Journal History
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Sunday, March 28, 2004 7:43 PM CST
HAPPY BIRTHDAY DEANNA!
We took flowers to Deanna and balloons. We also released ballons into the sky to float off to her. I know she was watching saying Momma don't cry.
Today Mom, Nick, and I came home from our spring break trip to Gatlinburg. We really missed my baby girl. It was the first trip without her and it was very hard.
Our trip was fun...of course with Nick it was a trip!
The beds we slept on were hard as a rock and you could hear everything in the room next to us! We did not find any bears but saw deer and coyotes in Cades Cove. We saw a good show at the Bear jamboree.
I hope everyone is doing well.
We just got home from our trip and I am tired will write
more later.
Take Care
Pama
Saturday, January 10, 2004 4:17 PM CST
January 10th, 2003 is a day I will never forget. Dr. Watts confirmed that Deanna’s had indeed relapsed. What a heart-breaking day this was! I remember Deanna’s telling Pama, “Mom, if you’re going to cry, wait until you get home and go to your room”.
We knew what this meant but we still had hopes that a bone marrow transplant would be the answer. She had the bone marrow transplant but complications from the chemo and radiation was too much for her.
Our holidays were spent with family and Deanna’s name came up constantly. We miss her so much.
Pama spent this last week getting Nick outfitted for his first snow skiing trip. He went with his Boy Scout troop to Ober Gatlinburg Ski slopes for the weekend. I know he is having lots of fun!
Nick got an electric guitar for Christmas plus lessons. He and two of his friends are having fun getting together and playing music.
Thanks for continuing to check on us.
Deanna’s Mimi Forever
Thursday, December 11, 2003 2:33 PM CST
Today is Nicholas’s 15th birthday. Pama took him first thing this morning to get his driver’s permit. He is growing up so fast. I remember when Deanna went to get her driver’s permit. We miss her so much. She would be proud of Nick for getting his driver’s permit on the first try.
We are getting ready for the holidays. So many things remind us of Deanna. She loved getting ready for the holidays.
Wishing you and yours a “Happy Holiday Season”.
Deanna’s Mimi Forever.
Thursday, October 9, 2003 5:00 PM CDT
It has been a month since I updated this web page. Even though I haven’t updated, I have checked the messages. Thanks for continuing to check on us. I will try to do better in updating. It has been 5 months since Deanna lost her battle with leukemia. I miss her more everyday. I had never gone over a month with out seeing her. The emptiness is almost unbearable. Without the prayers and just talking to the “Good Lord” I don’t think I could make it. Life goes on. I can feel Deanna presents and I am so glad I have lots of memories to fall back on.
We attended the Kandles for Kids at Liberty Park. Dr. Watts, Deanna’s doctor did the candlelight ceremony. This was to honor the cancer survivors and to remember the one’s who lost the battle since September 2002. It was very moving. Dr. Castleberry was the speaker. Kelly, Sarah Anne’s mother gave the welcome. Pizza and cokes were enjoyed by all that attended. A drawing was held for a gift certificate to Wal-Mart. Nick’s name was drawn. I told him Deanna is still watching out for him. We saw friends from Clinic 5 and 4 Tower. Some that have lost a love one and some still fights the battle.
Pama and I went to a scrap booking retreat last weekend. We worked on our scrapbooks of Deanna’s wish trip from Magic Moments. Pama, Deanna, Nick and I went to Disney World in October 2000. We stayed at Give Kids the World. It was a wonderful trip. This is one of the many scrapbooks that I am working on. I have one for Nick with trips we have been on, one for Deanna with trips we made and I want to do one of Pama's first 18 years. This should keep me busy. This is something that Deanna enjoyed doing. She made a scrapbook with pictures of her and Nick. This is something he will treasure.Speaking of Nick, he is back in boyscouts after taking a leave to play football. He broke his arm last spring so that was the end of football. He went camping with the boyscout troup a couple of weekends ago. They are planning a ski trip to Gatlinburg this winter. He is growing up so fast. I know he misses Deanna so much. They were beginning to enjoy their teenage years when she relapsed. He has lots of memories to hold on to.
Please sign our guest book so we will know you have been here.Thanks for checking on us. We still need your prayers and friendship to help us through this difficult time.
We love ya!
Deanna's MiMi Forever
Friday, September 5, 2003 2:08 PM CDT
Thanks for checking on us. It has been four months since our precious Deanna became an angel. We miss her more everyday. Nick is back in school and is working on the yearbook. This means I will get to pick him up at school like I did Deanna when she worked on the yearbook. He plans on working in the office and in the library. He remembers how much Deanna enjoyed this. Pama and I have started back working on our scrapbooks. This is something Deanna liked to do with us. She had started a scrapbook about times with her brother.
Nick and I went to Pensacola Beach before school started. He went to see a friend that he had not seen in 2 years. We picked Tyler up and he stayed at the beach with us. They had a blast. They rode go-carts, paddle boats at Gulf Breeze, went to Jubilee’s on the Boardwalk at Pensacola Beach for dinner, skateboarded and went to the beach. It was a great weekend.
Thanks again for checking on us. Continue to remember us in your thoughts and prayers. Pray for the Bonner family. Meagan became an angel on August 30. She was a friend of ours from 4 Towers. (www.caringbridge.org/al/meagan)
Deanna’s MiMi Forever
Wednesday, August 6, 2003 6:50 PM CDT
August 6 – 3 months ago today, Deanna became an angel. No, it does not get easier. I miss her more everyday. She was a joy to be around. She was my granddaughter but she was also my friend.
Nick and I had a wonderful time on our trip to the mountains. We could feel Deanna’s presents everywhere we went. Pigeon Forge was their favorite place to go.
Pama took Nick to register for school last week. Summer is almost over. Last week was summer camp at Camp Smile a Mile. Deanna attended last summer and had a wonderful time. Amber, what did you sing at the memorial service at Camp Sam? I know it was beautiful.
Thanks for checking on us.
Deanna’s Mimi Forever
Thursday, July 17, 2003 3:22 PM CDT
Quick update by Mimi
I miss Deanna more everyday. After 16 years of being very close to her, there is an emptiness that is almost unbearable. Without the help of the Good Lord and prayers from my friends and family, I don’t believe I could make it. She was a joy, so precious – the Sunshine of My Life. I am so glad I have Nick to share the memories of Deanna. We are going to the mountains (Gatlinburg and Pigeon Forge) tomorrow when he gets out of summer school at 11:30AM. Deanna, Nick and I went there the first of August last summer. We had a good time. I will post some pictures when we get back.
Pama’s dad did not have the pacemaker put in. They did an EP Study found he did not need it. They will do more study to find out why he is having irregular heartbeats.
A real good friend of the family Wesley at caringbridge.org/al/wesleybethea is in the hospital with a fever. Pray for him and his family. Deanna met Wesley when she was a volunteer at Children’s Hospital and the whole family fell in love with him. Wesley and Deanna became real close friend and supported each other through some hard times.
Pama is going to Hattisburg, Ms this weekend. She needs to get away even if it is on a business trip. She continues to work and is getting the boxes unloaded from the move. Remember her in your prayers.
Thanks for checking on us. Please sign guestbook so we will know you have been here.
Deanna’s Mimi Forever
Friday, June 20, 2003 10:04 PM CDT
Six weeks ago today I came home from Deanna's funeral and I miss her more everyday. I miss her calling me on the phone and saying," Hi, whatcha doing?" and always telling me she loved me before she hung up. I was there when she took her first breath and was with her when she took her last breath. I know she is not hurting anymore but it does not keep me from missing her so much.I also hurt for Pama and Nick.
Nick and I went to Memphis last week end. Deanna and I went in January and were planning to take Nick and Pama during Spring Break but after Deanna relapsed in January we did not get to go. Last week when I told him we were going somewhere for the weekend, he asked me to take him where I took Deanna. So I said a prayer and away we went. We had a good time and we talked about Deanna some. It was a good trip.
