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Monday, May 24, 2010 0:10 AM CDT

We are so blessed that we got our miracle of Madi's complete healing on Saturday May 22, 2010 at 2:22pm.
Visitation will be on Wednesday 6-9pm at Sterling-White Funeral home in Highlands, Tx.
The funeral will be at Sacred Heart Catholic Church in Crosby, Tx. at 10:00am.
In lieu of flowers, you may make a donation to BIG Love Cancer Care or His Grace Foundation. Both of these organizations help kids and families who have had a bone marrow transplant.
Thank you for all your love and support and please continue to pray for all those who are sick/undergoing medical treatments.

Saturday, May 22, 2010 4:05 PM CDT

Madi had a terrible night, but the suffering is over!
Madi earned her wings at 2:22pm today.
We meet with Sterling-White Funeral Home tomorrow at 11:00am so we are not sure about details yet.
We will update as soon as we know the details.
Thank you all for your prayers and support throughout this entire journey of Madi's incredible life.

Friday, May 21, 2010 9:35 PM CDT

Madi breaths are 17 b.p.m. right now. Several days ago it was only 6 b.p.m. Madi's heart is beating 135 b.p.m.
All the morphine and the carbon dioxide is causing her heart to race.
Today is the first day that she has slept all day without waking up. Please pray that she will go peacefully in her sleep.
Our nights and days have been really bad because Madi has a lot of pain and restlessness.
Every day she says it is time to go to heaven soon and gives everyone very emotional good-byes. She goes to sleep and then she wakes back up. She usually squeezes my fingers for several hours while she is a sleep and I cherish every second of it. Sometimes she wakes up confused and scared. This is what scares Mike and I the most. That is what happens to Madi when she gets too much pain medicine. She can get where she can't speak but she could be in pain and scared. Please pray really hard that she is having sweet dreams about heaven until she gets there. Pray that when she moans in her sleep it doesn't hurt. When she has been waking up, she is upset that she couldn't go to heaven yet.
Madi has been so comfortable for over a week now telling everyone goodbye because she is going to heaven soon. Last Friday she told our social worker "Bye Ms. Bonnie, this will probably be the last time that I will see you since I will be going to heaven soon." Bonnie has been in our room almost everyday since then.
Last Sunday Madi called her best friends and told them not to be sad because she was going to die soon, but she would be watching over them from heaven. Please pray for Savannah, Wyatt, Luke, and Hunter, as well as all the other kids, cousins, friends and family that are really sad right now.
Oh and really pray hard for big brother, Austin. He left school last Thursday during lunch and hasn't been back to school yet. Austin has been here in the room with Madi every night and day since then. But I told him that he can't stay tonight. It is too much of an emotional rollercoaster ride for Austin now. It is so much harder to watch Madi as her body struggles to live while her soul aches to go to heaven.
Austin has been so wonderful, especially during the last nine days. He insisted on going with Mike on Monday to Sterling-White in Highlands. I told Austin that he could pick out the place to bury Madi. I think that it is in "The Garden of Love" area.
While Mike and Austin were at the cemetary, Mike told Austin that things were going to change for the better now that Madi would be going to heaven soon. Austin said that he still would not have changed one thing. Austin has had to sacrifice so much since Madi has been sick.
Right now we need to pray for Madi to have a peaceful death so she can start dancing with Jesus in heaven as well as dancing with all her bmt friends and Uncle Rodney and Uncle Stephen!
I forgot to tell you all about Afton May's brain tumor surgery. The doctors were able to remove all of them. She is at home, but she needs many prayers for a complete successful recovery.
We are so BLESSED to have friends like each and everyone of you!!!! PRAY, PRAY, PRAY

Tuesday, May 18, 2010 2:10 PM CDT

Things have been so crazy and busy here at the hospital.
I don't have time to fill in all the blanks during the last several days. I need to get back to Madi while I still can. I will update better eventually.
Right now Madi and us would love for our prayer warriors to send up some prayers for a speedy and peaceful trip to heaven. Madi is so comfortable talking about it and ready to go!
I will make sure someone posts details when the time comes.

Thursday, May 13, 2010 7:35 AM CDT

Madi was getting a blood transfusion when I got to the hospital yesterday after work.
She also had a CAT scan during the day.
So far all the blood work is coming back negative for infections. Some are still out though.
We slept from about 11-2. Respitory came in at 2:00am. Madi was very nauseated and couldn't sleep. She vomited a few times.
Hopefully Madi can nap today.
I will update later.

Tuesday, May 11, 2010 10:14 PM CDT

We are back to our normal routine at the hospital. Mike and Mom were with Madi during the day at the hospital and I came up after work so I can stay the night. I will continue to go to work if Madi is doing ok. The doctors have to "fix" the lung problems before she can go into surgery to "fix" her other problems.
The pulmonary team came by today. Madi is getting breathing treatments every six hours now.
Madi is also getting a lot of IV antibiotics. She will probably get a blood transfusion tomorrow.
Austin's gastro doctor put him on high doses of steroids and another medicine that I don't remember what it is called. He also did blood work but we don't have the results yet.
Well the respitory therapist is coming in early now, Yea!
Please pray for a pre-k. teacher that fell yesterday at work and had to have surgery today.
Thanks for all the prayers. We are so blessed to have so many wonderful friends praying for our family!

Tuesday, May 11, 2010 7:27 AM CDT

Please pray extra hard for Madi. She is getting admitted to the hospital today. I will update when I have more time.

Sunday, May 9, 2010 12:20 AM CDT

Happy Mother's Day to all mothers, grandmothers, and mothers to be. I have a special request that I would like each of you to do and to spread the word to others as well.
Our dear friends at B.I.G. love cancer care need all of our help and support so they can help others who are in need at Tx. Children's Hospital. All you have to do each day until May 31st is to vote for B.I.G. Love to win $25K in a PepsiCola contest. B.I.G. Love is charity that was founded after Jessica and Chaney Phillips lost their young daughter, Brooke, after a bone marrow transplant. Brookie was a dear little friend to Madi and our family.
Go to www.refresheverything.com/biglove to vote each day.
The money will help buy specific items from the grocery store for those who live on the cancer floor.
Now for an update on my kids.
Madi's carbon dioxide level has the doctors very concerned. We almost got admitted on Wednesday. They ran the test again after Madi got a lot of extra fluids of potassium and her levels came down a little.
We met with Dr. Carter, the only dentist at TCH, on Wednesday. Madi has so many teeth rotting due to all the chemos, radiation and medicines. Since Madi has so many other critical concerns now, Dr. Carter said that he can only treat Madi with antibiotics and pain medicine. Madi has been living on antibiotics and pain medicine for the last 4 1/2 years already.
After the dentist, we then had an appointment with a surgeon that is going to put Madi's feeding tube in. We are planning on both doctors working together when Madi is put to sleep so the dentist can pull some of Madi's teeth. Madi goes back tomorrow for blood work.
Austin has an appointment with his doctor at Texas Children's Hospital tomorrow too.
Please pray that all goes well and please don't forget to vote!

Thursday, May 6, 2010 7:51 AM CDT

Please pray that Madi gets better soon. She almost got admitted to the hospital yesterday due to her carbon dioxide level being high at 44.
I will give a better update when I have more time.

Thursday, April 29, 2010 5:31 PM CDT

Mike and Madi had a long day at the hospital today. Madi has been feeling worse than her normal self, so they went in today for a check-up. Madi's central line didn't want to work, so they had to wait for a medicine that gets her line working. While they were waiting, Madi had an xray and a nasal wash. The xray was ok and the nasal wash was negative for infections.
When they gotthe results from her complete blood count, it showed that she was dehydrated. Madi has been drinking more water during the last few weeks. Madi's kidney functions are a little better than three weeks ago since she is taking Fenofibrate. Madi had to get some fluids before they would let her leave. The doctors want to see Madi back tomorrow. Pray that she doesn't get admitted, please.
They should be coming home soon.
I want to ask for your prayers for all those who are sick/undergoing medical treatments.
I just want to tell you all about some things going on this weekend.
On Saturday, May 1st, The Crawfish Shack is donating half of all its sales to HelpingaHero.org This helps severely wounded heroes injured in Iraq and Afghanistan. Proceeds will fund the building of a new adapted home for Wounded American Hero Sgt. Andrew Beesley, US Army (Ret.) and his family. Sgt. Beesley and other wounded heroes will be in attendance from noon-2:00pm. Time on Sat. 11am-10pm.
Sunday is Lemonade Day. Lemonade Day introduces kids to entrepreneurship. Ashton Kenebrew's award winning lemonade will be on sale Sunday 1-5pm at the Crawfish Shack. This year Ashton is donating all his proceeds to Newport Elementary teacher, Brenda Elkins, who was recently diagnosed with cancer.
Please go by and make a donation!

Sunday, April 25, 2010 1:45 PM CDT

Things have been extremely hetic around here lately.
Madi's liver counts have been really bad for a long time now. They continue to get worse, so the doctors want her off TPN. We feed Madi through her central line/veins at night for twelve hours. Since Madi's teeth hurt, she doesn't feel like chewing food, so we don't think that she will be able to eat enough on her own. The doctors are wanting to put in a feeding tube directly into her stomach. She still has the same on going problems of sleeping and nausea.
Austin received the sacrament of confirmation the week after Easter. Austin really needs the Holy Spirit to help him deal with his Crohn's Disease. The cronic fatigue, diarrhea, weight loss, blood loss, fever, arthritis, nausea, vomiting and malnutrition are causing him to struggle with his grades and his football workout.
Austin was losing pints of blood after lifting weights. Of course the doctor said to stop all physical activities.
Both the kids have appointments coming up at Texas Children's Hospital in a couple of weeks.
Please pray for Aus and Madi's healing as well as everyone else who is sick, especially Afton May. Afton will have two brain tumors removed in May at MD Anderson. We saw her yesterday and she is in really good spirits.
We were able to go to the Baytown's Relay For Life Friday night. Madi had fun seeing everyone.
Please keep lifting up everyone in prayer. I know it does make a difference!

Friday, April 9, 2010 7:47 AM CDT

On Saturday, April 10th there will be a pancake breakfast at Applebee's in Crosby from 8:00-10:00am for Weston Zucha.
Weston was born with a rare skin disease called epidermolysis bullosa, EB for short. They will also be selling raffle tickets for a blanket.
The main event tomorrow will be "Weston's Warriors Walk-A-Mile" at the Crosby High School track from 4:00-6:00pm. Come and drop off a donation and visit. Madi is so exciting about going! She loves to see everyone. They will also be selling flip-flops and I think a silent auction for some quilts as well.
Weston's skin is very thin and he constantly has blisters like burned victims may have on their body. Bandages have to be changed every single day and it is so painful for Weston. The Zucha's insurance company is no longer paying for bandages. I teach with Weston's mom, Dana, at the kindergarten. Weston's dad is a police officer in Baytown. All proceeds will go this year to help pay for medical expenses.
I will update about Madi soon!
SEE YA AT CHS ON SATURDAY, APRIL 1O,2010 4-6PM.

Monday, March 29, 2010 7:35 AM CDT

I tried to update Saturday night and the electricity went out. I was almost finish updating yesterday and we lost electricity again for two hours.
So I only have time for a quick update.
Madi still isn't sleeping well at night. Tuesday night she didn't sleep at all!
On March 12th our registered beagle and chihuahua disappeared from the backyard. We think they dug out(first time ever)under the fence and someone picked them up. Nobody in the neighborhood has seen any trace of them.
Madi has a black dachshund that is getting old now. She always has wanted a "red weenie" and I told her when one of her dogs died, she could get a new dog. Well the time has come. If anyone knows of anyone that has "red weenie" dogs, please let me know.
Please keep praying for all those who are sick and seeking medical attention.
I HOPE EVERYONE HAS A BLESSED EASTER!

Wednesday, March 17, 2010 10:47 AM CDT

I'm sure everyone is enjoying spring break!
Mike and Austin have been going to Houston to the pig shows all this week. Austin showed his pig on Sunday but he didn't make the auction.
Madi's social worker from the hospital gave us tickets to see The Jonas Brothers at the rodeo. I was stressed just thinking about taking Madi into the crowds, but everything turned out just fine. Madi had so much fun!
We have been sick with the stomach virus around our
house. I had it first, then Austin and then poor Madi had it. Hopefully Mike won't get it.
As always thanks for all the prayers and keep praying for all those who are sick and seeking medical attention.

Monday, March 1, 2010 7:20 AM CST

Our computer at home is still acting up.
Mike got his second round of chemotherapy last Tuesday. He talked the doctors into decreasing it by 25%. The doctors also added some steroids with it. These changes made it a little easier on Mike's body.
Please keep praying as always.
Please pray for my nieces that are both pregnant. I have a close friend that miscarried, so please keep her in your prayers.
I have another friend who just found out that her mom has cancer.
Madi hasn't been sleeping very well at all since the benefit. She didn't go to sleep until 4:30am a few nights ago. She has been doing this every few nights.
I am taking off from work on Wednesday and going to the hospital with her for her infusion day.
I want to thank everyone again for all their hard work that made the benefit possible. We are anxiously waiting to pay some bills!

Monday, February 22, 2010 7:47 AM CST

Just a quick note since I'm at work.
THERE ARE NO WORDS THAT CAN EXPRESS OUR THANKS AND GRATITUDE TO EVERYONE THAT IS RESPONSIBLE FOR MADI'S CLIMB FOR BEING SO SUCCESSFUL!!!
THANK YOU, THANK YOU, THANK YOU!!!!!

Monday, February 8, 2010 7:33 AM CST

We had an awesome weekend! There are not enough powerful words to describe how special Barbers Hill made Madi feel Friday night at the girls basketball game! So many thanks to Coach Barnett, the parents, basketball players, the drill team, Exxon guys, etc... I need to also thank Madi's Benefit friends for helping out Friday night at the game too. They sold Madi's bracelets, took t-shirt orders and sold bar-b-que tickets for the benefit.
If anyone wants to buy food tickets for the benefit or has any questions about it, you can email Kayla Hall at cclivestock@verizon.net
It was so nice seeing old friends and making new friends too!
As always keep praying for all those who are sick/undergoing medical treatment.
It breaks my heart to write this but we need new prayers being lifted up for Afton May. Afton's dad, Robert, is Mike's first cousin. She had a brain tumor when she was almost three years old. Afton is almost twenty-five years old. She looked good to me and in good spirits at the game. Right now MD Anderson just wants to monitor the growth of the tumor.
If anyone ever has any prayer request, please let us know.

Thursday, February 4, 2010 5:58 PM CST

I took off Tuesday and went to Tx. Children's Hospital with Madi and Mike. Madi has been having some chest pains so she had an xray. The xray looked fine. Madi's pancreas level was high so she has had to stop eating her favorite things like chicken and fish sticks for a few days.
Madi is so excited about going to the Barbers Hill girl's basketball games tomorrow evening!
They have a lot of special things planned in honor of Madi. You can go to their web site and check it out.
Please continue praying for all those who are sick and are undergoing medical treatment.

Sunday, January 24, 2010 5:16 PM CST

Just a quick update before I go to church.
Mike had a terrible week. Madi didn't do so well either. She didn't sleep much at all. Mike goes to the doctor on Wednesday. Mike is doing so much better though.
Please pray for the Boring Family. Earl Lynn Boring died Friday morning at Lyndell. His wife, Ann, is so sweet. She has taught both Austin and Madi in Sunday School. Please pray for the kids. Zac is a junior in high school and Hannah is in the 7th grade.
Visitation is Tuesday at Sterling-White in Highlands from 5-8pm.
The Service is on Wednesday at 10:00am at Sterling-White.

Tuesday, January 19, 2010 7:19 AM CST

Mike received some of his chemo last Monday. They wanted to give him the rest of it last Tuesday, but his body was having problems with the chemo. Mike had to do a 24 hour urine collection since the Cytoxan is very hard on the bladder.
Yesterday Mike received all of his first dose of chemo. They gave the chemo with lots of fluid to protect the bladder. His urine didn't show any signs of infection. Mike has to drink a lot of fluids, which he is not use to drinking a lot of water.
Madi had to take Cytoxan too so we are very aware of how it works and all the side-effects.
Mike feels like and looks like he has the flu.
Mike doesn't have to have a central line put in so far. The doctors are hoping to just use his veins since he should only be getting chemo every three weeks.
Madi is worried about her daddy. We are anxious for his counts to fall so they can start coming back up soon.
Please continue praying for all those who are sick and seeking medical attention.
I wanted to quickly inform everyone about the Madi benefit that friends are giving in honor of Madi.
The benefit is on February 20th at the fairgrounds in Crosby.
The time is 4:00pm-12:00pm. There will be kid games, bar b que plates, an auction and a dance.
If anyone has any questions, you can email Kayla Hall at cclivestock@verizon.net

Tuesday, January 19, 2010 7:19 AM CST

Mike received some of his chemo last Monday. They wanted to give him the rest of it last Tuesday, but his body was having problems with the chemo. Mike had to do a 24 hour urine collection since the Cytoxan is very hard on the bladder.
Yesterday Mike received all of his first dose of chemo. They gave the chemo with lots of fluid to protect the bladder. His urine didn't show any signs of infection. Mike has to drink a lot of fluids, which he is not use to drinking a lot of water.
Madi had to take Cytoxan too so we are very aware of how it works and all the side-effects.
Mike feels like and looks like he has the flu.
Mike doesn't have to have a central line put in so far. The doctors are hoping to just use his veins since he should only be getting chemo every three weeks.
Madi is worried about her daddy. We are anxious for his counts to fall so they can start coming back up soon.
Please continue praying for all those who are sick and seeking medical attention.
I wanted to quickly inform everyone about the Madi benefit that friends are giving in honor of Madi.
The benefit is on February 20th at the fairgrounds in Crosby. The time is 4:00pm-12:00pm. There will be kid games, bar b que plates, an auction and a dance.
If anyone has any questions, you can email Kayla Hall at cclivestock@verizon.net

Sunday, January 10, 2010 10:06 AM CST

I hope everyone is staying warm and well during these freezing days and nights.
Madi had a long day at the hospital on Wednesday for all her infusions. She is hanging in there as usual though.
Mike has been going to the doctor a lot here lately.
Dr. Staley Brod, who is Mike's neurologist in the medical center, wants him to start back on chemo since Mike's MS is rapidly getting worse. When Dr. Brod first diagnosed Mike, he told Mike that he needed to find doctors closer to home to see every month and that he only needed to see him once a year or so since he is so busy teaching and doing research most of the time.
Mike has a lot of doctors in Baytown that he loves and trust. Mike's Baytown doctors are very protective of him and when they found out that Dr. Brod wanted to start Mike on Cytoxan, they were immediately having phone conferences discussing what really was the best treatment for Mike.
Mike will get his first dose of chemo tomorrow at the oncology treatment in Baytown.
Please pray that all goes well and Mike doesn't suffer from all the side effects and complications from chemo.
Continue to pray for all those who are sick and undergoing treatment so they will have a speedy recovery.
Please pray for the families that are having to take care of loved ones that are sick and recovering from illnesses.
May the Lord bless them with energy, strength and knowledge.

Saturday, January 2, 2010 10:23 PM CST

We had such a blessed and joyful Christmas. I hope each of you did as well with your families.
MAY THE LORD BLESS AND GUIDE US ALL IN 2010!

Tuesday, December 22, 2009 1:09 PM CST

Madi loved being in the high school play. CHS Drama Dept. is always so compassionate towards Madi. She loved being around all the action.
Last Wednesday Madi and Mike went to Drew (5th & 6th grades) to view all the "Bears for Madi" on the walls. Students and staff could buy a paper bear and decorate it for $1.oo or more for Madi. We were shocked when we were given over $2,000! A special thanks goes out to everyone for making Madi feel so dearly special and loved!
Last Thursday Mike took Austin back to the doctor to get his results from the MRI done on his right wrist. It appears to be a bad sprain still and if the pain doesn't get better soon, Austin may have to get steroid shots in his wrist.
Mike had his yearly appointment with Dr. Brod yesterday in the medical center. Dr. Brod was the main doctor that diagnosed Mike with MS years ago. Mike sees him about once a year. Mike goes to doctors in Baytown every month.
Dr. Brod can tell that Mike has gone down hill a lot during the last year. He wants Mike to have MRIs done of the brain and spine ASAP. He wants to start Mike back on some chemotherapy soon.
After Mike got home from the doctor's appointment yesterday, he and Austin took off to San Saba. One of Mike's high school friends invited the guys to his deer lease. This is Austin's first hunting trip. They should be back on Wednesday.
Madi hated to see her guys leave. She gets so depressed. Mike can lift her better than I can, so she worries that I will hurt her back. He has more upper body strength than I do but my legs are stronger than Mike's legs.
Madi hates it when I have to run to the grocery store or do any kind of shopping. She would rather me shop online and never leave the house.
I wanted to give you all an update on Veronica Duggan's family. I know several people have added them to their pray groups and wanted to know more information. Veronica's daughter, Christina, is out of the hospital, but she still needs many prayers for her complete recovery. The baby will remain at Texas Children's Hospital for a long time. She has gained over an ounce or more now. Veronica was excited to get to touch her last week.
Please continue praying for all those who are sick and undergoing medical treatment. Please pray for all those who have lost loved ones.
As always, we are counting our blessings with all our earthly angels sent to us to deal with whatever comes our way.
May you all have a Very Blessed Christmas and a Happy New Year.
JESUS IS THE REASON FOR THE SEASON!

Wednesday, December 9, 2009 10:58 PM CST

Madi has an exciting few days ahead of her this week. On Monday I told Madi that the high school drama dept. was doing a Christmas play this week. Mr. Blanchard had invited Madi to be in the play with a few other children.
Madi was so excited about being in "The Christmas Couch."
Madi didn't sleep at all Monday night. I mean that she didn't even take a five minute nap either. She told me that her legs hurt and that she couldn't sleep. She told me that I could nap if I wanted. I think that a big part of Madi's sleepless night was due to the excitement of being in the play.
Madi went to sleep when Austin and I left Tuesday morning for school.
Madi had play practice today when she got back from her hospital appointment. She loved watching the big kids in action. The play is Thursday, Friday and Saturday at 7:00pm.
I told Madi that she didn't have to do it all three nights if she didn't feel like it, but she told me that she wants to do it all three nights.
Please continue praying for all those who are sick and hurting. I have a very special prayer request for Veronica Duggan's daughter and granddaughter. Both are in the hospital. The baby came three months early and she weighs less than two pounds. Please say extra prayers for both of them. We know how strong prayers can be in a great time of need.

Sunday, December 6, 2009 8:34 AM CST

Can you believe that it snowed Friday? For those of you who don't live around here, it snowed hard from about 8:30am-4:00pm. My campus dismissed at 1:00pm and then I had to ride a bus route to make sure that parents were home when their kids got off the bus. When I got home, Austin was at his cousin's house playing in the snow. Madi didn't want to go out in it, she was happy watching it from the window inside the house. So I didn't get any pictures of the kids in the snow this time.
Crosby looked so beautiful early yesterday morning! We delived food/toys for the church to the needy in the community. We enjoyed seeing a variety of snowmen everywhere we drove. Snowmen were every place possible. One of our favorites was in front of us at the drive-through at Shipley's. The snowman was in the back of a truck that had their tailgate down so their snowman could be admired.
Madi didn't go with us to deliver, but we took pictures for her. She still gets up around 4:30am to take her pain medicine/lasix. She goes back to sleep around 7:30am. Madi is always hot. She gets mad at Mike when she finds out that he has turned the heater on in the house. She always wants the temperature to be 66 degrees or colder in the house. The ceiling fan has to be on the fastest speed too. So if you ever come over, any season of the year, bundle up!
Madi had a bmt appointment on Wednesday. We thought that she didn't have to go back for a couple of weeks, but the doctor called back Friday and said that Madi needs to come in this week for an IVIG infusion. IVIG helps increase Madi's immune system. She has been getting IVIG every month for the last four years.
Mike had some really bad MS flare-ups during the last ten days, but he is getting better now.
"Heroes For Patients" has invited us this year to the big Christmas party downtown. It starts at 3:00pm today. Madi deserves some fun and excitement.
Please keep praying for all those who are sick, undergoing medical treatment and for those who have lost loved ones. So many people are desperately needing prayers!
For those of you that love to read, I have a great book for you. My sister gave me the autobiography, Angels In My Hair by Lorna Byrne. I enjoyed reading it over the Thanksgiving break. Buy one for a Christmas gift!

Saturday, November 21, 2009 12:10 AM CST

Thanksgiving break is finally here!!! We are so thankful that Crosby has the entire week off for Thanksgiving.
Madi is stable enough that the bmt doctors don't want us bringing her in next week. They will be closed on Thursday and Friday. Madi's hemoglobin has been around 8%. On Wednesday she got an infusion to boost the growth of her hemoglobin cells.
Last week Madi had two appointments. She had a 10:00am bmt appointment and then she had a 3:00pm urology appointment. When I called Madi after my meeting at school, she said that she had good news and bad news. The bad news was that she had been waiting three hours for her urology appointment. The good news was that she read a sign with the office hours on it and she said that the doctor should be coming really soon because they were fixing to close. The way she said it was so funny. She has such a funny sense of humor.
The urologist took her off some meds that she shouldn't be on for her kidneys/bladder. It is always nice getting off some of her many medications.
Mike left last night at 8:00pm to buy pigs in Oklahoma. Madi cried so hard. He should be home late tonight. The pigs have to be tagged in on Monday in order to show them in Houston.
Austin is glad to be out of school. He didn't move up this year for the football playoffs. His wrist is still bothering him. He tried to do a push-up/lift weights and he still can't apply pressure to his wrist. Please pray for a speedy recovery of his wrist. He is doing better with his Crohn's Disease though.
I hope everyone has a safe and wonderful Thanksgiving. We all have so many blessings to be thankful for daily. GO COUGARS!!!

Sunday, November 8, 2009 11:38 AM CST

Thanks for all the well wishes. I am glad to hear that Madi's fan club is growing. Madi has appointments on Monday and Wednesday of this week.
Austin's Crohn's Disease and Mike's MS have been flaring up lately, but they are doing ok.
We are eagerly waiting for the week of Thanksgiving. Austin and I are out the entire week for the holiday.
Thanks for all the prayers. Please keep all those who are sick and the families of those loved ones that have died, in your prayers as well.

Tuesday, November 3, 2009 7:32 AM CST

Yes, we are out! We got home about 5:30pm yesterday.
Madi has to go back to bmt clinic on Wednesday. Hopefully all her counts will be good.
Thanks for all the prayers!

Saturday, October 31, 2009 11:11 PM CDT

Madi was sad that she had to miss cousin Sarah's 17th birthday party last night and that she also missed out on cousin Tanner's halloween party tonight.
They tried several times to get Madi's cathater in yesterday. When I arrived at the hospital we were told that someone from urology was coming to try to get the cathater in Madi. We were also told not to let Madi eat or drink anything because if the urologist couldn't get it in, Madi would be going down to the OR immediately and put to sleep for the procedure. Well after a long time trying, the urologist got it in. It was and still is, so painful for Madi.
Since the bone marrow transplant unit is full on the 8th floor, we had to go up to our first home here, the cancer 9th floor. The two floors are so different. This floor has a great family room that has lots of snacks and my favorite, tea! I think that there are 40 beds on the 9th floor, so you can get some exercise. On the 8th floor you are lucky if there is cream for your coffee. There are less than 20 rooms in the bmt unit, so there is no room for exercise. There is no circle to walk, just a dead end. It's often called the dungeon.
They are taking great care of Madi here on the 9th floor. Our bmt doctors still come up and see us. Madi was so excited when the snowcone cart came around today.
I was overwhelmed with good and bad memories when we first got out of the elevator. So many best friends gone forever. Please pray for all those parents who have lost children or loved ones. We can't even imagine how hard it must be to get through the holidays without loved ones around, no matter how old or young you are now.
Now getting around to Madi. She had an ultrasound done this morning. There doesn't seem to be any obstructions in her badder. She still has the two same kidney stones that have been there for a while now. A kidney specialist came by today and he said that Madi is on a lot of meds. that could be causing problems, so we will eliminate one med at a time so we can figure out what is causing the problem. This might take some time.
Madi has to take so many oral medicines and in great volumes too, which is very difficult for Madi, especially in the middle of the night. She gets very nauseated.
Someone was asking me to update about Austin. Last week at the Harris County show, Austin came in second in his class showing his pig. This week at the Expo in Humble, Austin came in third in his class. We are glad that he was able to make the auction for both shows.
Austin hurt his right wrist again in the football game Thursday night. He was suppose to let the trainer at school look at it during athletics Friday. Instead Austin went to make up a chemistry test that he had missed the day before. Please pray that his wrist heals properly.
Can you believe that Thanksgiving is right around the corner. Remember to count all your blessings in your life. We are constantly thanking the Lord for all of you!

Friday, October 30, 2009 4:49 PM CDT

Madi is being admitted to the hospital now. It's her bladder again. I am on my way to stay at the hospital now. Pray that it will be a short stay.

Tuesday, October 20, 2009 7:24 AM CDT

Just a quick update.
Madi went to the doctor yesterday and the doctor was amazed at how much better she looks. Madi doesn't have to go back to clinic until next week.
Austin is so better too. He went to school yesterday.
He is showing his pig on Thursday in Katy for the Harris County Show. He also shows next Thursday in Humble for the Expo show. Mike has been enjoying getting the pigs ready for the show.
Thanks for the prayers, as always, they are working.
(Karen H. I love you and miss you so much! Hannah must be one of Madi's many heavenly angels looking after her.
I think of her all the time. Even Madi was asking me about Hannah the other day. We were watching a show and someone had bone cancer. Madi said, "Isn't that the same kind that Hannah had?" I was surprised that she remembered!)

Wednesday, October 14, 2009 10:04 PM CDT

We are all at home tonight. Madi's kidneys are doing better. She got another IV antibiotic infusion for them at clinic today.
Austin got really sick during 6th period and mom had to go and pick him up early from school. We thought that his Crohn's Disease was flaring up at the time, but when I saw him, I knew that it was something more to it.
Mike took him to the minor emergency clinic in Atascocita when he got back from the hospital with Madi.
Austin was in bed before 10 0'clock both Friday and Saturday nights, so I could tell that he had been feeling bad all weekend. He has actually been sick off and on for the last two weeks.
Austin has the flu just like Madi and maybe me?
They also did a urinalysis on Austin and it showed that he was severely dehydrated as well. His note from the doctor says that he can return back to school on Oct. 19th. He is on Tamiflu and Bactrum. I am still taking my Tamiflu and Z-pack.
I am feeling so much better just being at home. I am so grateful that Madi is not in the hospital.
This is just another testimonial of how powerful prayer really is and how it works to help others who are in need!

Tuesday, October 13, 2009 10:03 PM CDT

Let me try it again. I just typed a thirty minute update but when I tried to add it to the website, it told me that my time had expired, so I lost all my work. I will type a short update now.
Madi's kidneys are not working well again and she also has influenza B. Madi got her monthly IVIG infusion and she also got some IV antibiotics for her kidneys.
The doctors wanted Madi to stay at the hospital, but Mike talked them into letting her come home tonight and then go back again tomorrow. If Madi's kidney functions are better tomorrow, she will not have to stay in patient.
She and I are both on Tamiflu. Yes, Madi's doctors put me on it too. They think that I gave it to Madi.
Yesterday I went to the doctor after work and I was told that I had a severe sinus infection. I was not tested for the flu. I got a shot and antibiotics too. Today I got a flu shot at school.
Madi called me at bus duty today and told me all her news.
Please spread the word for everyone to pray really hard again for Madi. We know that prayer is the strongest medicine possible! As always please pray for all those who are sick/undergoing medical treatment.
I will keep you all posted as soon as I find out more information. Stay healthy and well as possible.

Friday, October 9, 2009 10:53 PM CDT

I can't believe that it is already October. Our computer internet/telephone just started working again. The lap top is unable to get online, so Madi is really upset about not getting to play in her bed on the computer. She doesn't want to come to the computer desk at all since it is so uncomfortable for her.
Madi was suppose to get her monthly IVIG infusion on Wednesday, but someone forgot to order it, so she will have to get it next Wednesday instead.
Madi has been feeling worse than normal. Since her liver counts were high on Wednesday, they did some extra blood work and did a nasal wash. The hospital called today and told us that Madi was negative for the swine flu. We knew that she wasn't that sick. She probably has some sort of virus.
Austin has been sick with a cold/sinus infection during the last week too. He hasn't missed any school though.
I have had a sinus headache for the last three days.
I am so glad that it is the weekend. Hopefully we can catch up on some sleep. Madi has been waking up between four and five in the morning unable to go back to sleep, so we have been watching a lot of early morning tv before I go to work.
Please pray for all those who are sick and undergoing medical treatment.
Have a blessed fall season.

Tuesday, September 29, 2009 7:13 AM CDT

YES, WE ARE HOME FROM THE HOSPITAL!
Things were kind of ify yesterday, but Madi convinced them to let her get out!
I had parent/teacher night last night so when I got home, I had clothes to wash from the hospital. When I sat down at the computer, the internet wasn't working. Mike was on the phone a long time with Comcast. Hopefully it will be working today.
Madi doesn't have to go back to the hospital for a visit until tomorrow.
Austin's wrist is about 85% back to normal according to him. They lost their first district game last week. Austin will be playing though this week for our homecoming game!
I want to thank you all for your prayers that got us home yesterday and please pray that we stay out of the hospital as well. Continue praying for all those who are sick/undergoing medical treatments. GOD BLESS YOU ALL!

Sunday, September 27, 2009 7:17 PM CDT

We started switching meds back from IV to oral this afternoon, so far so good. Madi even had a few bites of pancake a couple of hours ago and she is drinking more too. She is still nauseated, but she is keeping everything down now.
There is a good chance that Madi will get to go home tomorrow or Tuesday. Tomorrow would make it so much easier for me. We have teacher/parent night at the kindergarten, so I can't get back to the hospital until 9:00pm. I am praying that I can just go home instead of the hospital.
All of Madi's cultures are coming back negative. She is off isolation now. The doctors/nurses don't have to dress in extra plastic gowns when they come into the room.
So far it just looks as though Madi had a really bad kidney infection and UTI.
Let's pray that we will be living back in Crosby tomorrow!

Friday, September 25, 2009 10:12 PM CDT

We are still in TCH. The first night here wasn't too bad but last night was terrible. Madi started with diarrhea all through the night and then she started vomiting this morning. The IV antibiotics for the kidney infection usually cause diarrhea. But they are puzzled about the vomiting. Because of all the vomiting, they switched most oral medications to IV form.
A lot of the tests are still pending. She does seem to have the BK virus affecting her kidneys.
Madi is back on fluids and TPN so she won't get dehydrated now.
We didn't sleep much at all last night, but tonight seems better so far.
I will update when I have some new news. Looks like we will be here for a few days at least.
We appreciate all the prayers, they are working, so keep them coming!

Wednesday, September 23, 2009 9:48 PM CDT

Good news and bad news.
Good news for Austin is that his wrist only has a severe sprain, so it's not broken. He will have to watch the game tomorrow night from the sidelines. If it would have been broken, he could have played in the game with a cast.
The bad news is that Madi and I are staying in room 36 at Texas Children's Hospital. The first time that they did Madi's blood work it came back so bad that they redid it thinking that it was wrong. Well the same results came back again. It seemed that Madi's kidneys had completely shut down. She had an ultrasound and everything looked normal though.
They put a catheter in Madi about an hour and it was so painful for her. Madi's urine is flowing like a river now. They are holding all her fluids, no TPN tonight. No lasix either.
Mike will come up early in the morning and I am going to work. I will rush back tomorrow after work.
Please pray that this will be our shortest stay ever!

Wednesday, September 23, 2009 6:53 AM CDT

Please pray extra hard right now for Madi and Austin.
Madi hasn't been responding at all to her lasix, so all the fluid is building back up in her body. Mike will take her in to the hospital today. Pray that she doesn't have to stay.
Austin hurt his right wrist at football practice on Monday. The athletic trainer looked at it yesterday and thinks that it is probably broken or it's a bad sprain. We will get a wrist xray today. Either way, Austin said that he will be playing in the game tomorrow, with or without a cast.
I will update tonight!

Sunday, September 20, 2009 10:32 AM CDT

Madi had her monthly IVIG infusion on Wednesday. Madi's blood work looks good too. The doctors don't want to see her back for two weeks. I think they are afraid that Madi may pick up new germs in the hallways and elevators of the hospital.
We are stillrunning Madi's TPN (IV nutrition) for twelve hours at night. She still eats a little, but I don't have to fuss at her to eat.
Madi's back still hurts her so much. She is so scared when she has to get out of bed. Mike has to be so careful when he picks her up to put her in the wheelchair. She likes to just stay at home, but we are always trying to get her to go for a ride.
I have been requested to write more about Austin and football.
Austin and I are staying busy with school. We leave the house at 6:45am. I get home by 4:00pm, if I don't have meetings, then Mike often goes and watches Austin at football practices. They get home a little before 7:00pm.
We still have players out that got hurt in the game against Port Arthur Memorial (5A) school at the end of August. They even had to call an ambulance during the game for one of our guys.
Austin got home around midnight when he went to Port Neches-Groves a couple of weeks ago. JV lost both of our non-district games.
Austin had his first district game on Thursday night.
Maw-maw and Aunt Pat watched Madi so we could both go to the game. Austin was captain and got to go out on the field for the coin toss. We kicked off to them. When we got the ball for the first time, we went 98 yards, with consecutive first downs for a touchdown. We beat CE King 21 to 8.
We have an away game Thursday night against Kingwood Park. I will let you know how it goes.
Yesterday we had the privilege of meeting Pam and Jimmy Burton from Lipon. It is nice to put faces with words from Madi's web pages. They brought some delicious food too!
I hope everyone travels safely.
As always, we appreciate all the well wishes and prayers for our family. We never take for granted the power of prayer!!!

Monday, September 7, 2009 6:39 PM CDT

Sorry it's been so long since my last update. I stay so busy since I'm working and there is always so much cleaning to do around the house. It feels so wonderful to be at home though.
Madi's clinic appointments went very well on Wednesday. Madi's right elbow is looking so much better.
She hasn't been feeling so well during the last couple of days though.
Thanks for all the well wishes and prayers. It is sooo nice being at home.

Wednesday, August 26, 2009 10:03 PM CDT

Yes, we are home! Dorothy from The Wizard of Oz was right, there's no place like home! I can't believe that we have been gone for so long. I have so much to do around here, but first I need to thank everyone for all the prayers that helped get us home.
Someone pinch me, I think I'm dreaming!

Monday, August 24, 2009 9:54 PM CDT

Madi had a terrible night Friday night and Saturday. Madi and I maybe slept two hours Friday night. The doctor increased her albumin/lasix. Since they pulled the epidural out, Madi's body was having a hard time adjusting to all the pain meds by mouth. Saturday afternoon the pain doctor decided to increase her pain meds to a higher dose that she takes every three hours.
On Sunday Madi's PCA was taken away. She was sad that her button was taken away. Just another step closer to going home. Also on Sunday, Madi was disconnected from her pump and got out of bed for the first time since June 18th. She was dizzy when Mike put her in the wheelchair. We got to leave the 8th floor and we got to take her to the 16th floor to visit the fish. It was so exciting! Madi was really excited that she got to do it with her best friend Savannah!
Madi has to be connected to the pump to get her IV meds and TPN still. We have almost switched everything over to oral medications. We will still have to run things through her line at night.
Madi's left elbow still looks really bad. Please continue to pray that Madi's entire body will heal quickly and we can go home on Wednesday.
Mike comes up early in the morning so I can go to work and as soon as I get back to the hospital, he rushes home to take care of things around the house and to be with Austin.
If Madi's xray looks good tomorrow, she should get to go home on Wednesday. So please pray, pray, pray that we can go home. We are so close to getting out of here.
I'm a little sleep deprived, so I better go now.
Oh just one more thing, I was so excited to see a bmt friend on Sunday. Paula thanks so much for all the goodies for Madi! Paula's strength amazes me so much. How hard it must be to come back on this floor after loosing her daughter, Angela.
Also pray for all the others here too. Juan just made it back from ICU. We are so excited when friends get to come back on the floor. Too many kids die around here.

Monday, August 17, 2009 9:22 PM CDT

Madi got her chest tube out at noon today! She has been in a lot of pain though. Both xrays, done before and after the tube was pulled, looked good.
I am not sure yet if the pain team will pull the epidural out tomorrow.
Austin's medicine is making him feel very nauseated these days.
I will update tomorrow if Madi gets her epidural out.
As always, thanks for all the prayers!

Sunday, August 16, 2009 4:56 PM CDT

Madi's xrays having been looking good. On Saturday we were told that a surgeon was going to pull Madi's chest tube out on Sunday or Monday. We just found out that it will be tomorrow. It will be the perfect birthday present for Mike and Austin on their birthdays.
Madi will probably get her epidural out on Paw-paw Leo's birthday, which will be on Tuesday.
Austin is doing ok taking his medicine three times a day.
I had a great day back at work on Friday. I want to thank Kayla, Beth, Viv, and Jana for all the extra help in my classroom.
I most of all want to thank each of you all for the wonderful prayers, things are still looking like we will be out of the hospital sometime during the week.

Thursday, August 13, 2009 9:05 PM CDT

OK, I spoke too soon the other day about Austin. The GI doctor was shocked today when he called and told us the results of all of Austin's colonoscopy biopsies. It looks like Austin has a rare type of Crohn's Disease (eosinophilic colitis). The doctor said that Austin needed to start an aggressive treatment of steroids today, but someone from Dr. Kitagawa's office forgot to call the script into the pharmacy, so hopefully Austin will start the pills tomorrow.
We have been suspecting that Austin has Crohn's Disease for quite some time now, so I guess we are not shocked.
I think Austin is doing ok with his diagnosis. It's hard for me to really know how he is doing since I only see him about once a week. I am going to work tomorrow, so I will run home and visit with him for a little while.
Now for a Madi update. She is still hurting, but not as much as on Tuesday. She isn't eat much at all during the last few days. She is still on TPN. She is still on oxygen, mainly because of the epidural meds/PCA morphine.
We still don't know if the pleurodesis worked yet. Please keep praying that both lungs will be healed soon and we can come home from the hospital next week.
Madi gets tired of all the doctors constantly visiting. A surgery doctor starts coming in about 5:30am. She loves our BMT doctors visiting twice a day. She likes the pain team doctors. She isn't so fond of the pulmonary doctors and more surgeons that come in throughout the day. Madi always gets a hard workout from PT and OT during the day as well.
The doctors decided to only take xrays every other day starting tomorrow. Madi has had over 70 xrays just since we have been in since June 18th.
Madi weighed 23.1 kg. today. It is so painful for Madi to weigh on the scale. Mike weighs first and then he picks Madi up and they weigh together. We then subtract the differences. Starting tomorrow the doctors only need Madi's weight every other day. They want to make it easier on her as much as possible. Madi is now on lasix every eight hours instead of every six hours. Next dose is at 1:00am.
We know that God is in control, so we will accept things as they are in our lives. We also know how many people are praying and we know that prayer makes such a difference in our lives!
Please pray for all those who are sick and for those who are seeking medical treatments.
I will update in a few days when I have more news.

Tuesday, August 11, 2009 6:57 PM CDT

Madi had the right pleurodesis done in our room at 10:30am. The surgeon had problems getting the medicine (doxycyclene) in through her chest tube. He squirted a lot of it all over everyone in the room, including Madi. We tried rolling her on her side to get the tube to work. He then flushed the line several times with saline to get the flow going into her body. He was able to get the doxycyclene into her pleuro cavity.
Madi was in excruciating pain for the first three hours. The medicine had to stay in her for two hours and then the nurse unclamped her and put her on suction.
The anesthesiologists were here and gave her lots and lots of extra pain meds through her epidural. They also allowed Madi to have some IV benadryl, which helped her to relax.
We are very optimistic now that the pleurodesis is complete, Madi's body can start to heal and the doctors are thinking of ways to get us home at the end of next week if all continues to go well.
We all know how powerful the power of pray is in our lives. I am so thankful that we are in our room and not down in ICU for one thing. There are hundreds of others things that I am thankful for too.
The first 48 hours will be the most painful for Madi, but I think we have better control of it now. We have so many blessings to be thankful for constantly every second of the night and day, like everyone praying for Madi and our family as well.
Austin is doing much better today. He was hallucinating last night that an indian chief was trying to shoot him with a bow and arrow at home. This was the same indian that he told Mike that he saw several times on the road when they were going home from the hospital. Mike said that when he was driving home, the car hit a bump in the road and Austin thought that Mike ran over someone. Mike said that Austin was looking under the car for a body when they got out of the car at home.
I now see why the nurse in recovery asked me if Austin watches horror movies. She seemed happy when I told her that he doesn't like scary movies.
Austin did have some bleeding last night, probably where the doctor took eight biopsies, so he didn't dress out at football today. He will be all better tomorrow for sure though.
As always, thank you all so much for everything. Words can't express all the appreciation we have for all the prayers!

Monday, August 10, 2009 5:53 PM CDT

I have great news today!
Austin had his colonoscopy this morning and everything seems normal. Back in 2005, before Madi had her bone marrow transplant, the doctors suggested that we have some genetic testing done. It showed that both the kids had all the genes for Crohn's Disease with a double mutation as well. Austin started having problems in May when he lost thirty pounds. The bmt doctors always wanted us to test Austin. He has lost more weight since then too.
Austin has been seeing a gastro doctor here at TCH. Some test showed that Austin may have Crohn's Disease. Todays scope showed that he doesn't have Crohn's. The doctor did take about eight biopsies to send off so hopefully everything will come back normal.
I was worried when they told me that they sedated him with versed, ketamine, and fentanyl. These are drugs that we won't let them give Madi anymore.
The nurse in recovery said that Austin couldn't be alone for twelve hours. He had to have Mike stay with him even in the bathroom. Austin put on a funny show for Madi. I just talked to Mike and Austin was still having some hallucinations and acting silly.
He is still weak from cleaning out his colon yesterday.
Austin missed his first day of two-a-day football practices today. He will be there tomorrow though.
I have good news about Madi too. Madi's xray looked much better today, so the surgeon will do the pleurodesis tomorrow morning here in our room.
The pain team/anesthesiologists will give Madi some extra pain medicine in her epidural before the procedure. The most painful time period for the pleurodesis is during the first 48 hours, so please pray that Madi will not hurt as much as she did the first time that they did it on the other lung. Please pray that the pleurodesis will also be successful too.
We are so appreciative for all the prayers coming our way for our family. We are so grateful for the gift of friends!

Sunday, August 9, 2009 9:31 PM CDT

Madi's left lung showed some fluid on the Saturday xray. It stayed about the same on todays xray. We were suppose to have a different doctor review the xray today, but we didn't hear back from him.
Madi's right chest tube has drained a lot over the weekend, so she needs the pleurodesis. We are praying that it can get done tomorrow.
I will update tomorrow night.

Friday, August 7, 2009 8:17 PM CDT

Madi went into surgery after 2:00pm. Dr. Glass took out the old epidural and then tunneled a new epidural deeper into Madi's spine.
Wound care changed Madi's dressings on her back and elbow while she was sedated.
I don't know if I wrote all about when surgery pulled Madi's left tube out the other day? The surgeon really had a hard time pulling it out. It was kind of stuck, so he had to pull really hard to yank it out. Ten minutes after he left the room, Madi's bed was saturated in fluid from where he pulled the tube. He didn't put a tight dressing over the hole. The doctors didn't want to pull the wet dressing off because they were worried that air might get in. The next xray showed some air.
So today someone from the surgical team put a better dressing on Madi while she was sedated.
About 3:30pm today Mike and I were called to go to the side door of surgery, which was strange. Usually the doctors find us in the waiting room and talk to us about how everything went and then we have to wait longer until they call us back to the recovery room.
Dr. Glass told us about how everything went ok with the epidural. Then Dr. Pimpawar told us that he didn't like the way that the left lung looked today in the morning xray. He said that he thought that where there use to be air in the left lung, now was filled with fluid. He didn't want to do the procedure on the right lung so he didn't do anything. He wanted to wait and maybe do the procedure on Monday. So after everything, the pluerodesis didn't get done.
Mike and I didn't know what to think. Was it safer for the doctor to wait or did he just delay Madi's treatment? I now take it as though it just wasn't meant to happen today.
When Mike and I got to go back in the recovery room to see Madi, she was in pain. Not as much as the last time that we were there a couple of weeks ago. Madi's body was sore from where they rolled her to put the epidural in and where they changed all the dressings on her back and side.
I just talked to our bmt doctor and she said that Madi might possibly be able to get the pleurodesis done here in our room on maybe Sunday or Monday. We will see how the xrays look over the weekend.
Madi also just finished her nightly breathing treatment and she is starting to feel better than she did when she was in recovery.
We are off schedule due to Madi being NPO today and being in surgery. Madi will do her next doses of lasix at 11:00pm and then at 5:00am. I will have to wake her up at midnight to give her all her pills.
If Madi has to have the pleurodesis done, I hope that it will be on Sunday instead of Monday. Austin is having a colonoscopy here at Texas Children's Hospital Monday morning. It would be nice if they could happen at different times and days if possible.
I will let you know what is going on as soon as I know myself.
Thank you all for the love and prayers!

Friday, August 7, 2009 11:47 AM CDT

We are still waiting to go down for surgery. Madi is an "add on" so we just have to wait until they come and get us.
We should be able to come back to the room after recovery instead of going to PICU, if all goes well this time, since the doctors know how Madi will do with an epidural now.
I will update as soon as I can after surgery!

Wednesday, August 5, 2009 9:44 PM CDT

The doctors decided not to pull Madi's epidural out just yet. She will get a new one when she goes back into surgery on Friday.
A surgeon pulled Madi's left chest tube out this afternoon. Madi was very brave. Austin got to watch as the surgeon pulled the "pig tail" tube out. The tube was kind of stuck so the surgeon really had to pull on it pretty hard.
About twenty minutes after he pulled the tube out, Madi's bed and body was saturated with fluid.
Madi had three xrays today. There was a tiny pocket of air in the lung after he pulled the tube out. Hopefully the air will be gone in the morning xray.
One tube out and one to go! We are eager to do the pleurodesis on the right side on Friday. If all continues to go well, I will just update as soon as I can after surgery.
Thanks as always for all the prayers!

Tuesday, August 4, 2009 9:54 PM CDT

The BMT doctors didn't want the surgeons to pull the left tube out yet until we get another xray in the morning, so the tube is in for one more night.
The pain team wants to take Madi's epidural out in the morning. They are very concerned about infections. Tomorrow the epidural will have been in for nine days.
Madi's epidural has been leaking for several days now. The doctors say that this is very common.
Madi has a new large pressure sore on her back just below where her epidural leaks. Wound care came to doctor the sore today.
The different doctors will pull the tube and epidural in Madi's room with her wide awake, so please pray that it won't be too painful for Madi.
I will update tomorrow.
Thanks for the prayers and please keep them coming!

Monday, August 3, 2009 9:40 PM CDT

Late this evening we found out the plan for the rest of the week.
Today they took the suction off of the left chest tube since it hasn't been draining. So if all goes well on the xray in the morning, the surgeon will pull the left tube out tomorrow, which will be on Tuesday.
Now since the right tube is putting out tons of fluid, Madi has to have the pleurodesis done on the right lung too. They said that surgery will probably take place on Friday of this week.
Madi will have to have another epidural put in since they are worried about infections. The epidural isn't as effective anymore for Madi.
They will take out her old epidural and then put a new one in on Friday.
Pray that all continues to go well and know that each prayer is being heard and answered! God Bless You All!

Friday, July 31, 2009 11:34 PM CDT

We left PICU on Thursday after 5:00pm. It is so nice to get back up to the bmt unit. ICU doesn't have restrooms. Parents have to walk really far out of the unit and down the hallway by the elevators to use the restroom. Besides sleeping in a really hard and uncomfortable chair, they don't allow cell phones in the unit.
We also had several problems like Madi's surgical clamp wasn't unclamped after two hours after surgery. The nurse in recovery put it on suction, but she didn't check to make sure all the clamps were unclamped. Mike and I found the clamp still clamped at 8:30pm, 6 1/2 hours after surgery. Several other things have happened during the week as well. I could keep going but I won't.
Madi's first xray after surgery wasn't good because little did anyone know, the tube was still clamped. The second xray looked really good. The third xray yesterday didn't look so good anymore. They are not sure why. Mike and I questioned several things about the water levels suctioning in her tube when we were down in ICU and the different ways that they take samples for the fluid. Perhaps this is why her lung looks like it could have collapsed again. The xray today was better than yesterdays though.
The right tube is starting to drain fluid again. We are still waiting to see if the surgeons want to do the pleurodesis on the right side too. Mike and I were shocked when the surgeon told us that sometimes the pleurodesis doesn't work and it has to be redone several times. It would be nice if Madi didn't have to have the right side done and it would be really nice to get all these painful ten inch tubes out soon and go home.
While we were in surgery/ICU Madi got off schedule with her lasix. Madi gained so much extra fluid. When we got up to our room, our bmt doctors decided to give Madi albumin and lasix back to back every six hours. We didn't sleep much last night. Madi does look better tonight. She just had lasix now. We are back on lasix every eight hours now, so we should sleep more tonight.
I don't think that I wrote about Madi being back on oxygen. The first night in ICU Madi didn't need any oxygen. Since she was still in so much pain, the pain team increased her pain medication in her epidural. She needs oxygen constantly now. The epidural helps a lot, but it doesn't block all of her pain. The doctors are not sure how long Madi's epidural will work. It isn't covering as much area as it did on Wednesday.
Please keep praying that Madi's pain will go away soon and that she can get all the tubes out soon.
I have to go and change lasix diapers now.
Thanks for all the constant prayers coming our way still.

Wednesday, July 29, 2009 8:10 PM CDT

Madi was in a lot of pain yesterday when we got to see her in recovery about 2:15pm. We had to wait in recovery until 5:30pm because a bed wasn't ready in PICU yet.
We were glad that the epidural seemed to be working later in the evening. Madi still had a lot of pain and discomfort. She didn't get to have her nightly IV benadryl so she couldn't go to sleep, so Mike and I didn't sleep either. We are very sleep deprived right now.
Today the pain team went up on Madi's pain medicine. They wanted us to wait several hours to see how Madi's oxygen level would respond to all the extra pain meds.
Well Madi's oxygen level went up and down so she has oxygen blowing by her. Madi will get IV Benadryl tonight so we should get some sleep before 1:00am lasix and 3:00am xray. We sent Mike home so he could sleep in a bed tonight. Madi's room only has two hard chairs for parents.
Madi's left lung xray seems to look very good. Madi's right chest tube is starting to put out a lot of fluid, so Madi might have to have the right pleurodesis done when the left one gets better.
We should get back to our room in the bone marrow unit tomorrow.
Thanks for all the many many prayers that are being lifted up for Madi. They are working. We couldn't do it without the prayers.

Monday, July 27, 2009 10:37 PM CDT

Madi's surgery is on for in the morning. Dr. Glass came by late today and talked to Mike and I about doing the thoracic epidural.
Madi is an add-on for surgery, but the doctor thinks that it will take place between 9:00am-12:00pm.
Please pray that the epidural works for Madi and that the pleurodesis goes well too.
Madi will have to stay in ICU for 24 hours or more.
Please pray pray pray!

Saturday, July 25, 2009 5:39 PM CDT

The doctors told us that if the fluid slows down a lot, there is a chance that Madi can avoid going to surgery. Last night the output was very low, but today there has been a lot of fluid in the tubes.
Last night the nurse took the right tube off of suction. The xray today showed that Madi's lung collapsed a little again, so they put the tube back on suction.
Now they turned the right tube off of suction again.
It would be wonderful to avoid surgery all together if possible. Madi is still on the schedule for surgery on Tuesday though.
I will let you know if anything changes.
Thanks for all the prayers!

