bands and taking pictures. Our prayers this week are for no rain.

Leslie

Alaina had a check up and bone aspiration today. Everything is good! She is making her own blood cells and platelets. The marrow had 4.5% blasts. Don't ask me exactly what that means but it is technically in remission. They are doing further tests on the marrow and we will find out more on Tuesday. She feels so-so. She is still on TPN but she has tried a few tastes of food and drink so we are headed in the right direction.I have been very busy with nursing duties and the clinic appointments take half the day. Obviously, John and Callie and I are overjoyed with the latest turn of events. Maybe you have figured out that things change quickly and drastically with cancer. We will happily ride this upswing.

Cheers,

Leslie

Alaina is home! Her counts are normal. She still has gut issues but we can deal with that from home. Friday she will have another bone marrow aspiration. That will tell us how much leukemia is left. Under 5% is considered remission. I'm sure from there we will wait a while before taking the next step. Hopefully that will be some kind of chemo. Her gut is too fragile to do anything for a while so she can just relax and recuperate.

Thank you over and over for your thoughts ,prayers, and emails.

Leslie

Alaina's counts are roaring back. She could be released from the hospital any day. We are still trying to keep her gut from hurting before she comes home. Future plans are up in the air. Everything is day to day. One thing is for sure... Alaina is remarkable.

Leslie

Alaina continues to rally back. Her counts are smokin'. She still has issues that need to be cleared up but barring that the doctors feel she can come home this week.To clarify any misconceptions...The prognosis is not good, but she is an anomaly. She continues to defy the odds. Its been a long week. I wish that each of you could know her personally.Thank you all for keeping in touch. Please refer to the website for information.

Peace,

Leslie

Well its been a long silence but don't blame me. The webmaster Tom went to Mexico, a favorite destination for the Enlows. When last I updated, Alaina was feeling puny. She rallied around and was released from the hospital on Friday March 29(?). Callie was home for spring break and they got to go out and visit friends and generally hang out. The chemo she had on Wednesday and Thursday started to effect her bones and she was very sore Sunday. She went to clinic for a check up on Monday got fluids and went home. She continued to feel bad so I brought her in the next day only to discover that her blood pressure was dangerously low and she had an infection. They whisked her over to the PICU were she spent the night while her blood pressure stabilized. The next day we were back on the third floor where we have been ever since. She got a little pancreatitis and pneumonia, but has rallied around once again. That old Alaina spirit! Her gut is giving her problems. She can't keep anything down. This too is an old problem that keeps he doctors guessing. The good news is her counts are starting to come back. Right now we are holding the course. Its wait and see if and when she has more chemo. Stay tuned.

Leslie

Its been awhile since I last updated the page. We found out last Friday that the chemo Alaina was on did not get rid of the leukemia. She was given a few treatment options by her doctors. She will start on 2 different chemos. They are given on two consecutive days and there shouldn't be any harsh side effects. We will do the first round in the hospital then hopefully she can go home and continue her treatments out patient. We don't know, at this time ,how long the treatments will last. It is a day to day process. Alaina is feeling good and anxious to get out of the hospital. She is eating well and they have taken her off TPN(intravenous feeds). Stay tuned for more updates.

Thank you all for your prayer, thoughts, and energy,

Leslie

Everything is copasetic. We're just waiting for the bone marrow test tomorrow. Alaina is feeling a little puny and a lot bored. There's only so much you can do in the hospital. She went outside and walked around the last couple of days but that gets old too. Oh well, no news is good news.

Peace,

Leslie

All is well with Alaina. We are keeping our fingers crossed. She is able to get up and move about the hospital and have visitors. That keeps her a little active and from becoming too bored. She's eating better and they have decreased her TPN. Another bone marrow aspiration is scheduled for Friday. Then we will have a clearer picture of where we stand. Stay tuned. Keep that energy flowing.

Leslie

Not much to report but i know a lot of people are checking the site so I'll tell you the latest. Alaina is having a good day today. Yesterday she spiked a fever which the doctors had predicted, which is why we are still at the hospital. An infection came with it but all is under control. They put her on TPN(intravenous feeds) yesterday because she was having trouble eating and had lost some weight. Today she is eating more so hopefully they will wean her from the TPN soon.Her spirits are good. She can't have flowers but cards are nice.

alaina Enlow
room 3015
Cook Children's Medical Center
801 Seventh Ave.
Ft Worth, Tx 76104

I'm glad I have nothing more to report.

Alaina is through with her chemo. It makes her nauseated but otherwise she is doing well. The doctors want to keep her in the hospital for a while to be on the safe side. That's ok with me. She moved to maybe the biggest room in the hospital so she's happy about that. So far so good.

I just got back from Mexico City(if you care). I went to judge a guitar contest . You can check my webpage in a few days to see pictures and find out more : www.imps.org

Keep the energy flowing

Leslie

Alaina starts her chemo today. Yesterday she had her central line put in and a spinal tap. Her spirits are good.Some friends from school and her teacher came by. She is bypassing the hospital food in favor of alligator tail or whatever people will bring her.

The chemos she is getting are Idamycin and Cladribine. They are short infusions that will last for 5 days then we wait.If you want to find out more about these drugs or her leukemia(AML) go to :www.leukemia.org . The plan is for her to stay in the hospital for a few more days. AT first we thought she would be able to do her therapy as out patient but we might as well stay and be closely monitored.

I am going to Mexico City tomorrow to judge a guitar contest and will be back Monday. John will take over full nursing duties.You may wonder how can go at a time like this but I am confident that Alaina is in good hands(also she wants me to go and John and her doctor agree).

So hasta lunes.....

Leslie

Sat 2/23/2002 8:56 AM

We found out this week that Alaina has relapsed. She will go into the hospital Monday Feb.25. Tuesday they will put her central line in and give her her first dose of chemo. The regiment she is on only lasts 5 days and with luck she will be discharged wednesday and continue her treatment as an out patient. After day 21 they will reassess and proceed from there. We are not sure of the options at that time because it depends on if she is in remission.

In the meantime, Callie came home this weekend to spend time with us. Please feel free to call 940 387-6897 or email us :

• Alaina's email - fuzzyduckhead@hotmail.com
• john's - jenlow@gte.net
• leslie's - leslieenlow@hotmail.com
• Callie - sweetmarie82000@yahoo.com

Thanks for your thoughts and prayers. Check back soon.

Leslie