We went to Graceland Saturday and to Peabody Place Saturday night. Left there around 10:00PM and Nick had to read map and tell me where to turn while I drove back to our room at the Homewood Suites-Southwind. Quite a map reader! Good job, Nick!
We plan to spend some time in Pigeon Forge and Gatlinburg after Nick gets out of summer school July 18. Looking forward to this.
Pama's dad came home from the hospital. Hasn't had surgery yet. He has an irregular heart beat and may have to get pacemaker. Going to DR this week to find out more.
Pama is keeping busy as usual. She is working everyday. She has alot on her. Naturally I worry about her. Pray for strength to make it second by second. I think I'm o.k. one second and the next I might be falling to pieces. My mom is 83 years old and she was real close to Deanna. This has been real hard on her. Especially since Deanna was on dialysis. My dad passed away 5 years ago this past Feb and he was on dialysis for 5 and 1/2 years. My mom took him to dialysis 3 days a week. I live with my mom so Deanna saw her alot when she came to spend the night with us. She spent the weekend with us the weekend before she went into the hospital for the last time. Pama was moving to another apartment because the air-conditioner had leaked and the carpet had to be replaced. Deanna's things are still packed up from the move.She didn't want anybody unpackng her things because she wanted to do it herself when she got out of the hospital. That was not to be. God had other plans for her. Deanna, we miss you so much!
Thanks for checking on us.
Deanna's MiMi Forever.
Sunday, June 1, 2003 10:29 AM CDT
On May 6, the day that Deanna became an angel, Pama's dad, B.J, was admitted to the hospital. He had two stints put in the next morning. There was 95lockage. He was released from the hospital the day of the visitation but the doctor told him not to attend but that he could go to the funeral for a little while. He got worse at the funeral and went back to hospital that night. Pama left my house the day of the funeral around 7:30PM by the time she got home and was ready for bed she got the call about her dad.
She got dressed and went to the hospital and was there until 5:00AM.
Her dad had a heart attack sometime between the time he was release until he got back to the hospital. His blood count dropped to 18. He had to have 4 unit of blood. Didn't know where he was bleeding. He was released from the hospital here and was given the o.k. to travel back home to Dallas, Texas.
Judie's son-in-law,Mike flew in and drove them home. The doctor's here made an appointment with doctor in Dallas. He went to the doctor there on Thursday and had to have 2 units of blood.He was admitted to the hospital. Blood vessals are leaking blood. His electralyts are off and he has an irregular heart beat. Doctors here said he will need open heart surgery soon for blockage. Pray for Pama and Nick as they face more difficult days ahead. Now you know where Deanna got her strength. Her mom is amazing.
Remembering Deanna:
One of Deanna's favorite doctors in Clinic 5 called her the "Social Butterfly". She would sign in at clinic and instead of waiting in waiting room she would be all over the clinic talking with patients, helping hold a child's hand while getting stuck or just staying with a child while the parent went to get their child some breakfast or help at the front desk. She loved you guys so much. So remember Deanna as you see a butterfly fluttering around you.
Deanna's Mimi Forever.
Wednesday, May 7, 2003 1:55 PM CDT
On behalf of Deanna. we would like to take this opportunity to thank the doctors and nurses at Children's Hospital,Clinic 5 and 6th floor Stem Cell Unit, and all others for their loving care of her over the last 3 years. We love you very much. Thanks for all the prayers, cards, phone calls, visit, meals and just being there with us through this very difficult time. Deanna loved you all and never complained about going to clinic or checking into the hospital. You were her extended family and she loved you all very much. You know that she will be with you all everyday watching over you as you treat the other children.
Thanks to all of you who have followed her from day to day on her Caringbridge web page. Your words of encouragement, love and prayers were of much comfort to Deanna and her family. We'll never forget you.
If you would like to join with us in Celebrating Deanna's Life the arrangements are as follows:
Visitation wiil be Thursday, May 8, 2003 from 5-8PM at Lakeshore Memorial Chapel Funeral Home. Located @ 131 Oxmoor Court, Birmingham, AL (205)945-1060
Services will be Friday, May 9, 2003 2:00PM at Metropolitian Church of God located at 2800 Metropolitian Way (Off Old Rocky Ridge Road, behind the Fire Station)Hoover, AL 35254 (205)795-4448.
Graveside services to follow @4:00pm at Vincent Cemetery.
Tuesday, May 6, 2003 11:07AM CDT
Deanna became an angel this morning at 9:10AM.She fought a hard battle but God needed her more in Heaven.
We will update with the arrangements later.
Love ya!
Mimi, Pama, and Nick.
Tuesday, May 6, 2003 5:25 AM CDT
DAY +22
Deanna was having a lot of pain when Pama left at 10:00PM last night. She didn't get much relief over night. We were called to come down at 5:15AM this morning. When we got there they had put a breathing mask on but it was not helping. She still was gasping to breath. By 6:00AM they had to put her on a ventilator. She was bleeding from her mouth but not sure if coming from where they put ventilator in or if something else is going on.
Continue to remember us in your prayers.
Will update more later.
Love Ya!
Mimi, Pama, Deanna and Nick
Sunday, May 4, 2003 10:24 PM CDT
DAY 20
Sorry for late update. We had some problems with computer plus sometimes we are so tired by the time we get to the room our eyes are crossed. We will try to do better.
Deanna is still in PICU, still on dialysis. The decision was made to put a feeding tube in her nose so they can let the liver rest from the TPN feeder that she has been on for a while. Dr Sandi is starting her on some foods by mouth also. We are trying to jump-start her digestive system so she can have a BM. This could help her bilirubin and ammonia level that in turn would help her liver. She is very jaundiced. She received platelets today. Platelet count is 53,000. Her WBC count is 14,200. Dr. Sandi said she continues to amaze her. She said she is some better today.. Blood pressure is normal. Heart rate is good. Lungs are better.
Nick called and wanted to spend to night with Nannie and me. I picked him up and we went to a Mexican restaurant. Then on to my house. We watched Nashville Star and our guy Buddy Lewis won. Nick went to bed at 10:00PM and slept until 1:00PM Sunday afternoon. Then we went to Target stocked up on some snacks and food for him while Mom is at the hospital. We enjoyed our time together. He misses his Mom and Deanna.
Please continue to remember us in your prayers.
Love Ya!
Mimi, Pama, Deanna and Nick
Thursday, May 1, 2003 10:39 PM CDT
Today has been a long day. It seems like we have just had to wait and wait. At 5:00AM they were having a crisis with a child in PICU and we could not go in to visit.
We did go in at 10:00AM and Deanna looked alot better to us.
The doctors said that her levels (amonia & bilirubin) had not gone up any last night which is good because they had been going up every night. But they are still high, now we need them to start going down. She was breathing a little better, they reduced her oxygen from 15 to 8. Her kidneys are putting out a little bit. So a little improvement is wonderful we just have to keep it up every day!
Tonight when we went to see her at 8:00PM they would not let us in again they were having another crisis. A family had a child in a wreck.....they need our prayers also tonight.There is another angel in heaven.
We did finally get to go in at 9:30 she was sleeping.
I had to wake her up to do mouth care and take her medicine. She fell right back asleep. So we didn't stay long.
Thank you all for all the thoughts, prayers, visits, phone calls, cards, meals, gifts, and everything else I forgot to mention. It really helps us get through this to know how many friends we have.I guess we better get some sleep....we have to go see her at 5:00AM. And we all know I like my sleep.
Love you all,
Pama
Tuesday, April 29, 2003 11:25 PM CDT
No change as far as doctor reports. As long as she is sleeping she is ok but when she is awake she gets very upset and tries to take off oxygen mask. She also tries to pull at dialysis catheter. She gets confused.
They will do a chest x-ray tomorrow to check fluid in her lungs. She has to be still because when she moves it causes the dialysis machine to beep and they have to stop it and reset it. When she was in Stem Cell Unit she was told to move her legs so they would not get where she could not walk. This is confusing to her because now they are telling her to not move her legs. She told them she had to move her legs so she could go back to her room.