Wednesday, July 22, 2009 4:07 PM CDT

We are having some serious problems trying to get Madi's pleurodesis surgery. It keeps getting delayed because the pain team/anesthesiologist keep changing their minds about how to sedate Madi for the surgery and for her painful recovery after surgery.
The plan that we all agreed on was not aproved to be done since it isn't the normal procedure for anesthesia.
We were shocked yesterday when they told us that they would just use fentanyl and ketamine for anesthesia. Around March 2006 Madi had a colon scope done. This is when the Graft Versus Host Disease started flaring up.
The anesthesiologist told us several times during the procedure that he had a lot of trouble sedating Madi so he just kept giving her more and more. Instead of calming her, it irritated and excited her more and more. Later that day she had a terrible seizure and went into a coma. When she did come out of the coma, she was unable to speak and communicate with us. She suffered from severe hallucinations for about 10 days. This was the worst time ever in our lives.
So you can see why we are against using the fentanyl and ketamine again.
Our doctors are consulting other anesthesiologists from other hospitals in the medical center. Madi is very ready to get this over with so the tubes can come out sooner than later.
We know that there is a reason, unknown to us, that God has for the delay. We know that it is all in God's hands, so as soon as we have some news, we will let everyone know. Please keep the prayers coming for Madi and everyone who treats her as well. God Bless You All!

Tuesday, July 21, 2009 9:29 AM CDT

For those of you just checking in, I updated last night.
We still don't know if Madi's surgery is on for today or not. I will let you know when I know something.

Monday, July 20, 2009 10:01 PM CDT

We kept assuming that the pain team was going to come and talk to us during the last several days, but they never came. We were told that they had a plan and that we weren't to worry about it. After speaking to our doctor, who is not taking care of us this month on the inpatient side, she went down to the O.R. and told the pain team that we had urgent concerns about Madison's surgery.
Weeks ago they told us that if Madi ever had to have the pleurdesis done, they would give her an epidural way before she had to have the surgery to make sure that it would work. We didn't think that Madi would be able to do this since she can't bend and move.
Well today a new pain doctor came up with the team. After listening to us tell her more specific things about Madi's drug allergies to sedation medications, she came up with a great plan, we think.
First of all she said that there was no way possible that Madi would be able to even get an epidural since she can't bend to insert it into her spine. We were glad that they figured this out today.
We know what works well for Madi so they plan on giving Madi something very close to the same drug. This drug should allow Madi to sleep safely for the next several days. They also said that we could still wake her up easily on it too if we wanted to wake her up.
I still have that painful memory of when they scoped Madi a couple of years ago and she was in a coma for about a week. The doctor told us that she kept waking up during the procedure so he just kept giving her more of the drug that she turned out to be allergic to.
Madi has been having a lot of nightmares. Several nights now she has had dreams about things going really wrong when she went into surgery.
I thought that she would be happy to be asleep during the worst part of the painful recovery after surgery.
When she woke up in recovery last month with all the pain from the tubes, she was screaming that she wanted some IV Benadryl so she could go to sleep.
A little while ago, Madi was asking me what happens if she never wakes up at all. Over the last several years, I have been to too many funerals of friends that I have made while living here at the hospital. Almost all the kids that have died, have talked about a beautiful lady or Jesus or an angel of some sort, preparing them for death days before they actually died. I don't think that this is Madi's time now. Over the years, Madi does hear an angel from time to time giving her words of encouragement briefly.
I think Madi has a right to be nervous about going into surgery. Of course Madi knows all about Heaven. I think that she is worried because we will have to be in ICU, so if they need our room on the bmt unit, we will have to pack everything up, and boy do we have a lot of stuff since we have been here for 35 days or so now.
There is a 5% chance that she won't have the surgery tomorrow. Since we have to do things differently with sedation, we are still waiting to get full hospital approval before everything is on for sure. I hope that we don't have to wait until later during the week.
They told us to assume everything will happen some time tomorrow. Madi has told me that we will probably put the tv on at 1:00am when we wake up to do lasix, so she can drink a lot of milk and water until 4:00am.
Let us pray that everything goes extremely well tomorrow. Let's pray especially that Madi's angels will entertain her while she has a peaceful long nap and that the pleurodesis will prevent fluid from building up in her lungs.
We are all so appreciative of all the prayers that are being lifted up for Madi.
I will update as soon as I can, or I will have someone sign the guestbook with information about Madi's surgery.

Thursday, July 16, 2009 9:28 PM CDT

Today Madi got her third shot in her leg. I don't think that I wrote about Madi's 2nd shot. Because Madi's skin is so tight, the nurse couldn't get all of it in, so she had to take the needle out and stick her in another place in her leg, so it was extra painful for Madi. Today was much better as for as the shot goes.
Yesterday she got her dressing changed on her central line.
On Tuesday wound care changed the dressing on her left elbow. Everything is so painful for Madi.
The doctors said that Madi has to have the pleurodesis done on her left lung since it keeps draining so much fluid. She can only have one lung done at a time. She will probably have to have the right one does as well.
The earliest day that she can have it done is on Tuesday. We are still waiting for the pain management doctors to get back with us. We are thinking that they will want to try an epidural since this will be very painful for Madi during the first 48 hours after the surgery. We want to make sure that we get better control of Madi's pain before she goes into surgery.
Please continue to pray that the Lord will guide the doctors/nurses in the right direction for what is in the best interest for Madi. Most of all, pray that Madi's pain will go away soon.
We appreciate all the prayers that are being said for Madi!

Monday, July 13, 2009 7:20 PM CDT

We were waiting all day for a surgeon to come and take Madi's right tube out today, but it didn't happen.
All of Madi's xrays have shown that she has a pneumothorax in her right lung. The surgeons want to see if the tube will help drain it. BMT doctors seem to think that this is as good as it is going to get since she has had it there for quite some time. Time will tell. We were all looking forward to getting the tubes out as soon as possible.
The left lung is still draining a lot of fluid.
The doctors are still thinking about sealing Madi's pleuroeffusions with an irritant that will be extremely painful for Madi.
We are praying that Madi won't have to have this surgery. Pain management is one of the biggest concerns that we have for Madi. She still is in so much pain now. We have gone up and down on pain medicine, trying to find something more comfortable for Madi.
Please continue praying for Madi. We appreciate all the prayers coming our way!

Tuesday, July 7, 2009 10:26 PM CDT

The nurse clamped Madi's right tube over weekend. We were shocked when the xray Monday showed that Madi's right lung had collapsed once again. She has a pocket of air in the right lung that is causing all the problems.
Madi got albumin infusions for several days in a row.
Today she got her monthly IVIG infusion.
It's been another long and exhausting day. At 7:00am we awoke to the bright lights of two plastic surgeons that wanted to look at Madi's left elbow again. Madi had an echo again of her heart. She had another xray of her lungs. A wound care nurse came by and cleaned Madi's elbow and put a new dressing on it. Madi also had a new weekly dressing put on her central line.
Madi's tubes are causing a lot of pain and discomfort still. Please pray that her lungs will clear and that no more air/fluid will return.
Pray that the meeting with bmt, pulmonary, and the surgeons goes well on Thursday. Pray that the Lord will lead the doctors into making the best and easiest decisions for what is best for Madi.
Madi has been off oxygen day and night for several days now. Thanks for the prayers and keep them coming, the prayers are working!

Thursday, July 2, 2009 10:58 AM CDT

I just updated last night, but I just wanted to add a few things.
Madi just got a shot of Etanercept/Enbrel in her right leg. She was so scared but very brave and strong at the same time.
I don't know if anyone has read The Houston Chronicle today or not but one of our good friends had to do a college writing assignment and she wrote about Madison.
The editor had to shorten the paper, so the article is not exactly how Victoria wrote it, but it is a nice tribute to Madi. You can also view the article online.
The article in the newspaper only went out in the Pasadena/Baytown area, so if you live out of the area, you won't have it in your paper.
Last night I wrote about Madi getting a new bed. Well all night long bed alarms kept going off. The warning said that the bed was not working and that the patient had to be removed from the bed. A lot easier said than done. We are going to try to keep the bed so we don't have to move Madi. The program settings are turned off so the bed alarms are not bothering us now.
Thanks for the prayers and keep them coming please!

Wednesday, July 1, 2009 10:06 PM CDT

I keep thinking that things are going to calm down around here, but not yet. Madi still has both tubes in.
She has a very serious bed sore on her left elbow that the doctors are very concerned about. The elbow bone is exposed so they are very worried about her getting a bone infection. We have had so many extra doctors looking at her elbow such as: wound care, plastic surgery, infectionist disease doctors.
Pray that Madi's skin will grow back and she won't get an infection. She is on several new IV antibiotics to prevent infections.
Madi still gets a chest xray early every morning.
One day Madi had an echo of her heart, everything is the same. One day the doctors were worried that Madi had a blood clot in her right leg, the ultrasound was ok.
Madi has been complaning about her hips hurting more than normal, so the doctors wanted an xray of her hips. We tried to get the xray two days in a row. It was so painful for Madi that she screamed and cried so hard. The xray turned out to be ok. We have always known that Madi suffers from very poor bone density.
Madi got an albumin infusion at midnight last night, so we couldn't do lasix until it finished at 3:00am. It isn't fun having to keep Madi up in the middle of the night when she is so tired.
Today Madi got a blood transfusion, so she couldn't get lasix until afterwards which was at 5:00pm. The nurse also had to change Madi's dressing on her right drainage tube today which was very very painful for Madi.
We are fixing to do lasix at midnight tonight.
Madi's bed alarm just went off and it makes a really loud noise. It took five adults this morning to get Madi moved into her new bed, which she hates. It has a hard movable air mattress that prevents bed sores. Since it is still very hard on her skin, we had to put the egg-crate pad on top of her bed to give her some more comfort for her bony body.
Please continue praying for Madi to have pain-free days ahead and pray that the Lord will heal her and guide the doctors into making the right decisions towards Madi's treatment.
The doctors said that we will probably be in the hospital at least another two more weeks, but pray that we can leave sooner!

Friday, June 26, 2009 10:46 PM CDT

Just a quick note. Madi's drainage tubes are both still in. We have had so much going on the last few days. We had someone from the surgical team trying to take the right tube out for several days, when it wasn't ready to be taken out. It has been very stressful dealing with her.
Both tubes are draining lots of fluid still so we did the right thing by refusing to let her take the tube out before they were ready to be removed.
When the fluid output slows down or stops, then the tubes can be removed.
Madi is not on any oxygen in the day at all. Her oxygen has been dipping in the low 80's at night, so we put it back on her.
Madi is still in a lot of pain because the "piggyback tubes" are causing a lot of irriation. We have been rolling her on her sides to get the fluid flowing. She really hurts when she is moved into different positions.
Madi has a chest xray every morning and every day our results are better and better.
They decreased Madi's chemo pills that she takes twice a day to only one time a day now. It causes pleural effusions. We are worried that the fluid will reaccumulate after the tubes are pulled out.
Madi's blood work is very unbalanced due to all the fluids going into her and all the lasix that she has been taking.
I am very excited about tonight because the doctors are cutting Madi's lasix down to every twelve hours instead of every eight hours. No 1:00am lasix!!! We both will get more sleep now.
This will be Madi's third night for TPN and her second night for lipids. She loves eating her chicken strips from MD Anderson. I walked down the street today to get her food and I was shocked by the heat outside. She likes our room to stay at sixty degrees or colder constantly.
Madi only weighs 19.2kg which isn't much. Madi is skin and bones. Her spine and tailbone stick out which makes it very painful to lay on constantly in the bed.
Madi is such a trooper. All the doctors and nurses are so impressed with her good manners all of the time. Madi is always thinking of others too. She has given my bracelets away to the cleaning ladies and tonight she told me to take off my bracelet and give it to the PCA when she was taking her vital signs.
Madi has the most generous and giving heart just like all of you that are praying for her. Please keep all the prayers coming our way!

Sunday, June 21, 2009 11:06 PM CDT

Madi has been going through some painful days. She still has the drainage tubes coming out of her sides. The doctor told us that the tubes are attached to nerves, which makes it very painful for Madi.
Madi has a PCA pump which has a button that she can push when she needs morphine. She pushed the button over 100 times yesterday, so they increased the morphine, but she had problems breathing so we decided she was getting too much morphine. She also pushed the button over 100 times today as well. She still is in a lot of pain.
Changing Madi's diapers are very difficult. She has tubes and wires coming from every direction. When she can get one drainage tube removed it will make it much easier to roll her.
Every morning about six o'clock, they bring the portable xray machine into the room to do an xray of her lungs. The left lung looks much much better. The right lung had a lot of air pockets, so to fix that problem, several surgeons came to the room and removed several stitches from where the right lung tube is located on Madi's back. They moved the tube in and out and all around to get the air pockets out. Madi did a great job considering how painful it was for about 20 minutes.
After the surgeons left, Madi said, "please don't let them do the other side today, I just can't take it again." We explained to her that they didn't have to do the left side since it is draining properly. The right tube has been draining a lot of fluid/blood since they fixed the problem.
We were so excited to see old friends today. Jessica and Chaney Phillips were at the bmt/cancer floors today giving out gifts to dads for Fathers Day. It was a bitter sweet visit. Their daughter, Brooke, passed away a few years ago. She was younger than Madison. They founded the BIGLOVE foundation in memory of Brooke. They stay very busy all year long helping cancer patients and their families. We were really sad that Madi wasn't doing well enough to attend the 2nd fun run fundraiser for BIGLOVE in the spring. We will be there next year!
I want to thank everyone for all the wonderful prayers that are healing Madi. Yes she is hurting, but I know it is the Grace of God showered by so many prayers that are getting us through this tough time right now.
Please pray for all those who are sick and for those who have lost loved ones. I don't have enough fingers to name all the kids that we know that have died after a bone marrow transplant. The parents need so many prayers just to get them through the nights and days. I am always thinking about you Paula even though I don't have time to email!

Friday, June 19, 2009 2:14 PM CDT

On Thursday we were shocked to find out the results from her CAT scan. It showed that Madi's left lung was colapsed again. So they quickly got Madi admitted and on the add-on schedule for surgery. I ran home and packed our things for a long hospital stay.
We went down to the OR/PACU at 8:00am. We got back in our room after 1:00pm. We had two different teams of doctors working together. They did a scope and suctioned out mucus. The mucus was so thick that they had to use the adult strength suction since the pediatric one was too weak to work.
They also drained 300ml. of fluid from her left lung. They inserted drainage tubes from both sides of Madi's lungs. The drainage tubes are causing intense pain for Madi. She just now stopped crying and moaning so I could update. She has had a lot of morphine and IV benadryl to help her sleep now.
Please pray that Madi's pain will go away soon. I need to get back to holding her hand. Thanks for all the prayers!

Monday, June 15, 2009 11:11 AM CDT

We were at the hospital until 6:00pm on Thursday. Madi got her monthly IVIG infusion. Madi's magnessium and potassium are still very low, so we are trying to get that up. The doctors decided to put Madi back on steroids, so we have been dealing with that. Steroids make her so emotional and irritable. Hopefully they will make her eat more. She only weighs 19kg.
This week Madi will have a CAT scan and she will also see a pulmonary specialist about her lungs. Please pray that goes well.
Please pray for all those who are seeking medical treatments and for those who are sick.
Mike's dad is still in the hospital. He came up to watch Austin show his pig Tuesday night and had to be carried away in the ambulance. He fell before he came to the show and he fell when he was at the show. He has some fractured ribs. He is at San Jacinto Hospital in Baytown. For those of you that are wondering how Austin did at the show, he placed 5th in his class and 11th over all the pigs. He got $2100.
Please pray for Weston Zucha who will be having dental work done tomorrow. Because of Weston's skin disease, EB, there are not any dentist in Texas that are experienced enough to deal with patients like Weston. I talked to Dana on Friday and they were driving to Kansas. Weston had a consult today and they will do all the dental work tomorrow. Pray that all goes smoothly.
I can't believe Madi will be 11 years old tomorrow! Her best friend is spending the night with her so she is on cloud nine! Thanks for all the many prayers always being sent our way!

Thursday, June 4, 2009 8:21 PM CDT

Madi went to the hospital on Monday and today, which was Thursday. She also had a chest xray, which looks about the same as the one she did last Friday. Madi's blood work looks about the same too.
Madi doesn't have to go back to the hospital until next Thursday since Austin has his Crosby Fair and Rodeo pig show next Tuesday.
I have two more days of work. I can't wait until I can spend every minute with Madi during the summer.
Yesterday Mike and Madi went to Newport Elementary. The school had the 2nd Miles For Madi fundraiser. The staff and students presented Madi with $1,800.00 and she also had bracelet money too. Madi was treated like a princess at NES. Kids sang and danced for her. Mike said that many tears were shed, especially when girls sang the Hannah Montana song, "Climb" to Madi. We are so touched by all the generous hearts of the students, parents and staff at NES. God works good deeds through bad situations.
I also am updating to ask for your support for Ronnie Ellender. Ronnie was in a severe auto/pedestrian accident on Beltway 8 at Spencer Hwy over a month ago. He has gone through multiple surgeries and he still has many surgeries to go. I think he has lost the vision in one of his eyes, if I'm not mistaken. Ronnie is the son-in-law of Bill and Louise Peters.
There will be a blood drive for Ronnie tomorrow, June 5th, from 10:00am-4:00pm at the American Legion Hall in Crosby. I believe there will be a free-will donation bar-b-que dinner/silent auction later tomorrow evening. Baked goods would be greatly appreciated too. I forgot to bring my flier about the benefit home, so if I have anything wrong, someone please correct me.
Our kids get out early tomorrow, so I will get to donate blood at 12:30pm on my lunch break.
Bad things seem to happen to good people quite often, but the Lord shines down on us all with His great love and mercy. He also sends his earthly angels (friends)to help us when we need help the most.
Thank you earthly angels for all that you all do!

Saturday, May 30, 2009 7:16 PM CDT

Yes, we are home. Madi was treated with heavy dieuretics and heavy antibiotics. Of course all her chemistries got too low, so she had to have several magnesium, potassium and sodium infusions, as well as taking several more pills by mouth.
We had to go downstairs everyday for xrays of Madi's lungs. This was so painful for her. She also had a CAT scan done on Thursday. The xrays got a little better. The CAT scan was worse than the last one that she had done over a month ago. The doctors think that the pleural effusions that Madi has had due to transplant are probably back to the baseline that she has had for a long time now. Madi has a lot of carbon dioxide in her body, so this means that her lungs are not very strong to push the carbon dioxide out.
Last year when Madi was inpatient, we had a very rude pulmonary doctor. She was rude to us and our bone marrow transplant doctors. She was mad at us because she thought that Mike and I should have already have signed DNR (do not resuscitate) papers on Madi. She then yelled at our doctors who were in the middle of a rounds meeting with many other doctors. She was very mad last year because she didn't get her way when we (BMT doctors, Mike and I)wouldn't do what she suggested for treatment for Madi. She wanted to do a biopsy on Madi and get a big chunk of her lungs. The recovery would have been very hard on Madi. We have previously done so many biopsies on Madi. Drainage chest tubes that stay in for weeks are so very painful.
Since Madi was having problems with her respitory, the pulmonary team was called in. We had requested a Dr. Phan, but our old Dr. that we didn't like, came to see us twice. The fellow doctor that worked with her, was just like her. It was very painful for Mike and I to deal with her again. Our BMT doctors were very apologetic that we had to deal with her at all. We told the pulmonary doctors that if it was an infection in her lungs, we were already treating her with antibiotics. We already know that she has Graft VS. Host Disease, which is causing most of Madi's problems. The BMT doctors suggested giving Madi three days of very high IV steroids once a month for several months. Madi will have another CAT scan done in a month to compare the scans.
Madi has about twenty different medicines that she has to take in a twenty-four period. Some medicines have to be taken up to four times a day, so needless to say, I stay busy crushing pills. I mix about four of them together at one time to make it easier on Madi. The steroids make Madi so depressed and emotional.
Please pray that Madi's lungs get stronger as well as her entire body. She most importantly wants me to ask everyone to pray for her pain to go away. She has to go back to bmt clinic on Monday.
As usual, please pray for all those who are sick and are undergoing medical treatments. I will update next week.

Friday, May 29, 2009 6:37 AM CDT

I will try to just give a quick update. I typed a long update last night and I kept getting kicked off from the free WI-FI here, so on with the update. The plans for today are doing another xray and then getting discharged today. I will update more in detail when we get home.
Thanks for all the prayers and well wishes!

Sunday, May 24, 2009 10:30 PM CDT

This has been the longest four days and nights. I forgot how bad it feels to be back at the hospital.
On Thursday we had to be at the hospital at 9:00am. Since Madi was an add-on for RI surgery, we didn't get called back until 2:00pm. We got to see her in recovery at 3:15pm. The doctors drained 500 ml. from her left lung. The doctors told us if she did ok in recovery we could go home in four hours. They decided to take an xray and do an ultra-sound before we could go home. All of Madi's fluid had returned back to the left lung where all the fluid had been removed. She was still having a hard time breathing, even when she used oxygen. We got admitted to room 40 on the bone marrow transplant floor before 10pm.
The doctors decided to give Madi lasix every six hours. They wanted to go back in on Friday and do the same procedure, but we highly advised against it. The lab ran all kinds of test on her blood. Nothing was growing but they started treating Madi with heavy duty antibiotics and high doses of lasix. They decided to take xrays everyday and continue all the antibiotics.
Friday evening Madi started running a low grade fever. She started feeling really tired and out of it Friday night. All the lasix had caused her potassium and magnesium to drop to very low dangerous levels.
On Saturday Madi got potassium and magnesium infusions, as well as taking them by mouth. Since it is common for a heart to go into cardiac arrest with such low levels, Madi's chest was hooked up to extra monitors. She was feeling better around 6:00pm.
The doctors had told us if the xrays were worse, Madi would have to have the fluid drained again. They also told us that eventhough we thought that she was better, that didn't mean that the xrays would show it yet.
Well the xrays from Saturday showed a lot of improvement thanks to all the wonderful prayers being lifted up for Madi!
They have been adjusting Madi's fluids accordingly to her frequent blood results that the nurses take every few hours. All the chaos has slowed down a little around here. Madi now only has to get IV lasix every eight hours! Next dose is at 1:00am. I still have to wake her up in the middle of the night to take some pills. Respitory still comes early in the morning and late at night so Madi can do breathing treatments. Sometimes they come between 11:00pm. and 1:30am. Tonight they came before 9:30pm. Things are getting better.
We had a lot of kinks to work out too when she was admitted. They kept giving me the wrong pills to give Madi eventhough we spent twenty minutes updating pre-surgery nurses about what Madi was currently taking. Today was the first day that all the pills were right. She takes so many pills. I still crush them since she choked on one last year when we were in the hospital.
The protocol for the IV antibiotics is 7-10 days. We are hoping that we can give some IV antibiotics at home, but we could be here 7 or more days too. Who knows?
I am just thankful that Madi is doing so much better. I know that it is only because so many wonderful people are praying for her. She just now fell asleep and it is already 12:30am. I have been jumping up and down for two hours since I started trying to update.
Please continue praying for Madi as well as everyone who is sick or getting medical treatment. We met a dad of a two-year-old boy while we were waiting during Madi's surgery. He was telling us that the mom had abused his little boy. The little boy had all kinds of monitors hooked up to him. The doctors had told the dad that the little boy was going to die several months ago. He has several surgeries to endure still, but he is alive. The dad was telling us that he had to quit his job to take care of his son. He just now is getting home health care to send nurses out to his house. He told us how fortunate he is to have the support of a local motorcycle organization.
He said that they have been to court with him. He told us that a few weeks ago that over 300 bikers surrounded his house, held hands and prayed for his son.
It is so amazing to hear about how the power of pray works through so many different people!
We feel so very blessed to have so many wonderful people praying for Madi. Many of you have never even met Madi, but we are so thankful for each and every one of you!

Wednesday, May 20, 2009 7:10 PM CDT

Madi just got home from her daily Wednesday appointments at the hospital. She did her normal physical therapy and bone marrow clinic visits. Madi got her chemo infusion to help with the GVHD.
The doctors also wanted to do another chest x-ray to compare with the one they did last week. Todays x-ray was much worse. Madi's left lung is filled with fluid. She still has a few spots on the right lung.
So Madi will have day surgery tomorrow to drain all of the fluid out of her lungs. They told us to pack our bags to stay just in case there are complications.
Madi has had this procedure done several times before. It has been a really long time ago though. Since it was such short notice for surgery, Madi is an add-on the schedule, which means we could wait all morning and afternoon. We have to be there at 9:30am.
Please pray that everything goes well tomorrow. Hopefully she will get in and out of surgery quickly and smoothly as possible and she won't have any side-effects from the sedation drugs or any severe pain afterwards.
Madi is looking forward to breathing easier again. She struggles now even with 5 liters of oxygen constantly blowing on her face/nose.
Please pray for a smooth transition with everything and everyone tomorrow. When we live at the hospital, everyone in every department knows Madi and her condition. We haven't had to be there in such a long time. We are praying that we get all the wonderful staff that is familar with Madi and her condition. Texas Children's Hospital is so wonderful.
Please pray for all those who are sick and are seeking medical treatments right now. I will update tomorrow night or I will get someone to update on the guestbook entry. Thanks for all the love, support and prayers!

Monday, May 18, 2009 7:21 AM CDT

Madi is doing better. She is asleep by 12:30am every night. Madi's cough is doing much better too.
We went to a family reunion yesterday and it was so nice to have cooler weather.
Thank you for your prayers and enjoy the nice weather!

Tuesday, May 12, 2009 10:41 PM CDT

I hope all you moms out there had a wonderful day Sunday on Mother's Day. I was counting my many blessings.
Madi's nights are getting better. The IV Benadryl is helping so much now. I have been getting six hours of sleep a night and I am in Heaven!!!!
Madi wants me to ask everyone to pray for her so she won't get choked-up. She gets choked-up and she has trouble breathing, even when she has her oxygen mask on her face. It scares us all when it happens.
Over all Madi is doing better. The doctors decided last week that she won't get her regular chemo infusion tomorrow. Madi will get a break for another week.
She will still go to PT and bmt clinic.
Mike's dad got out of the hospital over the weekend. He has been in the hospital for over seven weeks now.
Please continue to pray for all those who are undergoing medical treatment and for those who are sick.
Prayers are being answered everyday!!!

Tuesday, May 12, 2009 10:41 PM CDT

I hope all you moms out there had a wonderful day Sunday on Mother's Day. I was counting my many blessings.
Madi's nights are getting better. The IV Benadryl is helping so much now. I have been getting six hours of sleep a night and I am in Heaven!!!!
Madi wants me to ask everyone to pray for her so she won't get choked-up. She gets choked-up and she has trouble breathing, even when she has her oxygen mask on her face. It scares us all when it happens.
Over all Madi is doing better. The doctors decided last week that she won't get her regular chemo infusion tomorrow. Madi will get a break for another week.
She will still go to PT and bmt clinic.
Mike's dad got out of the hospital over the weekend. He has been in the hospital for over seven weeks now.
Please continue to pray for all those who are undergoing medical treatment and for those who are sick.
Prayers are being answered everyday!!!

Wednesday, May 6, 2009 11:48 PM CDT

Madi had a terrible day today. She went to the hospital for her monthly IVIG infusion which helps boost her immune system.
Madi's uric acid was really high again, so they gave her an infusion for that too. Madi had a terrible reaction from the infusion. Mike had left the floor to get some coffee. Madi told my mom that she was feeling really bad and strange. Mom got a nurse and the doctors all came running. Madi's body started swelling and she couldn't breathe. She was crying and upset. To make a long story short, Madi is at home and ok. They gave her drugs to help with the reaction and she also got a breathing treatment. They waited to make sure Madi was stable enough to come home. They gave Mike an epi-pen and told him to call 911 if it happens again at home.
So far everything is going ok. Madi is still in a lot of pain and she can't get comfortable. The doctors told us that we could stop giving the anti-fungal infusions at night, which is really good. I think this is why she needed a blood transfusion last week.
As far as staying up until 3 0'clock in morning, the doctors said that we could give her an IV form of benadryl to help her relax and go to sleep sooner. Well, it worked a little, but she still isn't asleep yet. She is really upset that she isn't sleeping yet. So she is crying about that.
She just asked me for some cereal right now. This is the first thing that she has eaten all day. The IV antibiotics that she got last Wednesday and Thursday caused lots of loose stools during the last seven days.
Madi lost 1 kg. this week. She weighed 21 kg. today.
Please pray that Madi can start feeling better soon and and please pray that our nights will get easier too. I'm going to rub her legs now, maybe that will help her to relax.

Thursday, April 30, 2009 11:22 PM CDT

I took off from work today so I could go to the hospital with Mike and Madi. While we waited to get Madi's cbc results, she got an IV antibiotic infusion just like she got yesterday. Madi's hemoglobin had dropped even more, so she got a blood transfusion.
Madi woke up at 6:30am complaining about her elbow and arm hurting. Wound care came by and gave us medicine/dressing kit to take care of it daily. They will look at her elbow again next week.
So far, all of Madi's blood tests have came back negative for bacterial infections. She is also negative for the Swine Flu. Let's pray that she stays that way.
The hospital was so crowded with kids getting tested for the Swine Flu.
Let's pray for a full speedy recovery for all those who are sick. I will update next week or sooner if I have any new news. I am fighting to keep my eyes open right now!

Wednesday, April 29, 2009 10:53 PM CDT

Madi is at home tonight, she didn't have to stay at the hospital. They did more blood work trying to find the source of her fever. Madi got several IV antibiotics. She had some breathing treatments. They did a nasal wash as well.
Madi's oxygen has been really low even when she is using oxygen. Her hemoglobin has been at eight for many months now. The doctors decided that she will get a blood transfusion tomorrow. Madi will also get more IV antibiotics.
Please pray for all those who are sick and for their caregivers too!

Tuesday, April 28, 2009 11:39 PM CDT

We just got our computer back. It's been in the repair shop. I think that an anti-virus program caused all the problems.
Madi had an ekg and an eeg last week, but we don't know the results yet. The doctors switched Madi to an iv form of antifungal, so we run her transfusions for an hour every night. They also have Madi doing breathing treatments every night too.
Madi and Mike participated in the survivor lap for the Baytown Relay For Life on Friday night. We got back in the van before the huge storm/flood rolled in.
Madi still has a bad cough. She started running fever (100.7) at 4:00pm today. The bmt doctors never called me back. I am praying that they won't admit Madi to the hospital tomorrow.
We are giving my mom and dad a 55th anniversary party on Saturday. Please continue praying for Madi and all those who are sick.

Saturday, April 11, 2009 3:44 AM CDT

I want to wish everyone a Happy and Blessed Easter!
Reflecting during this week of Holy Week, I admire how willingly Madi suffers and carries her cross just like Jesus did for all of us. It's painful to watch Madi struggle through the little things that we often take for granted.
During the last few weeks, Madi's body has been softening! She has a long way to go, but it is clear that our prayers are being answered!
I took off from work on Wednesday and went to the hospital with Madi and Mike. Madi was in so much pain at physical therapy. Since her body is softening some, Kristen, Madi's therapist, was able to stretch her and push her more. Madi was able to get on a swing with Kristen, which she hasn't done in almost a year. Let's pray that Madi's body will continue to make progress like she is doing now.
At bone marrow clinic, Madi got her monthly IVIG infusion.
Madi still has a cough, so she had a chest x-ray before we left the hospital. The x-ray looked ok to the doctors but they want her to have a CAT scan next week so they can have a better look.
Madi had fungal traces again in her blood work, so we have switched from a pill form to a liquid anti-fungal.
Madi's appointment with pain management is next week. Madi went to sleep at 6:00am yesterday morning for the night. I just got her to sleep now and it is 4:30am. I have had to put the lap top down about 12 times to help Madi in the last 45 minutes. I will wrap up my update so I can get some sleep.
I just can't thank each of you enough for all your prayers. It is obvious that we are getting our miracles each and every day.
Please continue to pray for all those who are sick and are undergoing medical treatment. Mike's dad is still in the hospital and Laura Mangum's mom is still in St. Lukes Hospital. They will have many many weeks before they will be well enough to go home.
Please pray for all those who have lost loved ones, young and old. It is not enough to say that they no longer have to suffer pain on earth. Pray that their families will find strength and happiness until they can be reunited with their loved ones in Heaven one day.
HAVE A JOYFUL AND BLESSED EASTER!

Wednesday, April 1, 2009 11:49 PM CDT

Madi has been having some really bad late nights still. We are lucky if she is asleep by 4:00am. We have tried sleeping pills before but they have an adverse reaction on her body.
Madi's legs hurt her so much, especially at night. The morphine for her pain is what is keeping her awake. She does sleep in on days that she doesn't have to go to the hospital. Madi never takes naps during the day.
She does nap when she is getting her chemo infusion like today. They pre-med. her with tylenol and a lot of benadryl.
They decided today to stop giving Madi her monthly patamadine breathing treatments. She will take pills three days a week instead. Madi is excited about this.
Madi has a bed sore blister on her left elbow that is causing her a lot of pain.
The doctors are trying to make an appointment with the pain management doctors to see what we can try to make things better for Madi.
Please pray for all those who are sick, recovering from surgery/treatments and for all those who have lost loved ones. As always, thanks for all the love, support and prayers. We really do appreciate you all.

Sunday, March 22, 2009 3:02 PM CDT

Spring break has come and gone so quickly! We can't wait until Easter!
Austin made it through his pig sift on Thursday, but he just fell a couple of places short from making the sale.
I think his pig weighed around 280 pounds.
Mike and Austin are at the pig barn now working with Austin's new pig that he will show in Crosby in June.
Madi has had a great week. Something a little traumatic happend to her though. One of Madi's crowned molars fell out on Wednesday. It bled for a long time too.
She feels very conscientious about her teeth. Madi has poor dental hygiene due to all the medicines, radiation and chemos. Madi can still brush her own teeth but we have to bring everything to her in bed so she can swish and spit.
Madi is also excited to be getting Father Fred O'Conner back in Crosby! Father O'Conner has been retired for a very long time now. Usually on Saturdays, when Father goes to the prison in Dayton, he stops at mom and dad's house for lunch and he gives Madi communion. We are so excited that we will get to see him more!
As always, thanks for the love and prayers!

Wednesday, March 11, 2009 7:50 PM CDT

Madi has been feeling worse during the last three weeks. When Madi is her "normal" self, she usually goes to sleep around one or two in the morning. She has been falling to sleep around 3:30-4:30am the last few weeks. Mike and I take shifts sleeping so she can have constant assistance. Madi's face has been rashy and swollen. It seems as though she is having an allergic reaction to something. A couple of months ago they had a recall on the brand of morphine that she has been taking for years. Mike and I think that the rash flares up after she takes the new brand of morphine. Of course the seasonal allergies could be causing a little of the problem as well.
Madi's legs have been hurting more too. Usually her uric acid is higher when her legs hurt, but today everything seems to be in her "normal" range.
So here's the update on todays hospital visit. Madi got her chemo infusion. They switched Madi's brand of morphine to one that she has never had before. She seems to be doing better so far. They want us to start her on Clariton to see if that might help as well.
We are all looking very forward to spring break next week! Hopefully I will get to watch Austin show his pig in Houston next Thursday.
Thanks for all the love, support and prayers.
THE PRAYERS DO MAKE A DIFFERENCE!!!

Friday, February 27, 2009 11:47 PM CST

Madi is excited about the weekend. Tomorrow we are going to the high school stadium at 5:00pm for the E.B. Foundation fundraiser in honor of Weston Zucha. Weston is in the 8th grade and he suffers from the painful skin disease that is called E.B. for short. I'm sure that you can still pay $10.00 to walk tomorrow if you wish.
The walk is from 5:00-8:00pm.

We are also having another fundraiser at the kindergarten tomorrow. All proceeds from the garage sale go to the Children's Leukemia and Lymphoma Society. The garage sale will be in the gym/motor lab from 8:00-3:00.

Maybe we will see some of ya'll tomorrow!
Thanks for all the love and prayers.

Monday, February 16, 2009 7:31 PM CST

Happy President's Day! I had a teacher's inservice day today, but Austin was home with Mike and Madi.
Austin, Mike and Madi are all doing better. Madi didn't get her chemo infusion last Wednesday because she still had a little cough, so the doctors thought that it was best not to give it to her yet.
Madi's new glasses came in and she loves them. She complains about them hurting her face, so she mainly just wears them when she reads.
We have been visiting a lot with family. My first cousin's son was home from Iraq. Anthony is a marine. We got to visit with all of Theresa's six kids.
I am a great Aunt again. My nephew, Ryan, has a new baby girl. Madi loved holding baby Daisy on a pillow on her lap in her wheelchair.
We all got together for a Valentine's Day party at mom and dad's house Saturday night. Madi signed 100's of cards for everyone. She took lots of cards to the hospital too.
As usual, thanks for all the prayers and keep them coming, they really do make a difference.
May the Lord Bless each of you and keep you safe and well always!

Wednesday, February 4, 2009 11:14 PM CST

Just a quick update. Mike is doing much better. All of the antibiotics are helping him a lot.
Madi went to the hospital today. Madi tested negative for the flu and RSV, thank goodness. She also had a nasal wash, which she hates, and a chest xray.
Please pray that she has an easy and pain-free day on Friday. She has an eye appointment and she will also get her monthly IVIG infusion. Madi has been complaining about blurred vision for a couple of weeks now.
Thanks for all the prayers. Please continue to pray for all those who are sick and have lost loved ones.

Sunday, February 1, 2009 11:56 PM CST

Madi still has a little cough, but she is doing ok.
Mike has really been sick. We don't know if he has a serious infection or if the lymphoma could possibly be back. All of his test results are still pending.
Austin even missed two days of school last week. He tested negative for the flu.
I stayed home on Wednesday to take care of Madi since Mike was sick and had two doctors appointments.
Madi wanted me to tell everyone that she is really really hurting, but she thinks she is getting better.
I will let you know what is going on with Mike when we find something out. As usual, thanks for all the prayers and keep them coming.

Monday, January 19, 2009 3:18 PM CST

I have good news to report. We just got off the phone with Madi's doctor and the ultrasound of her kidneys is better than the doctors expected. The xray of Madi's lungs showed improvements with her pleural effusions that she has had since transplant. The doctor said that the machine that checks the EBV level was broken, so we don't know the level yet.
We also have news about Mike. Mike did a two day stress test last week. He went to the doctor this morning and got his results. His heart has lost dexterity and his heart valve is prolapsed due to the chemo that he took for his MS. Mike has another prescription to add to his daily pills.
We have some sad news to report about one of Mike's co-workers at Exxon/Mobil. Bill Sarafin died at work a few days ago. I think that the cause of death was a heart attack. Mike is going to the visitation tomorrow in Pearland.
Please pray for all the families and friends that have lost loved ones.

Saturday, January 10, 2009 11:54 PM CST

Just a quick update. I dropped off Austin and some other guys last night in Livingston at the Cho-Yeh retreat center. I have to leave the house at 6:00am tomorrow so they can be back for the 10:30am mass. I was going to send Mike in the morning, but the hospital called last night and said that Madi's EBV virus is extremely high, so they are very concerned. He and mom will take Madi into the hospital in the morning to do more blood work. If her EBV count is still high, the doctors will have to do something about it. They treated her a few years ago with chemotherapy.
Dr. Doug Myers froze some of Madi's cells last year. The plan was to give the cells back to Madi if her EBV counts went to a high level again. Madi's cells should be trainned to attack the EBV. They will take Madi's blood tomorrow to see how high the EBV counts are and they should get the results back in a few days.
Please pray for all those who are sick, recovering from surgery, and for those who have lost loved ones.

Wednesday, December 31, 2008 10:49 PM CST

HAPPY NEW YEAR!
I hope everyone had a Blessed Christmas. We sure did.
Madi had physical therapy and clinic appointments today. Madi had her chemo infusion this afternoon. She has a cold virus so she doesn't feel very well either.
We just got home from Uncle Philip and Aunt Cheryl's house. Madi watched the boys shoot fireworks from the window. She was tired from being gone all day and wanted to come home and get in her hospital bed. Mike has been having some really bad MS days here lately so he is in bed already. I gave blood at St. Luke's Hospital today so I am tired too. Madi has been going to sleep between 2:00am-3:00am. I usually make coffee around 10:00pm. I go back to work on Monday, so I'm praying that Madi can start getting to sleep earlier every night. I am enjoying my days off from school.
I hope everyone has a safe and happy 2009!

Thursday, December 25, 2008 1:35 AM CST

Madi just fell asleep but I wanted to wish everyone a very Merry Christmas and a Happy New Year to all.
Please keep praying for all those who are sick and especially for those who have lost loved ones.
Remember JESUS IS THE REASON FOR THE SEASON!

Sunday, December 14, 2008 10:38 AM CST

Last Saturday Austin and I went to deliver food/presents for the needy in our community. Afterwards we headed out of town. We have always wanted to go to the San Antonio River Walk while it was decorated for Christmas, so we finally were able to go and see the beautiful lights. My brother and sister-in-law went too. We first went to San Marcos and picked up my nephew, Daniel. I always love showing the kids where I graduated from college.
The weather was perfect. We enjoyed our long walk from the Riverwalk Plaza down to the mall. We ate great Mexican food outside. We enjoyed listening to the Christmas carols being sung from the boats. We made it back home to go to church Sunday night.
This week has been a really busy week too.
We enjoyed all the snow on Wednesday and Thursday! At first Madi didn't want to go out in it like Austin did. Austin enjoyed playing in the snow with the neighbors.
I brought in a large pan of snow for Madi to play with in her bed. She then decided that she wanted to go out around 10:00pm. It was snowing so hard that she had to use a large umbrella so she wouldn't get wet.
Madi had a 3rd and 4th grade lock-in at Newport Elementary School for student council on Friday night. She had so much fun seeing old friends and making new friends. The hardest thing for Madi is not getting to go to school and being with friends since she doesn't have an immune system. We got home around 1:30am.
Yesterday Madi wanted to go to the Crosby Christmas Parade at 4:00pm. After the parade our van's battery was dead. We got it going though.
Madi heard about the Christmas play at the high school so she wanted to go see Scrooge at 7:00pm. She was invited to be in it this year, but Mike and I were worried about her picking up germs, so we told her that she could wait for another play. She was ok with that. Mr. Blanchard, the drama teacher, personally came over and invited Madi to be in other plays in the future. She asked him if she still couldn't walk when they do the next play, if she could use her powerchair or wheelchair. He said of course. Madi has been in three plays at the high school already.
We are always so touched by everyone's kindness and love for Madi.
Madi's third year anniversary since her bone marrow transplant is coming up on December 16th. She likes to call it her other birthday. Of course there has to be presents and a birthday cake too. Which she so worthy deserves.
The doctors are trying to decide on if and how they are going to change up Madi's medications. Since each kidney is only functioning at 50% each. The doctors say that Madi's kidneys have permanent damaged from the total body radiation that was necessary for the transplant. The doctors want to protect the kidneys from more damage down the road.
Madi has been staying busy beading. I want to thank everyone who has been buying Madi's bracelets for Christmas gifts.
Everyone's Faith, Hope, Love, and Prayers have carried us through these difficult years. I want to ask you to continue praying for Madi's healing as well as all the others who need prayers who are struggling with problems in their lives. You all are so very dear and special to us!

Monday, November 24, 2008 9:31 AM CST

I am so excited that I get to go to the hospital with Madi today for physical therapy and bmt clinic appointment. We found out last Friday that Madi tested positive for C-DIF. This is like a microrganism that eats all of her good bacteria in her body, so she has a new medicine that she takes four times a day. Madi has had this before.
Madi's uric acid level is really high again, so she will get an infusion to help bring down the uric acid. She will also get her chemo infusion today.
Mike and Austin had tag in this morning for the Houston show, so they were up at 5:00am. I just talked to Mike and he will make it back to take Madi to the hospital with me this morning. I know several of you were asking mom how Austin did at the EXPO show in Humble on Oct.30th. Sorry I forgot to update about the show. Austin got 2nd in his class and 5th over all the pigs, so he was happy about that. He got $2,300.00
Well the Crosby Cougars lost Friday night. It was such a great game until the 3rd and 4th quarters. Austin got to wear his uniform and watch from a close distance on the side lines.
It is so nice not having to go to work. I bet ya'll were surprised by the quick new update!
As always please pray for all those who are sick and undergoing surgery and for all the many who have lost loved ones and will not get to be together during the holidays.
HAVE A SAFE AND BLESSED THANKSGIVING!

Thursday, November 20, 2008 11:31 PM CST

I can't believe how fast time flies. We already have a couple of neighbors that have Christmas lights up. I guess I should take the pumpkins out of the flower-beds soon.
We have been staying busy with Austin and football. His freshman team tied for first place. Last week Austin was asked to join the varsity team for the playoffs, so he had practice all last week in the rain. Of course he didn't play in the game last Friday night against Lumberton, but it was an honor being asked. Over the weekend Austin got so sick. Mom took him to the doctor Monday morning and the doctor said that he had an upper respiratory infection and a double ear infection. So Austin wasn't allowed to go to school until Wednesday and he couldn't practice football at all since the doctor was afraid that he would rupture an eardrum. I think that he will be on the side lines tomorrow night when we play Brenham in Galena Park. GO COUGARS!!!
Madi is being the strong girl like she always is. Madi's legs still cause her a lot of pain. And of course we still have constant sleepless nights. My shift ends after midnight most of the time.
Madi had a GFR kidney test with nuclear medicine yesterday. We still don't know the results yet. Madi's central line was causing a lot of problems after the kidney test. One of her lines ruptured, but the TPN nurses were able to repair the line with a kit. I was relieved to know that she didn't have to go into surgery and have a new line put in.
I can't believe that Thanksgiving is almost here. Please pray for all those who have lost loved ones. It will be so hard to get through the holidays without their children with them here on earth.
Also pray for all those who are sick and for those who will be having surgery soon. Let's pray that they all have a speedy recovery. I hope you all are staying healthy and well too.
WE ARE SO THANKFUL TO HAVE EACH ONE OF YOU ALL IN OUR LIVES. YOU ARE ALL SO LOVED AND APPRECIATED MORE THAN YOU WILL EVER KNOW!

Sunday, October 26, 2008 8:41 PM CDT

Sorry it has been so long since the last update. I stay extremely busy at work. On Tuesday I left the house at 6:45am and didn't get back home until 8:15pm. I did come home to change clothes and see Madi for about 20 minutes that evening. I guess that is why she stays up until 2 or 3 in the morning because she wants to spend time with me. I miss her so much during the day, but I have to work.
Week before last, Madi had to go to Texas Children's Hospital four times during the week. She is now on only two days a week schedule. The CAT scan showed that she has kidney stones due to all the lasix that she has to take twice a day. So add the instant removal of her kidney stones to your prayer list.
Austin is staying busy with football practices and games. He and Mike have been really busy getting his pig ready for the EXPO show coming up this week in Humble.
We had some really really sad news about yet another one of Madi's good friends at the hospital that just earned her angel wings last week. Angela Brown, who was from Orange, had been such a strong and courageous fighter. Angela not only had undergone a bone marrow transplant, but she also had a liver transplant and was fixing to have a mini-bone marrow transplant. Please prayer for her family as they try to live each day withouot her.
As always, thanks for all the love and support and keep the prayers coming!

Thursday, October 9, 2008 7:20 AM CDT

Madi has had a rough week again. She has a specific virus that keeps escalating in her body. Yesterday she fasted all day at the hospital for a CAT scan and she even had to drink all the contrast, but she didn't even get one after all. Madi's potassium and magnesium were critically low, so she had to get an infusion to her get her counts balanced.
She has to go back to the hospital again today. She also has to go back tomorrow and get a chemo infusion that might help dealing with the EBV virus.
The doctors have decided to hold off on all her Lasix for right now, which is so nice for a change.
Pray that Madi's fluid doesn't return and she can stay off Lasix for good. Also pray that if there are any types of infections, that they all leave Madi's body for good.
Now for an update on Weston Zucha. He went to TCH on Tuesday and his counts are so much better, so thanks for the prayers and keep them coming as usual!

Monday, October 6, 2008 7:33 AM CDT

Madi woke up at 6:00am throwing-up, so please pray that she feels better soon.
Austin hasn't been feeling too well either.
We finally got cable back this past weekend. Our home telephones still don't work.
Thanks for all the prayers!

Thursday, September 25, 2008 3:53 PM CDT

Keep praying for Weston, he is having a lot of test ran still.
Sean's memorial service will be held at Janna's house Saturday night, 6-9

Wednesday, September 24, 2008 3:21 PM CDT

It feels good to be back at work with everything working.
Weston is being admitted to Texas Childrens Hospital. His hemoglobin and iron are extremely low.
A memorial service will be held for Sean Spencer on Friday. His funeral service will take place in California, where he was in the Navy.
I will update when I have more specific details.
Madi has been up until three in the morning for the last couple of weeks. She has extreme leg pains. She is also now having withdrawls from not being with me since it's time for me to go back to work. I miss her so much too.
Pray for those who still don't have electricity

Tuesday, September 23, 2008 7:53 PM CDT

This is Mike,we still don't have internet or cable but Karen wanted me to update and ask everyone to pray for Weston Zucha. Weston was unable to have surgery today and his CBC could be causing some problems for him and he might have to go to the ER tonight.
Also Pray for David and Janna Spencer because their adult son, Shawn died a few days ago. Karen will update more tomorrow. Thanks for the Prayers.

Friday, September 19, 2008 2:36 PM CDT

Yes, we are ok. We lost power last Friday at 6:50pm. We still don't have power yet, but right now we are at bmt clinic at TCH getting Madi's chemo infusion. She was suppose to get it on Wednesday, but the chemo wasn't available.
We are making the best of the situation. We are really enjoying all the family time together.
Right now, Austin is volunteering at the POD at the high school.
During the eye of the hurricane, Mike and I took flashlights outside to assess the yard. We were very fortunate that the neighbors tree didn't fall onto our garage/kitchen. The top part of that tree was just missing. After the hurricane had completely passed, we lost a tree in our front yard. It had been blown over, snapping at the roots. The tree fell onto another tree that was stable, so we had to pay someone to cut the one tree down quickly before it went through the front bedroom. We have another tree that we have to cut in the backyard too.
The doctor is coming in to talk again, Madi's potassium and magnesium are very low again.
We have many blessings to be thankful for, hopefully you all do too. Let us know what you did during the hurricane and how everyone is doing, if you are like me, you don't have power yet so you can't get online.
I was excited that Madi was able to meet Jan before the hurricane. We also met Miss. Julie yesterday when we went to Denny's to eat. It is always such a small world!
Take care and have fun cleaning!

Thursday, September 11, 2008 6:55 PM CDT

It's been a really hard week again for Madi. Besides going to physical therapy and bmt clinic, Madi also had an eye appointment and had to get her eyes dialated several times, which she hated. She also went to see a skin specialist and had to get a small growth cut off of her left arm. Of course she was awake during the procedure, so it was really scary and painful. I was in worse shape since I could only console her over the phone.
Of course when it rains, it pours around our house. On Tuesday our air conditioner completely went out. So we had to have a complete new unit. I highly recommend Hudson Air Conditioning & Heating in Crosby! They put the system in quickly today.
Last month when we thought that Gustav might come our way, Mike put a window air conditioning unit in our master bedroom, so it came in handy while our AC went out. We moved Madi's hospital bed out of the living room and into the cool air.
After we had evacuated from Hurricane Rita several years ago, we bought a generator, so we have it all ready to ride out Hurricane Ike at home.
I pray that the Lord keeps you all safe during the next several days.
God Bless Us All!

Monday, September 1, 2008 10:19 PM CDT

Sorry that it has taken me so long to update. Life is so hetic since I went back to work.
Madi got her new power-chair on Monday. Due to her new chemo infusions, the doctors have added another antibiotic and increased Madi's steroids, so of course she feels worse with more meds.
She is excited that she will have a new place to sell her bracelets, so she has been staying busy beading.
Austin loves high school. He played in Port Authur last Thursday and won 38-22.
Mike went to his main MS doctor in Houston last week. Dr. Brode said that the blue chemo that Mike use to take for his MS years ago, has been taken off the market. Madi also took Navantrone when she was on the 9th floor at TCH when she was first diagnosed. This chemo is more than likely what caused Mike's lymphoma.
Please pray for all those who had to evacuate from the hurricane. Let's pray that they will be able to return home soon.
Thanks for all the love and prayers!

Sunday, August 17, 2008 1:30 AM CDT

Thanks for the birthday well wishes for Mike and Austin. Today is both of their birthdays.
Madi is doing a little bit better. She did just vomit at midnight though. Madi's leg pains are worse during the last week, but I think that they are hurting in a good way, if that is possible.
Madi's new chemo and the prayers are working! When Madi was at physical therapy on Wednesday, the therapist noticed that Madi's joints seem to have a little range of motion that she has never had during the last 18 months. So we are so excited about that.
For those of you who are new to Madi's page, she had a bone marrow transplant in Dec. 2005. She is in remission with her cancer, but Madi suffers from Graft Versus Host Disease, which developed after transplant. Madi's body is stiff and hard. She can't walk at all or even sit in a chair by herself. She has constant pain. She takes morphine for the pain, but that only helps a little.
Since Madi is on immunosuppression drugs for GVHD, she can't go to school since she doesn't have an immune system. Madi has several doctor's appointments every week at TCH.
Madi can do things with her fingers. She can feed herself with a fork. She can't reach her mouth without a fork or a spoon though. We have to scratch her nose, head and legs for her constantly.
Madi started making bracelets last year when Austin would have football games. I bought some beads so she would have something fun to do with grandma while I went to Austin's games. She loves beading and her bracelets are for sale at Tepot Depot in Highlands and at Laura's Cleaners in Crosby. We are very thankful for all our Madi bracelet buyers!
Madi loves donating bracelets for organizations that give to the kids at Texas Children's Hospital too.
I have to go back to work on Monday, so please pray that Madi will be ok with me gone all day. I will miss her so much too.
Madi will also get her second dose of chemo in clinic on Wednesday, so please pray that she won't have terrible side effects like she did the first time. She still takes chemo pills at home twice a day too, but they are not as strong as her chemo infusion that she gets every two weeks.
Please pray that Madi will continue making progress in physical therapy too.
We are so blessed to have so many wonderful people praying for our family.
May the Lord Bless you and keep you all healthy, happy and safe always!

Monday, August 11, 2008 1:24 AM CDT

Madi's chemo is really hitting her pretty hard. She only gets it every two weeks, so side effects should be getting better soon.
Thanks for all the love and prayers.

Tuesday, August 5, 2008 12:21 AM CDT

I hope everyone is staying dry as possible today.
Madi is starting a new chemo for her GVHD tomorrow, so please pray that it will be effective and won't cause any side effects.
I'm also asking for prayers for Madi Goff from Crosby. Madi will be going into the 3rd grade. She is currently at Texas Children's Hospital being treated for a very serious staff infection.
Thanks for all the prayers!

Thursday, July 24, 2008 6:44 PM CDT

I have signed on many times to update, but things get hectic, so I have to put it off until later.
Austin had to go to the doctor several times last week. He had contact dermatitist. He also had to go to his cardiologist at TCH. He hasn't been having any problems with his heart, but since he has had a heart condition, he had to be cleared so he could play football for 9th grade. They also wanted some of our blood for WPW research too. Austin had to wear a Holter Monitor for 24 hours, so if everything is good, he will be cleared for good since he had his heart ablation.
I went to the doctor on Tuesday. I had an alergy infection that turned into a severe sinus infection, so I got a shot and some antibiotics too. I did blood work this morning.
Madi is hanging in there, just like always. She is such a trooper. We were watching a show the other day and the little girl on tv was talking about how she wishes that everyday could be her birthday. Madi said that she wishes that everyday could be Christmas. I said oh, so you could get more presents, and she said no, because it would be great if it could be Jesus' birthday everyday. She said that it wasn't about her, but Jesus instead. I was touched that she put Jesus' birthday above her own. She is always amazing me.
Thanks for all the prayers everyone. I talked to one of my friends that lost a child after a bone marrow transplant back in 2004. Stacie moved to San Antonio a few years ago. She has had a lot of medical problems with her kidneys, but the good news is that she is pregnant! So please add Stacie and baby, as well as all the other mom's that are expecting to your prayer list too.