Her WBC count today is 16,000. We like to see counts like this.
Thanks for checking on us. Will try to update tomorrow after we talk with the doctors. Got to go and get some sleep.
Deanna and Nick's Pops and Nana arrived from Texas around 5:45PM this evening. Pops is feeling better and will be here awhile.
Love ya!
Mimi, Pama, Deanna and Nick
QUICK UPDATE
Wednesday, April 30, 2003 5:30AM CDT
We went down to PICU to see her at 5:00AM. Not as restless as she was last night. They had bumped up her morphine and gave her some Ativan.
Chest x=ray and an ultrasound of liver and kidney later this morning.
Her WBC count this morning is 21,000. Her platelet count is 43,000. She will be getting platelets today.
Will let you know what we find out later today.
Thanks for keeping us in your prayers.
Mimi,Pama,Deanna and Nick
Monday, April 28, 2003 7:45 AM CDT
Doctor says kidney and liver levels have not lowered any.
They are higher. Output is lower. That is the bad part.
Her counts are up.....Will call in kidney specialist.
Will let you know more later today.
10:45Pm
Doctors said after looking at report from ultrasound may not be VOD afterall. We had prayed for them to be wrong. She is in PICU and is on dialysis 24 hours a day. They were going to pull 7 liters the first 24 hours then 1 liter per day over the next 7 to 10 days. They really are not sure what is going on with her liver.
We still need direct donors for O-negative platelets. They would like to keep her platelets at 50,000. Her WBC is 5,000, yes five thousand. This is great for normal is 4,000 to 11,000.
Got to go get some rest. Pama and I are sleeping in her hospital room while she is in PICU.
Keep praying for complete healing. We will update again tomorrow.
Thanks for checking on us.
Love ya!
Mimi,Pama,Deanna and Nick
Saturday, April 26, 2003 10:56 AM CDT
Now we have another battle to fight. We knew Deanna was getting VOD, one of the complications of bone marrow transplants. It started out mild and is now moderate to severe. The next few days are very critical. We need platelets everyday. So if you know anyone that is 0 negative or has the RH negative factor and would give platelets please have them call the Red Cross and make an appointment to give. Phone 918-1000 x2904 Mon - Fri /X2115 Sat & Sun.This is very important for her recovery.
We had good news this morning around 7:00 AM. Dr. Lucas came in and told her we have grafting. WBC 280. As her counts go up, her mucositis should get better. She had to be catherized because she is unable to void on her own.
Please pray for Deanna in this very critical time. The family could use a pray for strength at this time.
Will update more later.
Love Ya!
Mimi, Pama, Deanna and Nick
8:45 pm Tonight Deanna's counts have gone up some. Her platelets have doubled they are 37,000! Yeah!
Her WBC is at 330, so things are coming up. Her blood pressure went up alot and they gave her something to make it come down. Now it is doing good and her heart rate is up. The doctor said it was to be expected because of the medicine she took. Don't ask me which one. She is on so many. We still need alot of O- platelets.
Keep those prayers coming.
Pama
Friday, April 25, 2003 9:39 PM CDT
DAY +11
This morning Pama pushed the nurse call button, she didn’t know the button got stuck which caused the alarm to go off and this brought a room full of people wanting to know,”What’s wrong Deanna”? Deanna slept through this and Pama wanted to know what was going on.
Deanna started physical therapy today. She walked around the nurse’s station 3 times this afternoon. She is doing great taking her medicine. Platelets again today. Her mouth was not bleeding as bad today. The platelets are helping this. Deanna is having problems emptying her bladder. Her stomach is hurting and swollen. The doctors are trying to figure out what is going on.
We are still praying for an early grafting of Nick’s bone marrow. Monday will be the 14th day.
Pama stayed with Deanna today. I will be here tonight and tomorrow.
Thanks for checking on us. Continue to remember us in your prayers. Remember the troops and their families. Pray they return home soon. Pray for our friend, Taylor whose is home after his transplant.
Love ya!
Mimi, Pama, Deanna and Nick
Thursday, April 24, 2003 2:18 PM CDT
DAY +10
Deanna received platelets this morning. Platelets were
7000. She finally got her mouth to stop bleeding. It looks awful under her tongue. It looks like raw bloody meat. Just breaks my heart to see her suffer like this. We were told she would get alot worse on about the 10th day. This is Day +10. So she is right on schedule. It is still hard to swallow her meds but between the doctor, her nurse Renne and Pama, they came up with a way for her to do this. Here is what they do:
1.Give nausea medicine.
2.Swish Magic Mouthwash
3.Spray Cloraseptic in mouth
4 Mix crushed pill and inside of capsule with warm sweet tea. Put in syringe and squirt in mouth immediately after doing a morphine push.
This worked. Yea!
Yesterday when Deanna needed platelets, it took from early morning until 3:30PM for platelets to arrive at the hospital. They were having problems locating platelets with the RH negative factor. Pama talked with the Red Cross and made arrangement for people to donate platelets for Deanna. If you are 0 negative and not related to Deanna and would like to donate, call the Red Cross and make an appoint to give. It is only good for 3 or 4 days.
Nick is feeling better everyday. He went back to school Tuesday. His school was out Thursday, Friday and Monday. That worked out good so he didn't have to miss as much school.
Thanks for checking on us. We enjoy reading the messages. I read some to Deanna today. Somedays she does not feel like listening but today she did. She likes to know who signed her guestbook.
Pray for an early grafting so Deanna's counts will come up and she will start to feel better.
Will try to do better with updating.
Love ya!
Mimi, Pama, Deanna and Nick
Tuesday, April 22, 2003 7:59 PM CDT
DAY +8
Sorry for the delay in updating.
Deanna felt somewhat better today.When I got here at noon she pretended to be sleeping so I was real quiet but when I got close to her bed she opened those pretty eyes and said,"Boo" and laughed. She is trying to feel good.The mucositis is still causing her to spit up blood.Her throat is very sore and it is very hard for her to swallow. She does the suction most of the time. One of her meds has to be by mouth. This is very difficult. Her nose did not bleed today. She got platelets twice yesterday. Her WBC was 110 today but that can be off by 100 or so.They did an ultra sound of her liver, bladder and kidneys. Found some fluid in the lining of her bladder. She has not been hurting or running a fever so maybe this doesn't mean an infection.Dr. Lucas said it could be from the chemo. Can be serious. Started her on Flagyl. Will do another ultra sound next week and will keep check on her liver.
Deanna's Aunt Becky and Aunt Trisha stayed with her yesterday. Pops stayed until noon today. I sent Pama home tonight so she could get a good night's sleep. I know she is tired.
Deanna walked around the nurses station 3 times today. Way to go, Deanna! It was her idea.
Thanks for stopping by.Continue to remember us in your prayers. Hope you and yours are doing well tonight. Hug your babies tight because they are so precious.
Love ya!
Mimi,Pama,Deanna and Nick
Sunday, April 20, 2003 8:10 AM CDT
Happy Easter!
It hasn't started out to be a good day but we know it will get better. Sorry for no update yesterday. I went home to get some sleep Friday night. Which was wonderful to get a whole nights sleep. Got up busy Saturday morning, went to see the Easter Bunny for Deanna and Nick. I hadn't had time to before. He wondered if I had forgotten. Nick and I spent a little time together, then came to the hospital about 4:00.
MiMi had spent the night with Deanna and Pops came and spent the day with her. She had been running a fever off and on. When we arrived she had a nose bleed. She had to have platelets. About an hour later it happened again and had platelets again. She also ran a fever of 101.3. Every time any of this happens she has to have tylenol and her throat is very sore. They said it was ten times worse than strep throat. So any of us that has had strep sure doesn't want this. We woke up this morning at 5:00 am with Deanna spitting up blood. She must be bleeding in her throat. They just now started her platelets and she is still trying to get her tylenol down. She is not to happy now.
Will write more later today....
Friday, April 18, 2003 4:23 PM CDT
Gee, it is already 1:30PM, boy does time fly. My thoughts were to update as soon as possible this morning. By the time I did laundry, Deanna’s medicines, her mouthcare and encouraging her to do the puffs to keeps from having pneumonia, begging and pleading plus encouraging then using tough love, I finally talked her into walking around the nurses station. I was real proud of her for trying. She is sleeping now.
I thought I would never get here this morning due to the sinkhole on Highway 280. Both lanes were blocked west bound with only the emergency lane open. I went old 280, then crossed over 280 and went 41, then Hugh Daniel Drive back to 280. Pama was waiting for me so she could go to work. Always something to detain you on 280.
Deanna seems to be resting better today. She is not as nauseated since they put her back on Zofran.Her mouth and throat are real sore. She is doing her mouthcare even though I know she has to physic herself up to do it. I’m proud of her for trying.
COUNTS: Deanna Platelets are 32,000 (normal is 150,00-400,000. She got platelets yesterday. Her WBC is 160 (normal is 4,000-11,000. This is her white blood cells that are still dying from the chemo and radiation. Her WBC should bottom out to 0 sometime soon.Then sometime between 10 and 30 days from transplant, we should see her counts start up.
Deanna received platelets yesterday so this brought her platelets up. Her WBC should bottom out sometime this week. Can’t wait to see them go back up. Dr. Lucas said she is still doing well. We know she has to get worse before she can get better. She is not eating and is losing weight but we knew this would happen since her mouth is hurting and she is nauseated. She is getting nutrition and fluids through her Hickman catheter.
The nurse told us that the vomiting and diarrhea will get worse around the 10th day after her last high dose of chemo which was on Saturday, April 12. We are not looking forward to that. We are taking one day at a time and trying to focus on, “And this to shall pass”.
Pops stayed with Deanna yesterday until noon and then Aunt Becky came and stayed with her until 4:00PM. Becky left at 4 twenty and did not get home until 6:00PM. The traffic on 280 is unreal and gets worse.
Deanna is up from her nap. She took her temp and it was 100.8. Dr. Lucas told us she might spike a temp. Cindy, Nurse Practitioner came in. Said they were starting her on antibiotics.
Thanks for checking on us. Don’t forget to sign her questbook.
Love ya!
Mimi, Pama, Deanna and Nick
Wednesday, April 16, 2003 10:24 AM CDT
Just a quick update for those waiting to hear. When I got here this morning, Pama told me she was to tired to update last night. So I will quickly give a run down on what is going on.
Deanna's blood pressure continues to be high and her respiration count is still below 20. They did go ahead with the morphine pump yesterday. She didn't sleep very much last night because she was nausated and vomiting. As I write this she is asleep. Her throat was to sore to swallow one of her meds. She did her mouthcare this morning.Her mouth has not got bad yet. We have been informed that it is not time for it to get bad.That is usually about 10 days after her last Chemo which was on Saturday before transplant. Her mouth is white inside. From what I understand, the mucositis (mouth sores) can be very painful.
Pama went home yesterday afternoon to check on Nick.Nick said he felt like he had fallen off the Empire State Building instead of just falling on his backside skating. He didn't sleep good the first night. Pama took him to Target, put him in a wheelchair and let him pick out a new Playstation 2 Game. That should keep him happy for awhile.
Nick and Pops just came in to visit with Deanna so I think I will go eat lunch while they are here. Pama will update again tonight.
Thanks for checking on us.
Love ya!
Mimi
Check out the pictures on:
www.homepage.mac.com/beckyhyde/Deanna
See movie clip then click on April 14, 2003 Deanna's Trans
Thanks, Aunt Becky!
Monday, April 14, 2003 4:50 PM CDT
TRANSPLANT DAY "0"
10:25PM UDATE AT BOTTOM
Well, we finally got it done. We had a long morning. I went home last night to stay with Nick and bring him to the hospital this morning. Mi Mi stayed with Deanna. We had to be here at 6:00 am but we were about 15 minutes late. Jennifer, the Child Life Specialist, got here just in time to go back with Nick. She stayed with him the whole time and checked in with us to tell us what was going on. They took him back to the operating room at 7:20 and did not come out until 10:15.
Nick and I got up to Deanna’s room at 11:00 just before the blood got here. Aunt Trisha, Aunt Kay, & Aunt Becky were here and had a bed made for Nick to rest on. Pops and Mi Mi were here too. We were all going back & forth to check on both of them. We got Nick settled in his bed just in time for the blood to get here. We all took lots of pictures and had lots of fun. We are going to try to get some of them posted. After the blood was going in her blood pressure has shot up. They said this is normal and if it doesn’t come down she will have to be put on blood pressure medicine. She was almost through getting the blood when she had a reaction to it. She broke out in a rash all over and started itching. They gave her atarax and it soon went away .She is still getting blotchy ever so often then it fades away.
They just said she couldn’t have anything for pain- her heart rate is down(53) I am not sure what is normal. And also her respiration is down to 12 and it does not need to go below 10. The doctor will be in to see us soon. I will write more later and post counts...
UPDATE
10:25PM We have had a long day. Deanna had to start taking blood pressure medicine. It still has not gone down yet. Her heart rate and respiration has come up a little but they will monitor her all night.
I talked to Nick and he is a little better. He said he could walk better but he would be glad to get the big bandage off. Pops will bring him here at 8:00am. We are gonna try to get some sleep now. I got to see Kim (Taylor's Mom)in the hall tonight. She looked good, and Taylor seems to be improving!
Isn't that great! We need prayers to help this transplant work and to help Deanna's pain. She has done really great tonight. I am so proud of both Deanna and Nicholas they have been very
strong kids. I love them bunches!
Love you all,
Pama
Sunday, April 13, 2003 12:35 AM CDT
Last night was a long night. Deanna had to get up every 2 hours to go to the potty. She has to do this to flush out the chemo she has been recieving. So it made for a tiring night. This morning they said she was doing good and she will only have to get up a couple of times tonight. She is still realy nauseated and the ativan is keeping her sleeping when she can have it. She is asleep now. My dad "Pops" came in from Texas to stay with us a couple of weeks. He will be watching Nick next week while he is recouperating. He is here at the hospital with Deanna and I now. We were so glad to see him. I am going home to spend the night and bring Nick in the morning. He has to be here at 6:00 am. The procedure will be done at about 7:30 and then will be filtered so no bone fragments will be in it. Then it will come up to Deanna and be given to her in her Hickman just like when she gets blood. Her counts are going down like they are suppose to. I will start posting them, this is how they were at the start and on the 11th.
-----------4-7-03-------4-11-03---------Normal
Platelets---388-----------160----------150-400 thousand
Hct----------36.8---------24.2----------34-44%
Hgb----------12.1----------7.8----------12.0-15.2
RBC----------4.05---------2.66----------3.80-5.20
WBC---------3.90---------1.11----------4-11 thousand
K--------------4.0----------3.6-----------3.5-5.2
Well, tomorrow is the big day. Mimi will be here with her later. I will update in the am as soon as possible.
Love you all,
Pama
Saturday, April 12, 2003 10:45 PM CDT
Well it is late and we are now through wil our daily "chores". I got here at 11:30 after a night at home. I enjoyed seeing Nick and K.C. I sure miss them. Deanna has been feeling bad all day. She keeps having stomach pains & diarreah. They gave her some morphine and she is resting now. Gotta go get some sleep...we have to get up every 2 hours. Pray for Deanna's pain to not be bad.