Saturday, July 12, 2008 7:38 PM CDT

Just a quick information update...
Pat Duggan's viewing will be on Tuesday from 5:00-7:00pm at Sacred Heart Church.
The rosary will be recited at 7:00pm.
The funeral will be on Wednesday at 11:00am at Sacred Heart Church.

Friday, July 11, 2008 7:44 PM CDT

I just got off the telephone with Isabel Salaiz and she told me that Patrick Duggan died this afternoon.
I will post again when the arrangements have been finalized.
Please keep Veronica and the family in your prayers.

Thursday, July 10, 2008 12:34 AM CDT

Madi has had a much better week this week than last week. We were at the hospital four days last week and now we are back to our normal two days a week. Madi's counts are more stabalized, which is good. Madi has been getting IV Lasix too when we are in clinic. She is still on 80mg. of Lasix a day, but she gets 100mg. a day when she goes to clinic.
Mike's dad is doing well recovering at home from his triple by-pass surgery.
The main reason for my update is to ask for prayers for the Dornak and Williams families for the losses of their sons.
Tommy Dornak,41, died on July 6th. Tommy worked for NASA and would train astronauts for missions. He drowned in Austin when he was working on a boat motor under the water. His parents are Gene and Patsy Dornak. The funeral was this morning.
I am very sad to say that little Ryan "Batman" Williams from Dayton died on July 9th. Batman was diagnosed with stage 4 Neuroblastoma in 2005 when he was three years old. He died at Texas Children's Hospital yesterday. His parents are CD and Theresa Williams.
Please ask the Lord to comfort these families in their time of grief.

Friday, July 4, 2008 5:08 PM CDT

Happy 4th of July!
It has been a crazy week for us. Madi had a rough and painful week. On Monday we thought that Madi would probably be admitted to the hospital. She has had more fluid building up in her lungs which has made it harder for her to breathe. She had xrays on Monday and Wednesday to compare the results. They were about the same.
Madi wanted the doctors to drain the fluid from her lungs, but they said that it wasn't that bad yet to have to do surgery. We were told that she was going to be admitted on Thursday, but they decided just to give Madi some IV Lasix. We have to go the hospital tomorrow (Sat. morning) to check Madi complete blood count since she is on so much Lasix. Madi's potassium and phosphorus have been really low due to all the Lasix.
Yesterday, which was Thursday, we thought Madi was going to be admitted and Mike's dad was going to get released from Herman Hospital. When we got home at 6:00pm Mike had to turn around and go back to the medical center and get his dad. Mike got half way there when his dad called him and said that his doctor would be in surgery until midnight and wouldn't release him until then. Mike came back home and then he got the call that another doctor would sign his dad's release, so Mike went back to Houston to get his dad. Davis is doing very well since his triple bypass surgery.
Everyone's prayers are so very powerful and we are so thankful for all of them!

Saturday, June 28, 2008 11:04 AM CDT

I have many prayer request today.
Madi had another CAT scan on Wednesday and she has more fluid building up again in her lungs. So she is now on 80mg. of Lasix a day now instead of 40mg. Hopefully that will solve the problem and she won't have to have surgery to drain it.
Mike's Dad, Davis Brown, had triple bypass surgery yesterday at Herman Hospital. He still has a long road to recovery.
One of Madi's previous physical therapists at TCH is pregnant. She has lost a lot of blood during the last 8 weeks. She just heard the baby's heart beat on Tuesday. Please pray for her and all the other ladies that are pregnant.
Please continue praying for all those who are sick as well as all who need God's direct healing of any kind.

Sunday, June 15, 2008 10:12 PM CDT

I hope everyone had a peaceful Father's Day.
Father's Day was a little down played today because Madi's 10th birthday celebration over showered the theme for the day.
Madi had a huge family birthday party at Aunt Laura's and Uncle Randy's house. Madi's birthday is actually tomorrow, but we will be at Texas Children's Hospital.
Madi got measured for a power-chair last Wednesday. It will take about ten weeks before Madi will get it though.
I am not for sure how much Madi's necklace/bracelet set sold for on the silent auction. I do know that Madi won first place with it though.
I saw Veronica Duggan today after church. She told me that Pat is not afraid of dying, but he is apprehensive about the specifics of it all, I guess is the best way of explaining what she told me. So please pray for all those who are sick and dying. Please pray for all the care-givers too.
Life can be very stressful and depressing at times, so let's lift up our prayers for those who need prayers the most!

Wednesday, June 11, 2008 7:31 AM CDT

On Monday my mom went with me to the hospital since Mike was getting Austin's animals up to the Crosby Fairgrounds.
Madi's central line wasn't working on Monday, so that delayed our day at clinic waiting around for four hours for Madi's blood results. Since it was getting so late, we were told that we could leave even though only one-half of Madi's cbc was ready. On the ride home I got the call that Madi's potassium was down from 4.4 to 2 something and her magnessium was extremely low too. So Madi would have even more pills to take.
Mom and I were wiped out for the day. Madi's wheelchair weighs about 80 pounds or more, so loading and unloading is very exhausting. And of course Madi's body is so fragile. Even though she is very tight and stiff, she has to be carried like she is sitting in an invisible chair. She weighs around 5o something pounds, so needless to say, my upper body strength is weak compared to Mike's. Madi has so many things that we have to carry with us like her oxygen and many other bags.
While we were coming home from the hospital, Austin got third place with his rabbits. Madi was able to join 4H this year, so we thought that she could show the rabbits, but this was still impossible. Austin is splitting the money with his sister though. Madi did enter a necklace and bracelet that she made for home ec. If she does well, it could sell in the silent auction today.
I was able to go and watch Austin show his pig last night. He won second in his class and 10th over all the pigs. It was wonderful visiting with everyone.
We will be going to the hospital soon for bmt clinic and PT. Please pray that we make it back in time so Mike can help Austin get the animals ready for the auction.
As always keep praying for all those who are sick, and thanks for all the love and support that you all continue to give to our family constantly.

Saturday, June 7, 2008 11:49 PM CDT

We are home from the hospital. This was our shortest stay in the hospital yet.
Madi had a full body CAT scan done today before we left, but we don't know the results yet.
Yesterday Madi's white blood count was 15.92 which is very high. Since Madi didn't have any symptoms there is always a high risk that Madi might have a fungus, even though she is on an antifungal. Madi's potassium was only 2.6 yesterday, so she got a continuous drip of potassium.
Madi also had a lot of problems with her central line working.
Today Madi's potassium was up to 4.4. Madi's white blood count was down to 7.57, so it's pretty obvious that prayers are being heard and answered once again.
Madi has been vomitting for the last three days. She only gets sick right after she takes a lot of her pills. She did ok tonight with her pills though.
We go back to the hospital on Monday. We will find out the results from the CAT scan then.
Thanks for all the prayers and keep praying for all those who are sick.

Wednesday, May 28, 2008 5:57 PM CDT

I'm asking for prayers for the Yandle and Duggan families.
Donny Yandle (54) died yesterday at MD Anderson. He worked at Exxon/Mobil. Mike will be going to the funeral home shortly. I'm sure Mike will enjoy visiting with all the guys.
I'm also asking for prayers for the Duggan family. Veronica is our counselor at school. Veronica's husband, Pat, was first diagnosed with cancer right after Madi was diagnosed back in 2003. As far as I know, Pat is still at MD Anderson in ICU. The family is planning on bringing Pat home and having Hospice help take care of him.
I do have some good news to share with everyone. Angela Brown is doing so much better! We saw the other Brown family this afternoon at clinic and we are always so relieved to see Angela looking so well.
Madi also had a CAT scan this morning. The results are better from the previous scans, so all the prayers are working for the girls! Please keep them coming.
Madi might get a power-chair in several weeks. Madi tried one out last week at PT. She did really well driving it. Madi will get to try out a smaller power-chair next week. Madi has to have a chair that will recline for her back and legs since her body is still so tight and stiff. The power-chair will give Madi some independence that she hasn't had since 2006.
Madi has been off her shots for a week now, which has been so much better on all of us. We may start back soon though.
She also got off her chemo meds for a week, but we start back on chemo tonight. Madi got off the chemo for a week to see if it would help with all the edema. The risks of the chemo are Madi's complete blood count and edema. The fluid is a constant issue for Madi. The swelling might be a little better in her legs, but she has some swelling in small areas in her arms and around her upper chest.
Oh, I almost forgot to let you know that Madi's bracelets are now for sale at Laura's Cleaners in Crosby. Madi's bracelets are also still at The Tepot Depot in Highlands.
WE ARE SENDING OUT A BIG THANK YOU TO THE TEPOT DEPOT AND LAURA'S CLEANERS AND TO ALL OF YOU THAT CONSTANTLY KEEP PRAYING FOR MADI!

Sunday, May 11, 2008 10:41 PM CDT

Happy Mother's Day too to all of you moms out there!
We had a lovely day. Of course Madi has anxiety and pain with her Anakinra shots. Since "farm boy" Mike is use to giving animals shots, he gets to give Madi her shots at home on days when we don't go into the hospital. Madi squeezes my finger and cries. She has requested me to ask all of you to pray for her when she gets her shots so that it will be easier for all of us.
The swallow study was difficult for Madi to do, but there didn't seem to be anything wrong. But Madi is still very scared to try and swallow any pills.
She is still on TPN every night.
Please continue praying for all of those who are sick and in need of lots of prayers right now.
You guys are the best! Have a great week!

Saturday, May 3, 2008 10:55 PM CDT

Madi's CAT scan results came back exactly the same as when we were in the hospital. We know that she is doing better though.
Madi will have a swallow test on Monday.
She will start getting her new shots on Wednesday. Madi will get her shots on a 7 days on and 7 days off schedule. Let's pray that the shots won't be painful like the last time that she had to get them.
We received more information about our genetic testing. Our family is at a very high risk for Crohn's Disease. Austin has some problems that flare up now, so he will see a gastroenterologist at Texas Children's Hospital.
I need to see a specialist too. I have two genes for Crohn's Disease and Mike has one gene for Crohn's Disease.
Does anyone have a good gastro doctor that they can recommend?
Please keep praying for Angela Brown. She is still undergoing test and waiting to get MRI results back. She is still needing a lot of platelets and blood. Please pray that she will start having pain free days and nights soon, as well as Madi too.
Madi has been going to sleep around 2:30am. It is much better than 4:00am though!
I want to thank all of the staff at Barrett Primary. The staff paid to wear jeans to school and donated money to Madi. I also want to thank the staff and students at Newport Elementary. A couple of weeks ago they had "Miles For Madi." At noon on Friday we drove Madi to Newport Elementary and Madi was presented a $4000 check along with other goodies from the student council and staff members.
We are so touched by everyone's kindness towards our family.
Words can never express all the gratitude that we feel continuously in our hearts for all the love and support that showers us during this difficult path in Madi's life right now.
MAY GOD BLESS YOU ALL!

Friday, April 25, 2008 11:38 AM CDT

Madi has been complaining about back pain for quite some time now, so we did an xray on Monday. Xrays are always so difficult for Madi since she can't move her body. She did really well though. Everything seemed ok on the pictures.
She has CAT scans next week again of her lungs and neck. I am praying that whatever they saw in her throat and neck last time, will be gone this time. It was more than likely GVHD. This is what was causing her to choke when she would swallow pills.
She hasn't been choking but she does still have a lot of nausea that causes her to vomit, like at 1:00am. this morning. She is still having restless nights to where she can't go to sleep. Madi didn't go to sleep until after 4:00am, so it is a good thing that I am not working five days a week. I am going to try to go to work on Monday since the kids are out of school. Austin can help Mike at the hospital. Madi loves having Austin with her.
The doctors are planning on starting Madi on some different shots (7 days a week) that should help stimulate some certain Interleukin cells to do their job. The doctors want to review Madi's CAT scan results before we start the shots. Of course the side effects will be increased risks for all types of infections.
Madi continues to make progress in physical therapy. She cries the entire hour, but the therapists are excited about Madi's progress. The therapist could almost push Madi's knees together. Madi hasn't done this in over 18 months.
Thanks for all the prayers, they are working! We are so blessed to have so many people praying for Madi. We are so thankful for all our new friends that we are constantly meeting too that are adding Madi to more prayer lists.
When we were waiting for Madi's xray, a girl Madi's age came up to us in the waiting room and talked up a storm to Madi and asked her tons of questions. Of course I was nervous thinking that she was going to give Madi some germs, but she kept her distance enough. Madi was so excited to interact with someone her own age. She misses going to school so very much. When we go to the bone marrow clinic, kids can't socialize together since no one has an immune systems. We do have many friends that we wave to at a distance though. Which brings me to the main reason for my update and that is to ask for some heavy intense prayers for our friend Angela from Orange, Tx. Angela had a bone marrow transplant after Madi. Angela then had to have a liver transplant, and now she will more than likely have to have another bone marrow transplant. We were next to Angela and her mom Paula, on Wednesday at clinic when they got the bad news. She was being admitted to the inpatient side of the hospital.
I will update you next week when we get Madi's CAT scan results. I will also let ya'll how Angela is doing.
God Bless You All!

Friday, April 18, 2008 6:11 PM CDT

Madi is still having some terrible and painful nights.
She didn't go to sleep until 7:30am this morning. She was almost asleep at 3:ooam, but she just kept crying in pain, so I told her that we would just put the tv back on and try to take her mind off of her pain. She didn't do the computer very long at midnight either. She was very nauseated and threw-up once.
Madi's counts are pretty good. She got off TPN and Lipids Monday night, but we thought that she was getting dehydrated, so we are starting her back on TPN tonight.
The physical therapists are seeing improvements with Madi's tightness. She is getting better.
Please pray for pain-free nights and days!
God Bless You All!

Friday, April 11, 2008 9:58 AM CDT

I thought that we would be getting more sleep at home since we didn't have nurses, doctors, and PCAs coming into our room 24-7. We are not getting much sleep at home either. Madi has severe leg pains late at night so we usually don't even go to sleep until 2 or 3 in the morning. When Madi was in the hospital the IV infusion of Benadryl would put her to sleep around midnight. Liquid Benadryl doesn't even phase her at all. Madi tried Ambien over a year ago and she had a really bad reaction.
She also had some bad adverse reactions in the hospital too.
I am crushing up all of Madi's pills since the doctors don't want her choking again like she did at the hospital. All of the medicines taste so badly to her. Most of them smell like toxic chemicals to me. She is taking medicine every four hours.
She is still on TPN and lipids every night. She is eating a little too. I think that if she could swallow her pills again, she probably would eat more since the crushed pills leave such a bad taste in her mouth. Madi's teeth are really getting stained from all the pills and Resourse drink that she takes her pills with. But of course this is the least of our problems.
Madi is still getting her Infliximab chemo infusion once a week at clinic. Yesterday was her fourth week already. Infiximab helps with the inflamation going on in her lungs. It may help with other things too.
In November 2005, pre-transplant, we did some genetic testing on Madi. While we were in the hospital for two weeks, we met with the genetic doctors. They wanted some blood from us too, so Austin went to the hospital with us on Wednesday. What they found in Madi was that she had three mutations or genetic markers for the same gene. The genetic doctors were shocked. They said in all the testing that they have done at TCH, they rarely come across a double mutation for the same gene. They told us that they have never seen three mutations for the same gene, which is what Madi has in her genes. What they are concerned about is the gene for Crohn's Disease and Rheumatoid Arthritis. Is this why Madi is having such a hard time with the GVHD too? I will let you know what the genetic doctors have to say when we get our results back.
For those of you that don't know, I have taken a leave of absense from work. I had to do the same thing last Spring too. I hate leaving my kids at school, but Madi needs me. She is so much happier having me with her all the time. Mike really needed my help too. His health has gone down hill during the last couple of months. When Mike went to the doctor in February, he told Mike that he needed to start using a cane when he walks. For those of you who know Mike, you know that he isn't going to let anyone see him using a cane. Mike wouldn't even use a handicap parking permit until I convinced him that we needed it for Madi. He still won't get permanent plates for the van/truck. Mike fell on Monday when we were leaving the hospital. He was pushing Madi in her wheelchair and his legs just went out. Thank goodness that Madi has some safety bars on the bottom of her wheelchair that prevents her from flipping backwards. He jerked her chair, which hurt her though. I will only let him be the "back-seat" driver when we go to Houston.
I can't tell you all how much we appreciate everyone's prayers. They are working, we are sure of that! Madi's pain might be worse, but her skin appears to be looking better in places like around her knees. The physical therapist noticed a different type of feeling in Madi's deep tissue in her left arm that she has never felt before. Madi's right ankle moved slightly. Madi's skin seems to be softening a little. These are all miracles to us! Don't get me wrong, Madi still has a long way to go. She still is very tight and hard. She can't sit up by herself. Madi's body won't even bend straight yet, but she will, I know.
I just want each of you to know how important ya'll are to us!

Wednesday, April 2, 2008 11:38 AM CDT

Yes we are home! We got out of the hospital yesterday. We were in the hospital for 14 days. Just like Dorothy says, there's no place like home.
I will just give a quick update for now.
Madi had another CAT scan yesterday morning and it was so much better!!!! The doctors also decided to scan her neck too since she choked really badly on a pill before the scan. Something is there, so they don't want Madi choking on any more pills, so I am crushing all of them up before she takes them. She takes way over 30 pills a day, so we stay busy, right now the lasix is working so I must go.
You will never know how much your prayers and love means to us! Thanks for the right prayers for Madi's lungs!
I will write more when I find time!

Monday, March 24, 2008 8:35 PM CDT

I have good news and bad news. The good news is that Madi isn't having surgery tomorrow! The bad news is that they did another CAT scan today and Madi's lungs/heart looks worse. I don't agree with that though. Madi was more like herself today.
I think that the last time that I updated was Friday night or Saturday. Everything just kind of blends together when you don't get much sleep. Saturday night and early during the wee hours of Sunday morning, Madi had a bad reaction to what we think was probably from a Fentanyl pain patch and the Cipro antibiotic. Madi's heart raced to almost 300 beats per minute. When Austin use to have WPW, we would have to call an ambulance when his heart rate was 300bpm. Madi's chest moved so quickly that it looked like she was running a marathon race for about 14 hours. She has been very nauseated as well, with a little vomiting too. She still has a lot of anxiety taking her oral medications. She still won't take pills whole, so I have been crushing them up with a few drops of Resource drink. Madi's stomach is torn up from all the IV medicines and from not eating. She has a little diarrhea.
And for a little more bad news today, we found out that Madi tested positive for C-Diff bacteria this afternoon so she is on stricter isolation regulations.
Madi acted so much more like herself today which made me feel so much better. On Easter Sunday she was worn out from "running her marathon race" so she mainly slept the entire day. She did notice that the Easter Bunny had delivered her Easter goodies about 3:00am. on Sunday morning.
Madi wanted to look at all her Easter stuff tonight for the first time. She did a few activities too which made me so happy. She took a few nibbles of food too tonight which was the first time since we were admitted to the hospital. The doctors don't want to put her back on TPN
since extra fluids are a big concern.
Please pray that Madi will start eating again and that she will be able to take all her medicines like the good old days. Please pray that her new chemo is our miracle drug that will heal Madi's body so that she will be able to walk again.
PLEASE KNOW THAT YOUR PRAYERS ARE WORKING AND WE ARE SO GRATEFUL FOR EVERY TINY PRAYER! Please keep them coming our way!

Saturday, March 22, 2008 6:43 PM CDT

Madi got antibiotic infusions in clinic on Tuesday and Wednesday since she was running fever and didn't have any symptoms. Wednesday morning we did a chest xray since her oxygen level has been really low, even when she is using oxygen. The xray showed that Madi had a lot of something around her heart. They soon squeezed us in for a CAT scan in the afternoon. The doctors are not sure what exactly is around Madi's heart and in her lungs. Madi has always had some pleural effusions and pericardial effusions.
So we were admitted to the hospital Wednesday afternoon to room 41 on the bone marrow transplant unit. They immediately started planning surgery for Madi so they could find out exactly what is going on in her lungs. We have had so many different teams of doctors coming in constantly. Madi is on the schedule for surgery on Tuesday. We are still praying that Madi won't have to have surgery at all. So please put this request on the top of your prayer list. Madi has had this type of surgery before and she would have to have a very painful drainage chest tube inserted for several days.
Madi's heart echo on Thursday morning showed normal heart function, praise the Lord! Madi had two doses of Lasix on Wednesday at 5:00 and 10:30pm. I think that this is why the echo looked normal. IV Lasix works so much faster than the pill form.
Now for some really great news. Thursday morning Dr. Doug told us that Helen had some new information about two men from France that had the same type of chronic sclerodermations GVHD that received a new treatment that helped them. The only problem was that insurance probably wouldn't approve it because they haven't even done a clinical trial on it yet. On Good Friday Mike called our case manager and talked to her and let Dr. Doug talk to her on the phone. It quickly was approved and Madi took her first pill last night. The new chemo is called Gleevec. Madi took her second dose this morning. She will take it twice a day for maybe six months. Madi's heart rate is 155 bpm which is probably a side-effect from the chemo. Let's pray that she doesn't suffer from side-effects from this new drug. This is very uncomfortable for Madi. Madi's temp was 99.3 at 4:00pm so hopefully it won't be trending up.
Like I said she is still on the schedule for surgery on Tuesday, but I know our prayers can prevent that from happening. She is getting a week of IV antibiotics.
Our first night here was complete hell, but they are managing Madi's pain better with a pain patch and more morphine every two hours at needed. Madi isn't too upset about being in the hospital for Easter. We were here for Easter five years ago and two years ago, so Madi knows that the Easter Bunny still delivers.
I hope everyone has a very Blessed and Happy Easter tomorrow! Thanks for all the constant prayers!

Sunday, March 16, 2008 10:34 PM CDT

It is so nice to be out of school this week!
Austin and Mike are in Houston getting ready for the big pig show tomorrow.
Madi has been running a low-grade fever for the last several nights. All the central line cultures came back negative, so we know that she doesn't have a line infection.
I have a lot of special prayer requests for this week.
Please pray for all those who are sick and recovering from illnesses, especially Beth King's mother, who had a stroke. Please pray for Weston Zucha who will be having surgery on Thursday and for all those who are traveling.

Thursday, March 6, 2008 7:24 AM CST

Just a quick update.
The doctors are still debating on what is the best treatment for Madi. I think that Philadelphia is probably out of the question now. I think that the doctors there are overwhelmed with all of Madi's many problems.
Mike's oncologist gave us some new insight with his colleaques at Duke, so we passed all that info to the BMT team at TCH.
The doctors at TCH were also debating about doing a second bmt on Madi using only her as the donor. I think that they decided that she isn't at that point just yet.
They are talking now about giving Madi a new GVHD medicine. Hopefully we will find out something next week. Please pray that the Lord will guide the doctors in making the right decisions when it comes to Madi's complete healing. We appreciate all the love and prayers!

Wednesday, February 27, 2008 7:24 AM CST

Madi and Mike have been struggling with their diseases a lot here lately. Mike went back to his neurologist and oncologist yesterday. He turned in a 24 hour collection of urine that they have been wanting. Since Mike's blood pressure is still high, he will be taking medicine for that now.
Madi has been having a difficult time swallowing her pills at night. Madi started choking when she took her last pill last night. She doesn't just vomit the pill up, but she starts choking where she can't breathe. She does vomit so she can breathe though. It is very scary when it happens. I am rushing to get a bowl, trying to sit her up more, and hollering for Mike, who is always in another room, to come in and help me. Well last night when Mike scooped up Madi to put her on the side of the bed, her back popped. She was choking and crying for a long time. Madi's back hurt her for the longest. She was too scared to try to take some morphine for the pain. We went to sleep before midnight, but Madi was up at 3:30am this morning.
They are going to the hospital today for all Madi's three appointments.
Please pray that Madi will have pain-free days ahead!

Wednesday, February 20, 2008 7:31 AM CST

Please pray that Madi and Mike both don't get the flu/bronchitis infections. I was sick over the weekend and I went to the doctor Monday at my conference time and Dr. Henderson told me that I had all of the flu-like symptoms such as fever, body aches and pains, but I also had all of the symptoms of a bronchopneumonia. I stayed home from work yesterday, but I am back at work now.
Austin came home sick yesterday after school, with the same thing, so mom is taking him to the doctor this morning. My sister is going with Mike and Madi to the hospital for her three different appointments today. Let's please pray that Madi and Mike will not get what we have.

Monday, February 11, 2008 7:26 AM CST

Just a quick update.
We were able to make it to the BIG Love walk on Saturday. It was so good seeing so many friends from the hospital. Madi was very proud of her medal that she received when she crossed the finish line. It was a beautiful day.
We are going to Philadelphia, but we don't know when yet. I will update when I get more details.
Happy Valentine's Week!!!

Sunday, February 3, 2008 4:59 PM CST

Madi wanted to go out to eat today, so we went to Pappasitio's for the first time in about three years. For some reason I happend to wear two of Madi's bracelets that she had made. While we were at Pappasitio's we saw one of my former students, Hayes Beathard. It was so wonderful seeing him, as well as his parents and grandparents too! While we were eating Madi decided that she wanted to give Hayes' mom and grandma the bracelets that she had made. That is why God told me to wear two bracelets this morning!
The Beathard family also bought our lunch for us, thanks again Trish.
The Beathards, as well as all of Madi's online fans, are the perfect example of Christians helping others. We truly appreciate each and everyone of you!
Now for a Madi update. We don't know anything for sure yet, but there is a chance that Madi might get to go to a children's hospital in Philadephia which specializes in deep tissue massage therapy. Let's pray that if it is meant to be, that it will happen. I will let you know as soon as we find out whether or not we are going.
Please pray for the family of Roshaad Mayweather, a Crosby high school student, who died in a car wreck last Thursday. The funeral will be on Friday.
I wanted to let everyone know that Don Piper will be speaking at the Methodist Church in Crosby Tuesday night at 7:00pm. For those of you who haven't heard of Don Piper, he wrote the book, "90 Minutes In Heaven." This is an awesome story of how Don died in a car wreck, went to Heaven for 90 minutes, and then came back to life to tell us all about how glorious Heaven really is. I read the book several years ago, but I am so excited to see and hear his life story in person.
This Saturday will be BIG Love's Childhood Cancer Walk in Angleton at the recreation center. You can walk one mile or run a 5K if you wish. Hopefully I will get to see some of you on Saturday. You can get more info on Jessica and Chaney Phillips' web page at www.BIGlovecancercare.org
I have to rush off to church now!

Saturday, January 26, 2008 8:28 PM CST

It's good to hear from everyone out there online.
The laptop computer is still not working yet. They returned it a few days ago, but they didn't even fix what was broken on it. Madi was very disappointed.
Madi is still going to light therapy, physical therapy and bone marrow clinic.
We are still planning on walking in the 5K BIG Love walk coming up in February. Maybe we will see some of you there. For more info you can go to BIG love website at: www.BIGlovecancercare.org
Besides praying for Madi, I need prayers for Mike and his dad. Mike has really high blood pressure and he also has a lot of protein in his urine. Davis had multiple strokes recently and he is going through physical therapy right now.
Please continue praying for all those who have lost loved ones. Another bmt teenager girl died this week due to complications after transplant.

Friday, January 11, 2008 9:36 PM CST

We had a pretty good week this week. Madi was able to get her first treatment of light therapy on Wednesday. We have been going to Dr. Bree, a dermotologist at TCH, for a couple of weeks now, trying to figure out how we would be able to get Madi in a tiny confined area for treatment. The space is only for standing room only, but thanks to Kristen, one of Madi's physical therapists, she helped find a way possible for light therapy. The first session was only 30 seconds long. Madi will get light therapy every Monday and Wednesday when she also goes to BMT clinic and goes to physical therapy.
Madi has been sleeping really well the last two nights. Before that we were going to bed at midnight and still getting up at 2 or 3 in the morning and staying up for a couple of hours at a time since she was in so much pain. Could it be the light therapy working so soon?
Madi is excited that so many ladies love her braclets. Right now she is selling them to help raise money for the first annual BIG Love 5K Walk-Run that will be at the Angleton Recreation Center on Saturday, February 9, 2008.
Brooke Phillips was one of Madi's special little friends that also had AML and also had a bone marrow transplant. Brookie was only 5 years old when she went to Heaven over a year ago. Brooke's parents started the BIG Love Cancer Care organization, which is a non-profit organization that helps cancer kids and their families. Visit their website at www.biglovecancercare.org
Some interesting facts that were posted on their website recently were: Childhood cancer is the leading cause of non-accidental death in children. Nine children die of cancer every school day...3000 every year. In the last 50 years, more children have died from cancer than U.S. soldiers in all military actions combined. Wow, it really makes you think.
Please continue to pray for all those who are sick and especially Pat Duggan who will be having surgery on Monday to remove a tumor that is growing on his brain.
God Bless You All and please keep the prayers constantly coming!

Tuesday, January 1, 2008 8:14 PM CST

Both of our computers crashed so we had to break down and buy a new one for our front room. Our lap top crashed too so we have to mail it back to the company to get it fixed. It has been wonderful being out of school for two weeks and taking care of Madi. She keeps me on my toes jumping 24 7. I really enjoy doing it though. She is always so sweet and appreciative of everything that we do for her.
We got out of school on Friday, Dec. 21st at noon, so I was able to go the hospital with Mike and Madi on that day. Madi's doctor visits have been going well. They are still trying to figure out the best way to handle Madi's chronic Graft versus Host Disease.
She still has had intense leg pains for over a month now. She usually goes to sleep around midnight and she lots of times gets up around 4:00am with severe leg pains. I think that the steroids contribute to a lot of her pain. Madi got off TPN last week. We thought that maybe all that extra fluid was causing more pain than good right now. Madi's body is still very hard and tight. She isn't able to sit up straight yet. Madi's wheelchair allows her to recline back and elevate her legs to a more comfortable position.
I can't believe that it has been over a year since Madi was able to stand up and walk. Madi is usually very understanding about everything that she is going through though. She does break-down and cry every now and then. She knows that God is in control and has a plan that we just can't understand right now.
We are very appreciative of everyone's prayers for Madi. We make new friends often and so we have more prayers going up for Madi's healing. We met some awesome people last night on New Years Eve. Several weeks ago when we were at Channel 13, making the commercial for the fundraiser for BIG LOVE, we met some very interesting people in the lobby. We met Jim and Kim Nash. They were at Channel 13 promoting the fundraiser for Champions Kids Camp which is a nonprofit organization dedicated to the nuturing of children who have survived a tramatic injury, illness or personal loss. Jim met Madi and started singing to her and playing his guitar for her. She lit up like a Christmas tree. The Nash family has several musical CDs. He has been singing and performing since the 1970s. They founded this organization after one of their sons was diagnosed with leukemia many years ago. While at Channel 13, Jim gave Madi one of Kim's cds. He also gave Mike an invitation to their 6th Annual Champions Kids Camp New Years Eve Gala at the Galleria. Mike and I had free tickets to the Gala and he also gave our family a free room for the night, which was wonderful. After our doctor visit at TCH, we headed over to the Galleria for the night. Maw-maw spent the night with us so she could watch the kids while Mike and I went to the Gala for a few hours. We had an awesome time. A.J. Foyt is the national spokesperson on the honorary advisory council committee. He wasn't at the Gala though. Dodie Osteen, Joel's mom, gave the invocation to start off the Gala, which was very motivating. If you are interested in looking at the website, go to www.championskidscamp.org
Please pray for the success of this wonderful organization. We also need prayers for the success of the BIGLOVEcancercare organization that was founded by our dear friends, the Phillips, whos daughter passed away after going through bone marrow transplant. BIGLOVE's Run/Walk fundraiser is coming up in February in Angleton. Madi is selling her beautiful braclets to help BIGLOVE. I would like to thank the Teapot Depot in Highlands for selling Madi's braclets too.
Madi is calling for my attention now, so I have to go. I will update sooner next time. I hope everyone has a very Blessed and Happy 2008 New Year.

Tuesday, December 25, 2007 2:47 PM CST

From the Brown/Rucka Families we want to wish everyone a very merry Christmas and and happy new year!!
(Our computer isn't working at home so we are in line to use Maw-maws computer today)

Monday, December 17, 2007 7:26 AM CST

Madi had a wonderful birthday party at Aunt Laura's and Uncle Randy's house yesterday. She loves unwrapping presents! Madi is glad that her new birthday is celebrated in the same month as baby Jesus' birthday too.
I was really sick myself last week. I was running fever with a sinus infection and a stomach virus on top of that. I felt like I was dying on Thursday and Friday. Madi was so sweet to me. She told me that she was praying for me instead of herself all Thursday night. She is so precious.
After school on Friday, I went to the doctor and got a shot and a couple of prescriptions on top of that and I am doing so much better. So thanks for all the concern from my fellow friends that were so worried about me.
We appreciate everyone's love and prayers for our family. All the prayers are what gets us through the really tough days that we have been going through during the last two years now.

Thursday, December 13, 2007 7:34 AM CST

Madi's arm from where they gave the IL-2 shot on Friday was very irritated when she went to the hospital on Monday. She got her shot in her leg and it was so hard trying to get it to go into her skin since she is so tight.
On Monday they decided to put her back on high doses of steroids once again. They decided to stop the shots for a little while.
Madi started back on 12 hour TPN for her nutrition last night. She hasn't been sleeping much at night and she is in so much pain right now. Please pray that the pain will go away and Madi can start feeling better really soon.

Sunday, December 9, 2007 9:47 AM CST

Madi had a long hard week at the hospital last week. When she went to clinic on Wednesday it appeared that her GVHD was acting up again from the looks of her skin. They decided to give her an infusion of infleximab. She also started back on her IL-2 chemo shots. Wednesday was about a 13 hour day at the hospital for Madi, Mike and Maw-maw. Thursday Madi was so out of it. She only wanted to sleep the entire day. Madi never naps, so this was out of character for her to sleep. After talking to Dr. Doug on the phone, he said to give her a prednisone pill, since we had just wheened her off. She perked up a lot after that.
On Friday Madi got a new prescription for Cortef. Doug said that lots of times when someone is on steroids for long periods of time, they are unable to make adrenaline, so this new pill is helping with that.
Madi had the time of her life Friday night. She was invited to the student council lock-in at Newport Elementary. Madi and I went for a few hours. She was so excited to see old friends and new ones too.
I know that there are new friends that have recently found Madi's web page, so I will kind of tell you what is going on with her health.
Madi went in the hospital exactly two years ago to start her pre-transplant work. She had four tough days of hard chemos and then she had four tough days of radiation that took place at MD Anderson twice a day. Mike at the time had shingles, so he wasn't allowed to come and visit.
Any way, Madi has struggled constantly trying to recover from her transplant. Chronic graft versus host disease has been her main problem. She hasn't walked at all in one whole year. Because she has no immune system, she can't attend school either. Madi's body is tight and she doesn't have any range of motion. She can feed herself with her right hand and she can write with her right hand. That is about all she is able to do. She can't scratch her head or legs. Madi's body is locked up. She is in good spirits and she knows that God loves her so much and we appreciate all the prayers that are constantly coming our way.

Wednesday, November 28, 2007 6:39 PM CST

Madi and I are anxiously counting down the days until her second transplant birthday, which will be on December 16th. I feel like I got a wonderful present today.
We have good news to share about one of Madi's blood test that they recently ran again. They were checking to see the levels of her Graft Vs. Host Disease. A specific chemical is always very high when Madi's GVHD flares up. The results from this recent blood test showed that this specific chemical is barely visible, which is awesome news! We are going to continue wheening Madi off the steroids, which will help her feel and look so much better. She will now just take her steroids every other day.
The plan is to start Madi back on the IL-2 shots as soon as possible so it can regulate the other cells. Madi will probably start back on her shots in a couple of weeks.
I am so thankful for everyone's prayers and I am really thankful that prayers are being answered too, just like I always knew that they would be!

Tuesday, November 20, 2007 11:16 PM CST

We haven't seen Madi on Channel 13 yet, but I know that it will air several times before February. We got to see the 30 second commercial many times at the studio, so it has been easy for Madi to wait.
I am enjoying going to all of Madi's doctor's appointments at Tx. Children's Hospital this week. Yesterday Madi got her monthly IVIG infusion and Potamadine breathing treatment. She also got her chemo infusion.
Madi got off TPN last week, so that has been very nice not having to prepare the TPN and run it through her line 12 hours every night. She has been on very high doses of steroids again. The steroids make Madi's bones hurt to the point where she can't sleep. Madi didn't go to sleep until 5:30am Monday morning. I woke Mike up at 3:00am so I could sleep for three hours before we all had to get up.
Austin and I are so thankful that we have the entire week off from school. Madi is really glad to have us all together all week.
Our family is so thankful for so many things. We are so fortunate to still have each other. Please pray for all those who are struggling to get through the holidays without their loved ones with them. We are so thankful that we have each of you reading this too. We appreciate everyone's acts of kindness & prayers for our family. (Kathey Buchta, we were so touched when we heard that you and the ladies in the church, prayed for only Madi for nine hours straight at church the other day)!
HAPPY THANKSGIVING EVERYONE!!!

Wednesday, November 14, 2007 7:46 AM CST

Just a quick update. Madi should start airing on channel 13 on Fridays, I think. They shot a 30 second "infomerrical" promoting the BIG LOVE walk/run that is coming up in February in Angleton. It will be on the air many times. I will write more when I have time.
HAVE A BLESSED DAY!

Thursday, November 8, 2007 9:59 PM CST

Austin had his last football game Tuesday night at Keefers Crossing. We won 40-12. Austin played offense and defense. Madi and Maw-maw stayed busy making crafts.
On Wednesday at bmt clinic, Dr. Doug told us that they were going to try something different with Madi. They have been talking about a different treatment for Madi, but they decided to start it yesterday.
The good news is that Madi didn't have to get her IL-2 shot. They instead gave Madi an infusion of Daclizumab. She will get five doses of the Daclizumab. I will try to explain Madi's new protocol in the easiest way possible. The Daclizumab should kill all Madi's t-cells, which are believed to be responsible for the GVHD. This is almost like Madi is having a mini transplant. They will then use IL-2 to bring back Madi's reg. t-cells first and hope that they can regulate the actions of her other t-cells and keep them under control. This will take place during the next four weeks. Everything should be able to be done in clinic instead of inpatient. We are very excited about this new treatment for Madi. We have been praying for the doctors to find some new treatment for Madi and I believe that this is it.
Madi was upset last night because she didn't want to go to aqua therapy. The heater was broken last week and she was so cold in the pool. I told Madi just to pray about it and everything would be ok. Well today they were almost half way there and they got a phone call not to come because the heater was still broken and it would be too cold for Madi. Madi was delighted!
We also got some news today that "Big Love Cancer Care" wants Madi to be on Channel 13 News to talk about the 5k walk coming up in a few months. We have to be at Channel 13 at 8:30am Tuesday morning. I don't know when they will air it on tv yet. I will let ya'll know when I find out some specific info.
As always we appreciate the prayers and believe that they are working!

Wednesday, October 31, 2007 9:17 PM CDT

Madi was an angel for Halloween. When I opened Madi's costume package last night, right before Austin's football game, I noticed that the angel wings were missing, so we had to buy some white posterboard and make wings. (Austin won his game against Huffman 16-6). We taped the wings to the wheelchair which actually looked very cute. Madi wore her costume to the hospital. She enjoyed giving candy bags out to others.
I was just thinking about the last few years on Halloween. Last year Austin had a football game so Madi spent the evening with Aunt Laura. I was just looking at some pictures of Madi from last year and she looked terrible. She was so swollen in the face. Madi hates seeing those pictures. She could walk though.
The Halloween before that is when we started assuming that Madi had relapsed. She was so sick and couldn't enjoy Halloween. I can't believe that it has been two years already.
We are all so ready to have our normal lives back again. It is so hard to remember what normal even is or was.
I do feel in my heart that the Lord will give us a normal life once again, I just pray that it will be soon.
We are so blessed to have so many friends and strangers praying for us constantly. HAPPY HALLOWEEN!

Wednesday, October 24, 2007 3:44 PM CDT

Madi's face lit up like a Christmas tree yesterday because she got to go to Newport Elementary School for a little while. The staff and students are so wonderful and caring. Madi was excited to see many old friends that she hasn't seen in almost two years.
As soon as Madi's Chronic GVHD goes away, she can go back to school when she gets an immune system again. Let's pray that it will be soon. She would rather have friends than walk again, but we will pray for both to return.
Madi is still on TPN every night. She still has bad leg pains so she has to take extra morphine for the pain.
She has been staying busy making braclets with Maw-maw when we are at our Tuesday night games.
Austin lost last week to Barbers Hill. It was good seeing Mike's good friends Magic and Jeff at the game.
Austin lost his second game last night in Dayton.
Madi is going to aqua-therapy tomorrow. She hasn't been in several weeks. One week was an inservice week for staff and one week was an evaluation on land, so Madi hasn't been in the water for a while. Even though the pool is suppose to be heated, it is still very cold for her so hopefully she won't be shivering tomorrow. She has an earlier time in the morning too now.
Please pray for all those who are sick and especially one of our friends from Dayton, little Batman, who has relapsed recently.
Thank you all for your love and support. We are so blessed to have so many wonderful friends praying for us.

Thursday, October 11, 2007 7:17 AM CDT

Madi is on TPN (IV nutrition) for another week. Her counts didn't look good after we started, so they have increased her lasix since we are infusing such a large amount of TPN every night for twelve hours at a time. Madi's white blood cells continue to rise, so if they are still higher on Monday, the doctors want to schedule a CAT scan to see if they can figure out what is going on. She is eating a little bit better, so the prayers are working there. Maybe we can avoid the permanet feeding tube into her colon.
I have been asked to always include Austin's games in my update for the football fans. Last week we beat Keefer Crossing 44-0. This past Tuesday, we beat White Oak 37-14. We are eagerly awaiting to play our good friends from the "Hill" next Tuesday night.
Now for more serious news. I have to ask for more prayers for friends that have lost a child from complications after his bone marrow transplant. Ethan passed away a few days ago. He had his transplant about six months before Madi. Ethan also battled Chronic GVHD just like Madi does now.
Please continue to pray for all those who are sick and for those who have lost loved ones.
Please pray for Dana Zucha's father-in-law who will be having his bone marrow transplant at MD Anderson this week.

Tuesday, October 2, 2007 7:26 AM CDT

Just a quick update about yesterdays clinic visit. The meds do cause extra pain in your bones/bone marrow so that is something right now that Madi will just have to tolerate.
Madi is down to 42 pounds, which isn't good. She's all bones and skin. They want us to think about putting a direct feeding tube into her stomach. Tonight we will start her back on TPN, which will go through her central IV line. A nurse has to come out tonight after Austin's game and retrain us because the pumps have changed since we used them last with Madi.
Let's pray that Madi's pain will go away and that her new meds will burn out the GVHD. Of course we don't want to have to put in a feeding tube, so we will keep praying for Madi's appetite to increase on its own. The doctors did say that once we get the GVHD under control, then we will probably have to talk about doing surgery so Madi can walk again. She has so much scar tissue.
So let's all stay very busy praying for Madi as she once again goes through another major hurdle.
PS I think Maw-maws prayers started working last night because I was feeding Madi pizza last night at midnight!

Saturday, September 29, 2007 8:17 PM CDT

Madi's new meds (Prednisone and Azathioprine) have been making her feel terrible. She cries and says that her legs hurt so much more than they normally hurt. She also says that she hurts all over and wants to go back into the hospital to stay. We have been warming up hot towels again just like we did in the old days. The good news is that we can start wheening down to just one Prednisone a day starting tomorrow and hopefully that will help. The Azathioprine has lowered Madi's white blood count very quickly. There are many side-effects too such as extra nausea, infections, other types of cancers, etc... Let's pray that Madi won't have to be on these meds for very long at all.
Madi has two Beta fishies now so she wanted me to add fish to her web page.
Austin won his football game Tuesday night against Huffman. The coach wants him to start playing defense as well as his same offensive position. I hope he won't burn out of energy playing both sides. Madi took up a new project with Maw-maw while I was at the game. Madi is making beaded braclets and she has been selling them to relatives! She is kicking me off the computer now because she needs me to be her gopher right now to get her crafts!

Friday, September 21, 2007 10:01 PM CDT

Wow, I didn't know that Mike had it in him! Maybe he will start updating for me. I seriously doubt it though, ha ha!
I talked to Dr. Doug today about Madi's results from her biopsy. The surgeon really didn't get enough muscle like they wanted, but what they could tell is that Madi has active Graft Versus Host Disease (GVHD).
The doctors have decided to try something new next week.
The good news for Madi is that she will not be getting four shots a week. She will only be getting her two shots of IL-2. The shots hurt Madi so much since her skin is so tight and hard. She will start back on some high doses of steroids and some other medication that I can't remember the name of right now.
I told Madi that hopefully she will start pigging-out and gain some weight again. Madi's little tailbone sticks out because she is so skinny. Let's pray that Madi doesn't go through all the emotional highs and lows of steroids this time around.
Madi should be able to do her new treatment on an out-patient bases. We are eager for some changes.
Madi hasn't been feeling so well this week since she had her biopsy on Monday. She still went to PT on Wednesday and she also went to aqua therapy yesterday.
Madi and I have been up since 4:30am. She was in a lot of pain this morning. She was complaining about her central line hurting. She always gets a new dressing on Thursdays. We also changed it early this morning thinking that it might help. Madi's skin is so sensitive and dry.
When I told Doug about it on the telephone this evening, he said that he would call in an antibiotic for Madi's line so maybe we wouldn't end up in the ER with a fever this weekend, if her line did have an infection.
Thanks for all the prayers and the happy birthday wishes.
Austin won his first game against Dayton Tuesday night. It was a really late game. We got home at 10:00pm. Madi enjoyed having all of Maw-maw's attention Tuesday night.

Thursday, September 20, 2007 9:43 AM CDT

Today is a very special day for the Brown family. It's Karen's birthday and Madi,Austin and myself just wanted to let her know how much we love her. We know how hard it is for her to leave Madi and go to work. Iam sure all of you that know Karen,realize how wonderful of a person she is and how blessed we are to have her for a loving mom and wife. So with that we just want to say Happy ----th! Birthday We love you!!!

Monday, September 17, 2007 8:08 PM CDT

Just a quick update about our day. We got home at 5:30pm from the hospital. Madi did very well with her biopsy. We were blessed to have wonderful people taking care of Madi. Because of Madi's chronic GVHD, the anesthesiologist didn't want to put an IV in Madi's hand, so they used her central line instead of poking her. Usually they still put an IV in as well. He put Madi to sleep in her wheelchair before they picked her up, which made it better for Madi since it hurts her so much to be picked up and moved.
Madi is taking some extra doses of morphine for the pain. She gets her stitches out in 10 days.
Sheryl Jamail is doing much better, but still needs prayers.
Austin has a bad sore throat too and is requesting prayers. He doesn't feel like playing football with a sore throat. He has a game late tomorrow night. We got beat by Barbers Hill last week, but Mike and I enjoyed visiting with Jodi, Jeff, and Benny!

Friday, September 14, 2007 5:31 PM CDT

Just a few important things to let everyone know about.
Sheryl Jamail, one of our pre-k teachers, is in desperate need of prayers right now. She had two strokes yesterday. She still can't move the left side of her body yet. Sheryl is one of those persons who is always taking care of everyone else before she takes care of herself. She just finished doing her yearly golf tournament in memory of her son, Jared, to raise money for the Jared Jamail Scholarship Fund.
Madi has to have a biopsy on Monday. She will be sedated for this biopsy. The surgeon wants to get a piece of muscle/tissue from her left arm. The doctors are concerned because Madi doesn't seem to be making any progress with her mobility during the last few months. Madi's arms and legs are still very hard. They are concerned that all the physical therapy in the world won't help her walk again. I know that this is not the case. The Lord has been so good to us and I know that he will answer more prayers too.
Finally some good news! I am a great aunt again. Amy and Justin Glover are the proud parents of 8 pounder, Tanner Nolan Glover. Amy had a C-section on Wednesday. Holding him last night at the hospital just seemed to take all my problems and cares away. Madi will get to meet Tanner tomorrow. She is so excited too!
PLEASE KEEP PRAYING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, September 9, 2007 10:16 PM CDT

I have tried a couple of times this weekend to update and I haven't been successful yet. Hopefully this time it will work. I will give a short update.
Life is very hectic since I have been back at work. I was glad that I got to go to the hospital with Madi on Labor Day to get her shots. Since bmt clinic was closed, we had to go to the inpatient side to get her shots. It was strange being back on that side. It was nice visiting with all the inpatient nurses that are like family to us though.
Please pray that the Lord will heal Madi's body soon.
Madi still misses me so much during the day. Please pray that she will get use to our new routine soon. Madi also misses Austin so much too. He is so tired when he gets home from football practice. He always has time for Madi though.
Please keep all those who are sick and suffering in your prayers as well as all those who have lost loved ones due to bone marrow transplants. Every week I get updates asking for prayers for kids that have died due to complications from transplant.
As always keep the prayers coming and thanks for all the love and support for our family!

Tuesday, August 28, 2007 10:54 PM CDT

Life is extra hetic since I went back to work last week. It feels so wonderful to be with all of my best friends again that I have missed so dearly.
Madi did fine last week since Austin was still out of school, but this week has been extra hard on her. She cried when Austin was packing his backpack on Sunday. She said that she wants to get well, walk again, and go to school so much. So we all had a good cry on Sunday.
So let's pray that Madi gets use to me going back to work.
The doctors started Madi on a new shot last Wednesday. So getting double shots every Monday and Wednesday hasn't been too much fun either.
Hopefully, Madi will be ready to go to sleep soon, I'm so sleeping!

Friday, August 17, 2007 11:22 AM CDT

Madi wanted me to put balloons on the page because today is Mike's (43) and Austin's (14) birthdays. I was determined to have Austin on his Mike's birthday or my dad's birthday, which is tomorrow, Aug. 18th. Austin was born at 11:55pm.
Sorry the site has been acting crazy and I haven't been able to update. Hopefully you read the guestbook when I wrote in it.
Madi is such a trooper. I am constantly amazed at all she does and goes through. I know that this is through prayer that she is able to fight on with determination.
Madi's thyroid is ok, she doesn't have to get on any new medications for that. Madi's heart had been racing, so she had to have an x-ray and an EKG. Madi's heart seems to be fine. We think that her heart started racing when she had to get back on her anti-fungal, as a preventative. It bothers her mostly at night when she is trying to go to sleep.
We are slowly wheening her off her pain meds that keep her up every night until after midnight. I have to start back at work next week and I am the one that sleeps in the same room with her, so I guess I am going to take the computer and tv away from Madi so we can get back on a better schedule.
Madi has been working so very hard at physical therapy. They increased the tension in her leg/ankle braces but they have started making sores on Madi's ankles, so she can't wear them until her ankle's are well. She is happy with that, but we are delaying her progress. Madi has been doing awesome in aqua-therapy! I am going to miss watching Madi in therapy when I'm back at work.
Mike is doing better with his MS. Austin had a hard, but fun week at football camp last week. Of course the weather had to be extra hot. Austin got a bloody nose on the last day. The coach made him take his white shirt off since it was covered in blood. Austin doesn't like going shirtless. Austin is enjoying playing nose-guard. He is only going to be in the eighth grade and he is over six feet tall. The last time that he weighed at the hospital, he weighed around 230.
Please pray for all the kids trying to recover from transplant. So many kids have so many problems like GVHD, like Madi. One of our good friends, Tangy (20), has been going through the same thing as Madi. We became friends when we all lived on the hemoc floor back in 2003. Tangy also did photopheresis at MD Anderson like Madi. She can't walk either.
My last prayer request is for my second cousin, Anthony Merka, who is in Iraq. Of course he can't tell his mom everything that happend, but we do know that a bomb went off and it ruptured his eardrum. He was in the hospital in Iraq. If the injury is really bad, they fly them to the hospital in Germany, which wasn't the case, so hopefully Anthony will have a full complete recovery soon.
Thanks for all the many prayers and please keep them coming!

Tuesday, July 31, 2007 9:55 AM CDT

Madi is still getting her IL-2 shots on Mondays and Wednesdays. Madi's liver counts were going up last week so she was able to get off her anti-fungal medicine, but as of yesterday, she is back on it again as a preventative. Hopefully she can get off of it and stay off of it soon. All of her meds have so many side-effects. Her pain meds keep her up to midnight. As of last night, we cut her evening methadone dose in one-half, so hopefully she will do ok with that. She is still on a fentanyl pain patch and takes her normal morphine twice a day.
Being on the go to the hospital and aqua-therapy four days a week was draining Madi, so we all decided to drop the Friday PT and BMT clinic, so now having Tuesdays and Fridays will be better for everyone, especially Mike and Madi.
Mike's MS has been really been getting the best of him lately, so please pray that he will start having much better days as well as Madi. She is still very stiff and can't move her legs. She can move her arms enough to play on the lap top and feed herself, I just have to hand everything to her since she can't straighten her arms to reach for anything. Please pray that Madi will be able to get more flexibility in her joints and some range of motion soon. Madi rode the PT bike yesterday down to the bridge on the third floor, which bridges the clinical care building and the West Tower together. She enjoyed that and she didn't even have her oxygen on at the time.
Tomorrow we have four appointments at TCH. Madi sees a endocrinologist, a physio-medicine specialist, and our routine BMT clinic, and physical therapy.
Please pray for all those who have lost loved ones. We have good friends that are struggling just to get through each day here lately. May the Lord send extra Angels down to help those who need help the most!

Friday, July 20, 2007 11:48 PM CDT

Madi had a busy week again going to the hospital for bmt clinic and physical therapy on Monday, Wednesday and Friday.
On Thursday Madi started her aqua therapy, which she enjoyed.
Madi is just now going to sleep. It's been a long week.
Tomorrow, which is Saturday, July 21st, will be a benefit for Mason Leibham at the KC Hall in Crosby. He was born on 4-2-07 with Pfeiffer Syndrome. Dinner starts at noon and then there is a dance and an auction at 6:00pm. There is also a brisket sale for August 18th. Mason is such a cute little guy who has lived much of his life at Tx. Children's Hospital. He still has such a hard life ahead of him, but we know that all things are possible through Christ. Let's pray that God gives Mason's parents, Brian and Vanessa, the strength that they need as well.
We have also had some more friends from the bone marrow transplant unit that have passed away recently.
Please pray for the families of Walker (age 3) and Nathan (age 15).

Saturday, July 14, 2007 2:31 PM CDT

I don't know if I told ya'll that Madi had cast made over a month ago for legs. Well they finally came in and Madi has been wearing them for six hours a day now. They do cause her a lot of swelling around her ankles, so we have to watch her very carefully.
Madi had bmt clinic and pt three days this week as usual. Madi also started back again on her IL-2 (chemo shots) yesterday. The doctors were worried about not having her on some type of immune suppression drugs. They are thinking about doing another biopsy into her skin, fat, muscle, etc... I am hoping that we won't have to put her through this right now.
The results from Madi's bone density test came back and everything looks ok, so she won't need calcium infusions like we thought that she would.
In physical therapy on Monday and Wednesday, Madi got strapped into a contraption that helped her stand up. It actually kind of just held her up in the air, so her body could get use to being in a straight position once again. It was very uncomfortable for her, but she will get use to it.
On Wednesday in pt, Madi rode the bike three laps around the floor. She was use to only riding it twice around the floor. On Friday Madi worked on her arms.
Madi has been having a lot of vomiting again, so she has to get back in the routine of taking her Zofran again.
For special treats for Madi, I have been buying her the Webkinz trading cards, which she gets after a hard work out when we leave the hospital. For those of you that have Webkinz and want to socialize with Madi and her animals, you can find them at: bonemarrowtransplant and her other account is: ilovemydoctor
After trying tons of different names to log in under and all of them were taken, we had to get unique, so that is why Madi uses bonemarrowtransplant and ilovemydoctor!
I need to ask for special prayers for the Gant and Rucka families. One of Mike's good friends, Steve Gant, lost his little brother, who I think was around the age of 40 something. Mike will be at the funeral home tonight for visitation.
My Aunt Dorthy Rucka died yesterday around 3:00pm. Aunt Dorthy's visitation will be Monday night and the funeral will be Tuesday morning.
Thank you all for the love and prayers.

Saturday, July 7, 2007 10:21 AM CDT

The kids both want to use the computer, so I will give a quick update.
Of course we didn't have to go to the hospital on the 4th of July, so Madi has been hurting more since she didn't get PT on Wednesday. Thursday Madi had a MRI at 6:00pm. We didn't schedule the MRI with sedation because it was only suppose to last 45 minutes to an hour. Needless to say that poor Madi didn't finish until 9:45pm. She didn't move at all and the machine didn't break down. Madi was very uncomfortable when the ladies were getting her ready on the table. She had to bend her ankles in a very painful position, so the one lady suggested that they do it differently. They put a heavy round cord on top of Madi's ankles, which made the MRI last so long. She didn't tell us that it would take so much longer, or Madi said that she would have prefered the first position. Madi also said that when the machine got the loudest, the cord was stinging and burning her legs, which is why she was screaming. Madi cried so hard for so long during the MRI. She was suppose to get all her pain meds. at 8:00pm, so she got behind on all of those. They also made her take off her Fentanyl pain patch that she wears on her tummy. It was a terrible experience for all of us.
When we went to clinic yesterday at the hospital, they did say that everything did seem to look ok with Madi's right ankle. We were at the hospital at 8:00am to test Madi's t-reg. cells and she got her monthly patamadine breathing treatment, which she threw up in the middle of her treatment. She also got her monthly IVIG infusion, which always makes her feel so yucky for a few days. Madi cried a lot at PT.
I still feel so bad for making her go through the MRI for such a long time the other night. I have been buying her Webkinz Trading Cards for her special treats now, which makes her very happy. Madi got a Webkinz for her birthday, which was her favorite birthday present. They are cute little animals that you buy at Halmark stores for about $10.00 or so. The Webkinz have a code on them that you access on their website online. You have to feed them and take care of them. You get to buy things for your house for them. You earn money buy working at jobs and playing games. The other day Madi's elephant, Elle, got sick and she had to take her to the doctor. The medicine cost $50.00 to make Elle well. Madi was so upset when Elle wouldn't eat. Madi bought Elle a swimming pool and a trampoline this week. Even though Madi can't do a lot of things, she can do anything through her Webkinz!

Tuesday, July 3, 2007 5:58 AM CDT

I have to ask everyone to pray for another special intention for a mother and her two sons that are going through some really difficult times right now in their llves. I don't know them through the hospital, they live here in Crosby. I haven't been able to sleep at all tonight, I just keep praying and thinking about them.
And now for a Madi update.
Can you believe that we stayed out of inpatient hospital for the month of June? I think that this is only the second month that we have missed out of the last 21 months or so since we found out in Nov. 2005 that Madi had relapsed. ASK, BELIEVE, and RECEIVE and thank the Lord for all his many blessings that he bestows upon us is still our motto. Last week we kind of thought that we had bad news and that bmt wanted to start Madi back on her chemo shots. She has been eating so much better during the last couple of weeks since she got off the IL-2. When they had tested Madi's t-regulatory cells, they had told us that they went from 27% down to 0%. These are the cells that fight Madi's Graft vs. Host Disease. Yesterday they told us that they re-ran the test and Madi has 17% active cells, which is wonderful. They will re-test Madi's t-cells on Friday.
Physical therapy also plays a huge part in Madi's recovery as well. Last Wednesday at PT, Madi rode the bike around the 21st floor two times. She also rode it twice yesterday. Madi also has a bicycle type machine that her hands must turn for 12 minutes. She had to sit on a huge ball yesterday and play basketball, which she cried so hard, since she doesn't have hardly any range of motion to lift her arms up into the air. Madi's PT girls are wonderful, they never cut her any slack and push her to the limit and beyond. Madi knows that it is for her own good, so she just grins and bares it.
We have some more good news, an opening just became available for Madi to do aqua therapy through TCH. She doesn't start until July 17th. It will only be one time a week for 45 minutes.
Madi is still on oxygen, but she doesn't need it as much as she use to need it. Madi thinks that she needs it, more than she actually really does. She almost panics when she doesn't have it every second. We have a big heavy pulse-ox machine that Madi has to see her good O2 sats to believe that she doesn't need her oxygen on her face. We don't have a portable pulse-ox machine, so we really don't know how she does in the car and when she is sitting in her wheel-chair. Sometimes Madi dips down into the low 80's and does still need oxygen. But we are slowly wheening her off oxygen.
On Sunday Madi finally had the privledge of meeting Hannah Slaughter. Hannah's mom, Jane, use to work with Maw-maw at Sheldon Elementary a long time ago. They live in Needville, I think. I could call Mom right now and ask her, I know for a fact that she is up praying, but I would probably give her a heart attack with the telephone ringing this early in the morning. But getting back to Hannah, she is always writing Madi letters through the mail. Hannah told her mom a long time ago that she wanted to do something to help Madi. So they sold holding crosses at their church for a fund-raiser. Hannah decorated Maw-maw's house for Madi's belated birthday party. She even made cupcakes. She even brought crafts to do, since Madi loves crafts. The girls played Bingo and just had a blast being together.
Our family is always so touched by how so many young kids, as well as adults, are moved by Madi. We thank God daily for each and everyone of you all.
Madi has an MRI of her right ankle on Thursday, so please pray that everything will look ok so Madi can start putting some weight on her feet and trying to stand up.
Have a safe and happy 4th of July!!!
Please remember to pray for all those fighting for our freedom, especially my second cousin, Anthony Merka, who has been in Iraq for over a month now. GOD BLESS AMERICA!

Wednesday, June 27, 2007 10:46 PM CDT

I want to ask everyone to add Coleson Shaw and his family to your prayers. He was just admitted to TCH for a bone marrow transplant. I hope to meet them soon.

Now an update on Madi. Part of my update last week got omitted, so I will sum things up quickly. Madi finished her eight weeks of IL-2 shots. She had the total of 21 shots. The doctors wanted to continue the shots since she was making progress. Mike and I asked them to stop the shots and see how she would do on her own. Madi was only able to go to PT one time last week, so her legs and arms have been causing her more pain.
They tested Madi's T-regulatory cells on Monday and they have dropped down from around 27% to 1%. This is what helps her fight the chronic GVHD. The doctors want to probably start back with the IL-2 shots on Friday. They were going to talk to the physical therapist and see how she is progressing. We are still praying that she will not have to get back on this type of chemo. She has been eating like crazy during the last week and she hasn't had to worry about any nausea or vomiting.
This morning we had an 8:00am appointment with Dr. Perez, who is a wonderful rhumatologist. She rulled out that Madi has scleraderma, which is wonderful news, since there is no cure for this disease. She wants Madi to get some type of infusions which is high in calcium. She said that Madi probably has hair line fractures all throughout her bones. She said that her goal was to have Madi walking in some way, with or without braces or crutches, in six months. I am praying that it will be much sooner.
After that appointment we went to the bmt clinic for blood work. We talked to Dr. Krance about starting back on the IL-2. He said that we would just see how she would do in PT today and then we would talk about it on Friday.
We had four hours to wait between clinic and PT today, so we decided to walk down to MD Anderson and visit our "old family" since we stopped going there when Madi got admitted to TCH and started doing the IL-2 shots ten weeks ago. Everyone at photopheresis was so excited to see Madi and that she was doing better than before. We even had to go and visit all the ladies in the lab who use to do Madi's blood work. It was great seeing everyone, they were always so good to Madi.
Madi had an extreme physical workout at PT at 3:00pm. Madi's hands rode a stationary bike for over eleven minutes. She then rode the bike around the entire floor two times, which was a first for Madi. She does cry a lot from the pain, but she is such a trooper.
One of the best things that happend today is that Madi ate all day long! She had pancakes and milk from McDonalds on the way to the hospital. She ate chicken before we went to bmt clinic. She ate chicken at the cafeteria at MD Anderson. She wanted chicken again as soon as we left PT. She also drank a lot of milk, root beer, and her Resource drink. She ate a lot of grapes when we got home tonight. She also always drinks a lot of water throughout the night.
Another good thing that has happend as of Monday, is that Madi only takes 50 mg. of lasix once a day now instead of two times a day. On Monday and today she was down to 23.8 kg, which is the lightest that she has been since she lost so much fluid. She still has fluid, but not very much.
Thanks for all the prayers; they are working. Please pray that the Lord will guide all the doctors in their decisions and treatments for all the kids that are sick.
Also keep the Shaw family in your prayers as well as a new friend that we met at MD Anderson today. Paul is a remarkable guy that we met in the cafeteria. He has the same philosophy as we do, which is always count your blessings and be happy with the little things that are so easy to take for granted.
Also pray for the caregivers and friends of one of Madi's little bone marrow transplant friends, Serenity, who passed away this week.

Thursday, June 21, 2007 1:12 PM CDT

Madi had a great week last week mainly because it was her 9th birthday on Saturday, June 16th.
We started celebrating at the hospital last Friday. Madi's best friend Savannah came to the hospital and got to play games with Madi at physical therapy. Savannah got to come home with us and spend the night. The girls enjoyed playing WII games, making crafts and playing BINGO.
We got up early on Saturday morning and went to Deerbrook Mall. The girls went to Libby Lu and Build-A-Bear. We then went to the movies to see Shrek the Third. We ate pizza and a chocolate chip cookie cake. This was the first time that Madi has been to the mall since she has been on oxygen. We then took Savannah home to Pearland Saturday evening.
We had a big family birthday party at mom and dads on Father's Day.
Madi got her last IL-2 shot on Monday. That made a total of 21 shots during the last eight weeks. The doctors wanted to continue with the shots since Madi is making progress, but we told them that we wanted to stop IL-2 because she has so many side effects from this chemo, like nausea, vomiting, flu like symptoms, hair loss etc...
We are also staying off immunosuppression drugs too. We are eager to see Madi's body start to heal on its own for a change. Madi did have to start back on Triglide for her high triglycerides again.
On Monday Madi had to get an x-ray of her right ankle, which has been bothering her since March. She will also have an MRI done too.
Thanks for all the birthday cards and well wishes.
We want to thank especially the Ramseys, whom we met at the Ranch, for all the gifts. Austin, Mike and I didn't deserve any birthday gifts, but thanks for thinking of us too!
Madi didn't get to have PT on Monday because the elevators from the 16th-21st floors were not working.

Monday, June 11, 2007 11:04 PM CDT

Austin just barely made the auction with his pig last week. He got 6th in his class and he was 23rd over all pigs. Only 25 pigs can be auctioned off.
We would like to thank the buyers: Murff's Turf and Crosby State Bank for buying Austin's pig. He got $4950.oo
Since Mike was so busy taking care of the pig for the fair, I didn't have his wonderful help taking care of Madi Monday, Tuesday, and Wednesday, so I have been in severe pain in my back and knees. I am much better now though. On Monday my sister went with me to the hospital to help and my mom went with me on Wednesday. My sister is having knee problems now and my mom had to go the emergency room today because she couldn't walk. She has a Baker's Cyst behind one of her knees. So please keep her in your prayers and especially pray that she won't have to have surgery to drain it.
Madi is still working hard as usual in physical therapy. She rode the bike again today at PT. She cries, but she never gives up. Every now and then she will tell us that she needs a break for a few seconds, and then she continues. She is so strong.
She threw up as soon as we got off the elevator on Friday. Thank goodness that I had an empty coffee cup for her to use. We will all be so happy when all the nausea and vomiting are over with. Madi is counting down the IL-2 shots that she still has to get. But she is having so much fun counting down the days until her birthday this Saturday!
Thanks for all the love and prayers!!!

Tuesday, June 5, 2007 8:57 AM CDT

Yes, we still have a computer. I am sorry that it has taken me so long to update. We had a perfect weekend. Spring Creek Ranch is located on the other side of San Antonio. We passed through Castroville, Hondo, and D'Hanis. We had a nice 5 1/2 hours to the ranch. Madi did great riding so long in the van. The rest of the group got to fly to San Antonio and then they had a long limo ride to the ranch. Due to Madi's oxygen use, we couldn't fly. Austin and Madi really don't like flying very much. They would rather stay on the ground.
The only words that any of us can use to describe the Squirrel Creek Ranch are: HEAVEN ON EARTH!!!
The only way to describe Sidney and Donald Faust are: ANGELS AND SAINTS!!!
I am so still in shock that Donald and Sidney Faust (millionaires) are so loving and caring and trustworthy of others, and can open up their home to complete strangers. The motto was "mi casa, su casa" and it truly was the case.
We never had or needed any keys for anything. Everything stayed unlocked at all times. We could lock our rooms from the inside at night. The only rule that we had was to not go into the Faust's master bedroom. That was it. Can you believe it?
We were also blessed by eight other wonderful staff members from TCH and Baylor School of Medicine. They were: Dr. Scott Basinger, Carmen Kay, Dr. Kathryn Leung, Janet DeJean, Christopher Baldez, Eric Hyun, Geoff Preidis, and Stacy Johnson. They were our very special angels too!
They all stayed in the main house with the Sid and Don. We all stayed right next door in rooms that were like motel rooms. Madi and I stayed in the Apache Room while Mike and Austin stayed in the Cherokee Room.
Some of the other bone marrow transplant kids that went were: Chaise Cheatham, Garrett Johnson, Athena Carrera, Gabriel Garza, and Erick Vega. Counting parents and siblings, there were 25 total with family members. It was nice relating to others that have gone through transplant too. We were really glad that Chaise, Khouloud and Wayne Cheatham got to go too. Chaise had his transplant a couple of weeks before Madi, so we all lived together at TCH for a long time.
From 8:30am until 9:30pm our days were action packed. Some of the free choice activities were: swimming in the beautiful pool, tennis, biking, fishing, arts and crafts, jewelry making, and horseshoes.
Our planned activities were: a hay ride to tour the ranch, horseback riding and touring the old antique house.
Instead of us riding on the hay ride, Mr. Faust gave us the air-conditioned jeep ride which was so nice for Madi. Some of the favorite exotic animals on the ranch were: Addax, Axis Deer, Barasingha, Bison, Blackbuck Swift, Camels, Dall White Ram and Black Hawaiian Ram, Eland, Elk, Emu, Fallow Deer, Gemsbok, Grant's Gazelle, Impala, Kangaroos, Kudu, Llamas, Miniature Horses, Oryx-Arabian, Oryx-Scimitar, Ostrich, Red Deer, Rhea, Sable, Sika Deer, Swans, Texas Longhorn, Thompson's Gazelle, Waterbuck, Wildebeest, and Zebras, just to name a few favorties of the kids! He also has a lot of cattle and other animals. Madi loved following the ducks around.
Some other wonderful people that help run the ranch are: ranch manager-Bobby Dominquez assisted by Fiti Partsch and Chapo; the main housekeepers are Diana Ortiz and Liz DeLeon; the wildlife consultant and tour guide for the hayride, Chris Ramsey. Chris and his wife, Judy, also head up the horseback riding for the kids. The Ramsey's son, Josh, just got back from Iraq and also helped with the kids. (HAPPY BIRTHDAY JUDY)
One of my favorite things to do at the ranch was to eat! I know I gained five pounds at least. We had the most delicious meals that were also prepared to perfection! One of my favorites was Mexican food all made from scratch, even the chips!!! Mike loved the bar-b-que, Austin loved the grilled hamburgers and hot dogs. Madi still has a lot of nausea from her chemo in her shots, so she was happy just sipping on her Resourse drinks, watching everyone else eat.
All the kids had to take a hard quiz, but all the answers were given to them. All the kids won gifts for doing such a wonderful job. Most of the questions had to deal with the names of the many animals on the ranch.
One of Madi's favorite things to do at the ranch was playing bingo. She won a $25.00 gift card to Walmart on the very last game of bingo.
My really favorite thing to do at the ranch, besides eating, was watching Madi smile and laugh. Madi lit up with joy for the first time in 20 months when she got in the pool. Chaise's dad, Wayne, said that was the first time that he really saw Madi really even smile. I bought Madi a little raft so we could push her around in the water. She loved it. We got out of the pool to greet Mr. Faust when his plane landed in the front yard. When we got back into the pool, Madi sat on my lap on the second step and kicked her legs around like she was a fish. I haven't seen her do that in almost two years! It was amazing! Madi can't get her central line wet that is located close to her heart. Just taking a bath at home is a major struggle for Madi and us. She gets lots of sponge baths. The easiest way for me to wash her hair is to put her in the wheelchair. Madi's body is so stiff and sore. She is getting better though.
Getting back to the ranch, besides looking at all the exotic animals, Mike and Austin really enjoyed getting up at 6:30am and going fishing and catching lots of fish.
Leonard was another wonderful helper who was constantly rolling out the red carpet for us. I am sorry that I don't remember his last name. He lives in The Woodlands.
Fiti is also an awesome guy. He lives in Baytown. He is always at the ranch when kids come every few months. Fiti is from the Somoan Islands. Fiti even thrilled us with an exciting show Saturday night. I was a little nervous when he was twirling and eating fire so close to Madi's oxygen, but it was ok since we were outside.
During our stay at the ranch, we all had painted tiles. For our closing ceremonies, we walked down to one of the many beautiful statues of Saint Francis, who is the Faust's favorite saint. Saint Francis is the patron saint of children and animals. Dr. Scott had told us that they did genetic testing at Baylor and it proved that the Faust's are descendents of Saint Francis! It was a cute joke, but it is so true. Don and Sidney Faust will be official saints one day, mark my word! We placed our tiles onto a bench. After the tiles are fired, they will become the top of the bench. So we all got to leave a piece of ourselves there at the ranch for others to admire. Looking at all the other benches at the ranch was also a lot of fun. I also enjoyed looking at all of the pictures on the wall in the main house. I found a picture of Don & Sidney with Michael Curry, who was also from Crosby. Michael passed away a few years ago.
Leaving was bitter sweet. Please add everyone that I listed in my update to your daily prayers, especially Don & Sidney Faust, who are constanly bringing love and joy to others. May the Lord Bless them for giving so much to others!
Now just for a quick update on Madison's day at TCH yesterday, which was Monday. Madi's counts are looking good. She only weighed 25.7 kg. which is very good. As much as Madi sat in the wheelchair and rode in the car, we were surprised that she didn't have more swelling in her legs. She has less fluid in the back of her head, which is awesome. Madi's lungs sounded really good too yesterday.
And your not even going to believe what she did at physical therapy yesterday. She rode a bicycle!!! She had many seatbelts holding her in. And her feet were wrapped in lots of velcro and ace bandages so she could keep her feet on the peddles. Madi's therapist, Stephanie, guided the bike all around the floor for her. It was so wonderful to watch Madi's legs going around in circles!
All of you are responsible for Madi's healing through all of your devoted prayers, so I just want each of you to know how very special and dear you all are to us. May the Lord Bless you all with good health, happiness, and love!!!
Would it be too much to ask to pray for Austin and his pig to do well tonight at the Crosby Fair?

Sunday, May 27, 2007 10:52 PM CDT

We were at TCH last Monday, Wednesday, Thursday, and Friday. I was able to pop in at the kindergarten on Tuesday and see my kiddos. I have missed them so much during the last month. It is always hard to let them move on to first grade.
Madi had a high resolution CAT scan last Thursday. She doesn't have any scleraderma in her lungs, but she still has a lot of fluid that is causing her to be on constant oxygen still.
Madi has had 12 IL-2 shots and she still has 9 more shots to go.
She still has a lot of nausea and vomiting due to the IL-2. Madi is loosing some hair too. Not a lot though, I find it constantly on her pillow. I am constantly washing her hair too. Her hair is dry and itchy. She has craddle cap just like she did when she was a baby and also when she was five, after all her chemo way back then. Madi's hair is dark and curly again.
Just a few notes to let you know what's going on with us.
Madi is looking forward to next weekend. Our family has been selected as one out of five families to attend Squirrel Creek Ranch Family Retreat hosted by Donald and Sidney Faust. The ranch is located west of San Antonio. This retreat is specifically designed for Texas Children's Cancer Center and Hematology patients and family. TCH staff and Baylor Research Advocates for Student Scientists (BRASS)will also be at the retreat. Let's pray that all goes well this week and we will get to make the retreat.
To make life easier on all of us, we traded my 2003 Tahoe in last night and got a Toyota Sienna mini-van. We have been looking on-line for something comfortable for Madi. In the Tahoe, she had to ride in the front seat so we could tilt her seat back and then she had a little space that she put her legs up on a box to elevate them to prevent more swelling in her legs and feet. I would sit behind her holding her oxygen mask on her and I was also having to hold her oxygen tanks that took up so much room. When we would get home from the hospital, I couldn't stand upright. I was hunched over with terrible pains in my neck, back and legs. I was walking and acting like Mike does with his MS. He would laugh at me and tell me that's what I get for making fun of him so much. For those of you that don't know us very well, we act very silly and laugh all the time,especially when times get bad and you have to laugh to keep from crying. Needless to say, we enjoyed the van today! It will make our lives so much easier. Madi has a special wheelchair, so it takes up a lot more room. The Sienna was about the only one that was large enough for all her medical stuff. I still have to sign papers when we go back to Houston on Tuesday. Mike Calvert Toyota was nice enough to let Mike bring the van home without me signing all the paper work. (Just in case anyone is interested in a Toyota, Mike Calvert's dealership was $6,000.00 less than the dealership in Baytown). This was the first time in 20 years that we haven't bought a vehicle from Gerald Martin at Ron Craft Chevrolet. Gerald died last year. He was a great friend that we trusted. Ron Craft really tried to help us this week finding us an Uplander van for a great price. They didn't have any on the lot though. Mike and I didn't think that it would be big enough in the very back for all of Madi's medical supplies though. But we do appreciate all their hard work for us, just in case anyone is needing a Chevy. I always feel like giving credit, where credit is due. Which is why I am thanking each of you right now for being our special angels, helping us get through this difficult time in our lives right now.
MAY GOD BLESS YOUR FAMILIES WITH GOOD HEALTH, HAPPINESS AND LOVE!!!

Sunday, May 20, 2007 10:19 PM CDT

Thanks to everyone's prayers, Madi is doing much better.
Mike and I are not hovering over her all day long rubbing her legs and feet. She is even starting to eat a little. She has been doing a lot of school work during the last several days. She has even folded some small clothes for me. She has also has been playing on the computer a lot.
On Friday Madi got her weekly infusion of infleximab and her ninth shot. She loved Austin watching her in PT. She used a beachball to practice catching, throwing and kicking in physical therapy. So I bought a 20 inch ball this weekend and she enjoyed playing ball with Austin. Sometimes the ball would hit her in the head because she couldn't raise her arms very high, but she just laughed about it.
On Friday we got a better wheelchair from Option Care that reclines since Madi can't sit in an upright position yet. It also supports her legs so fluid can't run down and build back up. Madi's legs are looking better and her legs are getting softer.
Madi only has to take lasix every eight hours now instead of six, which makes it so much better for all of us.
We changed up some of her pain medications, which is also working out for the better too.
The doctors will take extra blood from Madi tomorrow to see how the IL-2 is reacting in Madi. Madi has three weeks down of IL-2 shots and four more weeks to go.
Let's pray that Madi can get off her oxygen soon. The doctors had debated about draining the fluid out of her lungs, but they decided not to do the procedure right now.
I hope everyone has a fun last week of school. I miss all my kids and friends at the kindergarten. Hopefully Madi will be doing ok without me for a little while on Tuesday and I can come and visit and tell my kidos goodbye.

Wednesday, May 16, 2007 8:24 PM CDT

Sunday, Tuesday and Wednesday were extremely painful for Madi. She has been in so much pain in her feet and legs. She is also experiencing a lot of nausea and vomiting and some hair loss due to the IL-2. Madi's T-reg. cells are still being stimulated like they should be doing. It is still too early to tell exactly what is going on in Madi. She is still on lasix every six hours night and day. Madi's skin seems to be softer on her arms, legs, and stomach. Her back is still pretty stiff and hard. Madi's flexibility seems to be a little better, but not much.
On Monday Madi's HGB was only 7.3, so she got a blood transfusion for the first time in over a year at TCH. She use to get two transfusions every time that she did photo pheresis at MDA. Madi's triglicerides are down to 644.
Today at clinic Madi had to get an IV in her hand because her line didn't work well enough to do blood work. She was extremely irritated because we increased her pain medicine, which was a big mistake. It made her angry and she started questioning God and where was he when she was in so much pain and needed him.
She got out some anger in PT at 2:30pm. Madi hates PT, but we are seeing a lot of improvements already.
The doctors want lots of Austin's blood on Friday, so he is happy that he gets to miss school and spend the entire day with us. This has been a really difficult year for Austin, but he has done well as usual. He passed all parts of the TAKS and was commended in reading. I guess I worry so much about him because of his dyslexia. But with prayer, all things are possible. During the week of testing, I know that Austin maybe got 4-5 hours of sleep on several nights since so much was going on with Madi at the hospital and the ER.
God knew that Mike and I were near the point of exhaustion, so he let Madi fall asleep early tonight. It might just be a cat nap, I don't know. I'm sorry that it has taken me so long to update. I need to catch up on house-work now, so I will sign off.
Thanks for continuing to pray that God will ease the burden of Madi's pain so she can get on to a speedy road to recovery.

Saturday, May 12, 2007 2:58 PM CDT

We came home Thursday.
We went to physical therapy at TCH and clinic. Madi got shot #6 and IV lasix. Two weeks down and five more weeks to go.
We are enjoying being home. Madi wants everyone to keep praying. We go back again on Monday.
HAPPY MOTHER'S DAY!!!!

Thursday, May 10, 2007 10:59 AM CDT

We should be able to leave the hospital later today. Madi is getting an Infliximab infusion right now for a couple of hours.
Madi's triglycerides are at 1490 today. Madi's lymph are 1.8% today. The shots seem to be stimulating Madi's T-regulutory cells, which is a great thing. The T-reg. cells should be telling Madi's cells that they are attacking the wrong cells, so hopefully they will do their job as planned. They will test her cells again next week to see if they are increasing still.
Madi got her 5th shot yesterday and she will get her 6th shot tomorrow in clinic.
Madi is still in a lot of pain and has requested that everyone keep praying for her pain to go away.

Monday, May 7, 2007 6:07 PM CDT

We are still in the hospital. Madi's triglycerides are 1848 due to her immunosuppression drug. The normal level is 20-150. She will not be getting this drug tomorrow. Madi already takes Fenofibrate three times a day for her triglycerides as it is. Madi's doctors consulted cardiologists about her heart and they have decided to give Madi Niacin to bring down her triglycerides. This can cause a lot of side effects of the heart, so Madi just got Benadryl for a pre-med.
Madi got her fourth shot of IL-2 in her leg today. She still gets a little nervous about getting the shot. She only cries after the shot is given because she says that it hurts. She is so brave about everything though.
Madi doesn't seem to have any lymphocytes either right now. The doctors are puzzled about this as well.
I will update when I have some more news.

Saturday, May 5, 2007 11:54 AM CDT

Madi got her first IL-2 shot on Tuesday and her second shot on Thursday evening. She will get her third shot today after 3:00pm. She started having flu-like side-effects immediately. The fluid is still coming off. She weighed 26.6 kg. this morning.
Madi doesn't want to get out of bed because it is difficult for her to bend at the waist. She slides out of chairs and the wheel-chair.
Last night they changed her from a slow constant lasix drip to lasix every four hours. Madi also started getting TPN last night. She hasn't had this in over a year.
We are trying to wheen Madi off her IV pain medicines. So she will get a pain patch to wear for 72 hours. We have had a bad experience with patches before, but she also had been sudated for surgery too at the time, so hopefully the patch will relieve a lot of her pain.
Madi has been working so hard through her physical therapy sessions every day. Respitory also comes in twice a day and beats on her back to break-up fluid. She is still on her oxygen. Madi still has fluid in the back of her head that causes a lot of pain for her.
The nurse couldn't get blood out of Madi's one line this morning, so a TPN nurse had to TPA her line. So we don't have any blood work counts for today yet. Madi is over-all doing so much better, but she seems stiffer and depressed more. Pain medicine really plays with her emotions.
Dr. Krance just told us that maybe we can go home on Monday or Tuesday now.
Thanks for the prayers and keep them coming!!!!

Tuesday, May 1, 2007 2:13 PM CDT

Madi is hanging tough as usual. We are still waiting for the interleukin-2 (IL-2)to arrive. It should be this afternoon some time. She will get her shots this week on Tuesday, Thursday and Saturday. Next week she will go to a Monday, Wednesday and Friday schedule. The treatments will last for seven weeks. We will probably get to go home this weekend.
I just have time for a quick Madi story. On Sunday I looked at Madi and she was scratching her forehead with her right hand. She use to only be able to reach her mouth and some days she could touch her nose. I said, Madi you are scratching your head!" She told me, "only with Jesus' help Mom!"
We feel all the love and prayers radiating from ya'll to us. It is such a wonderful feeling!!!

Saturday, April 28, 2007 12:37 AM CDT

On Wednesday morning, Madi was having problems breathing when we went to the lymphadema clinic at Memorial Herman Hospital. After Madi got a breathing treatment at MHH, we came to TCH and got admitted. Madi's fluid has been building back up again since she wasn't on IV lasix.
She has been in a lot of pain as well. The pain management team has been trying new things with Madi. The renial team has also been coming by and evaulating Madi's kidneys again. They decided that she needed a constant IV lasix drip instead of just two big doses a day, so needless to say, we have been going through diapers and our Cottonelle toildet paper from home, like crazy. Madi was down to 27kg. today. She weighed 28.2 four days ago.
On Tuesday when Madi went to physical therapy, Rod was just gently flexing her right foot when her ankle popped out of socket. It then went back in, but she has been in more pain in her right ankle. We x-rayed it here and it seems to be ok, she did have signs of osteoperosis, but we are not surprised since she hasn't been able to walk.
She also had a CAT scan and echo done. They showed more fluid built back up, which we already knew. The echo of her heart looked very good still.
Respitory comes in twice a day and beats on her back and tries to move the fluit around. Physical thereapist have also been coming in daily.
The plan has been to get rid of a lot fluid over the weekend and then on Monday Madi should start an experiemental treatment for GVHD using a new drug called inter-luken 2. A gene-cell doctor has been working on getting a study together using inter-luken 2 for the treatment of GVHD. Madi's Dr. Doug Myers asked him for his advice about Madi. From Madi's blood studies so far, she has about 80% less of a certain cell that she needs to help stop the GVHD. The inter-luken 2 should help stimulate those cells. Madi should get shots on Monday, Wednesday, and Friday of next week. They will keep doing blood work to see if her levels are going up or down. We are very excited about this study. We are also very happy that the doctors chose not to use the "big guns" of immunosuppression drugs now.
Madi will be the very first patient to ever recieve this treatment. They have been mainly thinking about giving this drug after transplant in order to prevent GVHD in bmt patients. So lets pray that this is our miracle that we have been wanting for so long.
We have also had wound care nurses back in since Madi still has her sores on her elbows and knees. Madi's head and legs still hurt her the most.
A kidney doctor just came in now and said that Madi's kidneys are doing a great job again moving fluid, but she still has a long way to go. Madi's potassium and magnesium has dropped a bunch, so they are adjusting that to her fluids going in.
Madi is always such a little angel, even when she is in so much pain. She continually brings joy to others. Madi has made two ladies cry because of her sweet personality. Madi was pretty high on pain medication the other day when we had to go a get an echo of her heart. Madi told the lady that was transporting us to the echo, that she was so pretty and young looking and that she liked her earrings. This lady just broke down crying and said you just don't know how badly I needed to hear something nice from someone. She told us that she had been going through some hard times right now because her seventeen year old son had been molested at his first job. We talked about how much goodness comes from bad situations. Madi's e-mail prayer warriors are a testimony of that! Madi also told a floater PCA (she takes vitals) at midnight that she was pretty and that she smelled so good. The PCA said that everyone usually hates her because she has to wake everyone up when they want to sleep. I don't think that this lady was ever told that she was pretty either, if you know what I mean. Madi of course still says wierd stuff when she is highly medicated like asking me if I am going to die on the couch in the middle of the night when she needs me to change her diaper!
Well here comes some more teams of doctors in the room, so I will go. I wish I had spell check, but I guess you can excuse my sleep deprevational grammer.
Thanks for the prayers and keep them coming as usual!!!
It seems that every time that Madi is in the hospital that someone dies. We missed the funeral for Mike's first cousin's wife's dad yesterday. Please keep the Hill/May family in your prayers as well.

Friday, April 20, 2007 11:48 AM CDT

I'm trying to remember where do I even start since my last update? Tuesday morning Mike dropped Austin off at mom & dad's house before 5:00am so he could be at the hospital with Madi so I could go to work.
After work, I drove back to the hospital in the rain, to pick Mike and Madi up from the hospital since she was getting discharged from the hospital.
Home health care was going to deliver oxygen and supplies around 9:00pm for Madi. We still needed oxygen for the ride home, so Mike went to Option Care on Kirby,since we were still waiting for a nurse from wound care to come and evaluate Madi's elbows. She has the beginning of bed sores developing on her elbows.
We finally got to leave the hospital after 7:00pm. We picked up Austin and we were glad to finally be going home after six days in the hospital.
Joe, our delivery guy, had just left the house around 9:30pm when Madi started screaming and crying about pain coming from the back of her head. As soon as Mike felt the back of her head, he gave me that look and went to the other room and called the hospital. Madi's head was soft and mushy. I immediately started packing all the suitcases again. The oncologist on-call called us back after talking to Madi's Dr. Doug. He said that it was probably edema, since she has had this all over her body.
Austin had just fallen asleep, so I woke him up to get dressed. We quickly dropped him back off at mom & dad's house and we were on our way to the emergency room at TCH. Madi screamed and cried the entire way to the ER. She was also bleeding around her mouth. The weather was so bad and stormy.
Madi had a lot of morphine in the ER which didn't help. It actually made things worse for her. She was talking about wanting to die and go to Heaven.
We didn't have to wait too long before Madi had a CAT scan. The doctors compared it to the last scan that she had done in December and they decided that it looked about the same, which was good. Since they couldn't do anything else for Madi, they sent us home. She was so angry that they couldn't make her head stop hurting.
Mike and I were so fatigued since we hadn't been sleeping and eating much during the last week. Madi said that she would drink some milk if we wanted to go to Whataburger, which happend to be the only place open at 2:00am. Mike was only going about 15 mph when he ran a red light on Main Street. Of course we got stopped since we were the only car on the road. The police officer was very nice to us and didn't even give Mike a warning after he saw Madi sitting in the front seat of the Tahoe. She sits in the front seat so we can tilt her back in the seat and she puts her feet on top of a box. I sit in the back seat and hold her head when she drifts off to sleep. We even ran out of oxygen in the car, but Madi was doing ok. We now know to carry two tanks of oxygen in the car.
Around 3:00am we picked Austin back up from mom's house, just like he wanted us to do, if we didn't have to stay at the hospital. Austin didn't get much sleep during TAKS week, but I'm still praying that he passed everything.
For the first two nights at home, Madi just had a portable machine that told us her oxygen saturation level. No alarm would sound off if her levels went low, si I would get up and check her numbers. Madi's oxygen levels would go very low in the hospital, even when she was on direct oxygen, so we still have to watch her closely even though she is on oxygen.
A nurse from Option Care came over Thursday morning and brought the real monitor that calculates Madi's oxygen saturation level and her heart beats per second. This machine has an alarm if her levels go too low, so that makes it better for us. But last night, it kept alarming when she would move her finger, and so we have a few kinks to work through still.
Madi had lost over eleven pounds of fluid while she was in the hospital. Yesterday she had already gained two pounds of fluid back when she weighed at clinic at TCH. Lasix pills are not very effective on Madi, even though she still takes the pills at home.
A special ordered wheel-chair came in yesterday, but it was too little for Madi. Mike went and picked it up while I stayed at clinic with Madi. We stopped back by Option Care and pick up a bigger chair for Madi. We also had a bed-side potty chair and our other wheel-chair that Lacey M. was letting us borrow.
I went to work today. Mike taking Madi to physical therapy at 1:00pm today.
On Monday Madi has an 8:00am appointment at the lymphedema clinic at Memorial Herman Hospital. As soon as we finish there, we are rushing to MD Anderson. They will give Madi IV lasix before photopheresis.
I want to thank everyone so much for all the prayers and support right now. Madi hasn't been this bad in a long time. The doctors don't want to risk doing a biopsy because it would be too dangerous. Sometimes this is how leukemic cells develop, but the doctors think that this is highly unlikely since she has Chronic GVHD. They are concerned about how the fluid is building up around her skull. We will just pray the whatever is causing Madi so much pain, will just simply go away.
Thanks for all the prayers and keep 'em coming!!!

Monday, April 16, 2007 7:57 AM CDT

Madi is still in the hospital at TCH. She feels worse every day, but I think that she is looking better than she did when she was admitted on Thursday. We still don't know when she will get out of the hospital.
I have some good news. Madi's kidneys are working on their own and the results from the CAT scan from MD Anderson on Thursday morning, shows that Madi only has fluid in her lungs, not around her heart anymore! She has had fluid everywhere for over a year, but not anymore!
Madi has been getting a two-hour albumin infusion right before they give her lasix in the morning and at night, which helps pull fluid out more. Madi's albumin (protein) is what has been extremely low for over a year now.
Our nights at the hospital are getting a little better. Thursday night I probably only got 90 minutes of sleep since we did lasix all night long.
Respitory has been coming in every four hours around the clock to give Madi treatments.
Madi has been needing oxygen around the clock, especially at night. Her saturation levels sometimes dip down to 77% with oxygen. I constantly wake up at night and hear the nurse telling Madi to breathe even with her oxygen. She doesn't like the oxygen strap around her head, so we have to prop it next to her face with towels. During the day, she tells me when she needs her oxygen. She can't reach it even when it is right next to her because she has no mobility. She is constantly asking me to scratch the top of her head because she can't lift her arms. This has been going on for months though.
Madi has been in more pain and has been getting a lot more morphine. She already has been getting methadone 3 times a day. Yesterday evening Madi got some codeine for a change and had a really bad reaction to it. She even threw-up.
Mike came up early this morning so that I could come to work. Our kids have a really important end of the year math test and I really needed to be here today. Please pray that Austin gets enough sleep and does well at school since he has to get up at 4:40am when Madi is in the hospital. Pray that Austin, as well as all other kids, do well on TAKS testing this week!!!
Please continue to pray that the Lord will take Madi's pain away and guide the doctors in the proper treatment for Madi. Madi knows the Jesus will heal her, but he loves the way so many people are praying to him more and more, especially on Madi's behalf. She knows that SHE WILL BE HEALED AND WALK AGAIN!!!
Please remember to pray for all those who are sick and suffering. Oh, I have another special intention to pray for the new born baby of Brian and Vanessa Leibham who has to stay at Texas Children's Hospital for a long time...
MAY THE LORD BLESS EACH OF YOU AND YOUR FAMILIES AND KEEP YOU ALL SAFE AND WELL!!!

Thursday, April 12, 2007 3:20 PM CDT

Madi is being admitted to Texas Children's Hospital because it seems as though her kidneys are shutting down. She will have dialysis tonight or tomorrow for the first time.

Friday, April 6, 2007 10:11 PM CDT

Madi had a rough week last week. Last Wednesday Mike and Madi didn't get home until 9:00p.m. from MD Anderson. There was some kind of mix up on the paper work and her blood transfusions didn't get taken care of until late that evening. Mike rescheduled the Texas Children's clinic appointment that should have been on last Thursday and went last Friday instead. Mike has been really fatigued and drained since Spring Break.
Madi went to physical therapy twice last week. She really isn't making much progress with the leg braces because she isn't able to wear them but a few minutes at a time due to all the swelling and edema. She still has constant leg pains. Madi's legs are either ice cold or radiating extreme heat. Madi's sclermaderma is spreading from her legs up through her body. Her entire body feels like she is wearing a suit of armor. She has no muscle control at all. She slumps in the recliner and asks us to come and move her back up.
Madi recieved a wonderful gift last Thursday from Ed and Beverly Muskwinsky. (I hope I spelled their name right). They bought her a hospital bed! They go to our church, but I have never met them. They have a daughter who has Reflex Sympathetic Dystrophy Syndrome (RSDS). Lacy is I think 20 or 22 years old. Right now she is in California getting treatment and learning how to walk again. From what I understand, they think that Lacy probably got this disease when she was only 7 years old and from a paper cut. This is something new to me, so I will explain it a little to you. This is a progressive disease of the Autonomic Nervous system that can follow a simple infection or injury. RSDS is ranked as the most painful form of chronic pain that exists today. This disease affects the nerves, skin, muscles, blood vessels as well as bones. So please add Lacy, as well as everyone else that suffers with RSDS, to your prayer list.
OK, getting to this week now. Madi had photopheresis on Monday and Thursday. She got her monthly IVIG at Texas Children's on Thursday. Because Madi's edema is getting worse, she also had to get some IV Lasix before she could go to MD Anderson on Thursday. Since Madi's sodium was extremely low yesterday, they wanted to see her again today at TCH.
So I was glad that I was off and could take Madi to clinic and give Mike the day off so he could take care of pig stuff. So we had to cancel PT for today. Madi's triglicerides are higher due to her new medication, so they are also watching this very closely.
After we left the hospital, Madi wanted to get her picture taken with the Easter Bunny at the mall. Since Madi wasn't able to take a picture with Santa this past year, I made sure that she got her picture with the big bunny. She just stayed in her wheelchair and he got close to her. Madi told me that she thinks that Jesus is really the Easter Bunny that delivers goodies on Easter Sunday! Madi's mind is always thinking.
We also had to cancel the PT appointment on Monday, since the GVHD doctor at MD Anderson wants Madi to see Dr. Fife at Memorial Hermann Hospital in the Lymphedema Clinic on Monday morning at 7:30am. So I am lucky that I am off and can go to that appointment and then to MDA for photopheresis.
Madi also has a CAT scan scheduled at MDA for next week.
I PRAY THAT EVERYONE HAS A BLESSED & HAPPY EASTER ON SUNDAY!
There is no way possible that I can explain how much everyone's prayers mean to us. Even if I could give each of you a million dollars for praying for Madi, it wouldn't come close to what your prayers are truely worth. They are priceless and they are working. I KNOW THAT GOD WILL HEAL MADI AND SHE WILL BE UP AND RUNNING AROUND AGAIN!
SO THANKS AGAIN AND KEEP PRAYING FOR ALL THOSE WHO ARE SUFFERING AND IN NEED OF THE LORD'S COMFORT AND HEALING!

Wednesday, March 28, 2007 7:23 PM CDT

YES, WE HAD A WONDERFUL TRIP!
On Sunday we went to San Marcos so we could see my nephew, Daniel, who goes to Texas State University. It was SWT when I went there. We enjoyed eating at Grins, one of my favorite places. The kids enjoyed seeing their big cousin.
We then headed to Austin. We stayed on the first floor at Comfort Suites. Madi cried lots of big tears when we talked about Brookie being in Heaven. We all cried a lot. Jessica made sure that I kept reminding Madi about when Jesus had visited Brooke a few days before she died. Brooke had told her parents that she wanted to go with the nice man.
It was really bitter-sweet seeing everyone again. It was so nice visiting with Jessica, Chaney, their daughter, Taylor, Granny, Nanny, Brooke's aunts, uncles, cousins, etc...What a truly amazing family!!!
The next morning everyone had funny stories to tell about when the fire alarm went off some time in the middle of the night. We had an air filter machine in our room and Mike thought that when he turned it off, the fire alarm went off. Everyone else in the other rooms were hitting different buttons like the alarm clock. Men were running down the halls in their underwear. The fire department and fire marshall even came. We just stayed in our room since Mike thought that he fixed the problem. At least we were on the first floor if we did need to get out. We never found out what really happend.
We checked out of the motel and headed to the capitol. We all met in Representative Dennis Bonnen's office. He is good friends with Jessica and Chaney. He is a very friendly and funny guy. Madi enjoyed listening to his stories. He told us about when he was younger and grew up at Texas Children's Hospital due to a kidney disease. He knew David "The Bubble Boy" and told us lots of funny stories.
We then went to the Senate first. Senator Jackson read the resolution. We then went to the House of Representatives where Representative Bonnen spoke.
I have been looking on-line for the resolution so I could quote to you all, but I haven't been able to find it yet. I will type it word for word when I locate it. Paraphrasing it doesn't do it justice, but I will summarize for you. They talked about Brooke's incredible five years of life and how she touched so many people's hearts young and old. They talked about Jessica and Chaney founding the BIG Love Cancer Care organization. (I will let you know when their web site is up and running again). They talked about Brooke's friend, Madi, and Austin being Madi's bone marrow donor. It was such a special day. Everyone treated Madi like she was a queen!
We all wore big buttons with Brooke's picture on it. It was the same picture that was printed on her program at her funeral. Brooke was holding her beagle puppy. And the good news is, the beagle is expecting puppies! Madi and Austin also have a beagle, which Madi thinks is pretty cool too.
The rest of the group still had lots of fun things to do on Monday, like touring the capitol, but Madi was getting really tired, so we skipped out on the rest of the day.
I will get ya'll more information later.
I know a special Mermaid with long flowing hair swimming in Heaven that is so very proud of her mom and dad! Brooke's kindness will continue to touch so many people's hearts too!
PLEASE KEEP THE PHILLIPS' FAMILY IN YOUR PRAYERS THAT GOD WILL GIVE THEM THE STRENGTH TO LIVE ON EARTH WITHOUT THEIR LITTLE BROOKIE!

Saturday, March 24, 2007 10:02 AM CDT

Madi had a hard week of physical therapy, which is necessary if she is going to stand up on her own and walk again. She just got leg braces that she is suppose to sleep in. She wore them for a few hours last night. (She told me that she has to get use to them). She also has an ankle brace that we will switch from one ankle to the other.
On Wednesday she got photopheresis. Madi's line didn't work again, so she had more TPA. Since she was coughing so much during pheresis, they gave her oxygen.
On Thursday Madi had her appointment at Texas Children's Hospital. She finished her all her chemo last week, so she didn't get any more. She was feeling really yucky, so they decided that she needed some IV Lasix to get rid of some fluid. They also decided to change some of Madi's medications since they didn't feel like the Cellcept are doing anything for Madi. Since the new immunosuppressant drug, Rapamune/Sirolimus, causes high cholesterol and triglyceride levels, she will also have to take Fenofibrate/Triglide. They will have to check her levels every week. So let's pray that the new Sirolimus will help Madi with her GVHD, and that she won't suffer from any side effects that are possible like, developing other infections, other cancers, serious liver problems, etc...
She just started taking her new meds. today.
I have some really exciting news to tell everyone!
I don't know if you all remember reading my updates about Madi's little bmt friend, Brooke Phillips, who past away last year. Brooke's parents, Chaney and Jessica, have founded the "BIG Love" organization, which helps cancer kids and families in hospitals. We have been invited to go the State Capitol in Austin on Monday, March 26th. They are going to pass a resolution in honor of Brooke's life and the new organization, "BIG Love" that was founded because of Brookie. At the Capitol, they will also acknowledge and honor Madison for being present and encourage her in her fight for recovery.
The new schedule for us should be:
1:00pm - meet in Rep. Bonnen's office
1:30ish - recongized in the Senate
2:15ish - recognized in the House
3:00ish - Capitol tour
We toured the Capitol several years ago with the kids, but it will mean so much more to Austin since he has been studying 7th grade Texas History this year with Diane Barron, who is such an awesome teacher!
We are going to church tonight and then we are leaving tomorrow morning when Austin gets out of CCE/Sunday School.
I will let you all know how things went when we return.
Please keep praying for all those who are sick and who have lost loved ones.
(Mike would just kill me if he knew that I was sharing this little conversation that we had at 7:ooam this morning at our house with you all, but I am going to tell you any way).
I got up at 6:00am and gave Madi her lasix pill. The guys got up early because they had to go to the fairgrounds and tag Austin's pigs in for the Crosby Show that is coming up in June. Mike was fussing at Austin to get his money, Social Security number, etc... together for tag in. Mike told Austin that Miss Harriet wasn't going to be there to help Austin anymore. Mike then started crying, I started crying, and then Austin started crying. (I was in the hospital with Madi and wasn't able to go to Harriet's funeral, so I really didn't have any closure to saying goodbye to such a dear friend). Madi just lightend up the mood when she told me to stop crying and hurry up and take care of her when she is on lasix. She said, "you know Mom I just can't hold a gallon of pp"

Tuesday, March 20, 2007 7:29 AM CDT

Spring Break was wonderful. I think Madi is having major withdrawals from me.
Yesterday was a hard work-out day at PT. She cried a few times. Madi's line didn't want to work, so she got poked for all her blood work. They put TPA in her line so that it would work for photopheresis. They got delayed again waiting for blood from the blood bank. They got home around 7:30p.m. last night.
Madi was in a lot of pain last night. I have been up with her since 4:00a.m. this morning. She was crying when I left her this morning. Pray that her Daddy has extra patience with her today and that her pain will go away soon.
I WOULD LIKE TO THANK EVERYONE WHO DONATED BLOOD YESTERDAY AT THE KINDERGARTEN IN HONOR OF MADI.
(I can see why Madi prefers an IV instead of a finger prick. My finger is bruised and so sensitive from where they poked my finger yesterday)

Wednesday, March 14, 2007 9:01 PM CDT

Sorry for the late update, our computer has been misbehaving lately. Madi got out of the hospital last Thursday night. Madi had to have oxygen when she went for photopheresis last Friday afternoon, so they didn't feel comfortable giving her photopheresis. So even though she was at MDA three days last week, she was only able to get her pheresis one time.
This week she was able to get her treatment at MDA on Monday and Wednesday. Of course she had major problems on both days, so we haven't been getting home until about 8:00p.m. Since the doctors at TCH increased her lasix last week, she has been extremely low in her potassium and magnesium. She had to get potassium through her IV before she could have pheresis done on both days. She has been taking like almost 20 potassium pills a day as well. That's not even counting all her other pills that she takes every day and night. Madi's line caused problems both days so that caused more delays as well.
On Tuesday Madi went to physical therapy in Crosby for the first time. She is excited about getting to stay in Crosby and not having to wait five hours between p.t. and photopheresis times at MDA.
Madi goes for Chemo at TCH tomorrow. This will be her 4th week to get chemo. I think it will be the last time!
Please pray for all those who are sick!

Thursday, March 8, 2007 9:33 PM CST

We just got home from the hospital about an hour ago. I am fixing to get in the shower.
I am going to work for half a day tomorrow and then we are going to MDA for photopheresis.
Thanks for all the love and prayers. Please pray that God gives Madi the extra strength and encouragement that she needs to endure this very long road to recovery!

Wednesday, March 7, 2007 7:42 PM CST

Madi is back in the hospital at Texas Children's Hospital in room 40. Hopefully it will only be for one night. They are concerned with her oxygen level. Right now her oxygen saturation level is at 94%. Tomorrow she will get lasix, breathing treatments and chemo.
I will update tomorrow. (Austin packed the lap-top for me, so this time I have it with me).
Please remember all those who are sick and suffering as well as Madi! THANKS!

Monday, March 5, 2007 7:34 AM CST

Madi and Mike have appointments all day at MDA today.
I am just getting over that nasty stomach virus and fever. I am praying that nobody else gets it.
HAVE A GREAT WEEK!

Tuesday, February 27, 2007 7:40 AM CST

Mike and Madi had another long day on Monday. While they were at TCH, MDA Physical Therapy called and said that they had a cancelation, and Madi could get in, so they left TCH, without seeing the doctor and hurried on over for PT.
Madi got photopheresis and the GVHD doctor decided that Madi also needs to have steroid infusions once a week, so she also got that after pheresis. She feels "yucky and dizzy" ever since she got home last night.
Let's pray that the chemo on Thursdays and steroids on Mondays will help speed up the healing process!
(For those of you who have a little extra time on your hands, Traci Oney, sent me a wonderful email a few days ago about Starlight Starbright Children's Foundation. Colgate is donating "fun centers" to certain hospitals, but you have to vote for Texas Children's Hospital. Just go to www.colgate.com To vote go to Starlight Starbright Children's Foundation or visit starlight.org
You then have to select a hospital from our region. Pick the South. Texas Children's Hospital is the only hospital listed in Texas. You can vote as many times as you wish.
The hospital has many toys for babies and toddlers, but these "Fun Centers" are geared for older kids that have to wait in the ER and places like that. They are portable entertainment systems for kids on wheels that help take your mind off your pain. I know it sounds confusing to do, but it is really simple)

Sunday, February 25, 2007 5:41 PM CST

Madi was admitted to the hospital because of respiratory distress.
I just had to go to the doctor Wednesday before I went up to the hospital. I got a shot and a lot of medicine for an upper respiratory infection. I still feel run down and sick, but my fever has stopped though.
Madi spiked a fever which was induced by the chemo, Rituximab. She had to stay at Texas Children's Hospital for three days. The first night was the worst. She had to keep the oxygen on for over 24 hours. I was constantly jumping up all night putting the oxygen mask back on her.
On Friday we went in the ambulance to MD Anderson to get her photopheresis. A nurse had to go with us because Madi's breathing was not stable enough yet. There were six of us in the small ambulance. Mike got to go with us for the first time. Madi was excited that he came along for the ride. (Mike had shingles when Madi had her eight trips in the ambulance for her total body radiation before transplant). We already knew one of the ambulance guys from before. They all are so nice and compassionate with kids.
Madi had lots of breathing treatments in the hospital. She was negative to RSV. Praise the Lord! She had her monthly patamedene treatment on Thursday. She had her monthly IVIG infusion on Friday morning.
Dr. Myers took out Madi's stitches from her biopsy on her leg. He really had to dig them out since they stayed in for over a month. (They were only suppose to be in for two weeks but everyone at MD Anderson was too busy to remove them). Madi really screamed and cried removing them.
Madi said that TCH did the best job doing her skin biopsy. She told me that a nurse held up a towel so she couldn't see the needle and knife at TCH. She said they have the best stitches because they dissolved on their own. She was very angry because they let her watch at MDA, and then they had to cut the stitches out. Dr. Doug only removed them for her because no one else would at MDA.
I convinced Doug to disscharge Madi before we went to MDA on Friday, so we didn't have to go in the ambulance. So we got to pack and hurry over to MDA. We got home around 7:00p.m.
We are not very happy with MDA physical therapy right now. Since she couldn't make therapy since she was in the hospital, she didn't get to be re-evaluated for therapy for the next three weeks. Madi has been totally removed from the schedule and has to start over as a new patient. We are going to see if she can do PT in Crosby, because she can't afford to sit around and wait for an opening again.
Madi has to go to TCH and MDA tomorrow. I am going back to work. Madi will start getting Rituximab (chemo) on Thursdays for the next few weeks. Let's pray that this is what she needs for her GVHD of the skin and her sclerodema due to GVHD.
PLEASE PRAY FOR ALL THOSE WHO ARE SICK AND SUFFERING!

Friday, February 23, 2007 8:54 PM CST

We just got home from the hospital a little over an hour ago. I am busy cleaning house now. I will tell you all the whole story tomorrow.
THANKS FOR THE PRAYERS!

Wednesday, February 21, 2007 2:48 PM CST

Madi is being admitted to Texas Children's Hospital. She will start getting chemo once a week for her GVHD. Because of her problems breathing, they want to keep her and watch her carefully. The chemo is a five hour infusion. She will get it shortly.
I will be going up to the hospital after my 3:45p.m. doctors appointment.

Wednesday, February 21, 2007 7:25 AM CST

Madi was suppose to go get pheresis today, but they called yesterday and canceled because they had to harvest too many stem cells and didn't have time to do Madi. Hopefully she will get it on Thursday and Friday.
Madi woke up this morning and couldn't breathe. She used her inhaler many times. Mike left the house at 6:30 for Texas Children's Hospital. She didn't have an appointment until tomorrow, hopefully she won't have to wait too long.