We love you,
Pama
forgive my spelling i'm not sure what is right, right now
Saturday, April 12, 2003 9:54 AM CDT
I finally put my head on my pillow around 11:00PM. Did I sleep? No! The iv started beeping so I got up and called the nurse. Then back down. Almost 12:00PM. Time to do Deanna's mouthcare and time to get her up to go to the bathroom. That is every two hours round the clock while on Chemo. This is to make sure she emptys her bladder and doesn't let the chemo stay in her and damage her kidneys and whatever else. We got through with that. Guess what, it was time for iv to beep again because she had Zofran through central line. Then it beeped again for the flush.We're pushing 1:00AM by now and it's almost time to get Deanna up to potty again.She went to potty at 2:00AM and as soon as we got comfortable. Here goes the beeper again. It was time to put up a new fluid bag. Remember we have to do mouthcare again at 4:00Am and go to the bathroom again. Well by 4:00Am, Deanna did not want to do the 4:00AM mouthcare. She just flat refused. I begged, pleaded and then she got mad. I guess she thought I better do it so she will leave me alone. It was 4:45AM before we finished. The beeped went off again before 6:00AM. Up again at 6:00AM to potty. Back down. Then Dr. Sandi came at 6:30AM. She said that Deanna was doing good. Nothing happening that was unexpected. She is on call this weekend. She and Dr. Lucas are her doctors.
While I am writing this, Deanna's friend, Jaclyn and another volunteer came to visit. Jaclyn was Deanna's volunteer partner last year at Children's Hospital. They are laughing and having fun. Good to see her laughing after the night we had.
Pama is on her way and she will stay with her tonight. I will come back Sunday night and be here Monday.
Thanks for checking on us.
Love ya!
MiMi, Pama, Deanna and Nick
(Don't forget to read last nights update.)
Friday, April 11, 2003 10:46 PM CDT
UPDATE BY MIMI
Deanna has just gone to sleep. It has been a very long day. She had Cytoxan (Chemo) this morning around 9:00AM. No vomiting but she has been sick at her stomach all day.Bless her heart! She was doing her mouth care in between trying to not vomit. The mouth care is very important and she is aware of this.The mouthcare is done around the clock so they will be in here to wake her up at 12:00 (midnight) and again at 4:00AM. Not much sleep around here.
Pama worked until noon then picked Nick up and brought him to pre-admit for the transplant on Monday. He has to be at the hospital at 6:00AM. He also met with Jennifer from Childlife. She explained some of what will be going on Monday. She is going to go in surgery with Nick.
As some of you know Pama moved the weekend before Deanna came to the hospital so she did not get much done. Her dad is coming in tomorrow from Texas so she went home tonight to get ready for him. She will be back at noon tomorrow and I will go to work.
It is getting late and they will be in here to do mouthcare before I know it.
Thanks for dropping by. Please keep us in your prayers as we continue to fight this battle here and remember the ones fighting another battle far from here.
Love ya!
Mimi, Pama, Deanna and Nick
Thursday, April 10, 2003 9:51 PM CDT
Today has gone fairly smoothly. It started off with Deaanna's Blood Pressure being too low so the chemo did not start on time. They gave her some saline to get it lowered. Aunt Trisha and Aunt Becky came to stay with Deanna while I tried to get a few hours in at work. It was really good to see them. I enjoyed the visit very much. After the chemo started and I saw that everything was okay and Deanna did not seem to have any problems I left them.
They said she was nauseated and was given ativan, that makes her really sleepy so she slept most of the time and didn't give them any problems.
(Thank goodness)
She did not eat much today. Just a little orange while they were here. Tonight she just finished a small bowl of soup. I guess I will just have to be happy with that. She did finally get her mouth care in tonight. She did this morning but slacked off at noon. Oh well maybe she will do better tomorrow. She took a bath tonight, seems to make her feel better at night before bedtime. We have to change her sheets every night too. So we just finished our daily stuff and I am ready to hit the hay. Oh yeah, how could I forget
my Nannie made me cornbread, butterbeans, & squash! Boy was it good! Makes you really appreciate good food when you don't get it. Tomorrow is another daay of a different chemo called cytoxan. Will let you know how that goes.
Love you all,
Pama
Wednesday, April 9, 2003 9:58 PM CDT
Today was a pretty good day. We just got finished with our daily "chores". Once I get all the times down I will write what all we do daily. This morning we got up early to go have radiation and the machine was broken. Boy that makes you feel good. So we came back to the hospital for a few hours to wait. They had us really nervous because she has to have two treatments and they said if it wasn't ready by 10:00 they wouldn't haavve time to get both in. If that happened everything would be thrown off time. All medicines, chemo and all are timed out. Anyway we went back and she had it done around 10:30 and then they stayed late and she had the other at 5:30. So it is all in and chemo will start around 9:00 in the morning. It will last a couple of hours. We will let you know about that tomorrow.
I am pretty tired I ran around here and in between I went and worked a couple of hours while MiMi was here with Deanna. I'm gonna see how chemo goes to start with then I'm gonna try to work a few more hours.We shall see....
Love you all,
Pama
Tuesday, April 8, 2003 5:30 PM CDT
Today is going better than it did yesterday. Although this morning we did not think it was going too. Radiation was at 8:00 am so we have to be there earlier and she doesn't get her zofran until 8:00. So as she was getting the radiation she got very nauseated....well on the way back the stem cell van got christened...oh well. Deanna was upset about it and kept apologizing and was worried about the driver because it made her a little quezy. Just like her to be worried about someone else. She did feel better after she got sick. After she got back to her room and got zofran she did really well. Before she went back for the 4:00 dose she recieved her medicine first and that made all the difference. She was back to sticking her tounge out at me while I watched her on camera.
She has been watching "Bedknobs and Broomsticks"
this afternoon and some soap operas. We made a list of stuff to get from the grocery store. I just hope she still wants it by the time I go tomorrow. She is in very good spirits. She had a friend come by. Wesley came to the door and knocked they got to wave at each other and thats it. It was good to see him...he looks so good. Wesley is a friend she meet at the hospital while he was in stem cell having his transplant. He was here for his clinic visit.
Oh, Deanna did finally start her mouth care. I think listening to me tell her about how much trouble Taylor is having helped her get started. So thank you Kim for telling us all about it! We haven't got to see any of our friends up here but we check their sights daily. We all stay so busy I wonder if it will calm down some when we don't have to go back and forth to UAB for radiation. Only one more day of radiaation then she will start her chemo. Until then things are going smoothly. We really miss Nick and K.C. and of course Pepper & Lacy. I hope they are enjoying our new home. For those who don't know we moved to a new apartment over the last week and weekend. It is roomier, nice and clean with fresh paint and clean carpet! Yeah! So we left them to finish unpacking....they are doing a great job but we wish we could be there to help and enjoy it.
We love you all! Please keep signing the guest book we enjoy reading it and let us know what is going on with everyone.
Love,
Pama
Monday, April 7, 2003 9:05 PM CDT
Well today was a busy day. Deanna had her radiation treatments at 8 am and 4pm today. It was a very uncomfortable process but it did't go too badly. She cried sometimes because she was hurting. But then I was watching her on camera (you can't be in the room with her)and she started making faces and sticking her tounge out at me. At least she still has a sense of humor.
She has been hurting all afternoon with aches and pains mostly in her legs. Tonight her jaw has started hurting so much she could not eat her soup or drink her juice. She is asleep now and I hope she can rest tonight. Tomorrow will be another day with radiation twice a day. Hopefully she will feel better by then.
Our room is pretty good size. Ya'll know how she is about wanting a "big" room! Oh and we couldn't find any soup she wanted so of course she sent me to 4 Tower! And of course they came through with the soup! Thanks 4 Tower! I am sure we will come to know and love stem cell, everyone has been very nice and helpful. It's hard to get use to a different routine. But it is strange to be somewhere else in the hospital.
Keep us in your prrayers. We love you all!
Pama
Friday, March 28, 2003 6:58 AM CST
Happy Birthday Deanna!
I can’t believe my little girl is “sweet 16” today!
Baby girl I hope your day is wonderful for you!
All my love,
Mom
Thursday, March 27, 2003 3:48 PM CST
UPDATE BY MIMI:
Pama said Deanna slept all day yesterday except to wake up and eat. We're glad she wants to eat. I am staying with her today.She sat up in bed this morning when I got here and was ready to start packing things in her room.Of course, she was the supervisor and I was the packer. We had fun going through her clothes and sorting what she was keeping. She said," We'll have to go shopping when I come home from the hospital". Typical woman! She loves to shop.