Saturday, February 17, 2007 8:28 PM CST

Madi had three days at the hospitals which each time lasted about twelve hours on Monday, Wednesday and Friday.
On Monday they were concerned that Madi had a blod clot in her left arm. She had nuclear tests done in her veins to make sure that she didn't have any clots. Everything came back normal. Madi had to have several IVs placed into her arms for the tests. She is still bruised from the IVs. Madi's line wouldn't work well enough, so she had to stop in the middle of her pheresis treatment on Monday.
I took her in on Wednesday since Mike and Austin were in San Antonio. Austin made it through his sift, but they only sell the top six in each class, so he didn't make the auction.
Mike took Madi in on Friday, so she was able to get her pheresis done twice this week.
She went to physical therapy at MD Anderson three times during the week. Madi is still very stiff in her joints. She still can't lift her arms straight up yet. She can't stand up or walk yet. It will still take a lot of work in therapy.
Madi tries so hard to eat for us. She has a lot of drainage. She vomited twice today after drinking milk. She loves milk.
Madi loved bringing Valentine cards and candy to everyone at MD Anderson. She has enjoyed making over 300 cards to send to the troops in Iraq. (It seems just like yesterday, eventhough it was last year, when we were staying at the Ronald McDonald House. Madi had one bed covered with cards for everyone at Barrett Primary. She then got admitted back into the hospital. This was when the Graft Vs. Host Disease first occured).
Madi's leg biopsy showed that it is still the Graft Vs. Host Disease of the skin. She still didn't get her stitches out yet on her leg.
Madi has enjoyed opening Valentine cards from so many people that are praying for her at Grandma Ossie's and Grandpa Brown's church in Baytown, Cedar Bayou Baptist.
THANKS FOR ALL THE PRAYERS AND LOVE!

Sunday, February 11, 2007 7:27 PM CST

Madi had physical therapy on Thursday morning. She also had a skin biopsy on her upper right leg. The needle that they use to numb her skin, hurts the most. She is mad because she can't take a bath until they take the stitches out. She also had her photopheresis done on Thursday afternoon.
She still can't walk at all. She only had about two bites of mac & cheese today. She drank a lot of milk and juice. She said that she would eat more, but she is in too much pain.
Mike takes her tomorrow for therapy and photopheresis.
I am taking her on Wednesday because Mike and Austin will be in San Antonio showing his pig for 4H.
Madi wants my constant attention, so I will make it short and sweet this time.
MADI SENDS ALL HER LOVE FOR ALL THE PRAYERS AND WISHES EVERYONE A HAPPY VALENTINES DAY!!!!!

Tuesday, February 6, 2007 6:48 PM CST

Madi only went to TCH yesterday. Her blood work looks good. Madi's nutrition is low though.
I took off from work today and went with Madi and Mike to MD Anderson. Madi had an 8:00a.m. physical therapy evaluation and and first session. The Graft Vs. Host Disease has really affected her joints in her legs, hips and arms severely. She will need PT three times a week. She still can't walk at all. She cries when she has to stand up and put her clothes on.
After PT she had to get blood work done. We then went to apheresis to get Alteplase in her line. After the TPA sat awhile, she then got her photopheresis. Today Madi had no delays waiting for blood from the blood bank! She did get very sick during the last hour of her treatment. Madi's blood pressure was very elevated. She had to get some extra fluids before she got her cells back. Madi always feels really yucky getting her cells returned back to her.
I have been reading a book about the archangel, Michael. Today I was reading about how he can communicate with someone, either through other people or in a dream. It was very ironic when we were waiting for the valet guy to bring the Tahoe, that a man appeared from thin air next to Madi and I when we were watching the fish in the aquarium. He started talking to us and when Mike walked up, he was praying over Madi. When the Tahoe pulled up in front of the hospital, Mike unloaded Madi and took the wheelchair back to the front of the hospital. I put all of our stuff in the front seat and then crawled into the back seat with Madi. All of the sudden someone opened my side of the door. I assumed it was Mike, but it was a nice lady who asked me what Madi's name was. She told me not to worry about her because she was going to be praying for her now. She then shut the door and was gone. Mike was asking about who was that? I am glad that we have extra angels besides all of you all praying for Madi too!

Saturday, February 3, 2007 10:19 AM CST

This has been another busy week as usual. I had parent-teacher conference Tuesday and Wednesday until 5:00p.m. Thursday we had our late night until 8:00p.m.
Mike and Madi had a 12 hour day on Monday at MD Anderson. They got delayed a few hours due to a shortage of blood from the blood bank. (I had several people asking about donating blood for Madi. She use to be A positive, but now she has Austin's blood type, O positive. I know MD Anderson would greatly appreciate blood of any kind donated. She never gets blood at Texas Children's Hospital).
On Monday she developed a rash on her legs. The specialist looked at her legs and said it was from the chronic graft vs. host disease. She hasn't been able to walk at all this week. She has an appointment with physical therapy at MD Anderson on Tuesday morning at 8:00a.m.
Mike and Madi were delayed once again at MD Anderson on Wednesday because someone forgot to put Madi on the schedule, so they didn't get started until after 4:30p.m. Austin and I went up to the hospital when I finished with my conferences at school.
Madi had an echo of her heart at TCH Thursday morning. The results showed about the same as the last one she had done. She also got her monthly IVIG. She was at TCH all day. The doctors are trying to figure out why Madi is having so much pain in her legs and hip. She gets so emotional and irritated. She cries for hours at a time. I have been rubbing her legs late at night instead of updating on the computer. She hurts when Mike and I pick her up and carry her to the bathroom.
I thought that I was never going to get Madi out of the bathtub on Sunday afternoon. Austin and Mike were taking care of the pigs, so I was home alone with Madi. She use to just stand up and take a shower. I have the detachable shower nozzle, which makes it easy since she can't get her central line wet. But since she can't stand up, she got down in the tub. To make a long story short, I did get her out of the tub. I bought a sitting stool at Walmart this week to make things a little easier today.
Madi goes back to TCH on Monday. She goes back to MDA on Tuesday. Let's pray that she will start walking and eating better soon.
Thanks for all the wonderful updates from everyone. We enjoy reading them all.
Mike received a beautiful picture in a frame of the plant. We were so touched by what everyone wrote about Mike around the picture. I told Mike that he was lucky, because these kind of things are not usually said until a funeral. Of course you know Mike and his hearing problem and his selective hearing, he thought that I said that everyone thinks that he is dying now. If Mike can accept his MS now, hopefully he can accept that he needs hearing aides too. Those of you who know Mike, know that he only talks full blast all of the time!

Saturday, January 27, 2007 2:25 PM CST

Sorry I haven't updated since Tuesday morning. It has been another hectic week. Madi was only able to get her photopheresis on Monday. The company stopped making the tubing that they use only for Madi. The tubing finally came in on Thursday or Friday, but they wanted to test it out first to make sure that it was going to work. The adults that get photopheresis don't have to get blood transfusions like Madi does, so they don't use this kind of tubing.
It seems like since Madi hasn't been able to get her two treatments a week, she is getting worse. She is in so much pain walking, she cries and screams. We carry her a lot. We make her excercise, which she hates with a passion. She loves when we put hot towels and blankets on her from the dryer. I bought a heating pad, but it is too small to bring her enough comfort. We rub her legs and back constantly. She is so very depressed that she can't do the simple things she use to do, like just walking around the house and eating. She hates that she is so needy. (You would think that I would loose weight jumping up and down around here, but I don't. Mike is loosing more weight than he can afford to loose though). He gets really depressed too. He just told me yesterday that every day he makes Madi cry because of stupid little things due to his MS. He is not the strong daddy that he use to be. He accidentally pulls her line and little things like. He gets so mad at himself.
Mike was on "cloud nine" on Tuesday. He was pleasantly surprised with a medical retirement party at Exxon Mobil Tuesday. (Tuesday morning Mike took Madi to TCH to have Dr. Krance look at her skin. She doesn't have chicken pox, although many kids in Crosby have them right now).
We are so touched by everyone's kindness at the plant. Mike misses you guys so very much, you can't even imagine. He has Madi keeping him very busy though. Mom keeps Madi when Mike has doctor appointments. I keep telling him that this is a blessing in disguise, but it is hard to accept that you are disabled. He gets so frustrated and mad at himself when he can't do simple little things.
Austin is our strong ox around the house now. He is constantly growing while Mike is shrinking, don't tell Mike I said that though. I think I'm taller than he is now too. Mike's legs are just so bony. He is loosing bone density too. I'm so much stronger than he is just watching him carrying Madi around. She is pretty heavy though. I have some big arm muscles now.
Mike hated leaving his Exxon Family. I wish that everything could be like the old times, but they are not, so we just have to make the best of everything. Mike does a little better when Madi is doing better, so hopefully we can start seeing some improvements soon. She hasn't been wanting to eat, so we have to threaten her with having to put the feeding tube back in, which we all hated. We might have to start back on the steroids that increased her appetite, which we also hate, but we are getting desperate again.
But we will get through all of this, I know, thanks to all of Madi's online supporters. There is no way possible that I could ever express our gratitude to each of you.
I have to ask you all to pray for all those expecting moms-to-be. I have recieved a few emails asking for special prayers for some pregnant moms right now. Even though the doctors have told them that there will be problems when the babies are born, I know with God all things are possible. I will let you know how everything goes with these two babies.
Please pray for all those getting medical attention too. This week my friend's father-in-law had his central line put in so he could start getting chemo at MD Anderson.
I do have some really great news, my first cousin, Janet who lives in Austin, just gave birth this week to a healthy boy!
I know that everyone hates to sign the guestbook at times, but please let us know what's going on with everyone, whether it is good news or bad news.
WE LOVE YOU ALL SO MUCH!

Tuesday, January 23, 2007 8:09 AM CST

Madi didn't eat very much over the weekend. She vomited several times taking her pills.
Monday morning Madi's line just worked enough to do blood work, but then it wasn't working well enough to get her treatment, so MDA had to TPA the line and wait. We got home from the hospital around 9:00p.m. last night.
When Madi went to TCH yesterday after her early morning blood work at MDA, Dr. Krance thought that Madi had a rash on her neck that could possibly be chicken pox. That really scared us. When Madi went back to MDA in the afternoon for apheresis, the rash had disappeared.
Dr. Krance wanted to see Madi again this morning. So that is where Mike and Madi are now.
She should get photopheresis tomorrow.

Friday, January 19, 2007 2:24 PM CST

Madi's line didn't work on Thursday morning, but after TPA the line worked again. Madi got her photopheresis.
Mike and Madi had a 12 hour day at the hospitals yesterday.
She goes back to both hospitals on Monday.
Have a great weekend!

Wednesday, January 17, 2007 6:42 PM CST

I hope everyone is staying warm these days.
Madi hasn't been to the hospital yet this week due to the freezing weather.
Mike and Madi will be at both hospitals tomorrow though.
Let's pray that her line works again.

Saturday, January 13, 2007 8:44 AM CST

Thanks for the prayers, they are working!
Madi was able to get her apheresis done on Friday without any problems!
The princess wants to play on the computer now, so I guess I will let her play.
Madi goes back to the hospital on Tuesday.
HAVE A GREAT WEEKEND!

Thursday, January 11, 2007 7:39 PM CST

Mike and Madi were at TCH from 9:30-2:30 today. Madi's lines wouldn't work, so they had to wait a very long time to get Altaplace.
Madi also got her dressing changed on her new line. Some of the bruising is going away. The TPN nurse told Mike that the site looks very clean. She didn't have all the bleeding and oozing like she did with the previous line.
Madi enjoyed visiting with Marianna H. in the waiting room. Marianna is also from Crosby. She was diagnosed with AML right after Madi was diagnosed in 2003. For those of you that didn't know the story, our hemoc doctors at TCH on the 9th floor were so wonderful, they took Marianna to her senior prom so she wouldn't miss it and then brought her back to the hospital since we were all inpatients at the time.
Anyway, getting back to Madi, when they got to MD Anderson, both of Madi's lines worked, so PRAISE THE LORD! This was Madi's 4th photopheresis treatment. I went up right after school and Madi finished around 6:00p.m. so this was her fastest time yet even though they started late.
So like I tell my kindergarteners at school, give yourselves a pat on the back. All your prayers have paid off today! Let's pray that Madi's lines will both work tomorrow!

Tuesday, January 9, 2007 8:13 PM CST

We are just getting in from MD Anderson. Mike and Madi were there at 10:00am but only one line would work to do blood work. He went by Apheresis and let them know. The afternoon got delayed for her treatment several hours because there was a shortage of blood so we couldn't start until her two units of blood were available. Shortly after we started, Madi's other line didn't want to work. For some reason unknown to us, it just wasn't meant to be today. They were going to put an IV line in Madi and use the working line, but then the other line didn't want to work. Madi had to get an x-ray before MD Anderson could TPA the line (put the special medicine in her line to make it work). So all the blood transfusions were wasted once again. We had to go down and wait a long time for the x-ray, but we missed all the heavy traffic at least.
Madi has the day off tomorrow which she needs still to recovery from surgery.
Mike and Madi have to go to both hospitals on Thursday. I will go up to MDA after school. I will let you know what happens Thursday night.
I think that I forgot to wish everyone HAPPY NEW YEAR!

Monday, January 8, 2007 7:45 PM CST

Well Madi's day surgery Friday turned into a four day stay at Tx. Children's Hospital on the bone marrow transplant floor.
The doctors were concerned about Madi's cough and the cronic fluid that she has had around her heart and in her lungs, so she had to have x-rays and a breathing treatment right before surgery. She was on hold for surgery until they read the x-rays. Since she has had all the fluid for almost a year, they decided that it would be safe enough to take the old line out and put a new line in. (The doctors have been debating about draining the fluid again, but they decided that it will just keep building back up and they don't won't to risk another surgery).
After surgery Madi was screaming,"Help Me Jesus!" She looked terrible. She was so bruised up. She needed another breathing treatment and lots of oxygen. The doctors decided that it wasn't safe to send Madi home. They wanted to watch her just for one night.
Our one night stay turned into three nights.
The first night, Madi stayed on oxygen and it was falling down to 78% with oxygen, so she had to stay another night to make sure that she didn't need oxygen at home.
Madi's breathing was better the second night, but then she had an adverse reaction to the morphine and the tylenol with codeine, so she was very confused and disoriented and going out of her mind, which was so scary. She did remember me, but that was all. Of course she was up all night and couldn't sleep, so she wanted to watch tv. Everything scared her to death on the tv. The animated shows were the worst. She thought that everything was going to get her and hurt her. She didn't remember the names of things. She didn't remember Mike. I told her that he was on his way to the hospital to see her. She said I don't know him or know what he looks like. She did start remembering him after he was there. She did remember, a few hours after the doctors examined her, that she had one brother, but she didn't know his name. As the day went on, she remembered more and more.
Madi was then in a lot of pain because she could only have tylenol for pain. She has a lot of bruising from surgery. She also has a lot of bruising from all the IVs that have been in her hands and arms. The doctors didn't want to use her new line until she gets photopheresis done at MDA, so she has been getting lots of pokes for CBCs and fluids. She also was getting breathing treatments every 8 hours.
The doctors wanted to make sure everything was going to be ok with Madi, so she had to stay a third night. Last night was the best night out of the three nights, but she still was up a lot with pain. We have been putting hot compresses on all of her bruises which feels good to her.
She got discharged in the afternoon. She sat in the wheelchair in her room waiting to go home for two hours. Every time that she has to stay at the hospital, it gets harder and harder to deal with for all of us. It feels good to be at home, but it feels like I haven't slept in years, so I am unpacking and hopefully going to sleep as soon as she falls asleep.
Thanks for all the prayers. I know that it could have been a lot worse than what it really was without all the prayers. LET'S PRAY THAT MADI'S NEW LINE WORKS TOMORROW AT MD ANDERSON AND THAT HER PAIN GOES AWAY SOON!

Thursday, January 4, 2007 5:11 PM CST

I think that this is my third update for today.
I just got the telephone call that Madi has to be at the hospital at 10:30am tomorrow for her surgery that should take place at 12:30pm. I am really nervous about going through this again since last time was such a terrible experience!
A different surgeon will be taking her old line out and then putting the new line in. But this time we have a new Heavenly Angel watching over Madi and that gives me great comfort.
Please keep the Averett family in your prayers. The next few days will be extremely difficult for them to endure.
Of course keep Madi in your prayers so everything will be so much better this time around and pray that she won't be in too much pain like she was last time. And if it isn't too much to ask, pray that I can make it to Harriet's Rosary tomorrow night! THANK YOU, THANK YOU, THANK YOU!

Thursday, January 4, 2007 2:00 PM CST

Funeral Arrangements for Harriet Averett:

Visitations at Sacred Heart on Friday 5-8 pm
Rosary at 7 pm

Funeral at Sacred Heart on Saturday at 11 am

Donations may be made to Crosby Fair and Rodeo Scholarship Fund in memory of Harriet Averett
P.O. Box 1546
Crosby, Tx. 77532

Thursday, January 4, 2007 11:34 AM CST

Harriett passed away last night around 9:45p.m.
The family is still making arrangements.
Please keep her family in your prayers.

Since TCH put Madi's line in, MD Anderson won't touch it, so we are waiting for TCH to tell us when Madi can have surgery. Please pray that she can eat something and that her coughing will stop.

Tuesday, January 2, 2007 7:33 PM CST

We haven't been home too long from all the hospitals today.
Madi ate for the first time in three days today. She only ate a few bites of chicken and a few fries from Burger King. She drank all her milk though.
Yesterday she drank some Carnation Milk. She then threw all that up and it seemed like a gallon more. She has been running a low grade fever and she has a dry cough. She sometimes spits up clear mucus.
Today was extremely exausting day for all of us, especially for Madi.
Madi's line wouldn't work at MD Anderson, so she had to get poked to do her blood work. We then went to TCH to unclog her line with altaplace. We then went back to MDA for photopheresis. After a few hours, Madi's line started clotting. The nurse was able to pull the huge clot out of her line. But then the line wouldn't work anymore.
MDA's special team that works with line problems was called in. They moved Madi's line around, which caused her intense pain. She screamed and cried hysterically. Even now when she doesn't touch it, she says that it stings under her skin. After reviewing the x-rays with them, we have decided that she has to have this line removed and another new line put in. Of course we have asked MDA to put this line in. We don't know when she will have surgery yet. We think that it will be on Thursday, but they should confirm the date and time with us tomorrow. Madi wasn't able to get the photopheresis done at all today.
Harriet's breathing is becoming more shallow. She also started running fever. Please keep both Madi and Harriet in your constant prayers.

Sunday, December 31, 2006 5:00 PM CST

Harriet was moved yesterday morning to Hospice Care on 146 in Baytown. Her neurologist from Houston checks on her daily. I am still praying for a miracle, but I know that we have to accept God's Will at all times, whatever it may be.
Madi still feels extremely yucky. She has a cough and doesn't want to eat, so the acid builds up in her tummy causing it to be upset. She thinks that she has to vomit all the time.
I have a new person to add to our prayer list. One of my best friend's father-in-law was just diagnosed with Chronic Leukemia. So please keep the Zucha Family in your prayers as well.

Friday, December 29, 2006 7:43 PM CST

The doctors took Harriet off life support last night. She is still holding on. I am still praying for a miracle even though there is no brain activity.
Last night was one of the worst nights that Madi has had in several months. We have been trying to get her off the quarter of a pill of methadone that she has been on for so long now. The doctors wanted us to try 5mg. of Ambien to help her sleep since she has so many sleepless nights. The Ambien works with probably 99% of people, but with Madi it was the total opposite. She acted just like she did when she had PRES syndrome or when she gets drugs that she is allergic to.
She had an adverse reaction to the sleeping pill. First she started getting dizzy. Then she started screaming and crying hysterically. Madi's eyes were so dialated. She was screaming for me and Mike and we were right in front of her. She couldn't see us. She started talking about dying and going to Heaven again. This went on for about six hours straight. We called the doctor on call at the hospital and she told us to give Madi Benadryl. So this eventually helped. Mike and I were so drained, exausted and scared out of our minds once again.
Madi didn't feel much better today either. She has been in an irritated and uncomfortable mood, crying off and on complaining about feeling yucky all over. It didn't help being stuck in a hospital bed for over six hours not being able to get out of bed. Madi's central line wouldn't work at all again this morning. So the MDA special team had to put Altaplase in both of her lines again and let it sit for a while. Madi wasn't able to sleep even with her Benadryl, Hydrocortozone, and Tylenol premedications. It only seemed to irritate her more. The photopheresis always makes her feel really sick so far. Hopefully things will only get better.
PLEASE KEEP THE PRAYERS COMING!!!!

Thursday, December 28, 2006 4:50 PM CST

My main reason for updating is to ask everyone to pray for the Averrett Family. They have some really hard decisions to make about Harriett. As far as I know, they plan to take her off life support tonight around 9:00p.m. Of course things could change, but I just wanted everyone to know what was going on. There have been several people that we haven't been able to get a hold of on our phone tree at work.
I will now update you all about Madi. All our problems today seem so small compared to what the Averrett's are dealing with. But it was a really rough day again for Madi. It was only a nine hour day for us at the hospitals. We had major problems with both hospitals today which should have been avoided. We first went to MDA so they could process Madi's blood work. Every week Madi has to do blood work there because every time that she has photopheresis done, she has to have two blood transfussions for the pheresis. So we then went to TCH because radiology wanted Madi to get the long Altaplase infusion. Due to lack of space, Madi got her infusion in an MRI holding room. While Madi was getting her infusion, we got a call from MD Anderson saying that Madi couldn't get photopheresis done today because they didn't do the correct blood work this morning. They still wanted us to go back and do the blood work again because they still need it so Madi could get her treatment tomorrow.
Meanwhile Madi finished her infusion at TCH. No one would come and disconnect her from the pump. I had to chase down an MRI nurse to page someone from radiology two times. Madi waited almost an hour after her infusion was complete to get disconnected. These are the kind of reasons that lines don't work because they don't get flushed immediately and properly. The MRI nurse was told to tell us just to go to the 8th floor and get someone from BMT to handle it. (Like they aren't busy enough on the 8th floor with us coming up without an appointment) Mike and I just told the MRI nurse to bring us some alcohol, saline, and heparin and we would do it ourselves. So we did.
It seems as though everything that can go wrong, does go wrong here lately. We used to think that paying for parking at one hospital was bad, but two hospitals, and then having to go back and forth to the same hospitals twice in the same day! But paying $30.00 a day is nothing compared to other peoples problems. It is just so hard for Madi getting in and out of the wheelchair at every hospital. She still feels weak and nauseated. She hates wearing her mask, but she must.
I will update tomorrow if there is any change with Harriett. I am still in shock about her.

Wednesday, December 27, 2006 8:25 PM CST

Mike had the day off today, so my mom went with me to the hospital. We only made it to Tx. Children's Hospital. Madi got her same antibiotics through her central line again today. The nurse couldn't get blood out for Madi's cbc, so he had to put medicine in both lines to make them work. We had to cancel photopheresis today since her line wouldn't work. Madi also got her monthly IVIG today.
When she finished her infusions, she had to go to radiology and have her line evaluated by Dr. Sidel. The last time that Madi went to this specific room was when she had her feeding tube put in. She immediately remembered that room. Madi has been so unhappy and uncomfortable for the last few days. She cries so much lately.
We could see where her line would clot when he infused something into Madi's line. Madi has to get a 3 or 4 hour infusion in radiology in the morning to help her line work. If this doesn't work, she will have to go back into surgery and have a new line put in again. SO PLEASE PRAY THAT THIS INFUSION WILL BE THE ANSWER TO OUR PROBLEM.
We have to go to MD Anderson first in the morning to do blood work, and then TCH and then back to MDA for photopheresis tomorrow.
PLEASE KEEP HARRIETT AND MADI IN YOUR PRAYERS. THEY SO DESPERATELY NEED CONSTANT PRAYERS.

Tuesday, December 26, 2006 8:35 PM CST

We had a wonderful Christmas even though Madi ran fever of 100.8 for the last three days. Madi's favorite present from Santa was a huge horse named Butterscotch.
Mike and I took Madi into TCH at 8:00a.m. We have been avoiding the ER. Clinic was running on a skeleton crew today, but they still took good care of Madi. We were trying to find out the source of her fever.
Madi's dressing on her central line was saturated with blood, so the nurse changed it. The doctor thought that the blood was coming from the three places where her stitches are located. Other than that, it looked good.
Madi got some strong IV antibiotics through her central line. She will get more tomorrow morning before she goes to MD Anderson for her photopheresis.
Madi's line was still very slow to get blood from to do blood work today. I pray that her blood will flow better tomorrow.
The ultrasound, that was done last Thursday on Madi's leg, didn't show any signs of a blood clot. It still hurts her to walk though. She isn't eating much either.
Now an update on the ER kids from the other night. Both are fine.
A friend that I work with really needs some massive prayers right now. Harriett Averett has been dealing with a serious fungus infection during the last year. She had major back surgery as a result from the fungus. She had been doing extremely well recooperating. A few days before Christmas she got to go home from the hospital. She soon took a turn for the worse and is now in critical care in a coma. I don't know all the specifics, but I do know that she has several blood clots in her lungs and leg. So please keep her in your prayers too.

Saturday, December 23, 2006 10:10 PM CST

I just typed almost an hour update, and it all just vanished before I could hit the update button! So this time, it will have to be the short version.
Thursday was a 13 hour day at both hospitals for us. Both of Madi's lines wouldn't work at all Thursday morning.
Madi's legs and ankles have been causing her intense pain. She had an ultrasound of her left leg. We don't know the results yet. She often cries when she walks. She hates being on lasix!!!
Madi had a lot of little problems when she was getting her photopheresis done on Thursday. The nurses had problems getting her blood flow out and then back in. The machine was constantly beeping and stopping.
There are so many others that need prayers too. Please keep all the families in your prayers that have lost loved ones. Pray for all those who are sick, especially at the emergency rooms tonight. Daniel, my nephew, had to have a CAT scan of the brain done tonight. My best friend's daughter, Calli, broke her arm this evening.
I WISH THAT EVERYONE HAS A BLESSED CHRISTMAS!

Wednesday, December 20, 2006 3:30 PM CST

I feel like the Energizer Bunny this week! Whew, where do I start?
Madi is getting use to her new line more and more everyday. She is still sleeping in the recliner at night though. The tv stays on because she can't get comfortable, so she watches a lot of tv during the night.
On Monday Mike and I took Madi to TCH BMT clinic. Madi's new line was not working properly, which is surprising because her new line is a 10 French instead of the 7 French that she use to have before. We could not get any blood to flow through her one line. We then went to M.D. Anderson, assuming that she would start her photopheresis. She only could do blood work since they have to cross-type Madi since she will be needing a blood transfusion every time that she goes for apheresis. They were also concerned about Madi's one line not working properly. So they said to bring her back on Tuesday.
Mike took Madi to M.D. Anderson Tuesday morning. They then sent them back to TCH to see if they could get Madi's line working. They then went back to Anderson again. I flew up to the hospital when I got off of work on Tuesday.
Madi was able to get her photopheresis done for the first time. It was very scary to watch, but yet it was very exciting at the same time. We had a wonderful nurse, who answered our hundred questions with enthusiasm. The machine was interesting to watch how it separated all of Madi's white blood cells, red blood cells, and plasma. When the machine separated all the blood cells, everything was returned back to Madi except for her white blood cells. The nurse, Joe, then added UVADEX to her white blood cells and then it moved through a light panel so the UVA light could start cooking Madi's white blood cells. Madi's heart hurt a lot and she often felt dizzy and weak. The nurse constantly monitored her vital signs. He was constantly adjusting the pumps and machines. Madi's flow started out good but then went very slowly. Madi has to wear wrap-around sunglasses that provide UVA light protection since she will be very sensative after her treatment.
After she finished, she then had to go and get an x-ray of her line. We finally got home after 9:00p.m.
We have a full day tomorrow at TCH and M.D. Anderson. Everyone has concluded that there was not enough Heparin put in Madi's line when she had her new line put in last Thursday at TCH. So M.D. Anderson wants TCH to put a drug in Madi's line to unclog it. Madi will get her monthly IVIG infusion and Patamadine breathing treatment in the morning, and then photopheresis in the afternoon.
I am so glad that we got out of school early today!
I still have so much Christmas shopping to do!
JESUS IS THE REASON FOR THE SEASON!

Saturday, December 16, 2006 7:09 PM CST

Today is Madi's 1st birthday since she had her transplant!
At 8:00a.m. we went to Star Cafe to eat breakfast. We then went and fed the ducks at the Newport fountains. Later we sang Happy Birthday to Madi as she blew out a candle on her cluster of "Build A Bear" cupcakes and opened a few presents.
Madi is still very sore where her new line is now. All her old lines were always on her left side close to her heart, but her new line is much larger and it is on her right side. She cried the first few days because she thought that she wouldn't be able to write at all with her right hand. Things are slowly getting better for her. I had her making some art Christmas presents today. She is still taking her pain medication, but we are trying to spread the hours out a little more since she only has a couple of pain pills left.
Madi has been sleeping in the recliner on one end of the sectional couch, while I sleep on the other end of the couch. She says it hurts too much to get in bed. She complains about not being able to breath as well. So she manages to sleep in the recliner. We have to keep the tv on all night long on the Disney Channel. It helps her relax since she is constantly waking up and can't sleep. She still gets up a lot and goes to the bathroom. She is so mad that she still has to take Lasix daily. The echo showed that she still has all the fluid in the same places. Sometimes the GVHD is the cause for the fluid.
On Monday we have an early morning appointment at TCH and then Madi's photopheresis should start at one o'clock in the afternoon at MD Anderson. We are all anxious to get on with the show. The doctors already told us that we would not see results for at least three weeks, if not longer.
I WANT TO THANK EVERYONE FOR ALL THE LOVE AND SUPPORT AND PRAYERS THAT EACH ONE OF YOU HAS GIVEN TO ALL OF US DURING THE LAST YEAR. WE COULD NOT HAVE DONE IT WITHOUT EACH OF YOU, I TRULY MEAN THAT. HOPEFULLY, I CAN MEET ALL OF OUR NEW FRIENDS ONE DAY IN PERSON, AND HUG ALL OF OUR FRIENDS (OLD AND NEW) TOO!

Thursday, December 14, 2006 5:41 PM CST

We were on our way to clinic at 8:30a.m. when Mike was still trying to find out what time Madi's surgery time was going to be today. When we were almost at clinic, we turned around and was told that we were late for surgery. We have been trying to find when Madi's surgery was going to be for three days now. We had lots of problems before surgery because no one knew what kind of line Madi was going to have put in, even the surgeon was scratching his head (we know him very well too). They were not familar at all with all of Madi's personal history, like all of her drug allergies. Madi's line wouldn't work, so we couldn't get her blood before surgery to do her blood work for the day. Anyway, after all the delays today, Madi was in recovery about three hours because we had to wait and talk to the surgeon again on how to maintain Madi's new line. She was of course in a lot of pain. Madi was crying in recovery telling me that she DID NOT WANT TO BE A DOCTOR ANYMORE WHEN SHE GROWS UP! When I asked her why, she told me because they have to hurt kids too much!
We were back in Crosby by 4:00p.m. Madi is taking her Tylenol with Codeine every few hours for the pain. I promised Madi that this would be a quick update since she is waiting for me to wash her hair again. She had about a pint of blood all dried up in the back of her hair. I washed her hair already, but she is telling me that she still smells blood.
Thanks for the prayers!!!

Wednesday, December 13, 2006 7:54 PM CST

It is almost Madi's one year birthday/anniversary since she had her transplant on Dec. 16th, 2005. She got all her chemos on Dec. 8th-11th. Dec. 12-15th she rode in the ambulance twice a day to get total body radiation at MD Anderson. December 16th will be her day 365 since she had her transplant. Last year Mike was so sick with his MS and Shingles that he didn't even get to see Madi through day -8 through day 0. Our anniversary was on Dec. 9th, so it was strange not to see Mike either. Mike did get to see Madi on her transplant day.
This year on our 17th anniversary, after Austin and I delivered food and toys to the needy, we bought Madi a minature weenie puppy dog. We use to have a weenie dog a few years ago. When Madi was in the hospital in 2003, Peanut had to go live with Maw-maw and Paw-paw since we lived pretty much at Texas Children's Hospital then. Uncle Randy and Aunt Laura live next door, so Peanut loved hanging out with Biscuit. To make a long story short, some coyotes killed Peanut. Anyway, we have Peanut II now. He really helps Madi take her mind off of her pain as much as possible. The last 10 days have been really difficult for Madi. The steroid (Megestrol Acetate) that she was given for her appetite, has been the biggest problem for her. It puts her right back on that emotional rollercoaster ride. She has been crying non-stop for many hours at a time and she has been talking about wanting to die and go to Heaven again. Last Thursday at clinic, they told Mike to only give her one-half the dose, but we have stopped it competely and she has been eating without the steroid.
Tomorrow will be a big day for Madi. She is getting her larger central line put in some time tomorrow. We have been trying to find out a time, but we haven't been able to talk to anyone that knows what time surgery will be.
Mike, Madi, and Mom had a busy long day today. They left the house this morning at 7:00a.m. for a CAT scan. I think that she finally got scanned around noon. Then they had to wait all afternoon at MD Anderson to see the doctors there. Madi was starving since she had to fast for the scan. She did very well drinking all the contrast that she hates so much.
They finally got home after 6:00p.m. Why is everything always so delayed at times? Mike is totally exhausted.
I know everyone is praying for Madi, but so many others need prayers too. I have so many colleagues whose families need lots of prayers too.
Please keep all the families in your prayers that have lost loved ones, especially during the last week. One of my dad's best friends, Mr. Matthews, past away from cancer last week. And a beautiful teenager, Chelsey Campbell, lost her battle with cancer just a few days ago.
Thanks again for all the love and prayers!

Monday, December 11, 2006 11:10 AM CST

Mike took Madi last Thursday to clinic. She is off her Prednisone, but it will still take a long time for all her swelling to go away in her face. She is also off her anti-fungal infusions, but she is now taking an oral pill twice a day that is an anti-fungal. Madi has been taking a new medicine twice a day to increase her appetite. She has been feeling so depressed again. She cries often. Night time is the worse. She can't relax and go to sleep. She cries while we rub her legs and back. She was crying this morning when I left home, and I just called Mike and Madi at clinic, and she is crying again. Hopefully they can adjust her medicine that is causing her so much anguish.
I will update soon when I have more time. (This is my conference time at school)

Monday, December 4, 2006 7:46 PM CST

We were at Texas Children's Hospital all morning and then we were at MD Anderson all afternoon. We don't know the results from her echo yet.
Madi has cronic Graft Vs. Host Disease. We were very impressed with GVH and skin specialists at the bmt unit at MD Anderson. Madi will be treated there with photopheresis. She will first need to have a larger central line put in for her treatment. This will be the worst thing for Madi. We all agreed that it would be best for TCH to take her old line out and then put a larger line in.
When her new line is in, she will have to go to MD Anderson for probably six months for her treatment. Madi will have to go in for photopheresis several days a week. Each visit will last at least three hours.
Photopheresis is a process that separates out white blood cells from the rest of your blood and exposes them to ultraviolet light after adding a drug, Uvadex. When exposed to ultraviolet A light, the drug becomes activated, which then destroys diseased white blood cells.
One theory on how it works is that when the treated white cells are returned to the body, the immune system senses a difference and the body works to eliminate the bad cells.
We got to tour the photopheresis area so Madi would know more of what was going to happen.
It is was depressing seeing so many adults needing treatment at MD Anderson. Everyone's eyes were glued to Madi in her wheelchair. She was the only kid that we saw at the hospital. Many elderly people approached me in the waiting room and asked me Madi's name and told me that they would pray for.
Please pray for all those seeking medical attention.
My sister has to have a hysterectomy tomorrow.
We don't know how soon Madi will get to have surgery yet. The doctors want her to have an ultrasound and a CAT scan done very soon too. I will update when I get some news.

Sunday, December 3, 2006 8:58 AM CST

Just a quick note before church. Mike took Madi to clinic on Thursday. Since Thursday she has been taking her steroid one day and then skipping the next day off and on. Madi's appetite has decreased by 75%. She says that her tummy hurts and she feels like she is going to throw-up.
I am taking the day off tomorrow and going with Mike and Madi to clinic at 8:30a.m. for blood work. She then has an echo of her heart at 11:00a.m. As soon as we finish at Texas Children's Hospital, we have to rush to MD Anderson. The bone marrow transplant clinic at MD Anderson will be treating Madi for sure, we just don't know the type of treatment yet.
Please keep Wyatt Baca's family in your prayers. He just celebrated his 2nd birthday yesterday. Wyatt was just diagnosed with diabetes. I teach with his mom at Crosby Kindergarten. They live in Mont Belvieu.

Tuesday, November 28, 2006 11:12 AM CST

When Madi called me yesterday at my conference time, she was kind of mad because her central line wouldn't work, so she had to get poked to do all of her blood work for clinic. She also had a mouth biopsy done too.
Today when she called me at my conference time, she was sad because she just got finished getting stitches!
Mike and my mom took Madi to the skin specialist at Texas Children's Hospital at 9:00a.m. I debated about going with them this morning. It was only supposed to have been a consultation, so I went to work. Dr. Bree said that they needed to do a biopsy to make sure what was really going on.
Madi was really brave, just like always. I think she cried when they gave her the big shot in her upper leg, which was to help numb her leg for the biopsy. She has a few stitches. The doctor says that it looks like Graft Vs. Host Disease to her. She didn't want to rush into any type of treatment until she gets the biopsy results, which might take a couple of weeks still.
THANKS FOR ALL THE CONCERN, PLEASE KEEP PRAYING FOR MADI!

Monday, November 27, 2006 11:37 AM CST

Madi's MRI shows that the Graft Vs. Host Disease is returning again. She has an evaluation tomorrow to see if she is a canidate for an ultraviolet light therapy. If she can't do this, she will have to go to MD Anderson for treatment.

Thursday, November 23, 2006 5:51 PM CST

HAPPY THANKSGIVING!
Madi's MRI is tomorrow at 2:45p.m.
She is sad because she has to fast since she has to be sedated for the MRI.
We probably won't get the results until she goes back to clinic on Monday. I will let ya'll know the results as soon as we find something out.

Monday, November 20, 2006 6:21 PM CST

Madi and I were at Texas Children's Hospital all day long today. I haven't taken Madi to clinic since August. It was nice seeing old friends, but it is always hard to hear about other kids passing away.
She got her monthly Pentamadine breathing treatment and then she got her monthly IVIG infusion. Throughout the day the doctors came in and out examining Madi.
It seems that Madi has Scleroderma. Scleroderma is the hardening of the skin disease. The doctors want an MRI done ASAP to find out how bad it is in her bones, muscles, fat, etc... Scleroderma could be caused from all her chemo and radiation.
Transplant doctors are consulting Dr. Levi (who happens to be Weston's EB doctor). For those of you who do not know Weston Zucha, he a 6th grader in Crosby. His mom teaches with me at the kindergarten. Weston's dad is a policeman. Weston was born with a terrible skin disease which is called EB for short. Weston has to endure so much pain everyday of his life. He has to wear bandages like he is a burned victim. His bandages have to be changed everyday, which is very painful for him. He can only eat soft foods. Weston has so many restrictions from other children, but you would never know it talking to Weston or his mom or dad. Please add Weston to your prayer list.
But getting back on the subject of Dr. Levi, he will decide if Madi is a canidate for recieving treatment with ultraviolet light. I pray that it could be this simple. Madi may also have to have some type of pheresis done where they take Madi's blood out, filter it, and then put it directly back into her body again. We will find out more next week.
The good news is that Madi gets to decrease her Prednisone by 5mg. so she will only take 10mg. daily. We are having to increase her Cellcept though, so she will take 1000mg. daily now. All the other meds are staying the same.
HAPPY THANKSGIVING TO EVERYONE!!!
I will update next week. Thanks for all the love and prayers.

Tuesday, November 14, 2006 7:11 PM CST

Madi had a wonderful weekend because she got to go to her best friend's 8th birthday party in Pearland. Thank you Savannah for making Madi so very happy! Madi got to cook a lot of yummy things. Madi enjoyed decorating her own minature birthday cake at her first station. She then rotated to the next station where she got to dip various items into the hot melting chocolate fountain. (Madi loved the pretzels and marshmallows the best). At the last station, Madi got to measure and pour ingredients for chocolate-chip cookies into a glass jar. (The teacher in me really loved this math activity).
Madi had so much fun just watching Savannah open her birthday presents. And I had so much fun just watching Madi enjoying herself with normal little girls her own age. When I say "normal" I mean typical little girls that are not bald and suffering from cancer or trying to recooperate from a bone marrow transplant. It seems that all the kids that Madi has bonded with at the hospital over the last several years, have all died. I still talk to all of their moms often. We are close like sisters. I got a telephone call last night from Peyton's mom. She often calls to check on Madi, but she also calls when she is down and needs a pep talk, like so many others do as well. Please remember to pray for all the families of those young and old who have lost loved ones and especially for all those who are suffering and dying now. The holidays are always difficult to get through, especially when you have lost a child.
Moving on to another subject, Mike took Madi to clinic yesterday, which was Monday. She seemed to be doing better. Madi's potassium and calcium levels are a lot lower, so we are trying to get those levels higher.
Mike went to his neurologist today for his pain management. Dr. Carter told Mike to start taking Alieve for his arthritis, so hopefully that will help.
Austin and I are looking forward to being out all next week for the Thanksgiving Holidays. Madi is so happy that I can take her to clinic on Monday to get her monthly patamadine breathing treatment and her monthly IVIG infusion.
I HOPE EVERYONE HAS A THANKFUL THANKSGIVING AND CAN RELAX FROM THE BUSY WORLD THAT WE ALL LIVE IN!
Please remember to pray for all those undergoing medical treatment.
Please keep the Turner family in your prayers as well. Michelle (52) died on Friday from cancer. Larry, her husband, died almost two years ago from cancer. They lived four houses down from us in the neighborhood.
I will always cherish going to their house a few years ago for the neighborhood watch block party! They were the sweetest people in the world!

Thursday, November 9, 2006 6:22 PM CST

Mike took Madi to the bone marrow transplant clinic this morning. One of Madi's biggest complaints has been about pain in her hips. The doctors were very concerned about her hips, so she had an x-ray and an ultrasound done of both hips. The results showed that everything looks normal. (Lots of times steroids can cause bones to thin).
Madi's growth plates seem normal in her hips too. If she keeps complaining, she will have to have an MRI in several weeks.
Madi's liver counts are always elevated. Today her AST went down to 163 from 202. Madi's ALT went down to 361 from 504. So things are getting much better with her liver.
Madi weighed 60 pounds today, yes 60 pounds! I carry her every day when it hurts her too much to walk. I now know why I am hurting daily too! I am so glad she is gaining weight though. I can remember when she only weighed 47 pounds a couple of months ago.
I have sat down several times at the computer to update, but I have had to jump up to get Madi several snacks, like chicken, grapes, ice-cream, and even to cook her more chicken! I had to go and get her new bandages for her thumbs and fingers. Madi's fingernails are coming off. The complete nails come off, so we put bandages on top of them until a new nail grows back. This has been going on for about five weeks or so. Madi just has so many little problems constantly. She says she feels yucky all over. She constantly rates her pain level on the pain scale from 1-10 and informs us of the number constantly. On a bad day, she will tell me on a scale of 1 to 10, I'm 100!!! We still give her a small amount of methadone every day.
The doctors told us to give her 200mg. of Ibuprofen every eight hours for the next 48 hours. They also decreased her Prednisone by 5mg. today. So she is only taking 15mg. of steroids now. She still takes 750mg. of Cellcept daily. She takes 250mg. of Levaquin. She still takes lots of potassium pills because she is still on Lasix. We give her Cancidas infusions daily through her central line to prevent fungus from growing. (Steroids cause fungus to grow, especially when you don't have much of an immune system).
I want to thank everyone for coming to Madi's rescue once again with all the prayers. So much weight is lifted off my shoulders when I can request my prayer warriors for a mission!

Wednesday, November 8, 2006 7:39 AM CST

Just another quick update.
Madi needs so many prayers so she can feel better. She has been feeling worse than her "normal yuckyness."
Last night she told me that she is ready to die and go to Heaven. I told her that it wasn't time yet and that I would miss her too much to let her go now. She said I want you and dad and Austin to go now with me to Heaven.
I know that everyone's prayers will help get Madi through her depression.

Monday, November 6, 2006 7:40 AM CST

Just a super quick update.
Madi has had a rough Sunday and Monday. Madi's chest hurts when she breathes. She feels terrible. She looks like the fluid is building up more in her face too. I doubled her lasix at 6:00a.m. She had a good doctor's visit last Thursday at clinic.

Wednesday, October 25, 2006 6:59 AM CDT

We have been staying busy as usual. Everyone seems to be doing fine at home. Austin showed his pig last Thursday at Harris County. He got 4th in his class, but they only take the top three to auction.
The doctors decreased Madi's steroids by 5 mg. again on this past Monday. So she is feeling really yucky in the afternoons and at night. She often cries. She goes back for a clinic visit tomorrow. We have been keeping Madi at home more again since she doesn't have much of an immune system still.
Austin had his last away football game last night in Huffman. Crosby won 19-13. Austin's last football game will be in Crosby on Halloween night at 6:00p.m. This kind of interfers with Madi's fun for the night. We will still make it special for her.
This is the time last year when Madi became so sick and we found out that she was probably relapsing.
Madi has been in the hospital every month for the last 11 months, so DEAR JESUS, PLEASE LET OCTOBER BE THE FIRST MONTH THAT MADI DOESN'T HAVE TO STAY IN THE HOSPITAL AND LET HER CONTINUE TO HEAL AND GROW STRONGER EACH AND EVERY DAY! It is almost like I am holding my breath all of the time with Madi. I have to remind myself to exhale. When I am home from work, she just wants my undivided attention, and she usually gets it too, so please forgive me for not updating sooner. No news, is always good news, when it comes to my updates.
Please keep all the families in your prayers who have lost loved ones, and especially pray for all those undergoing medical attention now.

Tuesday, October 17, 2006 11:07 AM CDT

I have been trying really hard to update, but something just always seems to pop up. Austin was busy on-line over the weekend doing a history project. Yesterday morning I dropped Austin off in the rain at 6:30a.m. I came straight to school and wrote a very detailed update for over 45 minutes. Just as I went to hit the "enter journal update" button, the electricity went out around 7:20a.m.
So I am going to give a quick update since this is my conference time. Last week Madi didn't feel well at all. Last Monday the doctor decreased her Prednisone by 5 mg. Since Madi is so sensitive to everything, her body was freaking out about the change of steroids. We had to start giving her Methadone again. She would just lay around with her prayer cloth of her head watching tv. She didn't feel like doing any school work at all. She told me that she wasn't hungry, but she knew that she had to keep eating.
Austin had a make-up football game in the rain last Thursday night at Barbers Hill. The game was called off during the first quarter around 8:00p.m. due to all the lightning. Mike took Madi back into clinic Friday morning because she looked so bad. Madi's face swelled up even more than it already was. Steroids already give Madi such a fat, chipmunk cheeks anyway. The doctors asured Mike that it was only the steroids.
To get Madi out of her depression, I decided that she was just going to start getting out of the house a little. Saturday morning we went to Madi's favorite breakfast restaurant, Star Cafe. She loves their pancakes and milk.
At 5:00p.m. Madi was at the Crosby High School to be in the play, Beauty and the Beast. She was a village kid when they all sang Bonjour. On Sunday she went to a church meeting for 90 minutes about First Holy Communion.
Madi loved seeing everyone!! She misses people and kid watching. She wears her mask as much as she can when she is around others. She is extremely cautious about germs.
Madi had such a great weekend that she didn't need any pain medicine at all on Saturday or Sunday.
Monday afternoon was rough again for Madi. Mike didn't take her to clinic due to the flood. She is there now, so I will be expecting an update from them around lunch time.
Please pray that the Lord will shelter Madi from all the germs floating around and especially pray for the Phillips family (Jessica, Chaney and Taylor). Little Brookie had a beautiful service in Lake Jackson.

Thursday, October 5, 2006 7:46 AM CDT

Just a quick update.
PLEASE KEEP THE FAMILIES OF TYLER MCMAHAN AND BROOKE PHILLIPS IN YOUR PRAYERS. Tyler was 16 years old and Brooke was only 5 years old. Tyler looked so peaceful and beautiful last night at the funeral home.
Brooke was one of Madi's best friends on the bone marrow floor.
Both girls dealt with cancer so courageously.
(Austin didn't make the auction with his pig)

Sunday, October 1, 2006 6:39 PM CDT

Everyone continues to do well at the Brown's house. Madi had two clinic visits last week. Madi's liver counts are slightly elevated so they are watching them carefully. Madi's echo came back clear. They haven't wheened her off anything in a while. The doctors want to be extremely careful so the Graft Vs. Host Disease doesn't return. She use to weigh 48 pounds. On Friday she weighed 51 pounds! She eats all day long!
We had a nice day to day. The four of us went to the Czech Fest at the fairgrounds for about 45 minutes. Madi really enjoyed seeing many of her friends! This was the first year that I didn't have to work at the Czech Fest and Mike actually got to go. He had been working the last few years.
Austin won his football game in New Caney Tuesday night. I had a parent night at the kindergarten, so I couldn't go to the game.
Mike is taking Austin's pig to Dallas tomorrow for the State Fair. Mike is then driving back on Tuesday to get Austin. They will leave after Austin's football game. His pig show is on Wednesday. If he doesn't make the sale, they will come home on Thursday. If he makes the sale, the auction will be on Friday.
I will let you all know how the pig show goes later on in the week.
Please keep Tyler M. in your prayers. She is at home with Hospice helping out.

Friday, September 22, 2006 7:13 AM CDT

Madi had an echo of her heart yesterday. We don't know the results yet. She is eating a lot and is doing great!
Mike is doing his experimental treatment for his MS. He gives himself a shot in the stomach once a day.
Austin won his football game Tuesday night.
We are having a garage sale this Saturday, 9-23, at Crosby Kindergarten in the gym. All proceeds will go to help with the cost of cancer treatment for Mrs. Duggan's husband. The Duggans have to fly to LA, California every few weeks for experimental treatment since no hospital offers it in Texas. Mrs. Duggan is our kindergarten school counselor for those of you who don't know her.
Please keep praying for all those who are sick and suffering, especially Tyler McMahon.

Saturday, September 16, 2006 10:23 AM CDT

Our family is doing extremely well! Since Madi is eating real food, her counts are higher than they have ever been when she was on TPN and even with her feeding tube. Madi's liver functions are lower now, which is good. All her medications are helping with the Graft Vs. Host Disease. She still is on lasix twice a day. We still give her two infusions daily through her central line. It is so wonderful for Madi to be totally free from tubes and lines when she is sleeping. I can rest a lot better too, knowing that she can get up on her own and go to the bathroom without assistance if she needs to do so. I still tell her to wake me up so I can help her walk, if she is too sleepy, but half the time I wake up and she is coming back to bed. She tells me that she hates to wake me up. She has always been so sweet and thoughtful through everything.
MY MAIN REASON FOR UPDATING IS TO ASK EVERYONE TO PRAY FOR ALL THOSE WHO ARE SICK AND WHO HAVE DIED, AND ESPECIALLY FOR THOSE WHO HAVE CANCER AND FOR THOSE WHO ARE DYING FROM CANCER.
I would like to not offer my condolences, but congratulations to my Aunt Betty Rucka on the death of her mother, Mrs. Keyes, who was I believe 97 years old. Also to another relative, Cathy Buchta, on the death of her mother-in-law. Both ladies lived very long Christian lives on Earth and now it is time for them to enjoy Heaven!!!

Wednesday, September 13, 2006 7:06 AM CDT

Madi has been eating, so the tube hopefully will never return. She was full of energy over the weekend. Her counts were good on Monday at clinic. On Tuesday afternoon, she started feeling really, really bad.
We gave her some morphine before we went to Austin's football game in Dayton. This was the first time that we had to give her morphine since she came home from the hospital on Friday afternoon. We still give her methadone every night to help with the withdrawals. We give her two one hour infusions everyday. One is an antibiotic and the other one is an anti-fungal infusion. She has had diarrhea a lot. It could be from the antibiotic that we give through her IV.
Mike had doctor appointments on Monday and Tuesday. He will be doing an experimental treatment for his MS. I think that he will give himself shots in his leg everyday to slow down the progression of his MS. I will let you know the specifics when he starts that treatment.
Austin has been doing really well with football. (He is surprising me since this is his first year to play football ever. The last time that he played sports was T-ball in kindergarten. He was in first grade when we found out about his heart condition. Austin has been doing fine since he had his heart ablation).
Anyway, Crosby has lost both of their games, but last night it was really close. The score was 12-6. Austin plays on the first string A team. He is an offensive quick tackler and they also had him playing another position last night. He was excited when they made their first touch-down last night. They got to play on Dayton's new astro-turf, which is beautiful!

Friday, September 8, 2006 5:26 PM CDT

Despite Madi's feeding tube getting clogged and not working and then Mike having a flat tire early this morning, this has turned into a wonderful day, now that the day is almost over. I made it to work on time. About 10:00a.m. Mike called me at work and said that Madi wouldn't be sedated getting the tube out. We had just assumed that she would be put to sleep for the removal of the old tube and that a new tube would be put in. So as soon as I heard that, I was flying to the hospital from work. I was half way to TCH when Mike called and told me not to come because the nurse had taken Madi's old tube out in her room. So I then called work to see if I could come back to work, and they said yes. So I turned around and went back to work. Since Madi was not on the schedule for surgery, they couldn't squeeze her in to replace the tube. Here's the really good news, if Madi can eat, a lot, she won't have to have the feeding tube put back in next week. Madi hasn't eaten in the last 12 days while we have been in the hospital.
The really great news is that Madi got discharged late this afternoon from the hospital.
Madi ate one fish-stick and drank a lot of milk so far. She definitely doesn't want to go through the pain of having a feeding tube again. So we will just work on stretching Madi's tummy out with food.
IT IS SO HEAVENLY TO BE AT HOME!!!!
I am washing Madi's blankets and all our clothes from the hospital now. I guess I better get to the grocery store so Madi can work on eating!!
(We still have to give Madi Levaquin infusions once a day, but that is a piece of cake compared to being on TPN or the feeding tube)
I really feel like Madi's feeding tube problem is a blessing in disguise. I will update on Monday.

Friday, September 8, 2006 7:48 AM CDT

When it rains, it pours.
Madi's feeding tube clogged up at 3:00a.m. so she will probably have to go back into surgery and have another tube put in.
Mike was running late coming up to the hospital this morning because he had a flat tire. I still got to work on time though.
The plan is to get discharged today.

Wednesday, September 6, 2006 5:29 PM CDT

Unfortunately, Madi's Graft Vs. Host Disease has returned once again. I think that we are all in shock, including the doctors. She will go back on high doses of steroids and immunosuppression drugs. She will have to be on anti-fungals as a preventative treatment.
Madi had a CAT scan this afternoon.
Madi's liver functions and EOS% continue to rise. Madi's albumin is still at 2.1 eventhough she is on a constant drip with her feeding tube and 24 hour TPN. She is still on lasix twice a day.

Saturday, September 2, 2006 11:24 AM CDT

What a week it has been! The doctors were not sure what was going on with Madi. We were all afraid that the Graft Vs. Host Disease was returning once again. Madi's liver functions(AST,ALT, Alkaline Phosphatase, and GGT) were at very high levels again, although her Bili has been normal. She still takes two huge pills twice a day for her Bili. Her EOS% were extremely high as well. She had so much fluid built up in her lungs and around her heart.
Madi had three Echos of her heart done this week. (She hates having to take her dressing off on her central line every time. Normally the dressing is changed once a week). The doctors were very concerned about all the fluid in Madi's lungs, so on Thursday a surgeon drained over 22 ounces from her lungs. The cardiologist debated about draining the fluid around her heart, but they thought that it was too risky. (The echo from yesterday showed that draining the fluid out of her lungs, helped to relieve the fluid around her heart).
They also did a liver biopsy to try and figure out what is going on with Madi's liver.
On Friday Madi got scoped both ways. (Of course she was up all Thursday night cleaning out her colon).
On Friday a dentist did a biopsy on her gums and cheeks. (He scraped everything off of her mouth, gums, and cheeks). He also pulled two teeth and capped four or five teeth. (All the radiation, poor nutrition, vomiting, etc... has made a mess of Madi's mouth). They wanted to do a biopsy to see if she has GVHD or a fungus in her mouth again as well.
Madi has been getting morphine almost every two hours for the excruciating pain. Madi's mouth hurts the most. She takes a sip of water about every ten minutes day and night. She is still passing gas from the scopes too.
All the reports are still unofficial, but the early pathology reports are looking like Madi doesn't have GVHD. Praise the Lord! Madi may have a virus instead. So I am really happy about this. We still don't have a lot of information yet. As soon as I find out some news, I will update.
Our lap top died, but Mike was able to bring it back to life!

Wednesday, August 30, 2006 10:25 AM CDT

Madi has been in the hospital since Monday. The doctors are trying to determine exactly what is going on with her. They will have to do biopsies on her lungs, liver, gums, etc...
The modem has been down, so I haven't been able to update sooner.

Monday, August 28, 2006 11:12 AM CDT

Madison's CAT scan last Thursday showed that she has fluid again around her heart. She is on lasix twice a day. She hasn't been feeling well at all. She has been up a lot at night with vomiting.
Right now she is at clinic and since she still feels worse and her blood pressure is high, they are giving her IV fluids. She is going for another x-ray shortly.

Tuesday, August 22, 2006 10:12 PM CDT

Where do I start? I know that it has been a long time.
Mike (42) and Austin(13)celebrated birthdays on August 17th. (The same birthday wasn't easy, but I managed to pull that one off. I was induced at 7:00a.m. on August 17, 1993. Austin came along at 11:55p.m. (My dad's birthday is on August 18th, but Mike wanted Austin on his birthday).
Both Mike and Madi are doing ok. There was some confusion last Thursday with the doctors/nurse practioners on the mg. amount of immune suppression that Madi was taking. They thought that she was on a higher dose. I think that there was a lack of communication with in and out patient staff when Madi was discharged in July. To make a long story short, Madi is only on one 250 mg. (cellcept) pill a day. She still takes medicine for the nausea, pain and her liver. Madi's potassium and sodium are still very low, so she takes pills to help with that too. Madi has been on an liquid anti-fungal medicine, which she hates with a passion.
Madi had an x-ray yesterday of her face. She has a sinus infection, so she is on 21 days of antibiotics. She will have a CAT scan on Thursday. Hopefully this will be better than the last scan.
I usually get to bed around 11:00p.m. and my alarm goes off at 5:00a.m. Austin and I leave the house around 6:10a.m. so I can drop him off for football practice. I go straight to work and get a lot of things accomplished since I try to leave as soon as I can after school.
Madi woke up at 4:30a.m. this morning vomiting. She always wakes up several times during the night to go to the bathroom still. I will be so happy when she can get her feeding tube out! I sleep with her at night and then Mike gets in bed with her when Austin and I leave in the morning.
Forgive me for not updating quite as often. I hate to leave Madi in the bedroom alone when I come to the front room to get on the computer.
Keep the prayers coming you guys, especially for all those who are suffering with cancer as well as all the other sicknesses and diseases in the world. Keep the troops in your prayers too. I could go on all night if I wasn't so sleep deprived!

Saturday, August 12, 2006 10:08 AM CDT

I have been so busy, busy, busy, busy! I wish Mike would take over my job updating Madi's page, but he would only type: bad day or ok day and nobody would know what was really going on.
Like all the staff in Crosby ISD, I have been busy going to workshops, meetings and preparing my classroom for a new group of kids coming in. I have been going to teacher supply stores after school. Madi loves riding in the car with me. My mom stays in the car with Madi, while I run in the stores and get what I need. Madi loves cutting out all of my laminated materials. She is such a good helper. She wants to go to school so badly and Austin doesn't want to go at all.
I know Austin is really bored at home and he is eager to start playing football. He has so much energy that needs to come out at practice at 6:30a.m. We were at the Middle School for about three hours on Thursday night along with about 10,000 other people (it sure did seem like it).
Now it's time for Mike's update. When I just asked Mike about what he wanted me to write, he said, "Mike Brown is doing fine." I told you that he doesn't have much to say on the computer!
He doesn't have to get antibiotic infusions this weekend because someone broke into the cancer clinic a couple of weekends ago, and took all the checks in the office. We got a telephone call from the receptionist saying that we need to keep an eye on our bank account. I get so nervous when I use my debit card!
Getting back to Mike, he has been staying busy taking care of Madison since I am back at work. He schedules all his appointments late in the day when he has to take Madi into TCH. My mom and dad keep Madi when Mike has to go to the doctor.
Mike's biopsy results came back good on his elbow.
The M.S. doctors at UT hope that Mike will qualify for a new trial study using a lymphoma chemo to help slow down the progression of his primary progressive M.S. He has taken this chemo before. There just is not a lot available in the medical world for his type of M.S. and chemo seems to be the new hope for a treatment.
Now for the Madi update. Madison's clinic visits have been very busy this week. She got her IVIG treatment on Monday and her lung treatment on Thursday. Her blood counts have been looking good. I have been praying that Madi can get her feeding tube out soon, but she has been so nauseated. She has had some vomiting yesterday and during the middle of the night. I think that she is having withdrawals from the prednisone and methadone. So please keep her in your prayers as usual.
I will update next week!

Friday, August 4, 2006 8:58 PM CDT

Please forgive me for not updating in a while. I have been extremely busy. It seems like every time I try to sit down to update, the phone rings. Mike is staying so busy as well. He goes to the doctor everyday. Sometimes he even sees three different doctors in the same day.
The doctors didn't like the way Mike's elbow was looking earlier in the week, so the surgeon drained it with a needle. He goes back to the surgeon on Tuesday to get the biopsy results.
Mike's oncologist was concerned with some of his blood work yesterday, so Mike had an echo of his heart. We are pretty sure everything is ok with that.
Madi has not been sleeping well at all this week. She has been complaining about her heart hurting when she gets her infusions at night. Madi's feeding tube has been causing a lot of nausea and discomfort as well. I have been slowing down the rate on the feeding tube in the middle of the night. Some nights we are watching tv at 3:00a.m. to take her mind off the pain.
I was at TCH for eight hours yesterday. Madi's bilirubin is finally where it should be, thanks to the 600 mg. of Ursodiol a day.
Madi got new tape on her face that helps hold her feeding tube in place. This really hurt her, but she tried to hide her pain and fear.
We enjoyed visiting with Chaise and his parents while we waited to get Madi's blood results back.
The doctors wanted to check the placement of Madi's central line and NJ tube since she is having problems at night.
It took us forever to register for this. We were sent down to the third floor to register for the x-rays. The guy at the desk sent us across to the clinical care eighth floor. They then said go back to the west tower and go down to the first floor. The first floor then sent us back to the third floor, where we started at, to register and get stickers. Then we went back to the first floor and had to wait. When Madi finally got to the x-ray table, we then had to wait for a nurse to put contrast in Madi's central line and flush it. The tech was able to put contrast and barrium through Madi's NJ tube. Madi was really scared about this procedure. Her eyes teared up a little. We then had to wait for a doctor to come and check for the placement. We were able to see everything on a tv screen which was very interesting. So Madi was on the x-ray table for over 90 minutes waiting for everyone to come and do his/her part. Everyone was wonderful with Madi though, which was the most important. The doctor told me right away that everything was still in the correct places.
Madi was so tired from all the walking at the hospital, that she fell asleep coming home.
(Madi is so sensitive when fluids are going through her tube. Every night I have to warm up her Peptamin Jr. before Madi primes the tubing for the pump. She is so helpful. She knows how to do everything that Mike and I do. She flushes her lines every night with saline and heparin. Of course I supervise. She knows the names of all her pills and the amount that she has to take everyday and night).
I will be going back to work on Monday. Mike will be taking Madi to clinic on Monday and Thursday. She should be getting her monthly IVIG and a patamadine breathing treatment as well as her lab work done.
I am so excited about going back to work, but I worry about Mike and Madi. I hope the Lord sends extra guardian angels to watch over them both!~

Friday, July 28, 2006 8:48 PM CDT

I am just returning from the wake service for Michael Johnson. For those of you who didn't know Michael, he was a teenager from Crosby who also had a bone marrow transplant. We just saw Michael at the BMT clinic not to long ago. He looked really good to me. Many people had told me tonight how Michael had planned his funeral.
His mom told me that Michael wanted Madi to have one of his stuffed animals. I was glad to see many friends from Texas Children's Hospital at the wake too. I want to give a special thanks to my best friend, Kayla Hall. She always takes care of me and drives me to wakes and funerals. She even went with me to an out-of-state funeral for another friend that had died after a bone marrow transplant a few years ago.
Please keep Michael's family and friends in your prayers!

Mike is still getting antibiotic infusions seven days a week at the Cancer Center at San Jacinto Hospital.
Since it looks as though his arm is swelling up again, the doctor changed his antibiotic today. Hopefully this will take care of the problem.
Madi is getting a Cancidas (anti-fungal) infusion now. We are giving it at home five days a week. This is so much better than the Ampho. Madi goes to TCH on Mondays and Thursdays. We started wheening the steroids to a lower dose now.
She is eating still. We can't take the feeding tube out until her nutrition improves a lot more. She is on feeds for 12-16 hours a day.
Madi's nutrition is so below where it needs to be because she couldn't eat when she had the pancreatitis twice and then they took her TPN away when her liver functions were so high.
I took Austin for a football physical today. He is almost six feet tall and weighs over 200 pounds! (He will be 13 in August). Austin will come in handy helping me take care of his dad!
Austin's muscles are sore from football camp this week!
So far I am the only one in the house not moaning and groaning this week! (I did just take a Tylenol for a headache a few minutes ago)

Tuesday, July 25, 2006 3:12 PM CDT

Mike got out of the hospital late on Monday.
I told the doctor yesterday at TCH that I would do home anti-fungal infusions for Madi. This type of anti-fungal is not as strong as the Ampho. and she doesn't have to have premeds. before her infusions.
They forgot to order it with home health care, so she will get her first dose tonight.
I am sorry that I haven't updated sooner. One of my eyes is infected due to an old contact. I do have an appointment today. I am also going to get Austin's glasses fixed that he broke a couple of months ago.
IT'S GREAT TO HAVE EVERYONE AT HOME!

Saturday, July 22, 2006 9:47 PM CDT

Madi is still feeling yucky. She ate about six bites of chicken today at 3:00p.m. She drank some milk, juice, and water. She ate a few fruit gummies (that have protein) right before she went to sleep. She has not been eating much since her infusion on Thursday.
Mike's last update was good around 4:00p.m. today.
A surgeon came by and told Mike that it doesn't look like he will have to have surgery to drain/cut out his infection. The doctor said that he might get to go home "the early part of next week."

Friday, July 21, 2006 9:41 AM CDT

We were at TCH for about eight hours yesterday. After Madi finished her Ampho infusion, she had counseling about her eating. The ladies were so impressed with all of Madi's stickers for eating on a calendar that we had been charting. I made a motion to start eating more fruits and vegetables, so that is Madi's new goal for the next week. She is not too happy with me though! She still can eat all the chicken that she wants!
After we left the hospital, we went to Maw-maw's and Paw-paw's house so Austin could take care the four pigs. Madi wanted some fresh okra from the garden, so she could get a sticker on her chart. As soon as she finished eating a lot of okra, she threw them all up. (It's the work of the nasty Ampho). I gave her some anti-nausea medicine before she swallowed all of her nightly pills. She seemed ok all throughout the night. (She has to go to the bathroom so often since she is on the feeds at night).
She is still asleep this morning! I guess it's because she had to get up at 7:00a.m. yesterday morning and probably because of the Ampho. I want to leave her on her feeding tube longer today since she might not eat very well since the Ampho is still in her system.
I talked to Mike at 8:00a.m. this morning. He sounded ok. He said that he thinks that his elbow might be coming to a head where his main infection started. The doctors said that they would have to drain it and cut parts of it out if it came to a head. (Of course this would also have to be on Mike's right arm, and he is right handed). I want to thank everyone for all the personal e-mails that they have been sending me about staph infections. They have really been helpful.
When Mike asked one of the doctors yesterday when he could go home, the doctor informed him, that they were just getting started! Eventhough it is hard for us at home not to have Mike around, we know that the hospital is the very best place for Mike, especially when his M.S. is starting to get the best of him. He has been putting on such a good show for so long now.
Madi is not allowed to go visit her dad since she is on so many immunosuppression drugs again. Austin and I will finally get to go see him today. Mike has been on many of the same antibiotics that Madi routinely gets through her IV when she is in the hospital. She thinks that she knows what is going on. She said, "Dad is going to have lots of diarrhea from all those antibiotics!"

Wednesday, July 19, 2006 7:59 PM CDT

Madi is still doing great.
Unfortunately, Madi's daddy is not. He is being admitted to San Jacinto Hospital for a Staph. infection.
Mike started working nights last Friday night. He was suppose to work 12 nights. His elbow has been bothering him for many days now. Mike got in from work at 5:00a.m. on Tuesday morning. About 7:30a.m. he got up and went to the ER in Baytown. His temp. was over 102. They said that he probably had a Staph infection, but it would have to grow. They said that they would treat it as though it was a Staph infection. Today Mike had an appointment with his oncologist. He said that Mike needed to get 12 days of heavy antibiotic infusions. The doctor was debating whether to drain his infection. He told Mike that if he wasn't better by Friday, he would have to be admitted to the hospital for treatment. Mike started feeling worse, so the doctor told him to go to the ER to get admitted. (The doctor told him that he really wanted to admit him today anyway).
If anyone has had a Staph infection like this before, I would like to know what your treatment was like and which hospital you were treated for it. Thanks for all the input and prayers that I know that we are about to receive!

Wednesday, July 19, 2006 7:59 PM CDT

Madi is still doing great.
Unfortunately, Madi's daddy is not. He is being admitted to San Jacinto Hospital for a Staph. infection.
Mike started working nights last Friday night. He was suppose to work 12 nights. His elbow has been bothering him for many days now. Mike got in from work at 5:00a.m. on Tuesday morning. About 7:30a.m. he got up and went to the ER in Baytown. His temp. was over 102. They said that he probably had a Staph infection, but it would have to grow. They said that they would treat it as though it was a Staph infection. Today Mike had an appointment with his oncologist. He said that Mike needed to get 12 days of heavy antibiotic infusions. The doctor was debating whether to drain his infection. He told Mike that if he wasn't better by Friday, he would have to be admitted to the hospital for treatment. Mike started feeling worse, so the doctor told him to go to the ER to get admitted. (The doctor told him that he really wanted to admit him today anyway).
If anyone has had a Staph infection like this before, I would like to know what your treatment was like and which hospital you were treated for it. Thanks for all the input and prayers that I know that we are about to receive!

Monday, July 17, 2006 5:54 PM CDT

I have good news and bad news. Actually, I have great news about Madi. She is eating and drinking like crazy! I only have to run her feeding tube for 12 hours now at night.
The bad news is that the doctors are putting Madi back on "Ampho-terrible." I truly feel in my heart that she doesn't even have a fungus at all. They don't even know. When in doubt, they always slap Madi back on Ampho. We had a choice to give her an anti-fungal infusion at home seven days a week, or come into clinic three days a week for infusions. To make a long story short, we will go to clinic two days a week for Ampho (eventhough we don't want to.)
Ampho has so many terrible side effects. We will just have to pray that her liver can handle it again! Madi is still on high doses of steroids and immunosuppressant drugs. Hopefully, they will start wheening her off some drugs soon.
Thanks for all the "eating prayers" for Madi. I cry tears of joy everyday when I am watching her eat!
Now we need prayers to keep Madi's body free from harm from the Ampho and we need to pray that her Graft Vs. Host Disease never returns. The prayer list always seems endless with Madi. If anyone has any specific prayer request, please feel free to tell us about them. Madi's fan club is huge and does miracles with all the constant prayers.
(Let's pray for Lance and his gallbladder problems)

Friday, July 14, 2006 7:15 PM CDT

Yes, we are out! We came home Wednesday night. We have been at the hospital for appointments yesterday and today. I am glad that we can stay at home this weekend.
Madi's counts are getting better. Today she had her "eating counseling." It went very well. I just got finished cooking her fish sticks and she ate four bites!
(She has a calendar and menu that she made today at clinic. She only has to take four bites of whatever she eats, so she really likes that. She must eat several different things throughout the day. She is on her feeding pump 18 hours a day now. She was so full and nauseated being on the pump for 24 hours a day.
Madi has to be at BMT clinic Monday morning.
MADI IS FEELING SO MUCH BETTER, THANKS TO ALL OF YOU AND YOUR AWESOME PRAYERS!!!

Wednesday, July 12, 2006 11:46 AM CDT

We didn't get to go home on Tuesday like we thought that we would. We should get to go home today. The doctors are still in rounds, so I don't have anything official yet.
Madi has been feeling worse the last few days. I think that it is because they keep increasing her rate on the feeding tube.(She is on the rate of 40 for 24 hours a day).
Yesterday they started adding salt into her Peptamin Jr. formula since her sodium is so low.
Yesterday Madi had her monthly breathing treatment. She also had her first consultation about eating with a doctor. Madi's next appointment will be on this Friday at 2:00p.m.
We will assume that we are going home today. I will update tonight if we don't get to go home.
Thanks for all the love and support!

Monday, July 10, 2006 7:10 PM CDT

The big news for the day is that we might get to go home late tomorrow!
Madi got her monthly IVIG infusion today. It makes her feel horrible.
Madi's counts continue to yo-yo up and down, but the main liver panels are slowly getting better.
Bili conjugated is 4.8 (normal is less than .35)
AST is 556 (normal is 15-40)
ALT is 357 (normal is 10-35)
GGT is 1151 (normal is 13-25)
Alkaline Phosphatase is 1145 (normal is 175-420)
(Some of Madi's lows are: HGB, WBC, RBC, Albumin, and Calcium)

Saturday, July 8, 2006 4:19 PM CDT

I am a great aunt for the first time! My nephew, Steven and his wife, Rachel had baby Jake Saturday morning. I have seen pictures of him and he is so beautiful!
We moved from room 40 to room 44 this morning. Room 40 only had a shower in the bathroom and the entire bathroom floor got wet when the shower was in use. Madi also had to walk further into the bathroom and we would have to unplug all of her cords on her pump. She couldn't see the tv from inside either. (This makes a big difference when you spend so much time in the bathroom at the hospital). We didn't have any shelves in the bathroom either.
I only have to unplug the nurse's call button when Madi needs to go to the bathroom. She took a bath for almost an hour today. I warmed the water up four times for her. A bath really helps her to relax. We still have to be careful so we don't get her feeding tube or her central line wet.
A physical therapist came by and evaluated Madi. She will qualify for P.T. three days a week since she lost so much muscle control. (She has also been in strict isolation in her room only, so she can't walk down the halls).
Austin is keeping Madi laughing. She still feels yucky.
Madi's Bilirubin is now 6.3 (normal range is <.35)
AST is 723 (normal range is 15-40)
ALT is 415 (normal range is 10-35)
Alkaline Phosphatase is 1251 (normal range is 175-420)
LDH is 1236 (normal range is 420-750)
GGT is 1205 (normal range is 13-25)

Thursday, July 6, 2006 8:32 PM CDT

Madison had a much better night and day. The ultrasound of her gallbladder didn't show any stones as the doctors thought might have been the problem. They finally started giving Madi some Peptamen Junior through her feeding tube at 2:00p.m. at a very slow constant drip. This is the first time that she has had anything since Sunday night when we were at home.
Some of Madi's liver counts are up and a few are down. She is feeling better though. She played her DS for a long time while Austin played his too. We even were able to play a game of Uno Attack today. She hasn't been doing anything at all since she came back into the hospital, so I was glad to see her activity level is coming around.
Mike is working nights tonight, so Austin is spending the night with us. Madi has an eating and chewing evaluation early in the morning.
Please keep baby Edwardo's family in your prayers. He past away this morning. He was about 50 days out from his transplant. His mom is a kindergarten teacher down in the valley. He had many complications with his liver and kidneys.

Wednesday, July 5, 2006 3:33 PM CDT

Madi hurts so much. The whites in her eyes are orange-brown. Her urine is dark brown. She has been having really bad nights as well. She is so mad that she has to be on lasix in the morning and at night. She is so exhausted. Madi's Bilirubin conjugated is 16.0 (normal range is <0.35) The doctors just ordered another ultrasound of her gallbladder again.

Monday, July 3, 2006 7:02 PM CDT

The liver biopsy showed that Madi has Graft Vs. Host Disease in her liver. She got admitted to room 40 on the bone marrow transplant eighth floor. She only weighed 47 pounds when we came in this morning.
We haven't been sleeping much at night, so I know that Madi, Mike, and I will be able to sleep much better tonight. The doctors have decided to hold Madi's feeds through her feeding tube tonight, so we won't be awake dealing with all those issues.
Madi's Bilirubin Conjugated was 5.8mg/dl
(normal range is <0.35)
Madi's ALT is 161 (normal range is 10-35)
Madi's LDH is 853 (normal range is 420-750) Alkaline Phosphatase is 1365 (normal range is 175-420)

Saturday, July 1, 2006 8:55 PM CDT

We were at clinic from about 9:00a.m. until 6:60p.m. on Friday. We didn't find out any news about the liver biopsy yet. Madi's BUN was 12. Her Alkaline Phosphatase was 1150. Her LDH 970. Her Bili Conjugated was at 4.9
Madi's EOS% went down to 15.4
Madi got a three hour albumen infusion. She had a ultrasound of her liver, gallbladder, and abdomen. We don't have any results back yet. She then had to get a large volume of potassium through her feeding tube, which causes her a lot of pain when it is used. Madi has always been hyper-sentive. She is doing a little better with the tube, when it is not being used. Madi then had to get more lasix at clinic. We are doing lasix at home as well. It seems as though Madi is super dehydrated or she seems to be drowning in fluid. She still vomits about four times a day. She has to swallow so many more pills now. She only weighed 50 pounds on Friday. She has been around 55 pounds since December. (I know that Madi would have been admitted to the hospital if there were any rooms available).
Madi has respitory homework that she has to do several times during the day. She has to inhale and exhale into a pedicatric volumetric incentive spirometer. This really makes her very tired.
Please say extra prayers for little Brooke too!

Thursday, June 29, 2006 9:45 AM CDT

Yesterday was another one of the longest days of our lives. We left the house Wednesday morning at 6:00a.m. and didn't get home until after 10:00p.m. Madi had an echo of her heart done at 7:30a.m. I haven't heard the official report, but of course we know that she has a lot of fluid building up constantly. After the echo we went to bone marrow transplant clinic. While we were waiting to get Madi's CBC results, she was busy in the bathroom after she took her lasix pill. Madi's EOS cells were only at 35% (on Monday they were up to 50%). This is why her body appears to be having an allergic reaction. This is also why when she tries to eat or drink, all the fluid pushes everything back out of her.
All of Madi's liver functions are still going up though.
We had to be at PACU for pre-surgery at 11:00a.m. She was suppose to be in surgery at 1:00p.m. but just like always, she kept getting bumped back to a later time. The nurse finally came to get Madi on the stretcher at 3:30p.m. We went down to the first floor instead of staying on the third like we normally do. Madi's heart rate was beating about 150 beats per minute before surgery (she is normally around 80 bpm). She always has a lot of anxiety as well before surgery. Mike and I got to be in the room when they put her to sleep. We got to roll with her into recovery afterwards. Just as usual, Madi woke up irritated and fighting like a wild cat. She was trying to pull her tube out of her nose. Eventhough we discussed everything with Madi before the surgery, nothing helps you prepare for that terrible feeling. The anaestheologist was wonderful. He gave Madi some lidocaine through her nostril and he gave her some morphine to help her relax while Mike and I pinned her down so she couldn't pull the tube out. She actually hit me in the nose really hard with her fist. Madi's strong will and determination really helps her trudge forward throughout everything. We had to stay in recovery until 7:oop.m. since she had the liver biopsy. But Madi's oxygen saturation level kept us there much later. The nurses had to keep putting oxygen back on Madi because her level was falling down to 81%. Of course 100% is the best that you can have. The last few months Madi's average has been at 95%. The doctor was called back into the room several times to listen to Madi's heart. She then had to have a breathing treatment. This helped a little, but the doctor still didn't want to send Madi home yet. He then put her on some lasix to help. Dr. Sudekki (I am pretty sure that I am misspelling his name) and the nurses in recovery were just wonderful. He just sat there with us talking the last few hours that we were at the hospital. This recovery room is usually only for sedation recovery from CAT scans and MRIs. But since Madi can only use propofol to be sedated, an anaestheologist must do this instead of a nurse. Madi just kept saying that she wanted to go home the entire time that she was in recovery. We kept asking her to take deep breathes and to cough so her oxygen level would go up. She would ask me, "what is this place, an excercise room or what?" She was so exhausted.
Madi did get about 100 ml. of Peptamen Junior before we left the hospital. This made me feel better knowing that the feeding tube was working before we left the hospital.
Everything went well with hooking her up at home. Madi's pump was going at a very slow rate of 30. Madi woke up at 4:00a.m. needing to go to the bathroom. (She usually gets up many times before this though).
She also had to vomit at the same time. (We were both very scared about her tube getting out of place, but I didn't let her know that I was scared too). I finally got her back into bed and she threw up some more mucos. She watched tv for a little while so she could relax. Mike was unlocking the door about 4:45a.m. When he got to work, they told him to go back home, which was a wonderful thing. He can't even walk today. He puts on a good show in public, but his body is really deterriating. His MS really escalates with stress. (It's a good thing that Mike doesn't read my updates, he would be mad at me for writing about his MS)
Since Mike is next to Madi, she told me that I could go update on the computer and ask everyone to pray for her so that she can get use to the tube being in her body. She said, "I thought that ya'll said it would be better for me getting this tube in!" I told her that we wouldn't beg her to eat or drink anymore while she had the tube and that her body could heal better getting the nutrition that it needs to get well sooner.
We have a clinic appointment at 9:30a.m. tomorrow. Hopefully we will find out something about the liver biopsy.
I need to ask ya'll for some more extra prayers for our bmt friends, little Brooke, little Mohammad, and for a teenager, Michael Johnson. Michael is also from Crosby.
I do have some really good news to rejoice about. Little Ryan (aka "Batman") Williams from Dayton is in remission. He is such a fighter, just like Madi.

Monday, June 26, 2006 3:31 PM CDT

The CAT scan results were worse than the last scan. She is getting off the Ampho though. Madi's liver functions are getting worse. Her EOS% cells were 50% of her total white count. Her edema is worse. Madi still is not able to eat and she can barely drink. We use to think that it was a psychological problem for her, but she throws up fluid at any given time day or night. It is like she is overflowing in fluids. Nutrition is a major concern still, so she is recieving two infusions of albumin (500 mg. total). She will recieve lasix in about an hour after her albumin is complete. The lasix will help release some of the fluids that she is retaining. She will also get a prescription for lasix to take at home. She will hopefully have an echo after she finishes with her lasix. They are concerned with all the fluid around her heart again.
On Wednesday Madi will have to have a liver biopsy and they will also have to insert a NJ feeding tube.

Friday, June 23, 2006 6:34 PM CDT

Madi hasn't been able to eat or drink, so today when we went to the hospital, I just told them that Madi had to go back on TPN. After looking at her counts, I was told that she couldn't get TPN because her liver counts are too high. The doctors heard crackling in her lungs and chest, so when her Ampho infusion was finished, she went down and had an x-ray. The x-ray showed that she has fluid around her heart and in her lungs again. She will have a CAT scan of her chest on Monday morning. If she still can't eat or drink, they will have to put a feeding tube in.
Madi was crying and telling them that she hurts and feels so bad that she wanted to stay in the hospital. She actually told me that she wanted to go in the middle of night. They told Madi that there wasn't anything that they could do for her.
We still have not heard about when Madi's evaluation for chewing and swallowing will be. When I asked the doctors about other counseling for eating disorders, I was told that they are only use to dealing with teens and it would be way to strict for Madison and they didn't want to go that route.
We will just pray that Madi can start eating and drinking. Mike is on his way home from work for a little while so I can try to find some protein pills that Madi can swallow.

Wednesday, June 21, 2006 1:47 PM CDT

We didn't go to clinic on Monday due to the flood. Madi's day at clinic didn't start off very good for her. Madi's lines were not working, so she had to get poked two times. He ended up having to wiggle the needle back into the first place that he poked Madi in her arm. Madi has been having an allergic reaction to the liquid methadone, so she is very uncomfortable and has been needing lots of Benadryl for the itching and inflammation. Since we have been wheening Madi off the Methadone, she doesn't have to get her 1:00a.m. dose anymore. (We still get up about five times a night since she is still getting fluids for twelve hours). They are calculating a new schedule for Madi to wheen her off the Methadone in pill form. She hated having to take 2.5 ml. of the liquid Methadone. She will be so happy to get to take pills again.
Our appointment today was at 10:30a.m. We always get here about thirty minutes early. Madi's Ampho isn't even ready yet. Hopefully it will only be four hours late and not more. The person in the lab. forgot to type in Madi's potassium. She can't have an infusion until they know what her potassium level.
We have some really good news today. Madi will get to stop taking her Cellcept. She will finally be off all immunosuppression drugs, HEY! It was so hard for me to give her all those pills that destroy all her good cells in her body. The doctors wanted to make sure though that her Graft Vs. Host Disease didn't return again, so she was on a very slow wheening process. Graft Vs. Host Disease can be just as deadly as cancer.
Madi will also get to stop her Mycelex that she has to do four times a day for the fungus in her mouth.
Madi will have a CAT scan next week. So we will pray that it will be clear and she can stop getting the Ampho-terrible. We also have to pray that Madi can start eating more. She tries so hard, but gets so frustrated and nauseated. She drinks most of all her nutrition and nibbles what she can. I am waiting for a confirmation of an appointment with a speech pathologist. The doctors think that Madi needed an evauluation of chewing and swallowing instead of a psychological exam. Madi's counts actually look pretty good today. She still has lots of counts that are in the low and high range, but for the most part, Madi is holding her own, so we can put off getting back on TPN for a little while longer. Hopefully the speech pathologist can help and we can avoid TPN forever.
I want to thank everyone for all the wonderful birthday and well wishes sent Madi's way.
One of the best presents that Madi received was from one of Mike's bosses at work, Mr. Tim Spenner. Tim ran 26 miles in the San Diego Marathon! He was running on behalf of leukemia, lymphoma and myeloma research. Another co-workers young daughter, Katie Impelman, was diagnosed with ALL while Madi was going through her transplant. Tim wore both the girls pictures on his shirt running the entire 26 miles. (There was a long article in The Baytown Sun on June 4th if anyone wants to pull up the article).

Friday, June 16, 2006 1:36 PM CDT

Not only HAPPY BIRTHDAY to Madi, but also to Garret W. and Shane M. as well! HAPPY BIRTHDAY BOYS!
Madi is getting her infusion as I type. It feels sooooo good to be out of the hospital! I am still trying to unpack from our 36 days in the hospital.
Our number one problem is eating still. Madi has a lot of anxiety and nausea. I think that a lot of it is a psychological problem. October really was the last time that she could eat. She vomits often. Then she is scared to eat because she knows that she will probably throw it up. I have just had to get really honest and tough with her, which I hate to have to do. She doesn't need to go back on TPN. She still is on fluids for twelve hours at night. Back in 2003 when she finished all her chemo, she couldn't eat either. Madi ended up with a feeding tube going through her nose and into her stomach. Madi's medicines would clog up her tube so we had to take her tube out numerous times and reinsert it. It was absolutely terrible. I know all the prayers will make it easier for Madi. The doctors are talking about sedating Madi and scoping her to see if she has any problems inside.
Since we are at the hospital today, Madi got to celebrate her birthday yesterday with her best friend, Savannah. I took the girls to Libby Lue and Build-A-Bear. We had cheese pizza and a cookie cake. Madi tried to eat, but she got big tears in her eyes when she couldn't. Last night she told me that when she had to make a wish at Build-A-Bear, she wished that Jesus would just make her well, like she use to be in the old days.

Wednesday, June 14, 2006 3:24 PM CDT

Yes, it's true, we are out of the hospital! We were home about twelve hours before we had to return to clinic. We have been here for over five hours. We should get to leave pretty soon. Madi had an x-ray today before her Ampho. The x-ray showed no more signs of pneumonia. The other stuff looks clearer as well.
Madi is still on fluids at night. She is not on TPN though. Let's pray that she can tolerate eating without problems.
THANKS FOR HELPING MADI GET WELL WITH ALL THE PRAYERS!
All of you Madi fans are our heroes!!!

Monday, June 12, 2006 7:28 PM CDT

Madi temp. was 100.3 at 4:00p.m. today. If she keeps her temp. under 100 degrees during the next 24 hours, we should be out of here tomorrow night. Madi has to still get her anti-fungal infusion late tomorrow evening. We will be going to clinic Monday, Wednesday, and Friday to get infusions still. Let Us Pray that the fever stays away!

Sunday, June 11, 2006 2:51 PM CDT

Mike spent the night with us last night.
Yesterday we wheened Madi off 1/2 of the Fentanyl patch that she wears for pain. I can really tell a difference too, for the better. Hopefully tomorrow we can take it off all together. We still might get to come home tomorrow if she doesn't run higher fever. She is only on Lasix in the morning now.
Mike spent the night with us last night.
I went out for a little while to buy some birthday presents. It felt so wonderful to be outside. When I got back, Madi ate 12 pieces of Apple Jacks cereal. She ate a few bites of a donut stick at night.
Her temperature has been staying under 100 degrees. Madi started itching really bad this morning. She got some Benadryl and took a good nap. Madi's lungs sound clear. She still complains a lot, but the pain medicine has so many side effects.
I just cut up some apple for Madi. She ate a few bites. She is off TPN 12 hours during the day.
(The PCA just took Madi's temperature and it is 100.3 and
her blood pressure is 83/54)

Friday, June 9, 2006 11:00 PM CDT

Madi was very cranky today. We found her 1:00a.m. pain pill in her bed this morning at 9:00a.m. So she really felt like a "10" all day.
Madi's bone marrow biopsy and spinal tap reports both came back very good. We are still waiting for the reports about if Madi might possibly have a virus in her bones. So far nothing at all is showing up in her blood.
Madi is still on lasix twice a day. She has been drinking a lot of water too. She is now off her low fat diet. Every time that she tries to eat something, she vomits. The doctors think that the TPN is causing a lot of Madi's nausea. She will only be on TPN for twelve hours at night starting Saturday night.
The doctors said that if Madi doesn't run fever, maybe on Monday we can go home. (At 8:00p.m. her temp. was 100.3)

Thursday, June 8, 2006 3:20 PM CDT

I only had a couple hours of sleep last night. It is always super noisy at night anyway. (When all the night nurses start laughing and carrying on, Madi says that the night shift must be having a chip and dip party)!
I talked with a doctor at midnight about doing Madi's needle biopsy. I told her that Mike and I didn't feel comfortable doing the needle biopsy since she was sedated on Wednesday. She gets so much pain medicine everyday anyway. We want to wheen her off the Fentanyl patch and methadone. Madi also gets Demerol every night as a pre-med for her Ampho that she is on again. We have to be so cautious because of all of Madi's terrible history with sedations and the PRES syndrome. Back in 2003 we went through almost the same situation. The infectious disease doctors did so many needle biopsies and major surgeries to get samples in Madi's lungs, liver, and abdomen. Nothing ever grew in the labs. We never found out what caused all of Madi's constant months and months of fever. We just hate to put Madi through this again. We were told back then by Dr. Starks (he is the head of I.D.) that after antibiotics are started, it is often difficult for anything to even grow in the labs anyway. And if it is a virus, which the doctors seem to think that it is, there is no way to treat a virus anyway. So why would we put Madi through that now?
The doctors were very understanding of our reasons for refusing to do the procedure today.
Madi's temperature has been a little lower today during the last 18 hours. It is staying under 100 degrees.
She is getting a two hour infusion of IVIG right now.
I know that prayers are being heard and answered. Thanks for coming to Madi's rescue again.

Wednesday, June 7, 2006 5:49 PM CDT

This is second update for today.
I writing to ask everyone to pray extra hard so Madi won't have to have another procedure done tomorrow. She is on the schedule to have a needle biopsy done tomorrow. The doctors want to get some of the fluid from her lungs. They are concerned because they don't know what exactly is causing her fevers. They added more antibiotics today. She just finished taking five days of Zithromax, which caused a lot of vomiting and cramping.
I will update tomorrow.

Wednesday, June 7, 2006 2:27 PM CDT

On Tuesday Madi had an echocardoigram. The doctors wanted to make sure that Madi's heart was not damaged. The results were good. (In the report it stated: Small circumferential pericardial effusion measuring 3-5 mm in diameter. No obvious intracardiac thrombus or vegetations noted in the study. Qualitatievely normal biventricular systolic function. Left ventricular shortening fraction of 37%. Left ventricular myocardial performance index of 0.34
She has a lot of fluid still. She is on lasix at 9:00a.m. and 9:00p.m. every day and night.
Madi went down to PACU at 9:30a.m. She had her bone marrow aspiration and a spinal tap (lumbar puncture) around 11:00a.m. We only stayed in recovery for an hour. Madi did really well with her sedation of Propofol. (Austin waited in Madi's room while Mike and I went down with Madi. It will take a few days for the results.
While we were downstairs, I ran into an old friend from the 9th floor back in 2003. Her daughter use to have ALL. All the steroids have caused lots of problems over the years. Sarah is now 20 years old. She goes to Texas Tech. Sarah is still in remission, but she is having surgery on her hip. Let's pray for a quick recovery for Sarah and hopefully this will be the last surgery for her as well.

(Instead of Madi getting back on a PCA pump for the pain, she started wearing a Fentanyl patch for the pain on Saturday. She still takes a methadone pill at 1:00a.m. 9:00a.m. and at 5:00p.m.)

It sounds like Austin did a great job showing his pig last night. He was 7th in his class and I think that he was 17th over-all. I could be wrong, but I think I'm right.
The auction is tonight.

Monday, June 5, 2006 10:29 PM CDT

Madi has been getting worse the last three days. She could barely open her eyes Sunday morning. Madi's eyes got better after she was on lasix in the afternoon. The fluid just keeps building up. The x-ray on Sunday morning was also worse than the previous one.
Today was a really terrible day for Madi. She started drinking contrast for her CAT scan around 10:00a.m. After drinking a full cup of contrast she started vomiting. She was able to drink almost another cup. Normally you have a CAT scan 1 1/2 hours after you drink the first cup of contrast. They didn't get Madi until 3:30p.m. We then had to wait over an hour again downstairs. She finally had the scan 4:45-5:30p.m. She was just exhausted by the time she had her scan. They also did Madi's head, so she hates it when they strap her head down in a tight hold and velcro her head so she can't move. She also got tired when she had to hold her arms over her head for almost ten minutes at a time. She even started crying. She never has cried during a CAT scan before. I tried to take her mind off things by reminding her about her birthday coming up on June 16th! Most of the contrast was already out of Madi. What they could see on the scan didn't look good in her lungs. She has a lot of fluid and other stuff that they don't know what it is. Madi had more lasix late tonight and they also have started Madi back on the Ampho just in case what they see is a fungus again.
Madison was crying tonight because the doctors want to do a bone marrow biopsy on Wednesday in PACU. She was asking me about now is that where I say goodbye to you in the hall and you have to leave me alone or is that where you can walk further into the other room with me?
The doctors also mentioned to me about doing a possible needle biopsy into Madi's lungs. I won't tell her about this until they actually have to do it.
I hate that I have to miss Austin showing his pig tomorrow night at the Crosby Fair. Madi wants me right next to her every second. That's why it is even hard for me to update. The telephone cord won't reach that far across the room.
I feel really sad that I had to miss Austin's award ceremony at school and all of his pig shows during the last eight months or so. He knows that I would be there if I could.
And now for some really sad news. Another bone marrow transplant little one has died. Little Joshua was only one. His family was the first Amish people that I have ever met so far. Please keep this sweet family in your prayers. Joshua was down in ICU for a long time. I got to visit with his mom and dad a few hours ago.

Saturday, June 3, 2006 4:51 PM CDT

We will be here for a long time again. Madi had an x-ray at 9:00p.m. last night and it seems like she has the early stages of pneumonia. The doctors are not sure if she has a combination of a viral, bacterial, or fungal infections as well. At 1:00am she started taking antibiotics. She will probably have another x-ray tomorrow and a CAT scan on Monday.
She feels like she has the flu. She threw-up her morning pills, so she had to re-take them again. The last time that she ate was Friday morning. Madi's throat hurts to swallow. She will probably have to go back on TPN tomorrow.

Friday, June 2, 2006 5:42 PM CDT

Madi's temp at noon was 100.1 and then it was 100.3 at 4:00p.m. so we will be staying in the hospital.
We will possibly try to get out of here tomorrow if Madi can be fever free for 24 hours.

Friday, June 2, 2006 11:19 AM CDT

Madison's temp. was 100.5 Thursday at noon. If she stays fever free for 24 hours, we will get to leave today. I will update this afternoon.
P.S. The toothfairy left Madi $20.00 under her pillow the other night!

Wednesday, May 31, 2006 5:44 PM CDT

The exciting news for today is that Madi lost a tooth eating some corn on the cob and she didn't even have a loose tooth! (We played a little joke on the doctor about Madi's teeth). I don't think that I mentioned it to you guys, but Madi's tongue looked like the fungus was back last Friday. They didn't want Madi to start getting Ampho infusions again, so they ordered a type of Ampho that Madi could swish and swallow four times a day. It was like five times stronger than IV form. The Ampho came in a 5cc syringe. The first time that Madi had to swish and swallow, she threw up one-half of a gallon, no lie. The doctor then just told her to swish and spit. She was still throwing up sometimes, but not as much. We added syrpalta to it so it tasted better. She then got better at it. She only had to swish and spit the Ampho two times yesterday. Today she didn't have to do it at all. (Getting back to the joke on Dr. Myers. He saw me cooking Madi's corn on the cob in the microwave. Later on in the day, I had the nurse ask him to come to our room when he wasn't busy. When he came in, I told him that Madi didn't have any loose teeth, but she lost eight teeth eating the corn on the cob. I told him that it must have been the Ampho that caused it. YOU SHOULD HAVE SEEN HIS FACE!!! He looked over at Madi and she was playing it up holding her mouth with her hands. The moment was priceless!!! Of course we had to tell him the truth right a way. It was hilarious)!
Madi might get discharged on Friday. She has been spiking a fever around 100 everyday at noon. Today it was only 99.8
We started wheening Madi off the PCA (pain pump) last night. They are switching her over to Methadone by mouth. Madi woke up at 3:00a.m. with withdrawls. She had diarrhea and vomiting. She had a headache and was extremely irritated. She still can push her button, but she is not getting the constant drip anymore.
Madi's pancreas is better.
Amylase is normal 74
Lipase is 364 (normal range is 25-120)
Madi's liver panel is still high.
AST 171 (normal range 15-40)
ALT 204 (normal range 10-35)
GGT 1917 (normal range 13-25)
A wonderful thing happend today. A teenager got to leave today! She reconnected with an aunt who will take excellent care of her! Lots of prayers have been answered!
Please continue praying for all the kids down in ICU. We have lots of friends that need to get back in the bone marrow transplant unit ASAP.

Sunday, May 28, 2006 6:46 PM CDT

Madi, Austin, and I enjoyed playing Uno this weekend. Mike has been working "days". Maw-maw and Paw-paw watched Madi while Austin and I went to church at the noon service at St. Lukes. Madi still feels yucky. The doctors increased her pain medicine in her PCA pump. She spikes a fever everyday around noon. The doctors are still trying to wheen her off the steroids more. Madi's central line is being very positional which is causing problems drawing blood for her early morning cbc.
Madi's liver panel numbers are still going up instead of going down. This has the doctors puzzled.
Madi's pancreas is doing better.
Lipase 576 (normal range 25-120)
Amylase 121 (normal range 30-115)
Liver Panel:
AST 185 (normal range 15-40)
ALT 232 (normal range 10-35)
I HOPE EVERYONE HAS A WONDERFUL MEMORIAL DAY!
LET'S REMEMBER TO KEEP ALL THE TROOPS IN OUR PRAYERS!

Friday, May 26, 2006 11:24 AM CDT

Madi had a good morning yesterday. But the afternoon was terrible. She just wanted me to sit right next to her constantly. She had more diarrhea.
Madi's temperature was 100.9
We don't know if she feels so yucky because we are wheening her off the steroids or wheening her off the pain medicine or could it still be because of the ribavirin? They are checking to see if she may have a virus. (We won't know the results until Tuesday).
Madi's liver panels are still going up, which is not good.
Madi's pancreatic enzymes are going down.
Amylase 170 (normal range 30-115)
Lipase 680 (normal range 25-120)
Austin is coming to spend the night with us.
Can you believe that the school year is already over? It seems like a dream to me.
I HOPE THAT EVERYONE ENJOYS THE SUMMER AND GETS SOME MUCH NEEDED REST AND RELAXION!
I will definitely be back to work in August. (I can't wait)!

Wednesday, May 24, 2006 6:39 PM CDT

Madi is doing very well right now with her two hour ribavirin breathing treatment in the tent. She didn't even complain about having to do it at all.
We have had a crazy afternoon. I had to pack our room 45 and move into room 44.
I don't know right now exactly where her counts are for today. I do remember that her Lipase is down a little. Madi's Amylase is up eleven points.
We will probably be here another week. We have been here 15 days today. They have been wheening Madi off her PCA pump 20% every day since Monday. Friday should be her last day on the pump.
TEACHERS AND KIDS: ENJOY YOUR LAST FULL DAY OF SCHOOL TOMORROW!

Tuesday, May 23, 2006 9:51 PM CDT

Since Madi's liver panel is so high, Madi will not be able to take the ribavirin pills. She will have to get the ribavirin treatments through the tent again. She will have to be in the tent for six hours total. It is usually two hours in the tent and six or eight hours out and then back and forth again.

Liver Panel:
AST 122 (normal range 15-40)
ALT 147 (normal range 10-35)
ALKALINE PHOSPHATASE 443 (normal range 175-420)
GGT 1245 (normal range 13-25)

Pancreas Enzymes:
Amylase 195 (normal range 30-115)
Lipase 927 (normal range 25-120

Monday, May 22, 2006 9:10 PM CDT

Madi got her IVIG infusion this afternoon. The infusion, as well as the Ribavirin, both make her feel like she has the flu. Wednesday night should be the last time that Madi has to take the Ribavirin pills.
Madi drank four of her special drinks today. She nibbled at some pancakes twice today too. She is making progress.
Madi's Lipase was 1636 (normal range is 25-120)
Madi's Amylase was 267 (normal range is 30-115)
Please keep all the bone marrow transplant kids in your prayers. One of my newer friends just found out that her four-year-old son just relapsed from his transplant. She speaks mainly Arabic, but she is learning English very quickly. She misses her two younger children dearly.

Sunday, May 21, 2006 6:23 PM CDT

Well Madi's night was better than her day yesterday. I really think that her tummy was so upset because she started on a liquid diet. A dietitian sent up some drinks called Resource Wild Berry Fruit Flavored Beverages. Madi sucked the whole eight ounces down so quickly. The drink has 250 calories. It is considered a medical food nutritional supplement. I am so excited that Madi loves them. At 11:00am Dr. Krance said that Madi could be on a low-fat diet now. So Austin and Mike watched Madi while I ran to Target to get some things that Madi likes to eat. (She never would eat the hospital trays).
Madi ate four bites of a low-fat pancake this afternoon. She has only had about 1/4 of the diarrhea that she had all day yesterday. She still says that her pain level is a 10, but she has been getting "just too finger happy" pushing her pain button, so I have to put it out of reach. I do let her push the button sometimes. She is still getting a constant drip every few minutes as well.
Today Madi's Lipase was 1965 (normal range is 25-120)
Today Madi's Amylase was 324 (normal range is 30-115)
I hope everyone had a chance to recuperate from the fishing tournament.
I hope all the teachers and kids have a wonderful "last Monday" of the school year tomorrow.

Saturday, May 20, 2006 9:44 PM CDT

I hope everyone had fun in the sun at the fishing tournament today. From what I could see out of the window, it looked like a gorgeous day. Words just can't express all our thanks and appreciation. I am still so amazed by all of Crosby's and Barbers Hill's support for our family. So many of you have never even met us yet.
The only thing that we need now is still lots and lots of prayers for Madi's complete recovery. She had a really bad day. Even with her PCA pump (hydromorphone), Madi's pain level stayed at a number ten all day. Tonight she even said that her pain number was a thirteen. She went to the bathroom every few minutes. The diarrhea has also returned as well.
We got some kind of bad news last night. The doctors came in and said that someone in the unit had tested positive for RSV. So Madi is having to take four pills of ribavirin each day now. (This is the horrible medicine that Madi had to take when she had to be in the strictest of isolation and do the ribavirin breathing treatments in the tent. She originally came in with GVHD, then tested postive for RSV, and then she suffered from PRES syndrome).
Just to tell you how dangerous the ribavirin medicine is, our pregnant nurse can't even touch the pills. She has to wear gloves and then give the pills to me in closed baggie so I can then give Madi her pills to take. The warning is all over on the baggie.
Austin was of great help to me last night and today. Madi is so happy when she can boss her brother around. I was able to wash Madi's favorite blankets on the 16th floor this afternoon.
Madi's Lipase was 2524 and her Amylase was 438.
Many of her other counts are falling in a bad way.
The medications cause a lot of that too. Madi's platelets and ANC have been dropping.
The doctors have been debating on putting Madi back on TPN. Madi's liver functions have been coming down a little closer to normal since she has been off the TPN.
I hate the way that Madi acts on her pain medicine. It really affects her emotions. She apologized all day long to me for having to take care of her. She said that she was so sad and sorry that I couldn't go to work because I have to be with her so much since she had to have a transplant. She told me every time when she had to go to the bathroom, that she was sorry that I have to unplug all the cords and drag her big IV pole to the bathroom and take care of her. She also said things like, sorry mom that you can't watch the news because I am watching the Disney Channel. She also gives a million hugs and says I Love You a million times, which of course I could never get enough of, but it just wears Madi out so much. I know tomorrow will be better.
I JUST LOVE THE FISHING T-SHIRTS. I CAN'T WAIT TO SEE THE DVD! THANKS AGAIN FOR BEING OUR SPECIAL ANGELS ON EARTH!

Friday, May 19, 2006 3:15 PM CDT

Madi didn't feel well at all last night. She pushed her pain button many times. It also made her so much more emotional as well. Madi's vision was a little blurry. She wanted some Benadryl to help her fall asleep, but the doctor would only let her have one-half of her regular dose. It helped her fall asleep at 9:30p.m.
Madi was really upset first thing this morning because the nurse told her that she was going to have her MRI done later today. It took her a long time to calm down. Once Madi was feeling a little better (one hour later) I stepped down the hall to get a cup of coffee.
When I was returning from down the hall, I heard Madi screaming out, "THANK YOU JESUS!" When I entered the room, the nurse practioner asked Madi if she wanted to tell her mom the good news? Madi said, "Oh I'm sure she figured that out on her own." All that worrying for nothing. The doctor did tell me that the GI doctors still want to scope her, but it would be best to wait for her pancreas to return to normal first.
Lipase today is 3935 (normal range 25-120)
Amylase today is 526 (normal range 30-115)
Madi can have clear liquids today. She had one oz. of apple juice. She was so happy when Dr. Krance told her that she could suck on a strawberry push pop. (He is the head bmt doctor that was on the ABC Extreme Home Makeover. I know that a bunch of you watched the Kubena family that night.) Madi doesn't like the hospital juice or jello so maw-maw is bringing the good kind up when Austin gets out of school. Mike is working nights and Austin will be spending the weekend with us. He hated to miss fishing tomorrow, but Madi does so much better when Austin is around. He also likes to be with us when his dad is working nights.
HAVE A SAFE AND FUN DAY IN THE SUN TOMORROW.
DON'T FORGET TO WEAR YOUR SUNSCREEN!!!

Thursday, May 18, 2006 4:40 PM CDT

I forgot to tell you guys that we took Madi off her TPN. The last time that she had TPN was Monday night. She has not had any diarrhea since early Tuesday morning. She has only been getting fluids full of potassium chloride and phosphate, magnesium sulfate, dextrose and sodium chloride. She has been getting antibiotics as well as her immunosuppresants. (She has a headache and is very dizzy right now. I will have to tell them to check her sugar level).
Madi had her monthly patamodine breathing treatment yesterday. She should get her monthly IVIG tomorrow.
Madi asked me last night if she was going to die? I asked her why in the world would she even ask me something like that? She said well nobody will let me eat and they took away my TPN! (Even on heavy doses of morphine, her little brain is always working)!
Madi's favorite time of the day is when she gets to suck on an anti-fungal tablet (mycelex) for her mouth. And when she gets to chew a Tums for her calcium! IT IS SO SAD THAT IT IS FUNNY! Madi even laughs about it too!
The GI doctors came in right before 9:00p.m. last night. They wanted to do a MRI and possibly scope her both ways.
She was going to have the MRI today but since Madi has to be totally sedated by an anthesiologist, it wasn't going to be possible until Monday. The GI doctors said that if they scoped her, the dye would irritate her pancreas even more.
Madi was in so much pain after the ultrasound yesterday. She was really upset that they had to do any type of procedure on her at all. She remembered how painful it was when she was in the hospital for Easter.
The plan for right now is just to sit tight and wait for her enzymes to drop to a normal range. Today her Lipase was 4256. The normal range is 25-120.
Her Amylase was 703. The normal range is 30-115.
Madi's weight is staying the same. She weighs 56 pounds.
She should get to have clear liquids tomorrow afternoon.
I will update you on her ultrasound of her abdomen yesterday. It said that a mild amount of floating sludge was noted within the otherwise normal-appearing gallbladder. The pancreas was slightly diminished in echotexture in keeping with a known history of pancreatitis. A mild amount of free fluid is present with the pelvis above the urinary bladder.

Wednesday, May 17, 2006 6:09 PM CDT

Madison had a fairly good night. She is in pain, but not in excruciating pain. The PCA pump helps her manage her pain level. Her Lipase yesterday was 9339. Today it is 5454. The normal range is 25-120. I don't remember Madi's Amylase yesterday. Today it is 1137. It is also down a lot. The normal range of Amylase is 30-115.
She had an ultrasound done this afternoon. I have been waiting to hear the official report from the doctors, but it isn't ready yet.
We are still waiting for the G.I. doctors to come by and assess Madi as well.

Tuesday, May 16, 2006 2:16 PM CDT

We have been at clinic since early this morning.
Madi is going to be admitted back into the hospital. Madi's pancreatic enzymes have jumped into the thousands. She is in a lot of pain. I will update when I find out more information.