Yes, for those of you that don't know. Pama is having to move to another apartment in the same complex. The carpet in her apartment has to be replaced. Due to the timing of the transplant, it is better to change apartment.
Deanna goes to the Stem Cell Unit on 6th floor of Children's Hospital April 7.She will have TBI radiation at UAB on April 7, 8, and 9. They will shuttles her to UAB twice a day for the three days.
She will have: Chemo(Etopophos) on Thursday, April 10th. Chemo (Cytoxan) on Friday, April 11th and Saturday, April 12th then rest on Sunday, April 13th.
BONE MARROW TRANSPLANT ON Monday, APRIL 14TH.
She will be in the hospital for 4 to 6 weeks. It takes anywhere from 10 to 30 days for Nicholas's stem cells to start grafting(this means the bone marrow begins to make normal cells) and hopefully no more Leukemia. We have a long way to go so we just take one day at a time and enjoy the times that she feels good.
Nicholas went for more blood work and evaluation on Friday, March 21th. We are so proud of Nicholas for doing this for his sister. He is a very special young man. He is a perfect match and will be the Bone Marrow Donor.The day of transplant they will take Nick's bone marrow from both hip bones. This will be processed and put in bags.The stem cell product that looks like blood, but thinner and redder, will be given through the Hickman catheter that Deanna had put in Tuesday, March 25th. Dr. Sandi told Nick that it is possible he will be awake in time to be in the room with Deanna when she receives the stems cells just like she would receive blood through her Hickman cathether.This can take from a few minutes to several hours. All this is so mind boggling, I am just glad someone was smart enough to figure all this out so that we have another way
to fight
this battle. The battle is not over after transplant. Deanna will have no way of fighting infections because of her low white blood counts. She will be in isolation with a special air filtration system in the room.We are trusting that all will go well.
She has rested good today. We ordered pizza, bread sticks and wings for lunch. This is the eve of her 16th Birthday. Pama just called me and will be a little late. Has to run by the clinic and pick up prescription and go to pharmacy at hospital to get it filled. Bless her heart! She just goes in a run. She had one more place to stop. Then when she gets here, we are going to pick up a special surprise for Deanna birhday which is tomorrow, March 28th. She was borned on my sister, Becky's birthday. That was real special as Becky did not have any girls. I didn't have any boys so my sisters and I share our children. My sister, Kay's grandsons call me grandmother sometimes. I guess I look like a grandmother because they call Kay( Mawmaw).It is so nice to have a big family. Even though I just had one child, Pama, Deanna and Nick have a big extended family.Deanna has lots of friends and family pulling for her. She is a very special young lady.
Thanks for all the thoughts and prayers.
We love ya!
Mimi, Pama, Deanna and Nicholas
--------------------------------------------------------------------------------
Thursday, March 27, 2003 3:48 PM CST
UPDATE BY MIMI:
Pama said Deanna slept all day yesterday except to wake up and eat. We're glad she wants to eat. I am staying with her today.She sat up in bed this morning when I got here and was ready to start packing things in her room.Of course, she was the supervisor and I was the packer. We had fun going through her clothes and sorting what she was keeping. She said," We'll have to go shopping when I come home from the hospital". Typical woman! She loves to shop.
Yes, for those of you that don't know. Pama is having to move to another apartment in the same complex. The carpet in her apartment has to be replaced. Due to the timing of the transplant, it is better to change apartment.
Deanna goes to the Stem Cell Unit on 6th floor of Children's Hospital April 7.She will have TBI radiation at UAB on April 7, 8, and 9. They will shuttles her to UAB twice a day for the three days.
She will have: Chemo(Etopophos) on Thursday, April 10th. Chemo (Cytoxan) on Friday, April 11th and Saturday, April 12th then rest on Sunday, April 13th.
BONE MARROW TRANSPLANT ON Monday, APRIL 14TH.
She will be in the hospital for 4 to 6 weeks. It takes anywhere from 10 to 30 days for Nicholas's stem cells to start grafting(this means the bone marrow begins to make normal cells) and hopefully no more Leukemia. We have a long way to go so we just take one day at a time and enjoy the times that she feels good.
Nicholas went for more blood work and evaluation on Friday, March 21th. We are so proud of Nicholas for doing this for his sister. He is a very special young man. He is a perfect match and will be the Bone Marrow Donor.The day of transplant they will take Nick's bone marrow from both hip bones. This will be processed and put in bags.The stem cell product that looks like blood, but thinner and redder, will be given through the Hickman catheter that Deanna had put in Tuesday, March 25th. Dr. Sandi told Nick that it is possible he will be awake in time to be in the room with Deanna when she receives the stems cells just like she would receive blood through her Hickman cathether.This can take from a few minutes to several hours. All this is so mind boggling, I am just glad someone was smart enough to figure all this out so that we have another way
to fight
this battle. The battle is not over after transplant. Deanna will have no way of fighting infections because of her low white blood counts. She will be in isolation with a special air filtration system in the room.We are trusting that all will go well.
She has rested good today. We ordered pizza, bread sticks and wings for lunch. This is the eve of her 16th Birthday. Pama just called me and will be a little late. Has to run by the clinic and pick up prescription and go to pharmacy at hospital to get it filled. Bless her heart! She just goes in a run. She had one more place to stop. Then when she gets here, we are going to pick up a special surprise for Deanna birhday which is tomorrow, March 28th. She was borned on my sister, Becky's birthday. That was real special as Becky did not have any girls. I didn't have any boys so my sisters and I share our children. My sister, Kay's grandsons call me grandmother sometimes. I guess I look like a grandmother because they call Kay( Mawmaw).It is so nice to have a big family. Even though I just had one child, Pama, Deanna and Nick have a big extended family.Deanna has lots of friends and family pulling for her. She is a very special young lady.
Thanks for all the thoughts and prayers.
We love ya!
Mimi, Pama, Deanna and Nicholas
Wednesday, March 26, 2003 7:32 AM CST
I AM FINALLY UPDATING!
Deanna went to Children's Hospital yesterday for out-patient surgery. Her double port was removed from her left side and a Hickman was put in on the right side. It is just above her breast and kind of under her arm. She is really sore and is beginning to move her left arm but the right side looks as if it will take a little while.
They also did a bone marrow asperation but we did not hear back from it, as it was late when they completed everything. We arrived there at 11:30am and they took her back at 1:20 she was in recovery at 3:00. They said she would be there 30 min and at 4:00 I went back to recovery to see her even though they really didn't want me too. She was in alot of pain and were giving her demerol and had to keep her there an extra 30 min for each time they gave it to her. The lady that was taking care of her in recovery was very nice. She was glad I came back there and said she thought parents should be allowed back at certain times.
Anyway, Deanna got a Chick-fil-a on the way home she was starving from not having anything all day. We left the hospital and got home around 7:00pm - no wonder she was starving............
She was hurting during the night. The nutrition she is hooked up to at night makes her go to the bathroom several times a night and that kept waking her too. She is still asleep this morning so I will write a little later to let you know how this is going. I may go take a nap. ha ha
Love,
Pama
Sunday, March 16, 2003 9:54 AM CST
Well, we got to go home from the hospital yesterday. Checked out around 4:30pm, went by the Piggly Wiggly to get stuff to make Deanna's favorite soup...got home and unpacked was waiting on the soup to simmer a little and she spiked a temp of 101.8. I called the hospital and
Ms Meredith said her counts were up to give her tylenol and check the fever in an hour to see if it went down and to see how she does through the night but if it didn't go down to call back... of course after an hour and a half it had went to 102.3 and we were told to come on back. After staying in the ER til 12:00pm we were finally admitted and she hasn't had much sleep all night. They took blood and did xrays....we are still waiting to see Dr Watts this morning. Pops went home Friday afternoon. We were sure glad he came and stayed with us even if it was just a week. We miss him already, but we hope he comes back soon.