Monday, May 15, 2006 10:15 PM CDT

Here is a quick update. The doctors are assuming that Madi's Graft Vs. Host Disease is causing the elevation of her pancreatic enzymes. Madi's lipase was only 198 on May 6th. Today it was 518. Her amylase was only 71 on May 6th. Today it was 167. They wanted to admit Madi into the hospital, but when they observed Madi in person, they could see that she was not in any pain and she was actually acting silly.
We went to clinic and Madi's line worked just fine today. After her CBC, we went downstairs and she had the CAT scan. After reading Madi's CBC, the doctor called down during the CAT scan and order some more images to be done. They were shocked to see Madi doing so well when we went back to clinic. She definitely looked better in person than looking at her counts on paper.
Since so much of Madi's nausea happens right before and after she gets off her TPN in the morning, we are still trying to get her off the TPN. Home health care should deliver fluids tomorrow night instead of her normal TPN. We will see if things go better on Wednesday morning. The TPN is also causing her liver enzymes to be elevated. They were slightly better today since she is off the anti-fungal medicine. (No more "Ampho-terrible" or "shake and bake" infusions)!
The CAT scan results were not ready yet. The oncologist's opinion was that Madi's lungs looked the same or maybe slightly better.
Madi did something today that she hasn't done in about two weeks or more. This evening she ate two bites of chicken, one tater-tot, and ate about three ounces of jello!!!
THIS WAS A MIRACLE! Madi's tummy didn't even hurt afterwards, she was just full.
THE PRAYERS ARE WORKING! Please keep them coming!!!

Sunday, May 14, 2006 5:44 PM CDT

HAPPY MOTHER'S DAY!
I will give you an update from late Friday after I updated last. Madi wasn't able to get her Amphotericin B. infusion because her potassium was too low. She did get an Infliximab infusion instead for the GVHD.
Madi's x-ray showed that her central line was still in place where it needed to be. The nurses still couldn't get any blood return though. The nurse put some special medicine in her line but it still wouldn't work. Everything can go in her line, the blood just can't come out. Hopefully, it will work tomorrow.
The doctors decided to increase Madi's steroids, so thank goodness we didn't have to go back to the hospital over the weekend. We have to go to clinic tomorrow and then get a CAT scan. The doctors are assuming that the Graft Vs. Host Disease is returning eventhough they have been so extra careful about wheening Madi off the immunosuppressants. She could also have a virus. She is still taking 750 mg. of Mycophenolate Mofetil (Cellcept) and 20 mg. of prednisone.
Thanks for all the prayers. I will update tomorrow night.

Friday, May 12, 2006 12:19 AM CDT

Well my little angel has had a rough week. She is so nauseated. She vomits once a day or more. She has constant dry-heaves though. She has diarrhea as well. We hardly sleep at all. (We are usually up every other hour going to the bathroom from all the TPN anyway).
Madi is on the verge of being admitted into the hospital again. She isn't running a fever so we will just be on the out-patient side. It is sounding like we will be coming everyday to the hospital everyday now though. Hopefully the fevers will stay away. The doctors are thinking that Madi's Graft VS. Host Disease is returning once again. She could also have a virus.
Madi's central line didn't work this morning, so she had to get poked. She didn't even cry. We are fixing to go for an x-ray to make sure her line is still in the right place.

Monday, May 8, 2006 1:09 PM CDT

Austin started running high fever on Saturday. So he was confined to his bedroom and my bathroom only. He has a sore throat and stuffy nose. Thank you Dr. Bureau for calling in a prescription for him on Sunday morning! (She told me that she reads my updates).
Today I think is day 154 since the transplant. Madi has been suffering from withdrawls still. We wheened her off some steroids and morphine last week. She has had a lot of vomiting this past weekend. Madi's mouth still hurts. She doesn't have thrush or a fungus anymore in her mouth. Something is there though. She will have a mouth biopsy next week. She will also have a CAT scan next week too.

Friday, May 5, 2006 8:21 PM CDT

Madi and I dropped Austin off at school at 8:00a.m. and went straight to clinic. We made it back in time to pick Austin up from school. (This was a first).
Madi has been feeling pretty yucky still. She threw up just a few minutes ago. She isn't eating or drinking anything but water. She can't get off her TPN if she isn't getting enough calories during the day.
Somehow between the telephone ringing and the doorbell ringing, Madi managed to record the prayer for Ms. Carol's dance recital. Eventhough so many of us will not physically be at the recital tomorrow, we will be there in spirit. Especially some very special people smiling down from Heaven. (Madi and I will have to wait to see the DVD)
BREAK SOME LEGS GIRLS! (not really, it is just a figure of speech that means good luck)

Wednesday, May 3, 2006 5:00 PM CDT

Today went much smoother and quicker at clinic than on Monday. We are still wheening Madi off her steroids and morphine. She had a rough morning, but things got better this afternoon.
Madi's liver functions are very high still. It is due to her Ampho that she gets three days a week and the TPN that she is on 12 hours every night. She has been on TPN for six months now. We have been having regular problems with her TPN pump. The pump is suppose to taper up the first and last hour that she is on the TPN. The last hour is causing all the problems. She has severe stomachaches right before and after she gets unhooked in the morning.
Madi might get to have a TPN free weekend. She of course will have to start eating and drinking more. She still really isn't eating at all. Madi's mouth hurts.
Madi is having to swish and spit again. She is actually suppose to swallow a teaspoon four times a day, but she usually vomits and gags just swishing and spitting. She has a type of fungus in her mouth. The Ampho infusion should help it, but it isn't working. Today they gave Madi a pink little sponge on a stick to help with the gag reflex. It makes it easier on Madi but she still cries because it burns her mouth.
Madi is excited about this weekend. It is time for Ms. Carol's dance recital. Ms. Carol has asked Madi to do the prayer before the recital starts. Madi is not happy that I have to record her reading the prayer. She just wants to go to the high school, get on the stage and read it.
It is still hard for her to understand about avoiding crowds. Dr. Doug said that it is ok for Madi to start going places sometimes if she is not in a big crowd of people. (Madi is like a brand new baby since she has Austin's new bone marrow. She will have to get all of her immunizations all over again).

Monday, May 1, 2006 2:37 PM CDT

We have been at the hospital since 11:00a.m. and Madi hasn't even started getting her infusion yet. Who knows when it will get here? Hopefully we will be out of here by 6:00p.m. Unfortunately, we will be driving home in all the traffic. We are use to delays at the hospital. Madi's pancreatic enzymes are better today than last week. Madi's Lipase is 216 and her Amylase is 90.
Madi's WBC 7.20 HGB 12.2 Platelets 177 Triglycerides 213
Barbers Hill Young Farmer's Fishing tournament is coming up soon. Can you believe that it is already May 1st today?
You can pull up the web site at: FishinforMadi rules and regulations

Friday, April 28, 2006 1:24 PM CDT

I heard that the plays were a huge success. Thanks to all the caring kids in Crosby!
Madi and I would have loved to have been there. I have to avoid large crowds too. It is so hard for Madi not to get to go anywhere in public. She still has to wear her mask at the hosptial. We avoid crowded elevators. Madi will look in the elevator when it opens, and then she will say, "I know mom, we will wait for the next elevator." Madi had to start taking two new prescriptions this week. Nothing too serious. Madi still isn't really eating. Her pancreas enzymes are elevated more this week. Hopefully, they will go back to normal soon.
Please keep Madi and especially Sarah Slusher in your prayers, I know you all will!
GOD BLESS YOU ALL!

Wednesday, April 26, 2006 2:08 PM CDT

Madi just finished getting her infusion. She is doing pretty good these days. We don't have to come back to clinic until Friday.
The Crosby Middle School is performing "Never Saw Another Butterfly" at 7:00p.m. this Thursday at the High School Auditorium. The High School Drama Dept. will perform "Three Musketeers" at 7:45p.m.
They are donating all the proceeds to Madison and to Sarah Slusher. Sarah is a CHS graduate that was in a car wreck. She is in a comatose state and is waiting for Medicaid approval. She is unable to get the medical attention that she deserves right now. Madi is donating all her proceeds to Sarah.

Monday, April 24, 2006 1:51 PM CDT

We got to Crosby on Saturday about 3:30p.m.
We had such a wonderful weekend at home. It was so nice to see my uncle who flew in from California. (Both of his kidneys have shut down, so it is nice that he can stay in Crosby for his dialysis.
Madi is almost finished getting her ampho for her fungus. We should be leaving in the next hour or so.
The Crosby Drama Department is putting on the play, "THE THREE MUSKETEERS" on Thursday night. Some of the proceeds are being donated to Madi. Madi is donating all of her part to the Slusher family. I am sorry that I don't know all of the details. But I do know that a former graduate of Crosby High School was in a serious car wreck. She is in desperate need of finacial assistance. Maybe, Beth King, or someone can fill everyone in on all the details about the play.
It is truly so amazing to see how caring and generous the teenagers at Crosby High School are!!!

Saturday, April 22, 2006 12:18 AM CDT

We are still waiting for the doctors to make their rounds and discharge Madi. Mike and Austin have packed everything in the Tahoe. Hopefully we can leave soon.

Our prayers are with Chase and his bike to have a safe ride this weekend in the MS 150!

I will update from clinic on Monday.

Friday, April 21, 2006 7:46 PM CDT

The goal is for Madi to be discharged tomorrow still. She hasn't been feeling very well since this afternoon though. She even threw-up after the ampho infusion. Madi's temperature right now is 100.3! I think that it is because she has been disconnected from her TPN since this morning. We are trying to get her back on a twelve hour schedule again.
I want to wish everyone participating in the "Relay For Life" and the "MS 150" the best of luck this weekend, I think that both events are this weekend. It is so wonderful how so many people are involved in so many different causes that do make the world a better place to live. It is truly amazing just how many young kids, teenagers, and even adults are making a difference in Madi's life.
So once again, THANK YOU ALL FROM THE BOTTOM OF OUR HEARTS!

Thursday, April 20, 2006 10:01 AM CDT

Madi had her IVIG and Ampho infusions yesterday. She has been in a lot of pain again. She doesn't have her PCA to control the pain anymore. She is taking Morphine by mouth now. The doctors are trying to switch everything over from IV to oral intake. Madi did eat 1/4 of a low-fat grilled cheese sandwich yesterday. She has had a lot of diarrhea, but that could be from taking the pain pump away. The surgeons said not to push eating if she doesn't feel like it yet.
Madi was up all night suffering from withdrawls and pain again. Madi's temp at 9:30a.m. was 100 degrees, but that also goes along with her dilated eyes.
The doctors are trying to get us out of here on Saturday.

Tuesday, April 18, 2006 4:56 PM CDT

Madi is having another great day. At 6:30 a.m. the surgeons said that Madi could have clear liquids today! She was able to suck down a box of apple juice before we had to go across the bridge to the clinical care tower to see an ophthalmologist. We were there almost all morning. Madi has been complaining about her eyes hurting since she was in the hospital in November with Parvo. Because of her Graft Vs. Host Disease and seizures that she had recently, the doctors wanted to make sure that her eyes were o.k. Good news, her eyes are fine. She has 20/20 vision.
Madi ate a few bites of Jello today. She drank some Gatorade and apple juice. She still wants solid foods though. She will only be getting TPN for 18 hours starting tonight. They cut her pain medicine that she gets in her constant drip PCA pump in one-half yesterday, so she is pushing her button for pain relief more today. They want to wheen her off the pump so hopefully we can go home at the end of the week!

Monday, April 17, 2006 5:52 PM CDT

Madi had a great day today. She even walked a lot in the hall. She finally had a bowel movement! (First one since Wednesday).
She is starving!!! Madi is convinced that her TPN is only water and that she has a headache because she can't eat anything. She keeps begging me to give her something to eat. It is breaking my heart. We are laughing about it though. Every time that she smells something, like soap or alcohol, she says that she smells chicken or popcorn! The surgeon said that she might be able to have some clear liquids tomorrow.
She had her Ampho infusion today. She will now get it three days a week instead of five. Madi's amylase level is getting close to it's normal range, which is great news!

Sunday, April 16, 2006 10:32 PM CDT

Madi's abdomen hurt too badly when she moved her arms early this morning, so I pulled all of her goodies out of her Easter basket for her. About 11:00a.m. she started feeling so much better. I think all her company took her mind off of her pain. Mike, Austin, and I went to mass at St. Luke's Hospital at noon. We then went and ate a quick bite in the cafeteria.
Madi has been soooo hungry. She tells me that her body isn't getting enough TPN food. The pediatric surgeons come and evaluate Madi around 6:00a.m. every morning. They are very adamant about Madi not eating or drinking anything still. (It seems like I am either begging Madi to eat or depriving her from eating all the time).
We did just get some good news now at 10:45p.m. Eric, our night nurse asked the doctor on call if Madi could get off of her heart monitors now since she has been doing so much better, so I can go and pull all of Madi's leads off of her. She will be so excited!

Saturday, April 15, 2006 9:41 PM CDT

Madi had been running fever for the last couple of days. Her temperature has been close to 102 degrees. (At 8:00p.m. her temp. was 99.8) She has not had any fever since noon today though. Hopefully the fevers will stay away. Madi and Austin dyed Easter eggs this afternoon. I think that Austin was a quick cure for Madi. Madi's abdominal pain is a little better today as well.
Madi's pancreatitis just has to run its course. There are no specific medications for it. The doctors are giving her several antibiotics to prevent other infections from developing.
She still isn't allowed to eat or drink anything. She does take a few sips of water with her pills. She doesn't have any more vomiting.
Madi is anxiously awaiting for Easter Sunday. This will be her first year that she didn't take a picture with the Easter Bunny. She was a little apprehensive about being in the hospital and not at home this year for Easter. I reminded her about the time she was in the hospital when she was four. She then said ok, the Easter Bunny does bring things for the kids in the hospital.
Easter is just a few hours away. I just want to wish everyone a Happy and Blessed Easter since it will almost be over tomorrow night when I update.
(For those of you that know Dr. Doug Myers, he had his first baby today. IT'S A BOY!

Friday, April 14, 2006 11:21 PM CDT

I think that I forgot to inform you yesterday that Madi's central line wasn't working. Yesterday morning the nurses had to poke her twice to get her cbc. Madi's line started working after the TPN nurse put some special medicine in her line. Today it has been working fine.
Today was somewhat better for Madi. She still is in excurciating pain even being on her pain medicine. It was very hard for me to watch Madi cry and scream for two hours while she had an ultrasound. She also had some more x-rays done as well.
Madi's enzyme counts were slightly better today, which is a good sign.
We moved into room 847 in the bmt unit about 7:00p.m. Things seem more like home down here, where it is so much smaller and quieter.
Thanks for the prayers. I will update tomorrow night.

Thursday, April 13, 2006 7:47 PM CDT

The 8th floor (BMT) is full so we are on the 9th floor (hemoc). The doctors want us to go down to the 8th floor as soon as a room is available. Madi has pancreatitis, which is so very painful. She has to be on a PCA (hydromorphone) pump for her pain. She has severe abdominal pain that radiates throughout her entire body. The inflammation of the pancreas is causing all of her nausea and vomiting. She will be in the hospital at least a week or more. The doctors don't want her to eat or drink anything at all, which will be easy for Madi. (The pancreas is an organ that makes digestive enzymes that your body uses to break down and process insulin, the hormone that regulates glucose in the body). It hurts Madi to move. She about comes off the bed when she is lightly touched. She screamed for the longest when the guy came to our room and took two x-rays. She will have an ultrasound tomorrow that will be even worse. She is hooked up to so many wires. Madi's heart rate is close to 200. Madi's oxygen level has been really low all day long. Everyone has been having a rather difficult time trying to get Madi's blood pressure. Everyone thinks that the machines are broken. Madi's temp. was 95 degrees early this morning. Now it is 99.5 The medications that she has been on for weeks are causing her temperature to be really lower than what it really should be.
Hopefully Madi doesn't have any gallstones. The pancreatitis can cause so many problems like respiratory failure or kidney failure too. But I know that with everyone's prayers, Madi will have a speedy recovery just like she did with the PRES.
I will update tomorrow night.

Thursday, April 13, 2006 12:19 AM CDT

Madi started vomiting at midnight. She has been in severe pain. She had the CT scan but she couldn't drink the contrast. She is being admitted to the hospital. The doctors think that she has something wrong with her pancreas. I will update tonight.

Tuesday, April 11, 2006 11:29 AM CDT

Sorry that I wasn't able to update yesterday. Our cubicle wasn't internet accessible. I am just so busy at home waiting for Home Health Care telephone calls, deliveries, mixing TPN, infusing it, giving meds. and all. (Which is ok with me, as long as we can stay out of the hospital).
I had to keep Austin away from Madison since he didn't go to school and went to the doctor yesterday due to his allergies. (Maw-maw took him to the wonderful Dr. Bureau for me since Madi and I were at the hospital all day).
I didn't have to clean house yesterday though.
Thanks to Magic R. (AKA David at Exxon). He sent two maids for the day to our house. THANK YOU SO MUCH MAGIC!!! They almost clean as good as you cook briskets!!! And they are awesome cleaners!!! (I think everyone can figure out why your nickname is Magic)
Back to Madi, she is having a CT scan of her chest, abdomen, and pelvis this Thursday. If the scan is better than the last scan, she will only have to go to the hospital three days a week instead of five days a week!
(I will let you know the results as soon as I find out).
I want to thank Crosby Kindergarten (staff, parents, and kids) for a successful fundraiser last Thursday at "The After School Blast" which supports our "Relay For Life" team that raises money for the American Cancer Society.

Friday, April 7, 2006 2:27 PM CDT

I was told to have Madi draw and color fish today. I am surprised that she just does it and doesn't ask questions. I guess she will find out why before long.
Madi is doing well in clinic. She didn't even take a "Benadryl and Demerol" nap today. She has been busy working in addition and subtraction workbooks.
Madi's CBC looks great. Madi's body has been working hard rebuilding her blood and platelets. She has not had to have a blood transfusion or platelets since she was discharged from the hospital.
Some of todays counts:
HGB: 12.9
PLATELETS: 104
WBC: 4.73
RBC: 4.18
MCV: 94.5
Thanks for all the prayers and concern.
Have a great weekend and I will update on Monday!

Thursday, April 6, 2006 1:10 PM CDT

It has been 122 days since Madi had her transplant. She is getting her anti-fungal infusion now. Madi has been taking 15 pills a day. The doctors said that it is safe to start wheening Madi off the steroids and methodone even more now. So she will have 2 1/2 less pills to take a day.
I use to cut a methodone pill in 1/2, now I will have to cut the pill into 1/4.
Madi is eating a little bit more each day. Her stomach still gets upset often, but she doesn't have any vomitting. She takes Zofran everyday to help with the nauseau. I give her Tylenol frequently for headaches. She hasn't been complaining about her throat hurting at all. Since Madi is doing better, the doctors want to do another CAT scan maybe next Thursday. If things are better, we may only have to come to the hospital three days a week instead of five days a week. We are usually at the hospital about five hours each day. That is not including the time driving back and forth.
I finally got to go to Walmart for the first time in five months last night! It was so much fun! Austin is happy that we have groceries at home!!!

Tuesday, April 4, 2006 2:00 PM CDT

Madi continues to do well. She is having a little "cat nap" in clinic right now. All her pre-meds. for Ampho make her so sleepy.
Mike has to work one more night tonight. Madi will be so happy to have her daddy off for four days starting tomorrow!

Monday, April 3, 2006 11:41 AM CDT

It is so great to be at home! It is so strange though because when we left Crosby on December 8th, people were still putting up Christmas decorations. Now we see beautiful Spring and Easter decorations going up in the yards.
I have been busy re-washing all the clothes in my closet. I figured since I haven't been in my closet in five months, they probably needed to be fresher and cleaner anyway.
Madi will get infusions in clinic five days a week. She is getting Ampho. right now. Madi was complaining of a sore throat at 6:00a.m. My alleregies have been driving me crazy still. Madi hasn't been feeling so good either. The doctors doubt that Madi has allergies since she has been wearing her mask and all.
If anyone out there needs prayers, please let us all know. I just noticed that Madi's web page has been viewed over 10,000 times!!
Besides praying for Madi's total recovery, please keep my father-in-law in your prayers. He will have to be in the hospital for a long time still.
Tyler M. from Crosby needs so many prayers as well. So I know everyone will rally with prayers and support for her complete recovery. I ran into Tyler's mom and dad last Friday at PACU. Tyler was having another tumor removed that grew very quickly. Carrie, her mom, needs so many prayers as well for strength to endure this long road that she must entail watching her daughter battling cancer.
I will update tomorrow. Have a good week at school or work!

Friday, March 31, 2006 10:35 AM CST

YES, WE ARE OUT OF THE HOSPITAL. We had so much stuff to unload. We had all our stuff from the hospital and even more stuff from the RMH. Of course Mike likes to pack the fastest way possible. Throw everything in large trash bags. I have been digging and looking through so many different bags just to find clothes and shoes to wear to clinic this morning. Madi and I stayed with Maw-maw and Pa-pa last night. The guys say that the house is clean, but I want to do some extra cleaning this weekend. I was so tired last night after giving Madi all her medicines. The courier finally delivered Madi's TPN after 8:00p.m. I have to measure and mix in 5 different vials to mix in with her TPN. Then I have to prime her tubing, etc... She is on TPN for 18 hours a day right now.
I tried to update Madi's page at 11:00P.M. but I couldn't get it to respond.
We had a 9:30a.m. clinic appointment this morning. BMT clinic is also on the 8th floor, next to the inpatient BMT. Madi is getting her Ampho infusion right now. We will be coming to clinic for infusions five days a week. Madi will get another CAT scan in about a month so we can see if whatever is in her lungs is getting better. If things are better, we then will only have to come to clinic three days a week for Ampho infusions.
We have to be extra cautious with Madi since she is on immune suppressed medications due to the Graft VS. Host disease. She is also on steriods. We cannot have any visitors yet. My allergies are bothering me really bad since we cleaned our room out at the Ronald McDonald House.
I hope Madi doesn't get sick from going in and out of the car. She still has to wear her mask for protection.

Wednesday, March 29, 2006 3:33 PM CST

Our friends are just now fixing to leave. We were suppose to get their room, but since we are flying out of here tomorrow, we will just sit tight in our tiny little room.
Yes, I did say that Madi should be discharged tomorrow. I don't feel comfortable at all about this yet, nor does our hemoc doctor that has been here the last six weeks with us. We have a new doctor that rotated on yesterday and she doesn't want us here if Madi doesn't have fever. They want to stop all of Madi's antibiotics tomorrow as well. She has been getting Ampho, her anti-fungal medicine, seven days a week. The new doctor just wants Madi to get Ampho three days a week in clinic. Madi's CAT scan showed a slight improvement from a few weeks ago.
I am still waiting for the doctors to come back in and talk to me.
Mom watched Madi while Mike and I spent the morning packing and cleaning at the Ronald McDonald House. (We really thought that we would be moving into a regular size hospital room when we returned). When we do get discharged, we will be coming home to Crosby!

Wednesday, March 29, 2006 0:12 AM CST

Madi did great drinking her constrast and doing her CAT scan.
I have been packing tonight. One of our best friends up here should be getting to go home tomorrow, so we should be able to move to Chaise's room tomorrow.

Monday, March 27, 2006 6:48 PM CST

Well we didn't get to move rooms today. We should be able to get the next room available though.
Madi had a great day. She walked in the hall two different times. She just got finished eating five tiny bites of a french-toast stick! She told me that she wants to eat the same thing for breakfast. Little does she know that she can't eat breakfast tomorrow. Hopefully her CAT scan will be early in the morning.
I don't know if I told ya'll that Madi had a nasal wash yesterday? We don't have the results back yet.
Thanks for all the love and prayers!

Sunday, March 26, 2006 10:06 PM CST

Today was the 100th day since Madi had her bone marrow transplant! We had another enjoyable day. Maw-maw and Pa-pa watched Madi while Austin and I walked over to St. Luke's chapel for the noon service.
Madi stayed busy the entire day playing games, working puzzles, doing sticker books, etc... She didn't even take a nap today. She complained of lower back pain still.
Madi was glad to see her daddy when he came to pick Austin up when he got off work this evening.
I was just told by the night nurse that we might get to move to another room in the morning. We are in the smallest room in the hospital. Our room has two doors in it as well so someone is always coming and going in both directions.
I am going to start packing up things now just in case we get to move early in the morning. I will update tomorrow.

Saturday, March 25, 2006 9:25 PM CST

Today was so much fun! The kids and I laughed all day long.
It was great to hear Madison calling Austin, "Bub." Mike calls Austin Bub. Madi usually calls him Aus or Austin.
Austin has been such a good helper to me. I was able to walk down the hall and get water and coffee several times today. I even went to St. Luke's cafeteria and picked up some lunch. Madi only ate a few bites of Chex-Mix today. She had lower back pain most of the day. (Some pain was probably from all the laughing that she did).
While Austin played his PSP, Madi played her Leapster game. She hasn't played this game in over six weeks. She also colored for a little while. Madi only walked right outside our door to the nurse's station today.
"His Grace Foundation" had a ceramic art activity for the kids to paint about a month ago. Madi had painted a butterfly, dragonfly, and an Easter egg. Today they were handing them back out. Madi told "HG" that she didn't do any of the crafts when they tried to give them back to her. She would not take any of them. I had to show Madi where she had painted her name on the bottom of the objects. She is still having a hard time remembering things from the past.
We had one of our favorite nurses today from when Madi was on the 9th floor in 2003. It was great spending the day with Tonya. We enjoyed a visit from Uncle Randy and Aunt Laura as well. We mainly enjoyed just talking and acting silly.
I want to thank all the ladies at Crosby Kindergarten for another job well done today. They had a garage sale as a fund-raiser for our "Relay For Life" team that supports The American Cancer Society.
I was so sad that I didn't get to clean out my closets for ya'll. We will just raise more money next year with all of my junk, ha! ha!

Friday, March 24, 2006 10:33 PM CST

Madi had another wonderful day. She took a lot of Tylenol for her many headaches that she had today though. We have been decreasing the Methodone that she takes every six hours. She will only get the Methodone every eight hours starting tomorrow.
She didn't want to eat or drink today. She still has abdominal pain due to the Graft Vs. Host Disease. It is getting better, but she still has a lot of damage in her gut. GVHD can be a deadly disease, but the doctors are sure that she has control of it.
Madi will have a CAT scan on Tuesday.
Mike started working days today. He brought Austin up after they took care of the pigs. Austin is spending the weekend with us. He is such a good helper. I took the longest hot shower awhile ago. He gave Madi some water when the nurse gave her Tylenol as a pre-medication for her anti-fungal infusion. She has been doing well getting her Ampho. Back in 2003, Madi ran a fever of 107 while getting Ampho. This is when she had her first seizure. They call Ampho the "shake and bake medicine" and "ampho-terrible." I am thankful that she has been doing well with these three hour infusions every night. She also gets Benadryl and Demerol as a pre. med.
The last day that Madi had Dilantin, the anti-seizure medicine, was on Wednesday. Her blood pressure has been doing better as well.
She has been urinating more than what they are giving her through the IV, so they increased the TPN rate several days ago. She still has her bladder issues where it is difficult for her to urinate and to empty her bladder.
Madison has been on strict isolation, but they took her off today. She can walk only in the hall. She can't go in the playroom or gameroom. She walked one time in the hall today with the physical therapist. She sat on the couch for two hours and watched "Chicken Little" with Aunt Pat. This was the most that Madi has walked and sat up in a long time. And I owe it all to everyone that is praying for Madi. I always knew that God was going to heal Madi, but through everyone's prayers she has had a speedy recovery, especially with PRES.
She didn't remember that Austin stayed with us last Friday night. I think that this is God's way of letting Madi forget all the horrible things that she went through with PRES.
I feel like it is Christmas tonight and that Santa has brought me the joy of being with both my kids tonight!
I appreciate all the prayers and words of encouragement that everyone is writing in the guestbook.
I hope everyone has a Blessed and safe weekend!

Thursday, March 23, 2006 10:12 PM CST

Madi had a non-eventful day, which is good news! Our room was not flooded all day long with residents, fellows, attendings, medical students of neuro, infectious disease, optometry, etc... We just had our regular oncologists.
The MRI report confirms that Madi suffered from Posterior Reversible Encephalopathy Syndrome (PRES). I have been researching PRES on the computer and it scares me to death. My legs started shaking for about an hour before they could be still.
Madi had problems with her memory today.
Today she watched a DVD. It previewed the movie, Yours, Mine, and Ours. Madi told me that it looked like a really good movie. I told Madi that we already had that movie. When I showed it to her, she was so excited and watched it right away and she loved it. She was so surprised that we had the DVD in the room.
Madi wanted to see this movie so badly when it came out at the movies in Oct. or Nov. Madi's oncologist said that she could not go out in public to see the movie since she didn't have an immune system. I told Madi back then, that dad would buy it for her when it came out in the stores. Mike bought the movie about two weeks ago. She watched it one time and said that it wasn't very good. She also saw another DVD and she didn't remember that she owned that movie either. She couldn't remember receiving a care bear about a month ago either when I showed it to her today.
I don't know if she has permanent memory loss about certain things or if it will just take time for things to sink in. She still is having bad dreams when she is sleeping. Her eyes roll around so rapidly. She sometimes moans.
She just took a few sips of apple juice and water today. She ate a few small bites of chicken. She tasted some frozen yougurt. I think she is starting to remember all the pain in her abdomen. She had so much pain and diarrhea after she ate all that chicken a few days ago.
The doctors are concerned about something that they saw on Madi's CAT scan in her lungs. They want her to have another CAT scan on Tuesday. The Infectious Disease team wants to do a biopsy on her. ID did four different biopsies on Madi in 2003. Nothing every grew in the labs. We told them that we do not want Madi to have to go through this again right now. The biopsies were very evasive and difficult. She had to have a PCA pump for the pain and drainage tubes for several days after the surgeries.
I will update tomorrow. THANKS AGAIN FOR ALL THAT YOU DO!

Wednesday, March 22, 2006 9:53 PM CST

The prayers are working. Keep them coming. Madi's MRI was suppose to be at 2:00p.m. Then they told us it would be at noon. At 8:00a.m. the nurse came in and said they were ready for Madi downstairs. Madi did better than I had anticipated, thanks to everyone's prayers. I distracted Madi while Mike talked to the anesthesiologist. She was a wonderful doctor. I read Madi a new book while the doctor put Madi to sleep with Propofal (Diprivan). (This is what she gets when we go to PACU). We then wheeled her into the MRI room. While Mike and I were waiting in the waiting room, Madi's oncologist, suggested doing the lumbar puncture immediately after the MRI. We signed consent forms and waited for about 90 minutes or so. (They had scheduled Madi's LP for Friday originally). Madi was very irritated when she woke up in the recovery room. She was angry that she had a bandage on her spine and I didn't tell her about it before, like I usually do to prepare her for everything. She was in a lot of pain from the LP. She took a lot of Tylenol today.
Madi didn't have any major episodes today. I could see that her eyes were doing some wierd things like what had been going on during the previous days. She had many nightmares when she was sleeping and napping. She had a headache and her back was really sore. Madi let me wash her blankets on the 16th floor this afternoon while she got some platelets and watched "Chicken Little" with her dad. This was the first time that I was able to leave the floor in over a week. It really let me know that Madi was ok because most of the time, she doesn't even want to give up her blankets for me to wash.
As the day progressed we found out the results from the EEG. The neurophysiology report stated that Madi's electroencephalogram was very abnormal. The findings suggest a diffuse disturbance in cerebral function. It also said that a medication effect at least in part could be contributing to this finding. There were no epilepiform features. It stated that a behavioral event had occurred during the recording period but there were no electrical correlate. It said that the EEG technician noticed a behavioral event and she noticed Madi staring but when she asked Madi a series of commands, she was able to answer correctly.
The neuro team met with me later. They confirmed that Madi has PRES. The transplant doctors told us, I think on Sunday, that this is what they thought Madi had.
Madi did well on half of her neuro evalution today. When one of the doctors asked her how many fingers was he holding up, she got everyone one of the answers right. Then when the next doctor did the same thing, she got every answer wrong.
Madi nibbled a few bites of food today. Her abdominal pain returned so she didn't eat that much.
She got to visit with Austin, which was really great since the last few times that he has seen her, she has been an emotional wreck. Austin asked me last weekend if Madi was mentally retarded and wanted to know if she would always be like that. I told him that the doctors said that it should reverse, but they didn't know how long it would take.
Madi was almost asleep when Austin came to the hospital. She perked right up fast. Eventhough she was complaining and moaning about her LP, she wanted all the lights on so she could see Austin better. She did a sticker book with Maw-maw too. She even put on the examination lights, which are so super bright. (This also was another sign that Madi is so close to being well because we have been living in a dark, dark room since Saturday. I even had to put paper up between the cracks in the mini-blinds yesterday).
Somebody is calling me for a diaper change, so I have to go.
God Bless You All!

Wednesday, March 22, 2006 0:44 AM CST

Today was much better. It was still pretty intense, but it was better. Aunt Laura surprised us and popped in at 1:00a.m. to help babysit while Mike and both got some sleep. (I told her that she should have came up earlier for my shift, ha ha! I just got to sleep when she came in. She had to leave at 5:30a.m. to go to work).
I will share good news first. We got Madi's surgical pathology report back today. I will give you the comments that were written on the report.
Small hyphal fragments associated with the esophageal erosion are most consistent with Candida pseudohyphae. There is no evidence of viral cytopathic effect in any of the biopsies, and special stains for CMV and adenovirus are both negative. The mucosal architectural distortion in the stomach, duodenum, and colon biopsises indicates chronic mucosal injury with repair, consistent with ongoing graft versus host disease. Changes of GVHD were seen previously in the gastrointestinal tract on 2-17-06.
So we are happy that the GVHD is healing in Madi and we are really happy that we are not dealing with any other viral infections.
Madi had her EEG of the brain today. We don't know the results yet. She was so scared. When the lady started placing all the wires on Madi's head, Madi asked her if she was going to die now.
Madi is doing a better job dealing with her dysphoria. We try to explain things to her when she is not hearing or seeing anything out of the ordinary.
Madi began the morning by having a really bad episode. She was crying hysterically and telling Mike and I that she knows that we sound like her parents, but we had different and scary faces to her. She was even pulling my hair. She calmed down when I told her not to look at us, just listen to our voices.
She sees strange things in the room almost all of the time. Mainly she sees people and animal faces. She is constantly jerking her head and looking around the room. She is hypersensitive to all five senses. I will list a few of her strange things that she does repeatively. She was doing some of the same things that she was doing yesterday, like holding her breath like she was having a CAT scan. She opens her mouth wide like the doctors are looking in her mouth. She pushes her invisible pain button. She goes through the motions like she is swallowing pills. She cries please don't let my mom have to leave the room. She screams like she is having a procedure done and is being held down. Madi's eyes are totally dialated. They never change when the light is shined in her eyes.
Madi is so sweet. Even when she is happy or meloncholy, she always says yes/no mam and yes/no sir appropriately. She always says thank you and I love you. She apologized to me today because she knows that I am not getting enough sleep. She apologizes when I have to change her diapers.
She thinks that she is a huge burdon to everyone.
We have never given her a reason to even think like she is thinking. We can't rationalize with her. She constantly tells us that she wants to go home. We have to watch her closely because when she gets started on that, she tries to get out of bed. I am so scared that she will rip her central line out.
Madi was looking forward to Maw-maw and Pa-pa coming to visit today. They brought her the Chicken Little movie.
I was thrilled that Madi remembered how to load the DVD on the lap top computer. As soon as the movie started, she got frustrated and couldn't stop pushing all the buttons.
She has no attention span at all.
We all have to laugh to keep from crying sometimes when we see her in her own little world. When she is on Methodone, she is so happy. She waves constantly to all the many invisible faces that she sees in the room. As the drug wears off, she gets extremely aggitated. I had to totally undecorate her room today. All the many beautiful balloons upset her, so I had to get rid of them. I had to take down all her artistic art work down off the walls as well. I had to clean like crazy. She was even annoyed by a tiny tube of chapstick that was sitting on the TV. We had to take the phone off the hook for most of the day as well.
I can end by telling you all some more good news. Madi ate a chicken strip today! I cut it up very tiny for her. She was still on her Methodone high when she was eating. She wanted another one, but we were afraid to give it to her since she hasn't eaten in months.
I want to thank everyone for all the support. Don't worry about us, ya'll are giving us amazing strength with your love and prayers.
Pray that Madi can handle the MRI tomorrow.
PLEASE DISREGARD ANY TYPOS OR MISSPELLINGS. I constantly feel like I am being graded for my rushed updates. Too bad I don't have spell check!

Monday, March 20, 2006 7:47 PM CST

Whew, where should I start? We have so much to be thankful for, even though it was a hell of a day. The best two things about today are that Madi didn't have any seizures or any fever. She did fine with her anti-fungal medicine last night. Madi's speech and comprehension has improved. She could carry on with simple conversations, well at least most of the time. She was able to focus on the TV for a few minutes. She could drink through a straw.
Madi's paronoid schizophrenia is so hard to deal with. She suffers from manic depression as well. Since Madi can verbalize, we know most of the time now what she is thinking, well most of the time. She cried hysterically today because she kept saying mommy is dying. This went on almost an hour. When Aunt Laura, Uncle Randy, Austin, and Maw-maw came up this evening, she cried about them and Mike dying too. Another scary thing that Madi did today was that she replayed events in her life that she has had to endure since she was diagnosed with cancer. She put her blanket over her head and she would hold her breath like she was having CAT scans. She repeatively did this. We were afraid that she was going to pass out or have another seizure. She just couldn't stop doing this. She also told us that she was going to throw-up, so we got her the "throw-up bucket." She would take a sip of water and then she would go through the motions like when she was vomiting from chemo and radiation into the bucket. Another weird thing that she did today was that she was terrified that something was in her bed and was going to get her. We had to change the sheets three times today on her bed. We had to shake out her blankets many times from the little invisble whatever things that she was seeing. She tried to get out of bed many times by herself. We let her walk to the scale, to the couch, and the bathroom. At least she still can walk.
The doctors didn't think that it was safe enough to sedate Madi for the MRI. The MRI is scheduled for Wednesday. She will get the EEG of the brain tomorrow. I know that this will be so difficult for Madi to endure. Since our room was so busy all day long with so many different teams of doctors, we were not able to nap at all. We didn't get the biopsy results back yet from Madi's scope that was done on last Friday yet. Madi had Mike and I on our toes all day long. I got in the shower at 3:30a.m. and was able to get three hours of sleep. I tried to send Mike out of the room several times today. This is really affecting his MS.
I know that tomorrow will be better. We have all of you to thank for all the prayers. So please keep them coming.
I want to thank Benny for bringing up a prayer pager from the Mont Belvieu Assembly of God Church. The pager vibrates when someone is praying for Madi.
Madi's Prayer Pager # is 281-439-1837 press 777#

Monday, March 20, 2006 0:36 AM CST

The CAT scan of Madi's brain from last night showed that she did not have a stroke or aneurysm when she had her first seizure Saturday night. Madi had another seizure about 10:00a.m. on Sunday morning. The second seizure lasted less than 3 minutes. They gave Madi adavan through her IV to bring her out sooner. (This is what she also has a reaction to). Madi didn't go to sleep after her seizure. She was frustrated, angry and violent. She still can't verbalize. Madi's left hand was the last body part that she could move. She gets really scared and can't talk. She went to sleep about an hour later.
The doctors told us that they figured out what Madi has. It is very rare. It is called Posterior Reversible Encephalopathy Syndrome (PRES). This is due to all the medicines and chemos given to transplant patients. This could take weeks or months before Madi is back to her normal self. She acts like a paronoid schizophrenic. She hallucinates, can't verbalize, etc... A few times she has said a two or three word sentence. Sometimes it makes since.
I really feel for those parents who have a child that is psysically and mentally handicaped or who have a child that suffers from epilepsy. The only good news is that this is reversible. But we just don't know who long it will take Madi to recover. She went to sleep about an hour after the seizure this morning. Mike had to run to Crosby and tag in Austin's pig for the Crosby show. Maw-maw and Aunt Laura came up and watched Madi so I could take a two hour nap. I only had about two hours of sleep during the last 24 hours. Mike and I have to take shifts to watch Madi so she doesn't pull her central line out. We didn't let her take her dressing off her line today. They also gave her some meds. to help her with the withdrawls symtoms. She was not as violent this evening. They are also giving her medication to prevent seizures. This can take 72 hours or longer to be more effective, so she could still start seizing at any time. They said that there is a chance that the med. might not even work at all. So far so good. Madi's blood pressure has been still so high that they will put her on medication for that too if it goes up that high again. She is not able to swallow her pills at all. Today I tried to give her a sip of water through a straw and she didn't understand how to drink through a straw. She thought that it was a doctor looking in her mouth with a light. She grabs at things in the air that of course are not there. I think she thinks that I am giving her pills to take. She also pushes her invisible pain button that she no longer has to control her pain. Before she had her last seizure, she squeezed my finger and said, "fix me." She also told Mike, "don't feel good." It is really sad to watch her when she is scared and delusional. We will just pray that Madi will get well very soon.
They decided that Madi will have an MRI and EEG of the brain tomorrow. She will have a spinal tap and bone marrow aspiration on Tuesday.

Sunday, March 19, 2006 7:46 AM CST

The last 27 hours have been so hard for Madi to endure and even harder for me to watch. Madi seemed to get a little better yesterday afternoon, but she still was far from being her normal self. I will just make it short. Madi took her dressing off her central line 4 times. Mike and I have to watch and crab her hands still. Madi had a seizure at 9:00p.m. We went down and had a CAT scan on her brain at midnight. We are waiting to do a spinal tap.

Saturday, March 18, 2006 1:38 PM CST

Today started out worse than yesterday. Madi was sleeping so hard last night. Of course she would wake up for me to change her. About 5:00a.m. she woke up in a lot of pain. She had also been pushing her pain medicine, Fentanyl, button like crazy. The doctor that did the scope yesterday told me that it was so hard to sedate Madi. Madi's pain at 5:00a.m. started out with a headache on the left side of her head. She started having a bad reaction to all the sedation and pain medicines that were still in her body. She is still not back to normal yet. She is suffering from hallucinations and anxiety.
The doctors think that she has a fungal infection again. She will start getting Ampho tonight. They also think that she may have the adenovirus. This is why she is in strict isolation. The ultrasound showed a new density in her liver that the doctors are concerned about. They want to get the infectious disease team involved. They think that she may have a mycrobacteria. The I.D. doctors know Madi very well from 2003.
I will update when I have more time.

Saturday, March 18, 2006 0:13 AM CST

It is after midnight and Madi is back on lasix again.
Friday was one of the longest days of my life. It is over and we got through another rough day. The morning started off with an ultrasound from 7:30a.m.-10:00a.m. As soon as we got back to the room we were having to prepare for the scopes. Mike has been working nights. (He hasn't been getting but about 3 hours of sleep, if that much). Friday morning he received a telephone call that Austin had won a community service award at Houston Fair for being Madi's bone marrow donor. Mike only had about three hours notice to be at the award ceremony. Mike had to rush and pick Austin up from his cousin's house,shower, and drive to Houston so he wouldn't be late for the ceremony. Mike had planned on coming up to the hospital for Madi's scopes.
Austin got his award at noon. Madi was down for surgery from 10:30a.m. until 2:30p.m. Mike and Austin got to the hospital when Madi was just going into recovery. Madi's blood pressure has been so high. Her oxygen level has been so low. We had to change her pain medicine in her PCA pump to Fentanyl. The doctors had a difficult time trying to sedate Madi for surgery. We will have to use something else the next time. Madi got platelets as soon as we got back to our room. Austin stayed and is spending the night with us tonight. It is so nice having both my kids with me. It broke my heart not to see Austin get his award today. He didn't get an award or trophy. They are sending him a check in the mail though. I think that it is $1,000.

Thursday, March 16, 2006 10:35 PM CST

It seems like Madi is taking 2 steps forward and 222 steps backwards. Since Madi's HGB was only 7.8 on Wednesday, she got a blood transfusion yesterday.
We were put back on strict isolation today again. Madi's face is once again so swollen from the steroids. She weighed 59 pounds today. She gained two pounds since yesterday. She was put on lasix around 3:00p.m. She is fixing to be back on them again after midnight. Since Madi's pain is increasing in her abdomen, the doctors wanted Madi to have another CAT scan today. So as soon as the lasix wore off, she was busy drinking all the contrast again. Madi's central line started acting up again and wouldn't work. The special TPN team was called in again to fix the problem. The nurse used HCL acid to clear the line.
The doctors also increased her hydromorphone too. But she had severe itching due to the pain medicine. The benadryl didn't seem to help. She was so miserable doing the scan today. (As soon as she got on the table for the scan, we had to leave the room so an E.R. patient could be done before us. Little things like this happened all day long. Madi's pump had several malfunctions today as well). She did a good job holding still and not scratching too much. She has been in so much agony all day and night. The doctor just gave her something else for the itching.
Madi was really upset when they told her that she has to be scoped again tomorrow. (She had just told Aunt Pat to pray so that she wouldn't have to get scoped tomorrow. As soon as the nurse told us that it was scheduled for 11:30 a.m., she looked at Pat and said, "I guess you didn't pray hard enough, Aunt Pat."
Madi has been watching the clock all night since she can't drink after midnight. She has been so nervous and upset. Madi's blood pressure has been so high the last couple of days as well. I can't wait until tomorrow. It has to be better than today!

Tuesday, March 14, 2006 6:21 PM CST

I didn't get to see Austin show his pig yesterday, but I was told that he did really well. He got sifted. One judge liked Austin's pig a lot and one didn't. Maw-maw came up and watched Madi for about an hour or more while Uncle Philip and cousin Reed took me to see Austin.
Madison got really upset yesterday afternoon when the two GI doctors came in and were talking about having to scope her again. She cried for the longest after they left the room. I tried to calm her down as well as I could. She hasn't been that upset since she had to drink contrast for her last CT scan. I told her that we were just going to pray about it and that everything would be o.k. I told her that when her dad came up on Tuesday I would run to get her some surprises from Target. About five minutes after we prayed about doing the scope again, a doctor came into the room and said that Dr. Krance and Dr. Meyers didn't want to scope her yet, they want to put Madi back on all the steroids again. I told Madi our prayer had been answered.
Since the steroids began last night, Madi has not had to take Tylenol for a fever. She has been staying around 99 degrees. Today was the first day that she has eaten something since last Thursday. She only ate two fries, but that's a start.
Last night Madi threw-up one of her meds on one of her very favorite blankets. It had bright orange stains all over it, so I washed it this morning. Mike dried it for me while I went to Target. Madison was so excited when her two big cousins, Amy and Renae came to visit today. She had her monthly breathing treatment today so the cousins and I had to put masks on during her treatment.
Madi has been playing her new computer game all afternoon that I got her today. It is called Disney's Learning 1st & 2nd grade.
Madison is fixing to get her monthly IVIG treatment. She told me that she hates getting her infusion when she is trying to sleep because the nurse has to keep her blood pressure cuff on during the three hour infusion and then one hour afterwards. (She never forgets anything).

Monday, March 13, 2006 1:33 PM CST

Madi has been running a fever of 102 all weekend. Tylenol doesn't seem to phase her at all. She is in good spirits even with a fever. Maw-maw is coming to baby-sit so I can go watch Austin show his pig later this afternoon.
The doctors can't seem to find the source for the fever. They want the GI doctors to scope her again to see if the Graft Vs. Host Disease is the problem again. They will scope her in the next couple of days. Urology is still involved. The doctors did Madi's RSV nasal wash again and it was negative. Madi's counts are still going up and down. So far, all the blood, urine, and stool samples are not showing any type of virus or bacteria infections.

Saturday, March 11, 2006 8:33 PM CST

I would like to thank BPS for a wonderful bake sale again!
I would like to thank everyone for the brisket benefit today too. Thank goodness Ma-maw and Pa-pa brought me something to eat this morning. The brisket was so tender and delicious!!
We are just so blessed to be part of such a wonderful community.
Madison had fever all day today. Every time that she has fever, the nurse has to take blood for cultures to see if the lab can figure out what is causing the fever. Madi's one central line stopped working today, which was another major problem. The TPN nurse, Teresa, had to flush the line with a certain kind of medicine from the pharmacy. It started working right away. We had to wait about an hour for the medication though. Teresa changed Madi's dressing on her central line while we waited. Teresa remembered us from 2003. She said that she was neighbors with one of my good friends, Bobby. It took me a few minutes to realize that she was talking about Roberta Baca. (She was so excited to hear about Wyatt getting to be a big brother soon).
Madi just took some more Tylenol along with some other pills. She only had one tiny bite of cheesy bread today. Mike and Austin popped in for a minute and brought Madi Dominoes about 7:30p.m. They have been busy taking care of Austin's pig. He will show it on Monday.
I want everyone to exhale and have a wonderful and relaxing Spring Break!

Friday, March 10, 2006 1:35 PM CST

Madison walked in the hall yesterday with her P.T. It was such a wonderful sight! I took pictures. I promise I will get new pictures for all to see next week. Today Madi's muscles were really sore when she had P.T. When the P.T. asked Madi if she was ready to start, Madi asked her if walking was going to be involved? The therapist laughed so hard. She walked down the hall and she played basketball with an enormouse ball and basketball hoop. She had to score 20 points before she could quit playing. The hardest part for Madi was bending down to pick up the ball.
Madi still has her bladder problems. The urology department is now involved. Madi only takes three different medicines by mouth. She just took Dicyclomine and Methodone. She just got Lansoprazole and Voriconazole through her IV.
There is a chance that we might be discharged at the end of next week, maybe.

Wednesday, March 8, 2006 4:53 PM CST

Sorry it is taking me so long to update. The telephone cord to get on-line was broken on the best side of the room. I was always in the nurses way when I would get on the other side of the room. Today I have been avoiding getting on-line because I have been waiting for Mike to return an important phone call. He had to leave work and go see about his dad who is in ICU in Baytown. I have been waiting all day for him to call me. (He forgot his cell phone at home this morning).
Madison has been having two very good days! HEY! She has been eating french-toast sticks. She is getting so much stronger doing her exercises with her PT. The doctors are wheening her off her medicines. She use to take about six pills every six hours. The last few days it is less and less. They are also cutting back on her antibiotics in her IV as well. The gamma strep d. never grew anymore. They did a nasal wash today and Madi was negative to RSV! So the nurses, doctors, etc... don't have to wear plastic gowns and mask to enter the room. (We have a friend who had a transplant about two weeks before Madi and she also tested positive for RSV a month ago. She is still having to do eight breathing treatments at home a day. Madison has not been around her at all. I talk to her mom all the time though). Our other good little friend has also been back on this floor for two weeks now. He has had lots of fever and they still don't know what is causing the fever.
I found out some really depressing news last night. The little four year old boy, Victor, who had his transplant on the same day as Madi, died last week. Madi and I got to know him and his parents during the four days that we went to M.D. Anderson for radiation. The staff tries to keep death here very confidential. Two bmt boys went down to ICU when we were in here on Sunday, Feb. 19th. I missed a lot of Extreme Home Makeover because the nurses were crying and I was trying to comfort them. Both boys are still in critical condition. Please keep everyone else in your prayers along with Madi.

Sunday, March 5, 2006 6:12 PM CST

Madi's counts continued to fall, so she had a blood transfusion on Friday. She still has physical therapy seven days a week. Today is the first day that she didn't cry from the pain during or after therapy. She has had different therapist every time, so I am hoping that she will get use to them soon. I am seeing a lot of improvements in her walking. (I have noticed that Madi rolls her eyes a lot during her therapy, but she is always so polite).
Madi still suffers from diarrhea. Her bladder is still distended and it is so very difficult for her to urinate.
She suffers from bowel wall edema. She has lost some fluids that she was retaining earlier during the week. She normally weighs around 55 pounds. Today she weighed 60 pounds. She had been up to 68 pounds last week. She is making improvements, but it is so very hard for the doctors to treat her without harming her body in some other way. We are wheening her off the Hydromorphone. They are having to give her another medicine to help with the pain and to also help with the withdrawls. It has made her very irritated and agitated. She was in a much better mood today though. Austin and Mike spent the day with us. The infectious disease lab is still growing a virus that Madi tested positive for a few days ago. It is some sort of gamma strep. We should know soon about this virus.
The doctors are like family to us. They are constantly popping in on Madi. Sometimes Dr. Meyers comes in alone and sits and talks for a long time or sometimes four doctors come in at once. There is so much gray area that is unknown to them. They are really surprised that Madi has such a severe case of Graft Vs. Host Disease this late after transplant. We don't know for sure just how long Madi has even had it. She didn't have a lot of the obvious symptoms.
It's time for Madi to take six pills, so I will go for now.
Thanks for all the love and prayers!

Thursday, March 2, 2006 5:56 PM CST

I only thought that things would slow down after Madi finished all her breathing treatments in the tent. Boy, was I really wrong about that one! Madi started running fever of 101 degrees. Madi's bladder almost stopped working and was backing up. Her hemoglobin and platlets started falling really quickly. She has been in severe pain in her tummy. She still has a lot of diarrhea. (Just to name a few things). Yesterday she had an x-ray and an ultrasound of her tummy. We thought that she was going to have a CAT scan today, but they just told us that she will get one in the morning. The doctor is thinking that the Ribavirin, which was her medicine in her breathing treatments, is causing all her problems right now. She also had an infection in one of her lines. We will know more tomorrow after the scan.
Madi has been working with a physical therapist for the last few days. She will be coming to see Madi seven days a week. Madi usually cries when she leaves. She is so sore and tired. Madi still is not walking by herself. She is almost there.
Mike finished all his testing today and the results are in. Everything is fine. His urologist told him last month that he thought that Mike had bladder cancer. All of Mike's problems are related to his M.S.
Four doctors just walked in, so I will go for now.

Tuesday, February 28, 2006 3:16 AM CST

Madison is getting her 14/15 breathing treatment right now. The treatments should only last two hours at a time, but they have been lasting much longer due to the equipment not working. It takes them about 30 minutes to set up and about 10 minutes to clean up afterwards. Madi had to wear her mask over three hours for her last session because they had to get three different pumps to work while her treatment was started. Madi's oxygen saturation level was falling way below what it should have been as well. Every extra minute in the tent really makes a difference to Madi. She watches the clock and only wants exactly 2 hours of treatment and no more. She should only get one more treatment after this one right now. I will not miss these wee early morning treatment times at all.
Madi is still retaining so much fluid. She weighed 68 pounds today when she normally only weighs 55 pounds. She can barely move. She looks terrible from her head to her toes. The lasix helps some. Mike came up on Monday after he took Austin to school. He stayed until he had to pick Austin up from school. About 3:00p.m. on Monday Madi told me that she could stay by herself while I ran to Sonic to get her some french toast sticks. I laughed and told her that I wouldn't leave her alone and that I didn't have a car at the hospital anyway. As soon as Mike got Austin, he was driving back to the hospital to give Madi her french toast sticks. (She hasn't had a bite of any type of food in nearly three weeks). She took about three bites but it hurt her mouth really bad. She apologized for not being able to eat more. She did drink a few ounces of her milk from Sonic and that is the first time that she has drank milk since early December! The doctors have cut back a lot on her fluids in her TPN. She got a two hour infusion of Albumin and they also increased it in her TPN. (This protein is so important in order to help her body heal all the damage due to the Graft Vs. Host Disease. The doctors said that this will take a long time for her body to recover because the damage is so severe). Madison actually colored a picture on Monday afternoon with the child life specialist that works in the bone marrow transplant unit. This is her first activity since we have been in the hospital. No, I take that back. On Saturday Madi recieved a special gift from her CCE Sunday School class. It was a Build-A-Bear with lots of clothes and accesories. She dressed the cute little Bear in a beautiful red and white dress that had hearts on it. Because of all of Madi's itching on Saturday, the doctors decided to take the continuous drip off of her PCA pump. She only gets pain medicine when she pushes the button. And she does push the botton alright. I think that she is more alert since we are wheening her off some of the pain medicine. It is just so hard for her to even sit up in the bed since she is so heavy right now. Her skin is stretching everywhere like crazy. Looking at her tummy reminds me of when I was pregnant. Things are slowly coming around though. They are still slowly wheening her off the steroids.
I want to thank Mrs. Boring and all the kids in Madi's Sunday School class for such a wonderful gift. Build-A-Bear is one of Madi's favorite places in the whole world! She was too tired to unwrap all the presents, so I did it for her. Or maybe she didn't want to rip open the gifts because each box was decorated so pretty by a child.
I also want to thank all the members at Cedar Bayou Baptist Church in Baytown that sent Madi Valentine cards in the mail to the Ronald McDonald House. She loved getting mail. (This is the time when all the vomiting and diarrhea was starting, so please forgive me for not saying thank you sooner.
I had a grandma of a second grader at BPS call me on Monday and told me that her grandaughter wanted to give Madi all her birthday money. I was truly touched by this act of kindness, but it makes me sad that everyone wants to give Madi so much. So please, you guys, just keep the prayers coming! That is what we need so much of still!

Sunday, February 26, 2006 5:39 PM CST

It's been a kind of a rough weekend for us. Madi has been doing really well with her Ribavirin breathing treatments.
She has been in a lot of pain and discomfort though. All the side-effects have caused her to retain a lot of extra fluids. She normally weighs 55 pounds, but lately she has been weighing around 63 pounds. She has been on lasix for several days now. She has had some really bad itching from all the Hydromorphone as well. She couldn't even stand up by herself on Saturday. She is very weak today as well. The nurse put in a call for some P.T. and O.T.
Austin had a slight sniffle this weekend, so he could not visit us. Mike spent the night last night and he was a big help to me. Madi is learning how to go back to sleep during her 1:30a.m.-3:30a.m. breathing treatment. I watch her closely until the respiratory guy comes and turns her tent off. She gets two hours at a time of treatment and then she is off for six hours. We will be in the hospital until Thursday, if not longer. When we were told that Madi would have to stay in the hospital for one night, we never thought that we would be here for two weeks or more!
I just want to reiterate how much we appreciate all the love and support that we have been getting from everyone!
P.S. Madi was so excited to see her teacher, Mrs. Breeden on Saturday! She brought the beautiful banner from the last sock from the boys and girls at BPS.
Thanks boys and girls. Ya'll are so special to us!

Saturday, February 25, 2006 1:19 AM CST

After the doctor called me out in the hall on Thursday and told me that Madi had RSV (respitory syncytial virus), I quickly had to pack all our things out of the room so that we could move to a more isolated room, room #(8)46. What is so ironic about this room is that back in April 2003, when Madi was first diagnosed with AML, we had to evacuate to this same room. The 9th floor is the cancer floor. When Madi was first admitted back in 2003, she was in room #(9)01. The policy was that a patient had to move to different room after 30 days in the same room on the 9th floor. So in April 2003 she moved to room #(9)03. About 3:00a.m. I got up to go to the bathroom. When I opened the door to the bathroom, a river of water, from the toilet, gushed throughout our hospital room. The entire room had about two inches of water and it was still rising. I called for the nurse and started picking up everything that was on the floor. Madi had so many things since it had been Easter and all. The nurse wheeled Madi's bed out of the room. Since all the rooms were full on the 9th floor, we had to come to the bone marrow transplant unit. This room, #46, is so very tiny. I was told that we could not go out in the halls at all. I thought that all the rooms on the bmt floor were going to be this small. I knew that I would go stir crazy in such a small confined room if Madi needed a transplant. We only stayed in this room for about 8 hours. We were moved back to the 9th floor after a room became available. (The reason why our room flooded on the 9th floor is because the washing machines on the 16th floor were directly above us malfunctioned).
Now getting back to February 2006, Madi is now in a demistifier canopy tent being treated for her RSV. She has a mask on and is inside a clear plastic tent that covers about 1/3 of her bed. She stays in it for 2 hours at a time and then she is off for 4 hours. RSV infection is a viral disease of the lungs. It is just a common cold to you and me, but can be deadly for infants or those with weakened immune systems. The doctors are commending me for being so observant with Madi's little cough. It wasn't a bad cough at all, but I insisted that they test her for something, so they did the nasal wash. The x-rays show that she didn't have pneumonia yet, so we caught the RSV very early. She will be treated 5 days with the mechanical ventilation respirator. She is getting use to the mask blowing in her eyes. When her treatment is over, I have to wash her face with a warm rag because the medicine leaves a white residue on her that is very hard to get off. (I had to reassure the doctors that I am not pregnant so I can stay in the room with her during her treatments).
Treating Madi for Graft Vs. Host Disease and RSV is very tricky. The meds. for GVHD lower what little immune system that she has to fight the RSV. The doctors are slowly wheening Madi off the steroids. The morphine was causing too much itching, so we had to switch to another pain medicine in her PCA pump. Every morning when she wakes up, she tells me that she feels worse than the day before, but as the day goes by, she tells me that she feels better. Madi wants me to change the channel on the TV so I better go for now.

Thursday, February 23, 2006 5:54 PM CST

Madison had a nasal wash today. The results show that Madi has RSV in addition to the Graft Vs. Host Disease. We will be going shortly for another x-ray. Madi will get Ribavirin breathing treatments in a tent for at least 5 days. I will update tomorrow.

Wednesday, February 22, 2006 6:26 PM CST

Madison is doing a little better. The doctors increased her morphine dosage again yesterday. She has been dozing off and on a lot throughout the day. We will be here until Friday, if not longer.
Madi is not eating anything at all, but she has been taking sips of: apple juice, grape juice, Sprite, lemonade, Capri Sun Fruit Punch and water. She told me yesterday that she didn't like the hospital's water and that she wanted me to go to the gift shop and buy her some "Avon" water. I think that she meant Ozarka water. She acts so funny sometimes on morphine. It is so funny when she has a hiccup, because I instantly jump up thinking that she is going to throw up. She slurs her words and puts her hand up in the air and says," Mom, I am o.k. Mom, I am o.k., I am not sick this time." And she is so funny when the doctors come in and examine her everyday. He pushes on her stomach and asks her if it hurts. When he leaves she tells me that,"You would think that he could remember that it hurts, I just told him that yesterday." (We have had new doctors this week). She is always so polite and just tells him, "Yes sir, it hurts."
I am so touched when I read about what everyone is doing for Madi and our family. It really makes me cry, so please everyone, stop making me cry! YOU CAN KEEP PRAYING THOUGH!

Monday, February 20, 2006 6:33 PM CST

Madison is feeling a little better today. She got her PCA morphine pump at 7:45p.m. last night. Today the doctors increased her morphine to a constant drip and she can also push the button if she needs to do so for the pain. She hasn't needed any blood products since she was discharged from the hospital the first time in January. All of her other counts are yo-yoing up and down though. I know that we will be here at least until Wednesday if not longer.
I just want to say thanks again everyone for everything that ya'll do for us. We are truly touched by everyone's acts of love and kindness. I wish that there was a real way to show you just how much that we appreciate each one of you!

Sunday, February 19, 2006 6:24 PM CST

We will be in the hospital several more days. Madi's diarrhea is causing most of her pain, which is due to the Graft Vs. Host Disease. They are having to increase her fluids even more. (They collect every drop of everything that comes out of Madi and then they weigh it).
She will be getting a morphine pump to help with the abdominal pain soon. (The doctors ordered the PCA pump this afternoon, but the bmt pharmacist got pulled to go to another floor for a while). Madi sits forward and rocks a lot when she is really hurting. Mike and I have been rubbing her back a lot to help with the pain. Austin and I were able to take her favorite blankets away from her and wash them on the 16th floor today.
Don't forget to watch Extreme Makeover at 7:00p.m. The Kubena family will be on tonight. I will update tomorrow.

Saturday, February 18, 2006 1:42 PM CST

We are in room 41 on the bone marrow transplant floor. It looks like we will be here for the entire weekend. If Madi can swallow a lot of pills and keep them down tomorrow, we might get discharged tomorrow evening. She continues to vomit and have diarrhea.
Madison was very brave for an upper endoscopy (esophago-gastro-duodenoscopy) and a lower endoscopy (colonoscopy)on Friday. The final biopsy reports are not back in yet, but it does look like the main problem is the Graft Vs. Host Disease, that is so common after transplant. She has some ulcers as well. She is getting all her meds. through IV today except for Loperamide.
When Madi found out that we had to stay at the hospital, she was so funny because she said that we would not be hearing all the messages at the Ronald McDonald House like, "the van will be leaving in 5 minutes for the Texas Medical Center," and then they announce again, "the van is now leaving for the Texas Medical Center." Madi is always laughing at the announcement that "the van is now leaving for the medical center." She always says, "Mom what are you suppose to do if the van is leaving and you are still in your room, chase after it or what?" Another announcement that we hear a lot is, "The van will be leaving for the grocery store in 5 minutes" and then, "the van is now leaving for the grocery store." The loud speaker is always paging people all day long as well. I thought ok I can think of some positive things about being in the hospital as well, like I won't have to be responsible for mixing Madi's TPN, flushing her central lines, priming her tubing, hooking it up, changing her dressing, etc... Madi and I were up a lot as usual last night, but we forgot about how loud it can be at night in the hospital. Madison's IV pump can get extra loud at times, especially when the pump malfunctions. The nurse and PCA are constantly coming in the room as well. As soon as we can get back to sleep, the alarm is going off again. We can laugh about it during the day, when we are not so tired and sleepy. (LOL)
I will update tomorrow.

Friday, February 17, 2006 12:43 AM CST

We are at the hospital. Madi has had constant vomiting and diarrhea all week. She is getting fluids now and then they will take her down and the GI will scope her to see what is going on. We are being admitted to the hospital. We should be able to be discharged tomorrow.
I will update tomorrow.

Tuesday, February 14, 2006 11:09 AM CST

Happy Valentine's Day To Everyone!!!
Madi is sick and Austin's pig is sick now too.
Both of them have been up all night with severe diarrhea. Madi also has a lot of vomiting as well. She woke up around midnight. We watched DVDs all night since she was running to the bathroom and I was busy bringing along her TPN and pump. We are at the clinic now. Madi has been put into an isolation infusion room to protect the other kids at clinic. We are still on the edge of being admitted again. I just talked to one of our transplant friend's dad and most of the gang that had transplants in December are back in the hospital. Since the 8th floor which is bone marrow transplant kids only, is full, all our other friends had to go to the (all kinds of cancer) 9th floor. Most of the December transplant kids have been in the hospital five or more times during the last few months, so your prayers are keeping us out of here for now.
Madi is getting fluids, antibiotics, and she will get steroids in a little while. She will not get Austin's T-cells until she is better. The doctors think that the Graft VS. Host Disease is the problem. The doctors are also concerned with Madi's not eating yet. They want to put her to sleep and send a camera down her throat to see what is going on for sure. I don't know yet when they will do this procedure. The doctors want to put Madi back on TPN 24 hours a day. She has been getting 18 hours condensed into 12 hours.
Madi has to go to the bathroom, so I have to go!

Monday, February 13, 2006 11:29 AM CST

Yes, we are alive and well. Right now we are at clinic. This was an unexpected visit. Madi has a temp. of 100.8 right now. If it gets to 101 we have to be admitted to the transplant floor. She has a lot of little symptoms. She still has vomiting and everything else that comes with that. She has a little cough. Right now she is being treated with fluids and some antibiotics (Vancomycin and CefTaZidime).
During the last couple of weeks Madi has been busy swishing and spitting Nystatin. She developed a fungal/yeast infection. She still isn't eating much. Friday night was her last night to be on Lipids (fats). The doctors think that she will get hungry. She still is on TPN 12 hours.
Madi had another CAT scan on Friday. I just got the results and it looks much better from the previous scan!
Last Thursday she got an IVIG infusion. (She will get one a month).
On Valentine's Day Madi is suppose to get another gift of love from her brother. She will be infused with his t-cells. I don't remember if I told ya'll about some of the experimental research that we are doing? At the end of November the doctors took about 50 extra viles of Austin's blood for this research that we are participating in. The proper name is H-14097 Administration of virus-specific cytotoxic T-Lymphocytes for the prophylxis and therapy of adenorvirus infection post allogeneic stem cell transplant. Madi will be one of the first kids out of 18 kids to participate in this trial. This research study will last 15 years. Austin's T-cells have been exposed to the virus called Adenovirus (AdV). AdV is a virus that can cause serious life-threatening infections in patients who have damaged immunity. It usually affects the lungs, gut, liver, pancreas and the eyes. In healthy people AdV usually just causes symptoms of a common cold. No treatment has b een shown to prevent AdV disease. One drug called Cidofovir has been said to help people with this disease. However, Cidoforvir has many side effects and often doesn't even work. It can cause severe kidney problems too. What is so neat about this is that Austin's T-cells have been trained to attack adenovirus-infected cells and are called Adenoviral-specific cytotoxic (killer) T-cells or AdV-CTL. The lab has been busy removing the momonuclear cells (MCs), which contain T-cell and Monocytes. Then the lab adds a specially modified adenovirus to the Monocytes, which will then be trained to kill cells infected with AdV. The lab will then treat these cells with radiation so they can't grow. They will then be used to stimulate the T-cells; this will further train the T-cells to kill cells infected with AdV. They will also do the same with the virus called Epstein Barr Virus (EBV). There are 51 types.
The doctors are so excited about this study. They hope to make this a standard treatment for all transplant kids.
Changing the subject, Madi and I went to Crosby on Saturday! We went to Maw-maw and Papa's house and we went to our house for a little while. Mike has been wanting me to see Austin's pig that he is showing for 4-H at the San Antonio show. Mike and Austin left at 2:00a.m. Sunday morning. He will show his pig on Valentine's Day.
(Mike is needing extra prayers these days. He will be so mad at me for writing this, but he has been undergoing several tests. He had a CAT scan on Friday too. His urologist found blood and sugar in his urine).
Changing the subject for the last time, we want to thank all the boys and girls and staff at BPS for the dance that they had last Friday for Madi!!
(Madi has to go to the bathroom again right now)

Wednesday, February 1, 2006 5:30 PM CST

Madison and I were so home-sick, so we went to Crosby for the day yesterday. My mom and dad picked us up and Mike and Austin brought us back to the RMH. (He had to change the oil in my Tahoe). It was a wonderful day! It was like a dream! Madi and I enjoyed picking Austin up from DREW when he got out of school. (We were so excited to see Cali Hall waving to us)! We are still enjoying just looking at trees and grass since we got out of the hospital, we really loved seeing the country!
Madi continues to do well. She has good days and bad days still. Today she ate one fish stick and drank a little juice for me. We go back to the clinic in the morning.
She has been staying busy filling out Valentine cards for kids at BPS. She is so excited about another holiday again.
I found a place on the 3rd floor at the RMH where I can get on-line from the hallway. Everyone else has discovered it too, so it stays busy out here. Madi is in the room by herself, so I need to get back to her.
THANKS FOR ALL THE LOVE!

Friday, January 27, 2006 11:57 AM CST

Madison is almost finished with her Amphotericin infusion. She had an 8:30a.m. appointment but they are extra busy today so we are in a small room. (Madi prefers the infusion room because they have mini televisions with cable)
She is taking a nap. All the pre-medications put her to sleep.
I hope we are we are out by 1:30p.m. Karen H. is coming to the House to visit us. Her daughter, Hannah, past away two years ago from bone cancer. (We met so many people when Madi was in the hospital in 2003)
Madi threw-up five times yesterday before noon. She didn't eat anything the entire day. She only took a few sips of water to swallow pills. She was excited that her dad came to spend the night with us. We changed her dressing on her central line. (The dressing gets changed once a week)
I was really excited because he prepared all the TPN stuff and Lipids for me, primed her tubing and connected her to the pumps for me. Mike goes back to work on nights tonight. Austin is coming to spend the weekend with us again.
I want to thank everyone for offering to buy or make whatever Madi wanted wanted to watch on tv. Madi wants to thank Claudia L. for making a DVD of the Disney Channel and Mark S. for making a DVD of Raven. And thanks Aunt Laura for taping the Saddle Club and Disney's High School Musical.
Mike bought a new VCR so she can watch videos again.
I wish everyone a safe and happy weekend!

Wednesday, January 25, 2006 11:50 AM CST

I am so glad that I can change the background! I tried an hour ago, but I couldn't get on. We have good news today! Friday will be Madi's last day to have to get Ampho (anti-fungal medicine) She will have another CAT scan in couple of weeks to see how things are going. The doctors also want to start wheening Madi off her Cyclosporin. She has been taking 300 ml. a day. She will only take 150 ml. now. ( I am glad to get off this med. because this is what destroys white blood cells. It was very important to fight graft vs. host disease). Madi has been peeling and shedding her skin. She has really been peeling the skin off the bottom of her feet. It is so thick. She still isn't eating much.
We were "Ty watching" for about three hours yesterday. It was fun watching all the re-takes. The show will air next month. My digital camera batteries were low, so I only got pictures yesterday with my "throw away" camera. My good friend Dana is going to down load pictures for me on this site next week.
THANKS FOR ALL THAT YOU DO FOR US!

Wednesday, January 18, 2006 10:04 AM CST

I am so sorry that it has been so long since my last update. I can't get on-line from our room. We got out of the hospital late last Wednesday. We are in room 43 at the Ronald McDonald House. We have been staying so busy during the last week. Home health care came out the first three nights to train me on different procedures that Madi needed since she is out of the hospital. She still is not eating or drinking much at all. She is on on Lipids (fats) and TPN (nutrition)for twelve hours a night. (18 hours condensed into 12 still)
Madison was taking almost 20 pills a day when we got out of the hospital. So much time was being spent to calm her tummy down so she could keep her meds. down. She still has vomiting and some diarrhea. We have been working through all the kinks to make things better for Madi. Mike bought her an umbrella stroller. The doctor said that she needed a wheel chair, so he told us just to take one from the hospital since it would take home health care up to a month to deliver one to the house. Doctor K. said that the Parvo was causing all of Madi's feet problems. She just started walking to the bathroom during the last couple of days. (My back is so happy) She still wears pull-ups at night since she is hooked up to two IV lines. I change her about every hour or so at night. She still has control of her bladder, thank goodness. She wakes me up right before she has to go.
Today is the first day she has been able to wear her socks and shoes since before Christmas. (She has been wearing my big socks)
The doctors switched two of her medicines to IV, so I was giving those to her before I would run her TPN and Lipids.
Madi had a CAT scan yesterday. The results showed a lot of improvement from the scan two weeks ago, so we were able to stop the two antibiotics that I was given through her IV.
The doctor also found a pharmacy that was able to increase the ml. amount. She was taking 12 pills that were only 25 ml. each. Now she has 1 pill that equals to 100 ml., so she doesn't have to take so many pills. She still has her Zofran for her tummy and Hydromorphine for pain. We try not to give pain pills too much if she doesn't want to take it. (She would rather be in pain than to swallow more pills)
We have been coming back to the hospital about 6 days a week now. (We even came to the hospital on Sunday so they could do Madi's blood work) It is so nice being so close to the hospital. We are adjusting to the RMH. Food and drinks are not allowed in the rooms. They have a huge kitchen area. Every family has specific responsibilities at the house. We have to unload dishwashers #2 and #4. The hardest thing for Madi and I is that they don't have TVs in the room. Mike brought up Madi's from home. (The VCR ate her Saddle Club video a few nights ago) She has been watching DVDs. We don't have cable or DISH. She is having withdrawls from the Disney and Nick channels and I am having withdrawls from the new's networks. I miss not catching up on the world news when Madi goes to sleep every night.
Mike has been coming up a lot and helping me out with everything. Austin stayed with us Saturday-Monday. Madison loved having her brother around. (Our room has two double beds) Mike and Austin came up for a little while to help me do all the IV meds last night.
The RMH has 50 rooms. Only four are allowed to stay in a room, so sometimes, there may be up to 200 people around, plus all the volunteers. Madi always has to wear her mask. We try to stay away from the crowds. They do have 3 TV family rooms that you have to get a key for, so sometimes Madi can still watch some of her favorite shows, if a room is available. We had some excitement at the house yesterday when we returned from the hospital. A little girl that had a bone marrow transplant almost 100 days ago won the ABC's home make-over show. You know the show that Ty P. is on, don't you? When Mike pulled us to the front door yesterday, after the hospital, the show's big RV was by the front door. (It's the RV that Ty yells, "bus driver, move that bus!") The camera crew was all over the house. Ty didn't mingle with anyone but the family. The kids did take a group picture right before he left in his white Hummer limo. Madi was actually standing up wearing her pink mask. The family will get to see the new house in two weeks. I think the show will air in about 6 weeks. Madi's doctor should be on the show too. (Dr. K. is wonderful)
Right now, Madi is getting her anti-fungal infussion, ampho., so I discovered that I can get on line from the infussion rooms. She only gets ampho 3 days a week now! She needs help going to the bathroom now, so I will update ya'll on Friday.
THANKS FOR ALL THE LOVE AND PRAYERS!
P.S. Madison was so excited that her first grade teacher, Mrs. Breeden, brought her homework on Monday. We were at the hospital and missed her, but Austin was proud to accept her homework. She has been doing homework as soon as we get back from the hospital everyday. I am sure today will be the same. I am so happy to see that she still has neat handwriting too!
THANKS FOR EVERYTHING !!!

Monday, January 9, 2006 4:13 PM CST

We were out of our room, 845, for about three hours today. We had to wait about two hours in PACU before it was Madison's turn. (We kept getting bumped from our time slot). Madison loved "watching people" in the large waiting room. Of course she hated wearing her tight mask though. She was a brave girl as usual. (She hates being put to sleep).
Madison has been on anti-fungal medicine for a week now. She has been having lots of problems with her feet. At first, her feet were just itching, now they burn. She has blisters on the bottom of her feet. She has been waking up after midnight every night crying because of the pain.
Because Madi had a "shaking reaction" after her first dose of Ampho, she has to get Demerol before and 1 1/2 after the Ampho starts. (It runs over three hours). So after her anxiety last night again about her feet, I think that the Demerol is a big part of her emotional problem in the middle of the night. (She cries and rocks back and forth and claps her hands a lot)
The doctors were having a round-table meeting at 3:30p.m. today. They are trying to figure out what is going on with Madi's feet. They really want us to leave the hospital soon. Other bmt patients need this room. They are talking about us going to the Ronald McDonald House this week. Nothing is set in stone. I have to call the House tomorrow. They may not have any vacancies. Madi will still need to come to the hospital 5-7 days a week still. (The Ronald McDonald house is only $15.00 a day)
Madison has been drinking milk and eating a few french-fries! Yes, I did say eating. She still will have to swallow and keep down some pills before we can be discharged.
THANKS FOR ALL THE PRAYERS STILL!

Thursday, January 5, 2006 3:18 PM CST

Madison is not running fever, but she feels like she has the flu. The GCSF (it's the med. that brings her counts up fast) has a lot of side effects. She should be able to get off GCSF in a few days. She did sip some milk today, but she threw it up. She has been on Lasix for the last several days. They weigh Madi several times a day and night, and if she is retaining fluid, she goes on lasix. She had a chest x-ray and it was good.
The results from her CAT scan showed some things in Madi's lungs. Since they don't know if she has a virus, bacterial or fungal infection, they are treating her with everything possible. She is on an anti-fungal medicine, which the nurses nick-named, "Ampho-terrible." I found this out back in 2003 when the doctors didn't know what Madi had then, so she was on Amphotericin-B. She had a terrible reaction one night back in 2003. She spiked a fever of 107 and started seizing.
Madison started shaking really bad the first night that she was on Ampho again, which was Monday night. The nurses always pre-med. with about four different things before she can get the anti-fungal. I have to watch her closely while she is getting the Ampho. The Ampho finishes around 1:00a.m. so I have been drinking coffee late at night to help me stay awake. Tuesday night, I watch the news about the Sago Coal Miners for about three hours. I was devastated Wednesday morning about finding out what really happened.
I really enjoyed watching the Longhorns win last night! That's been the best thing that I have watched on tv in a long time. (I loved seeing the guys in Iraq watching the game)
Madison's ANC has been over 500 for three days now, so the doctors say that Madi has engrafted Austin's marrow 100BR>She is off the restrictions of not getting to eat fresh fruits and raw vegetables. I have missed not getting to eat salads and my fruit! She still can't have any plants or live flowers in the room. Madison is even off the restriction of not getting to eat restaurant foods! We just have to be very careful of where we get food. How I wish that she would want to eat Whataburger or Sonic!
Madi has a bone marrow aspiration on Monday.
I hope everyone is enjoying getting back to work and to school after the holidays. I enjoy reading all the comments on Madi's web page. I am very excited to see where everyone is from. If you are a new reader, I would love to know how you found out about Madi.
I would love to welcome, Micheal, who is an Army specialist in Iraq!! On behalf of all of Madi's fans, we want to THANK YOU FOR THE JOB THAT YOU ARE DOING IN IRAQ!!!!!!!!!!!
PLEASE TELL EVERYONE THERE THAT YA'LL ARE IN TEXANS THOUGHTS AND PRAYERS. If anyone needs pen-pals or e-mail pals, I know several kids and teachers that would love to correspond!

Monday, January 2, 2006 11:44 AM CST

HAPPY NEW YEAR!
Madison has been running fever up to 104 for the last several days. She has had so much vomiting too. It is such a chore to get Madi to take her Tylenol. She begs me not to make her take it. It is a constant battle to try to keep it down after many attemps. She takes 1/2 cc at the most at one time to try to stay down. She has a dry cough and a runny nose. Because the fevers are making her so weak, she has had to start using diapers. She will get a CAT Scan tomorrow. She will go to PACU on Friday for a BMA. She will get an x-ray and platelets today. She will probably get blood tonight. Today is the first day that her ANC is over 500. Engraftment seems to be going well.

Friday, December 30, 2005 3:43 PM CST

Please forgive me for not updating sooner. The server has been down for a few days. Madi continues to do well. Her counts are slowly coming up. On Wednesday (day 12) Madi got platelets from her dad's friend at work, George.
She enjoys playing on her favorite toy from Santa, a Leapster L-Max. She has been working in her workbooks and playing on the computer. She has been laughing a lot more too. She isn't eating or drinking anything though. The doctors want to wheen her off the morphine pump and start cutting back on her TPN and Lipids (liquid nutrition and fats). Today is Friday, day 14. Madi is now recieving
G-CSF. This is a medication to speed up her ANC. Engraftment occurs when the ANC is greater than 500 for three consecutive days. Today Madi's ANC was only 20. But there is a lot of work going on with Austin's new marrow engrafting and doing it's job in Madi as her white cells, red cells and platelets are appearing to grow.
Day 28 would be the day for the doctors to do the engraftment studies, but since Austin's marrow is doing such a fast job of engrafting, we will do a bone marrow aspiration on day 21, which will be next Friday. The doctors seem to think that we will get to leave the hospital in less than two weeks, if Madi keeps improving like she is doing now. We are going to try to stay at the Ronald McDonald house next to the hospital. We will be going to BMT clinic 3-5 times a week. She will still need many blood transfusions, platlets and plasma. So many kids that leave the BMT unit, return to the hospital with fever after 24-48 hours after they get to leave. So we would rather play it safe with being so close to the hospital the first couple of weeks.
Madison will have to start eating and drinking. Madison suffered from a severe case of anorexia in 2003 when she was four years old. After she got off the TPN and Lipids, she had a feeding tube because she just couldn't eat. Eating has always been difficult for Madi. She hates foods like hamburgers and hot dogs. When she does eat, it is chicken strips or fish sticks. I wish she would engraft her brother's eating skills. He eats anything and everything.
I will give you day 14 counts:
WBC 0.11
RBC 2.80
HGB 9.0
SEG 20%
LYMPH 20%
MONO 40%
META 20%
ANC 20
5 CELLS COUNTED

Tuesday, December 27, 2005 7:15 PM CST

Day 11 was another good day for Madi! We walked down the hall while the ladies dusted our room. We have three huge windows that love dust. Madi did several pages in a workbook.
The best thing about Madi's complete blood count today is that she has 33 Monocytes! Monocytes (macophages)are a type of white blood cell that assists in fighting infection. The moncyte, along with the neutrophil, are the two major microbe-eating and killing cells in the blood. When monocytes leave the blood and enter the tissue they are converted to macrophages. The macrophage is the monocyte in action and can combat infection in the tissues or can serve other functions such as ingesting dead cells. To put things simple, Austin's marrow is starting to engraft. It will still take weeks for engraftment to be complete. Total engraftment occurs when the absolute neutrophil count is greater than 500 for three consecutive days. The doctors are watching for Graft Versus Host Disease now. GVHD is a condition where the transplanted marrow attacks the patient's system. This occurs in 50% of patients. The attack occurs after the new marrow engrafts and starts to produce new white blood cells. The new transplanted white cells recognize they are not in their original body and therefore consider the new patient's organs to be foreign territiory. Patient organs that experience this initial attack, or GVHD, are usually on large surface organs of the patient such as the skin, liver and gut. Common sysmptoms are skin rash, diarrhea, jaundice, and abnormal liver function tests. Madi already has rashes and diarrhea due to Chemo and TBI. This is the first step up from being down at the bottom for so long.
------------RESULTS-----------NORMAL RANGE
WBC---------0.04 10^3/UL------5.0-14.5
RBC---------3.17 10^3/UL------4.0-5.2
HGB---------9.9G/DL-----------11.5-15.5
PLATELET----26 10^3/UL--------150-450
ABSOLUTE NEUTROPHIL COUNT (ANC) 0.06 10^3/UL
TOTAL CELLS COUNTED: 1

Monday, December 26, 2005 6:33 PM CST

CHRISTMAS DAY WAS DAY 9 AND IT WAS VERY MERRY!
Madison started opening presents before 7:00a.m. She had so much energy. The blood and platelets helped. My mom watched Madi while my dad, Austin, Mike, and I went to mass at 12:00p.m. at St. Luke's Hospital which was a short walking distance. Madison enjoyed playing with all her Christmas gifts. She even put a 100 piece Spongebob puzzle together at 7:00p.m. all by herself. (I was very excited about this because radiation and chemo often can cause delays with cognitive skills). She really enjoyed having her brother being next to her side all day. She was able to brush her teeth without vomiting at all. She took a sip of water and Sprite too.
------------------------------------------------------------
Monday was day 10 which was another good day for Madi. She was on the computer most of the day playing her new games. She helped me organize all of her Christmas gifts on the couch. She even walked down the hall today. She took a sip of Sprite today.
THANKS FOR ALL THE PRAYERS, THEY ARE WORKING!!!!!!!!!!
Counts for the day:
WBC-----0.06
RBC-----3.07
HGB-----9.6
ANC-----0.06
PLATELETS----36
TOTAL CELLS COUNTED: 1

Saturday, December 24, 2005 7:11 PM CST

MERRY CHRISTMAS EVERYONE!
Day 8 was another rough day for Madi. The doctors increased her morphine amount. She just has a few patches of hair left on her head. She was pulling her hair off her head today like it was cotton candy. It was rather funny to watch her doing this. She had her normal activity of vomiting mucos and blood.
"His Grace Foundation" began at 10:00a.m. with Christmas carols, hot wassail, and delivery of stockings to all the kids. They also provided a wonderful lunch and then gave all the kids and their siblings presents. (To learn more about HGF, please go to the web site: www.hisgracefoundation.org (Please remember to pray for HGF too for all the wonderful things that they do for BMT families).
Madison had enough strength to take a few steps to the bathroom and that was it for today. She wasn't able to go to the door and watch the singing in the halls. We could hear the angelic sounds from our room though. We had to unwrap her presents for her too, but after she got some platelets this afternoon, she perked up a bunch. She even played a game that she got from HGF. She is fixing to get some blood now.
If you have free time, you may want to go to one of our friend's web pages, Dustin Little. He past away two years ago from AML. Stacie has a lot of interesting information about leukemia.
www.caringbridge.org Tx. dustinlittle
Please remember to pray for all the families that have lost loved-ones to cancer. Another one of our friends who lost a daughter to AML (two years ago in Feb.) called me this morning. They live in Lake Charles, LA. She just found out that her husband is loosing his job in March at his chemical plant. With our prayers, maybe he can find a even better job.
Please know that each and everyone of you are in my thoughts and prayers daily. Thanks for all the support.
I will give you cbc results:
WBC 0.03 10^3/UL
RBC 2.40 10^6/UL
HGB 7.6 G/DL
ANC 0.03 10^3/UL
PLATELET 19 10^3/UL
TOTAL CELLS COUNTED: 2

Friday, December 23, 2005 6:52 PM CST

Today is day 7 and Madi is still at the very bottom with her counts. It was the most painful day for her yet. She was vomiting the mucos and blood through her nose and mouth. Her bottom is feeling the effects down there too. Madi's hair is falling out so fast now.
Austin and Mike came to visit today. Madi was so glad to see them. I ran to Target for a few things. It was nice to get out.
"His Grace Foundation" has some wonderful things scheduled for tomorrow. I hope Madi can get out of bed and listen to the Christmas carols.
The nurse forgot to bring me Madi's cbc for today. I will ask the night nurse for them.
I will write to ya'll on Christmas Eve!

Thursday, December 22, 2005 3:27 PM CST

Today is day is 6. It is our 15th day on the transplant floor. Well, Madi's counts have hit the bottom and she is really feeling like it too. The mucositis and thrush are very painful. She is using the morphine pump to help manage her pain. She was taking 40ml of Nystatin. After hating the taste of it and vomiting it up as soon as she could force herself to swallow it, the doctors have switched to Fluconazole, which she can get through her IV.
She still hates doing the mouth wash, but she doesn't have to do eye drops anymore. She also has a "sun-burn rash" from the total body radiation. Her hair is really falling out now too. Madi's head was really bothering her yesterday afternoon, so she told me just to cut it! So I got the scissors out and let Madi cut her own hair, with my help! Madi's hair looks so cute! It looks just like my hair cut, but much cuter on her. I promise I will get pictures on her web site soon. I will give you an update on her cbc for the day.
Madison did have a trace of blood in her urine yesterday, but all the tests came out fine today.
WBC o.o2 10^3UL
RBC 2.77 10^6/UL
HBG 9.0 G/DL
SEG% 80%
LYMPH% 20%
ANC 0.02 10^3UL
PLATELET 47 10^3UL
TOTAL CELLS COUNTED 5

Wednesday, December 21, 2005 10:43 AM CST

Today is day 5. Madi has been fever free during the last ten hours. She is getting platelets right now. She has less energy today than yesterday. Because of Madi's fever yesterday evening, the doctors have switched her antibiotics. Since I have nurses and doctor friends reading this update, I will try to give more specific info on Madi's complete blood count. I will just list a few things.
The cbc was taken at 4:00a.m.
Results-------------- normal range
WBC 0.05 10^3/UL ---- 5.0-14.5
RBC 2.87 10^6/UL---- 4.0-5.2
HBG 9.4 G/DL ------- 11.5-15.5
SEG% 60% ------------ 23-61
BAND% 20%----------- 0-8
LYMPH% 20% ---------- 28-65
ANC 0.04 10^3/UL
total cells counted 5

Tuesday, December 20, 2005 5:22 PM CST

Today is Tuesday, day 4. Madison had a temp. of 101 today. She has been really tired and not doing anything. She has been on a morphine pump since Sunday to help with the diarrhea. It has slowed down a lot. She has had a lot more vomiting today than yesterday. Madison's counts are still going down hill for a few more days.
She still has hair. (The nurses are surprised)

Sunday, December 18, 2005 3:38 PM CST

I have many friends asking for the address at the hospital:
Madison Brown
Texas Children's Hospital
Room 845
6621 Fannin
Houston, Tx. 77030

Sunday, December 18, 2005 2:06 PM CST

Madison is doing well. She just got through getting some platelets. Austin is feeling better today.

Saturday, December 17, 2005 7:45 PM CST

I did have a Friday, Dec. 16th journal entry update, but after I typed for an hour, it said that I was experiencing technical difficulties and that it would update soon, I just looked and found out that yesterdays entry is missing, so I will give you the short version. Austin had to be at TCH at 6:00a.m. They took him into surgery around 9:20a.m. He was in recovery at 11:45a.m. He was in a lot of pain. The morphine helped. We wheeled Austin into Madi's room around 1:00p.m. Madison was pre-med. with Benadryl, Zofran, Phenergan, Tylenol, etc... The nurses just want kids to relax and sleep through the transplant. Madison's blood pressure was really too high to even start with the transplant, but we had to start anyway. Madison was fighting to stay awake so she wouldn't miss anything. Madi's blood pressure went up to 170/108. The nurse suggested that we take the telephone off the hook, turn the lights off and keep it very quiet and dark in the room. Madi was hooked-up to every kind of monitor. She then went to sleep when it was over and then her blood pressure got so much better. Austin's marrow just flowed into Madi like a regular blood transfusion. The color was a brighter red than her normal blood transfusions are that she gets.
Austin was really sore and felt yucky from the anesthesia.

Saturday, December 17, 2005 6:32 PM CST

Today is day 1 after the transplant. Madison was so tired last night. She had a wonderful day today. She got MTX (chemo) today in a small dose. Most of the time she was watching a DVD or playing a game on the lap top, so I couldn't update. I didn't have the heart to tell her to get off, everybody wants to know what's going on now. Mike and Austin came and spent the day with us. The charge nurse had to take some of Austin's bandages off. He is still in a lot of pain. They said that today would be the worst day for him. The doctors drilled two holes in his hip yesterday. Two doctors worked at the same time removing his marrow. They went into the two holes over 100 times, so he feels really bruised. Mike just called to tell me that they went to church tonight, but Austin was in so much pain, that they left church after the sermon.
Mike is going back to work tomorrow.
Madi still has all of her hair. She will be going "down hill" with all her counts for about a week still.
Madison had so much fun today watching the "Bop For Brown" at BPS. She loved seeing so many friends and of course, Mrs. Breeden.

Saturday, December 17, 2005 6:00 PM CST

Day 0 was a very busy day yesterday. Austin had to be at the hospital at 6:00a.m. Austin was in surgery from about 9:30a.m. till about 11:45a.m. Mike and I were with him in recovery for about an hour. The "laughing gas" and "going to sleep gas" didn't work on Austin, so he went to sleep with IV. He needed some Morphine for pain when he came around. We had his pain medicine filled at the hospital pharmacy. Madison was so excited when they wheeled Austin into her room. Madison was pre-med. with Zofran, Phenergan, Benadryl, and Tylenol. The nurses want the kids to sleep during the transplant. She was hooked-up to all the moniters. Madi's blood pressure was really too high to even begin, but we had to start anyway. Madison being herself, was fighting to stay awake instead of going to sleep. The nurse had us take the telephone off the hook and to keep the room dark and quiet. Madison's blood pressure got up to 170/108. She had to get some meds. to help. She went to sleep just when it was over around 5:00p.m. As soon as she went to sleep, her blood pressure got so much better.
I tried to update during the transplant, but I was experiencing technical difficulties.
Madison starting getting TPN(liquid food) last night, so I feel much better now that I don't have to beg her to try to eat or drink anymore.

Friday, December 16, 2005 2:20 PM CST

Madison is getting her brother's bone marrow as I type! It is a bright red color. Austin is on the couch next to her. Mike was able to come in Madi's room!
I will give a longer update later.
Thanks for the prayers!

Thursday, December 15, 2005 10:20 AM CST

Today is day -1. Madison's last few days have been going well. She still has the vomiting and diarrhea. She hasn't had a bite to eat in days. She took a few sips of water yesterday.
She is looking forward to ringing the bell at M.D. Anderson this afternoon. I will be so glad when the radiation treatments will be over. We have to go through the E.R. to get to the ambulance, so I hope that I am not getting any germs. I wear a paper mask. It was raining all day yesterday. It has been so nice to get outside though. Outside is such a glorious sight at 6:00a.m. The Christmas lights look so pretty in the dark around the hospital. It sounds like thousands of birds singing too. (It's probably only about 100 birds, but the sound is so lovely and loud).
She will get an IVIG treatment today after radiation.
Austin has an appointment today. They will post the O.R. schedule soon so we will find out just when they will harvest Austin's stem cells.
I will update tonight.

Monday, December 12, 2005 6:50 PM CST

Today was day -4. Madison looked so much better this morning after getting her blood transfusion late last night. Madison did not like having to wear her "Star Wars" mask/helmet to get radiation this morning. It fits super snug. The guys that drive the ambulance are so kind and thoughtful. Madison did great with radiation both times today. About an hour when we got back this afternoon, she started crying that her neck and behind her right ear was hurting. The fevers also returned. Tylenol and ice packs helped a lot. Madison passed on the Morphine. (I think that the rice bag that they put on kids to be still during radiation must have bruised her. I thought that this seemed like a strange thing to do anyway).
Madison didn't have any vomiting or diarrhea today! She ate one tiny pretzel and drank one ounce of Gaterade! Big Improvement!!
Mike had an infusion of IVIG today from his oncologist. Madison and Mike were both getting Zofran at the same time today.

Sunday, December 11, 2005 8:16 PM CST

I am proud to say that Madison is finished with all of her chemo now. She will get a blood transfusion in just a few minutes. Nausea, vomiting and diarrhea have been keeping us really busy. She still hates the eye drops that are needed to prevent from cataracts. She has three different types of mouth washes that are needed to control mucositis and stomatitis. Madison's favorite mouth wash is really salty. (One mouth wash smells like strong alcohol and the other mouth wash is really sweet).
Madi has been running fever around 102 this weekend. It seems as though she throws-up her Tylenol at least about three times before it stays down for good.
She enjoyed a visit from Austin, Maw-maw and Aunt Pat today. I enjoyed running up to the 16th floor and washing a load of clothes while they watched Madi for me. Mike is still very sick with the Shingles. I really enjoyed my food from Hector's today! Madison is not eating or drinking. She will start on TPN after the transplant.
We have a new schedule for radiation. We go at 5:30a.m. and back again at 11:45a.m. I need all of Madi's fans to pray that the total body radiation will not damage her heart, liver, kidneys, lungs, bladder, etc... The doctors have also said that Madi will have permanent infertility. We can pray for that miracle later in life. Adoption will be fine if she has to go that route though.
We would like to thank all the girls, boys, parents and faculty at Barrett Primary for raising so much money for her! Boys and girls you will have to explain to us just what you did to raise so much money. I told Madi to guess how much money that BPS raised and she said $100. I told her to guess much higher and she then said $187. She was so surprised when I told her that it was over $1000.00!!
I would also like to thank everyone for all the prayers and words of encouragement. Thanks for being angels with invisible wings!!!!

Friday, December 9, 2005 1:52 PM CST

We were admitted to the bone marrow transplant unit on Thursday. The nurse looked at a rash that Mike had on his spine and said that he has Shingles, so he is banned from this floor until he is well. Madison did very well with her day -8 chemo, ara C. She was clawing at her skin all night. The cream seemed to help a little. Today is day
-7. She did throw up after her morning chemo of ara c. She had to take her pills again. She is now getting cytoxan. Later she will get mesna. The hardest part for Madi is having to use the really strong mouth wash to swish and spit all throughout the day and night. She really doesn't like getting eye drops in her eyes constantly either. She is having a lot of anxiety with the drops. They do burn. Madison didn't like doing these rituals when she was four years old, but she did get better at it when she was younger. I am praying that she will get more comfortable with the drill really soon. She is constantly going to the bathroom too. She is on a lot of fluids to protect her body from the chemo, especially her kidneys.
We just got our schedule for total body radiation on Monday. The ambulance will pick her up at 5:30a.m. and then she will go back again at 11:45p.m.

Tuesday, December 6, 2005 7:17 PM CST

Madison's dad, Mike, has M.S. (Just in case some of our new friends don't know us that well yet). He had a really bad weekend. He had a bad reaction to some new medication that he took late Friday night. He was nearly paralyzed from the waist down. He wasn't able to go to work at all. THANK GOD HE HAS WONDERFUL BOSSES AT EXXON!!
Austin and Madison both had to be at TCH doing transplant work on Monday. We were there all day long. I don't think that I mentioned that the nurses were having a difficult time getting blood return out of Madi's central line. Some times we could get her up at 1:00a.m. and have her do certain kinds of excersizes to get blood for CBCs. Sometimes they would have to poke her because her line wouldn't work. On Monday some doctors from surgery came up to try to get the line functioning. This was really painful for Madison. She started bleeding when they would move her central line around. To make a long story short, Madi had surgery again today. They pulled her one week old line out and inserted a new central line. We are at home now. The plan is back on for transplant. We will go in on Thursday. She will get four days of chemos and then she will get four days of radiation. The transplant will be on Friday, Dec. 16th. Let's pray that we can stay on schedule this week! Austin will miss school next Thursday and Friday. I was very excited yesterday when I found out that after the doctors harvest Austin's stem cells and he recovers for a little while, he will then get to be in the room with Madison when she gets her transplant! She will get Austin bone marrow just like she would get a blood transfusion. Madison's blood type is A positive. After she engrafts Austin's bone marrow, she will then become his blood type, which is O positive.
I WOULD LIKE TO THANK EVERYONE FOR ALL THE PRAYERS, GIFTS,LOVE AND SUPPORT! Madison has been through so much during the last few weeks and we have not even started the chemo and radiation yet. I had family Christmas cards made at Walmart. Mike's bosse's wife, Gena Harvey, took many pictures of us a few days before Thanksgiving at Eagle Point. I am trying to send out a few a day. Please be patient with me.
P.S. I got 13 inches of hair cut off this evening. I have been growing it out for Locks Of Love.
P.S.S. I talked Madi into letting me cut her hair on Saturday night. She had bangs for the first time ever. She did not like them at all! She cried. We decided that we would just wait to cut the rest of her hair Thursday, when we are at the hospital. It will fall out so soon anyway.

Tuesday, December 6, 2005 6:53 PM CST

Madison had another MRI last Thursday. She had a terrible reaction from the Versed (sedative) that they used on her on the MRI on Wednesday. She suffered from a hysterical schizophrenia of anger and depression. She also had a reaction like this to the Versed back in 2003. She was very upset when she found out Thursday morning that she had to have another MRI. She had Propofol to put her to sleep on Thursday. The recovery went much better.
Madison received IVIG for her parvo. Parvo is like Fifth's Disease, which is a common childhood illness.
(The infectious disease doctor told me that this medication is very rare to obtain and that Madi would have to be approved by a board to receive it). She did very well during her transfusion of IVIG. The nurses monitored her blood pressure and temperature every few minutes during the transfusion.
We got to come home late Friday evening. Austin was so glad to see us! It was so good to be home too!
Home health care came over on Saturday to change her dressing and to give us supplies to flush her lines daily.

Wednesday, November 30, 2005 9:15 PM CST

Madison tested positive for the parvo virus. She had a MRI done this morning on her head and neck. She will not be going to transplant tomorrow. We are planning on being there next Thursday.

Wednesday, November 16, 2005 6:48 PM CST

Madison started developing a fever and sore throat during the last few days in October. She didn't feel like doing anything at all on Halloween. I didn't either. I had strep and it looked like Madison had the same thing. We were both in bed by 6:30p.m. I was glad that it rained and the door bell wasn't ringing all night.
Madison's pediatrician put her on antibiotics and the fever went away. Her lymph nodes started swelling the next day. The next day we did blood work and it didn't look good. We then went to the cancer clinic at TCH. Her blood work was worse than the previous day. On Nov. 7th Madison had a BMA and it showed that the leukemia was back.
The good news is that Austin is a 6 out of 6 match to be the bone marrow donor. (The perfect match would have been an identical twin). Austin is so excited to get to help his sister! He has given probably 50 vials of blood so far. He has been getting CAT scans and x-rays with sister. (Madi is really enjoying watching Austin getting poked and having to drink contrast with her. She has matured so much since she was four years old. She would scream and cry before she got her central line in and even when she was doing well and we had to go to our routine blood checks every three months. It usually took two adults to hold her down. She has finally mastered being still and only getting a small tear in her eye at the age of seven). We have a lot of pre-transplant work to do still. The doctors have a lot of concerns with Madison's previous history with the granulomias in her body. She had four biopsies and nothing ever grew in the labs, so we really don't know what we are dealing with. Even the infectious disease doctors were scratching their heads. We feel that this may have been the reason that we could never get to transplant two years ago. We are doing a research study with the genetic doctors, so maybe we will get some answers. (I don't think that we will find out the results before the transplant though).
She was scheduled to get her central line, BMA, spinal tap, and some chemo on this Friday, but we got it rescheduled for November 28th. (I was so nervous about getting her line in too soon. She had numerous infections in her old central line).
Madison had to get a blood transfussion on Monday. Since it was almost time for the clinic to close, we had to go through the ER to get the transfussion. We were there from about 2:45p.m.-1:00a.m. It is always like a zoo down there.
Madi got to tour the bone marrow transplant floor yesterday. She was really excited. It is a lot smaller than our home on the ninth floor. It was very difficult for me because we have lost several close friends at transplant a couple of years ago.
She is really eager to get this show on the road. The Thanksgiving holidays have kind of backed us up since the ambulance drivers/radiation tech. have a few days off for the holidays.
Madison will get her central line put back in on Nov. 28th. She will get chemo starting on Dec. 2nd for four days. She will then get four days of total body radiation. Since they don't do radiation at TCH, she will have to go in an ambulance twice a day to M.D. Anderson.
I would like to thank everyone at the kindergarten for all the gifts, love and support. I hate to be on the receiving side again, but it helps to brighten Madison's and Austin's spirits so much. I will miss working with all my friends and teaching my class at Crosby Kindergarten. My students are in good hands with a great long term substitute teacher, so it helps me not to worry about them right now.
I promise to update soon!
Karen

Thursday, July 7, 2005 1:23 PM CDT

Madison is doing really well! She had a visit with Dr. Margolin at TCH on 6-5-05. Her blood work was great! She enjoyed being in kindergarten this past school year. She stayed busy with jazz and gymnastic classes. She had a big dance recital in April. She has also enjoyed being in Daisy Girl Scouts. Madison always loves participating in the Bay Area Relay For Life in April. Our team raised over $18,000.00!
Madi's daddy, Mike, was diagnosed with Lymphoma in January. His treatments were a success and he got his port out on Madi's birthday, June 16th!
We took a vacation to the Hyatt Hill Country Resort in San Antonio in June.
Madison is looking forward to being a Brownie in first grade!

Saturday, August 7, 2004 10:06 PM CDT

Madison got her central line out in March. It stayed in for exactly one year.
Madison and family went to Disneyworld in June for her Make A Wish trip. It was like Heaven on Earth. Give Kids The World (The Village) is such a magical place to be. We met several families from all around the world.
Madison had her tonsils and adnoids removed on July 30, 2004. Dr.Myers also did a BMA biopsy. Her throat is still pretty sore. She learned how to swallow a pill a few days ago, so we are very excited about this new accomplishment!

Friday, February 6, 2004 11:06 PM CST

Please remember to save pull-tabs from aluminum cans. This helps support Ronald McDonald Houses.

Friday, February 6, 2004 10:43 PM CST

Madi loves school. She is the poster child for our school's fundraiser, "Pennies for Patients." This program is sponsored by The Leukemia & Lymphoma Society. Students have been bringing pennies and other coins to school to improve the quality of life for patients and their families. We have two more weeks to go!
Our campus also had a garage sale this week at school to help raise money for our "Relay For Life" cancer team. The sale was set up in our gym. We also had parent-teacher conferences this week, so we had a lot of parents shopping. We raised over $550.00

Friday, February 6, 2004 9:32 PM CST

Madison started kindergarten in January. Her first cousin is her teacher and I am down another hall from her. She had a bma in January and is still in remission. The doctors are still very concerned about the granulomas throughout her body. On 2-2 she saw a rheumatologist. Some of the labs are still pending. She has an appoitment with an ophthalmologist next Wednesday. She is finally off all of her T.B. meds. Hopefully, her central line will come out soon.

Monday, December 29, 2003 8:51 PM CST

I am so sorry that it has been so long since the last update. Madison's biopsy that she had in November never grew any results. Austin had his heart ablation for his WPW during the same week. Both kids are doing very well, thanks to a lot of prayers. Madi will have another CT scan and BMA the first week of January. If all goes well, she will actually get her central line removed soon. (She still never got use to changing her dressing every week. She got a lot better though. She still hates taking all her meds.)
The year 2003 was a very depressing year. Not just because Madi got leukemia, but because so many of our very, very, dear friends died at such an early age due to cancer.
Hannah died the week before Thanksgiving and Dude died the week before Christmas. Madison's great-aunt also died a couple of days before Christmas too.
Our other best friend from the hospital, Payton, is still struggling with finding a donor for another bone marrow transplant. She desperately needs an African-American donor, so if anyone reads this, please let everyone know that so many children and adults need donors for a cure.
Please keep all of our friends in your prayers too.
God Bless you,
Karen Brown

Tuesday, September 9, 2003 5:50 PM CDT

Madison only weighs 36 pounds. She has been dozing off a lot today. I have been trying to ween her off her morphine pump. She was so constipated back in April from her PCA. She is fever free still!

The one good thing about being back at home on the 9th floor is seeing old friends (kids, parents, nurses, doctors,and volunteers)and getting updates about the rest of our friends. Please continue to pray for all the kids that are sick and especially for those who suffer from cancer and blood disorders.

Tuesday, September 9, 2003 1:41 PM CDT

Madison had another CT scan of her chest last week. The results were not good. The doctors started Madi on "ampho-terrible" in case she had a fungus. Not sure of what exactly was going on in her chest, the infectious disease team, the oncologist team, and the pulmunary team of doctors decided that they needed to do a biopsy into Madi's lungs. They also were going to do another bone marrow aspirtation since she was going to be put to sleep. Madison was very anxious and nervous about having another biopsy and bma done to her since she has had so many done before. The anesthesiologist had to give her a sedative three times before they took Madison to the operating room. I could still her crying for me as they wheeled her into surgery. We got to see Madi in recovery about 8:00p.m. last night. Everything went well. She didn't even have to have a chest tube draining from her stomache this time. She has her PCA (morphine) pump that she pushes when she is in pain that works every ten minutes. We still don't know the results yet.

Tuesday, September 9, 2003 12:56 AM CDT

Madison was in the hospital on August 15th-19th finishing up her sixth round of chemotherapy. She had a CT scan of her chest on August 15th. It showed a lot of improvement from the previous month.
We were told since Madison has stayed in remission, she would not have to go to BMT. When her counts would recover, she would even be able to go to kindergarten.
On Friday, August 29th her daddy took her to clinic to get platlets and blood transfusions. After waiting all morning and day for her transfusions, they decided to speed up her platlets so she wouldn't have to go to short stay again. She had a bad reaction to her platlets so she had to be admitted to the hospital with fever and she continued running fever.
Since I am back teaching, I have been leaving from the hospital early in the morning to go to work and then I have been coming straight back after work. I am so fortunate to have such a wonderful family that can help take care of Madison and Austin.

Thursday, July 24, 2003 8:39 PM CDT

Madison has been waiting all summer to see Finding Nemo. Her counts were good enough to go to the movies today. On the way home we had a phone call from Dr. Judy Margolin. She said that all of Madison's test results from Friday were wonderful. The leukemia team also had their weekly meeting and Madison will probably not be going to transplant until she has been on her TB meds for nine months. There is even a chance that Madi may not have to go to transplant at all. PRAISE THE LORD!
We go to clinic tomorrow. We will get another update.
Madison and Austin are on Kris Brown's web site. He is the kicker for the Texans football team. He came to the hospital on Tuesday before Madi got released. The picture can be seen on www.krisbrownskickclub.com
He is giving Tx. Children's Hospital a lot of money (depending on how his season goes). Let's cheer him on!

Sunday, July 20, 2003 0:33 AM CDT

We want to THANK everyone for all of their love and support that has been given to our family since Madi was diagnosed on March 7,2003 with Acute Myeloid Leukemia. We really appreciate all the prayers, blood, gifts, money, etc...

Saturday, July 19, 2003 11:33 PM CDT

Madison had a spinal tap and b.m.a. on Friday. The results for the spinal tap were very good. We are still waiting for the rest of the results. Madi also started some new chemos on Friday. She is on VP-16,VePesid and Novantrone. Her daddy has taken Novantrone for his M.S. It is a blue chemo that makes her urine blue!
Tuesday should be her last day of chemotherapy.
We still don't know when she will get to have a bone marrow transplant. Her nine year old brother, Austin, is anxiously waiting to be the doner. The transplant team denied Madison as a canidate for transplant in May, June, and July. They seem to think that she has some type of infection such as T.B. Nothing is growing from the biopsy, but she continues to take all of her meds for it. Maybe she will get to transplant in August?

Tuesday, July 1, 2003 9:46 PM CDT

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