Will let you know what we find out.
Love,
Pama
Tuesday, March 11, 2003 5:02 PM CST
QUICK UPDATE BY MIMI:
As some of you know, Deanna came home from the hospital late Saturday afternoon.Her stomache was still hurting but she was having some good days. Her Pops (B.J.) is here from Texas this week and staying with her while Pama and I work. Pama had to learn to give Deanna a shot in her leg. This is to be given at night. She also had to put her vitamins in TPN which runs for 12 hours at night. This goes in through her port.
Anyway to make a long story short. Pama called me at work and they were on their way to clinic. Deanna had a fever and Meredith , her Nurse Practioner said to bring her in to the clinic. She is being admitted to the hospital. Her counts were down which is to be expected. She also needed fluids.
They are waiting for a room as I write this. I am going to the hospital so Pama can go home and pack a few things. Don't know how long Deanna will be in the hospital.
Thanks for dropping by.As always remember us in your prayers.
Love ya!
Mimi, Pama, Deanna and Nick.
Wednesday, March 5, 2003 2:22 PM CST
Hey,
How is everyone? I am doing GREAT. The chemo is not making me sick this time. I have been eating chinese food, M and M's, Jelly Beans, grits, Banana Nut Cereal/milk, Arby's Roast Beef Sandwich/Fries.
I checked in the hospital Monday after having blood drawn in Clinic 5. After checking in Mom, Mimi and I toured the Stem Cell Transplant Unit. It is really nice.
love,
Deanna
Friday, February 28, 2003 6:52 AM CST
Deanna is feeling better now. She isn't having as much pain during the day. It seems to be worse at night which doesn't help her sleeping. Went to clinic yesterday and Dr. Watts gave her something more to help her sleep. (Sleeping and pain medicine) That seemed to help she sleep until 5:30 am which is almost all night. I hope she can rest better now.
We had all been waiting to find out about the rest of her treatment.Next Monday she goes in the hospital for chemo.It will be the stronger chemo (VP-16 & Ifosfamill) I am trying to add this link so you can read what they are all about. I still have to read all this too. My brain doesn't seem to want to comprehend at this time.
http://www.patientcenters.com/leukemia/news/chemo_drugs.html
She will get this for 4 days at 20% less the regular strength. Dr. Watts is hoping it will not make her terribly sick. After this we will come home for around 3 weeks or so to let her body build back up. She will continue to go to clinic weekly for her counts to be checked. When she is able she will go to the stem cell unit to start treatment there. And as we all know things could change at any time. But that is the plan for now.
Oh yea, she had gained some weight back 98 lbs now. She is coming around getting stronger, and walking better.
Yesterday she wanted mexican food so we went and had nachos! Just waiting for the heartburn now!
Gotta go finish getting ready for work.....taking Nick to school.....He is doing really good, being lots of help at home.
Love you all,
Pama
Tuesday, February 25, 2003 6:53 AM CST
Good Morning!
We are proud to say we are finally home! Things have been really busy the last few days. Deanna got her chemo treatment Thursday night and ran 24 hours. The treatment was short and not as strong so it did not make her sick. It did keep her nausiated and it was hard to eat anything. She said it made everything taste awful for a few days. This treatment was just to make sure she stays in remission. We are waiting to find out what comes next in her treatment. Dr. W atts says he should know more when we go to clinic Thursday.
Sunday we found out the reason she felt so bad and was running a fever on and off was because she had the flu! Boy do I feel bad for making her get up and move around, do exercises, and all that other stuff. You just never know. She should be about over that, I will just keep an eye on her a few days. Monday her counts were down some and she had to have blood. She got 2 bags, which I think is 2 units. Right now I'm tired and I can't think straight. It takes 2 hours per bag to get and she did great. It makes her feel much better after she recieves it.
We didn't get home until about 6:00 pm last night. K. C. went and picked up dinner, Deanna wanted chinese food. I wasn't sure she would eat it but after 2 plates I figure her apetite is coming back! By the time I got her medicines straight and got her hooked up to her nightly nutrition it was 11:00 pm. We were pretty tired and no one had to rock us to sleep. Of course we did take the time to see the show about Joe Millionare. Who could miss that!
She slept pretty good last night. She did not wake up until 5:30 this morning needing some pain and nausea medicine. That is really good. She is back resting now, I have to go get Nick up to get to school and I think I will take a nap............... or maybe I am just wishing.............we will see
Take care,
Pama
Thank you all for your thoughts, prayers and visits.
We love you all!
Friday, February 21, 2003 4:22 PM CST
Hey guys its Deanna I finally felt like writing.I really appreciate everyones letters.Since I have been in the hospital I haven't felt like getting out of bed and going to the activity room or the harbor house to read the letters so my grandmother prints them out.I still haven't read them but, I know who all has wrote me. I am really glad you have your churches praying for me and that you are too. I love you with all my heart but, I am getting tired and I am going to go.
Love,
Deanna
Monday, February 17, 2003 5:21 PM CST
QUICK UPDATE.
Deanna was feeling better yesterday so Pama went home last night to regroup and get a good nights sleep. About 9:30PM Deanna spiked a fever of 101.6. It came down and she had a good night until around 6:00AM then it was 102.7. Called Pama and she was already on her way. They checked her blood and made chest x-rays. Her infection fighting counts were good. We found out at 5:00PM that she has a touch of pneumonia in one of her lungs. She is getting antibiotics. She finally got some relief from pain in her legs and stomach after they tried different medications. Her spirits remain high and she continues to be an inspiration for us all. She keeps saying everying is going to be O.K.
Thanks again for keeping us in your thoughts and prayers.
Love ya!
Mimi, Pama, Deanna and Nick
Wednesday, February 12, 2003 6:01 PM CST
DEANNA IS IN REMISSION!!!!!
She is still in the hospital....have to try to work on her nutrition and get her built back up. So she can stand the chemo treatments. The bone marrow doctors will be around to talk to us. She is also going to do a little physical therapy to help her walk. That will be tomorrow. She can have any food she wants so I gotta go now to get to Captain Dee's!!!
Love you all!
Pama
Friday, February 7, 2003 10:20 PM CST
Deanna was admitted to the hospital after going to clinic for her leg shot. Her stomach has hurt all week. She has not been eating or drinking enough. She is getting fluid through IV and feeding through IV. Maybe this will make her feel better. She has lost 5lbs since Wednesday. The next step will probably be a feeding tube on Monday. The bone marrow test is still down for Monday but that could change.
WBC 1.02 Normal is 4.5 to 13.
HCT 33.2 Normal is 36.0 to 46.0
PLT 158 Normal is 140 to 440
Please pray that the doctors will find what is causing her stomach and back pain. They think the leukemia is under control and the pain is not from that. We will know if she is in remission on Monday if they go ahead with the bone marrow test then.
Thanks for checking on us. We hope you and your loved ones are doing good.
We will update as soon as we know something.
Love ya!
Mimi, Pama, Deanna and Nick.
Saturday, February 8, 2003 11:30am
Quick update.
Ultra sound on stomach did not show anything. She wasn't hurting this morning until after she had eaten something. Dr said to have clear liquids today to see if pain goes away. Will hold off on feeding tube for now.A Cat scan is scheduled for Monday.Have not heard from all test yet. She rested last night.
Thanks for checking on us.
Mimi
Wednesday, February 5, 2003 1:28 PM CST
Monday was very tiring. We were at clinic from around 9:00AM until 3:30PM. Her treatments went well. Counts were 210. Dr Castleberry said she was doing great. If all goes well she will have a bone marrow test on Monday, February 10. If she is in remission, she will be admitted to hospital and start the next phase of her treatments.
She was real tired Tuesday and slept most of the day. She ate a good breakfast around ten o'clock then back to sleep.
Went to clinic this morning to check counts and to get her leg shot. Dr Castleberry said everything looked great.
Deanna is still real tired which is to be expected.
Now to go back to the days before Deanna relapsed:
I (Mimi) had told Deanna back in October that we would have to go somewhere and celebrate her coming off treatment.After she had her bone marrow test and spinal tap in November, we planned to do something. The holidays came and went. I had a feeling that we had better go soon.
She didn't have to go back to school until Wednesday, January 8.
We were planning to go to Columbus, Georgia and go shopping at a mall that she had seen when she was there once before. I picked her up on Sunday. She had changed her mind and wanted to go to "Elvis's House" in Memphis. I told her that was fine with me. She called Pama and told her our plans had changed.
We arrived in Memphis and rode around awhile. Then went to Collierville and checked into the Hamilton Inn.The next morning we slept late...got up..got dressed...skipped breakfast and ate lunch.
We did the "Platium Tour". This included(Graceland, his plane "Lisa Marie" , his jet, car museum and the Memorial Garden. We didn't know they were celebrating Elvis's birthday. They still had the Christmas decoration up outside and the house was decorated for Christmas. We enjoyed this very much.After we left there we went to Peabody Place so Deanna could shop at the Hot Topic.
We had dinner and were back in our room by 9:00PM. Deanna made the trip fine and her energy level was high.Her stomach hurt and she had a headache so she took a Tylenol and seems fine. Got home around 6 0'clock Tuesday night. Deanna's back starting hurting that night.
She was excited about going back to school after the Christmas holiday's so she went to school Wednesday, January 8. Called Pama from school and said her back hurt too bad to ride the school bus. Pama picked her up at school.
She was scheduled for her monthly check-up on Thursday. So she went in and her counts were 45000. Dr. Watts had her come in on Friday, January 10 for bone marrow test and spinal tap and the rest is history.....she had relapsed.
I am so glad that we got to take out trip. We both had a great time, laughing, talking, shopping. We also made plans to take Nick during springbreak.
Speaking of Nick. He is enjoying being a teenager. Reminds me of when his mother was his age. She went skating every weekend also. Nick got over his strep throat and is doing fine.
For those that have asked about the bone marrow transplant...All we know is that Deanna will have to be in remission before they can do it.
Thanks for checking on us.
Love ya!
Mimi, Pama, Deanna and Nick.
Thursday, January 30, 2003 at 07:15 AM (CST)
Deanna started her home schooling on Tuesday. The teacher will be here on Tuesdays and Thursdays this week. I'm so glad she can do this at home because she was worried about getting behind in her school work. Pama and Deanna went to clinic on Wednesday for her chemo. I worked while they were at clinic then Pama called me when they were ready to leave so I could be at home to meet them. I picked up chinese food for lunch.Pama went to work...Got in traffic jam on 65 and was late getting home. I stayed overnight and will be with Deanna today. Pama and I take turns working.
Yesterday was a day with very mixed emotions.Deanna's hair came out a lot yesterday. She has such beautiful long hair but we know it will grow back more beautiful than ever. She looked so cute with a pixie when it was growing back before. As usual she seems to be o.k. with this and doesn't want her friends to worry about her.
I would like to share with you something that happened while Deanna was in the hospital this past week. I went down to the gift shop to get magazines and Skittles for my girls, Deanna and Pama. I looked around not expecting to find anything special when all of a sudden my eyes go to these little boxes. Some were wrapped in birthday wrap... some in other designs. Then there it was...A box wrapped in paper with sunflowers on it with a yellow bow on top. Looking closer I see that it is a music box that plays, "You Are My Sunshine". The perfect gift for "My little Sunshine". Deanna and I have sung that song many times while in the car driving down the road. I also sent her a faxed note to camp with a picture of the sun with a note saying, "You are my Sunshine."
We would like to thank everyone for all the prayers , cards, gifts,phone calls, visits, food that was prepared by neighbors. Thanks for signing her guestbook.
Love ya!
Mimi, Pama, Deanna and Nick.
Tuesday, January 28, 2003 at 06:34 AM (CST)
Deanna is now at home. We came home last night around 6:00pm. She slept pretty well, only woke up twice during the night which is alot better than with the IV beeping all night. Her counts are still low, which is to be expected so that keeps her tired. The doctors said they knew she would rest better at home she just has to be watched closely. If there are any changes we would have to go back.
Will write more later, just wanted to say we are home.
Pama
Sunday, January 26, 2003 at 01:31 PM (CST)
Still in hospital for antibiotics a couple more days.
Just wanted to let you know we now have pics of Deanna, Nick, Mimi, and cousin Brody. Thanks to Aunt Becky's wonderful photography and computer knowledge!
Thank you Aunt Becky!
Counts are still down but doctors are hopeful the red blood cells she got will bring them up. I am home for a quick "real shower" do some paper work them back to the hospital.
Love you all, Pama
Saturday, January 25, 2003 at 12:38 PM (CST)
Well we have been in the hospital since Thursday. Deanna wasn't feeling well her counts went down and we brought her in. She had to have platelets Thursday and then red blood cells Friday night. She is having 7 different kinds of medicines thru IV and has morphine for her stomach & back pain.
Her spirits are high and appetite is good. She keeps telling us what all to go get at the store. This hospital food isn't enough. She is sleeping pretty good with the IV machine beeping all the time. She says I sleep through it all but I listen to her talking to the nurse at night. She handles things well.
Mimi and I took her to the Harbor House across the bridge to get her hair washed and play beauty salon. Her hair is slowly coming out as she runs her hands through it often. You can't tell any difference yet. She seems to be okay, and thinks her friends will be more upset than her.
Nick is doing good. He was out of school all week. I thought he was better Friday but I did not want to take any chances with the cold weather.
I guess we will be here couple more days for more antibiotics. It also depends on her counts today, we have not heard yet. Things are going well and we are having fun watching movies and being lazy.
Love you all,
Pama
Wednesday, January 22, 2003 at 09:30 PM (CST)
I am so sorry I did not get to write after clinic Monday. We have had a rough couple of days. Deanna had to have the chemo back stick and has had a back ache ever since. She had chemo in IV and I can't remember all the names right now. While we were at clinic Nick was home sick with a sore throat. I was suppose to take him to the doctor at 2:15. I was still at clinic with Deanna. And what else do you do??? Call Mimi of course! She came to the rescue and took Nick to the doctor for me. He had told me all day he was okay when I called him. When Mimi got him to the doctor he had a temp of 102'. Now I feel like a bad mom. He has strep throat, the doctor said a shot would knock it out quicker and I wouldn't have to remember all the medicine for 10 days. Nick said no he did not want it. After much discussion with Mimi she took him home. So when I got home from clinic I had to march him back to the doctor for the shot. He took it fine...did not cry, whimper or anything! Guess he just wanted mom there. So I am trying to keep them away from each other for a few days. That is kinda tough. Anyway on to today....
Clinic again this morning. Deanna was just to go for the leg shot of L-Asparaginase. She was having alot of stomach pains which we think is constapation. (don't tell her I told that she will kill me) She also had twitches in her stomach. I had never seen that before, it was just like an eye twitch ony at her stomach. The nurses said it was that her stomach was full and pressing on a large vein and it was her heart beat. I am not so sure about that but I don't know what else it could be. She is feeling better tonight. We did have good news today... Nick is a match for the bone marrow transplant. For now we just keep taking treatments for the next couple of weeks. Deanna's doctor will talk to the transplant doctors and they will decide what is best. I am just happy to know we have a choice.
Thank you all for your thoughts and prayers. It really helps us all.
We love you,
Pama
Sunday, January 19, 2003 at 11:33 AM (CST)
Deanna went to clinic Friday. She was there for ASPARAGINASE which is a shot in her leg. This drug is an enzyme that blocks protien production in cancer cells to prevent them from reproducing.It is a type of chemotherapy. She will have to have it the next 3 weeks when she goes to clinic. She will be going Monday, Wednesday, & Friday. Her blood counts were good.
This is her counts: This is the normal range:
WBC 5.35 4.5 -13.0
HCT 41.4 36.0-46.0
Platelet 82 140-440
Although her counts were good her fluids were low so she had to get fluids IV f