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Saturday, December 1, 2007 7:42 AM CST
4 1/2 years ago....coming out of septic shock (When she looked good enough for me to allow pictures to be taken. For a couple of weeks, she was so swollen and yellow, we couldn't even recognize her. I didn't let anyone take pictures of her like that. I'll never get the image out of my mind, but I never want to see her like that again, even in a picture.).
Now
Need I say more?
Praise God for His mercy and grace.
Sunday, November 4, 2007 2:54 PM CST
Tomorrow (Monday) will be Marisa's 3 year transplant anniversary. It's so hard to believe that 3 years have gone by already. She is doing very well for the most part. Her labs last week were up just a touch, so hopefully they will be fine when we go to clinic in a week.
Marisa is just on two meds for her liver (Prograf & Actigall) plus Flovent for her asthma. THAT'S IT!!! Truthfully, she probably doesn't even need the Actigall. She's still on it because of her bile leak/PTC tube post-transplant. They are being very conservative taking her off of it. Maybe this month they will take her off it. She gets labs once/month and goes to clinic once every 6 months.
Please remember her donor family tomorrow. As we celebrate the life of our daughter, they mourn the loss of their child. Also, please remember Angel Haley's family. Marisa's anniversary is Haley's birthday. She would have been 14 this year. Angel Haley
Thank you for your love and support over the past 4 years. We are very blessed and give all of the honor and glory to our Lord.
Thursday, November 1, 2007 5:56 PM CDT
We hope everyone had a happy Halloween! Marisa was JoJo the Clown, Camille was Hermione from Harry Potter, and Jackson was a Power Ranger....
Looking for a "needle in the haystack" at school.
Thursday, October 11, 2007 12:19 AM CDT
Frank found this...
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
Tuesday, October 2, 2007 9:46 PM CDT
Prayer Requests:
Nicole, Frank's brother Dan's girlfriend, is having her second colon surgery on Thursday. Please remember her. She has had so many complications with her ulcerative colitis over the past couple of years.
Yesterday was the two year anniversary of Angel Haley's passing. Go to her site and leave a note for her family. Angel Haley
Jon is having a hard time with some medication side-effects. He could use a kind note in his guestbook.Jen and Jon
Saturday, September 29, 2007 9:15 PM CDT
Turn up your volume and listen to this song playing. It's called "Second Chance." It was written for the transplant center at U of M. It's a beautiful and very touching song about being a transplant recipient. Listen to the words and say a prayer for Marisa's donor family. It has been almost 3 years since they gave Marisa her "second chance."
If you'd like to purchase the CD ($10) or MP3 download ($1), go to this link:
http://cdbaby.com/cd/campmichitanki
All proceeds benefit Camp Michitanki (transplant camp for kids in Michigan).
Wednesday, September 26, 2007 9:37 AM CDT
Marisa is having so much fun at school!
Thanks for checking in on her. She's doing very well. For 3 months now, she's had perfect labs. I can't tell you how thankful we are for that.
Love,
Shannon
Monday, September 10, 2007 2:27 PM CDT
First Day of School Pictures!!!
Camille and Jackson started last week:
Marisa started this morning:
I have to throw this one in. Camille and Jackson had a Harry Potter Birthday Party this weekend.
Tuesday, August 21, 2007 8:10 PM CDT
HAPPY 7th BIRTHDAY JACKSON!!!!!!
We love you big kid!
Tuesday, August 14, 2007 8:38 PM CDT
LET'S GO TIGERS! LET'S GO!!
Last week was Tiger Week for us! Frank had bought tickets a few months ago to take Camille to a game and then we found out that our annual game with Church was the same week. Here are some pictures!
Thursday, August 2, 2007 7:51 PM CDT
Not much to report this week. Nothing really has happened. I guess that's a good thing though!
We have been swimming this week. It's really nice to see Marisa enjoying herself in the water. It was such a long time when she had one tube or another hanging out of her and she couldn't take baths or go swimming. We're enjoying a "normal" life with her!
She's really excited that Bible School is next week. Can't wait to learn new songs and spend the week with her friends.
If you missed our last update with pictures from the Tiger Game and Ohio, go to journal history and see them.
Have a great weekend and thanks for checking in!
Shannon
Friday, August 3, 2007
We went to the beach today. It was Marisa's first time playing at the beach. She could never go before because of tubes, etc. She had to wear ear plugs to keep the lake water out of her ears & ear tubes, but she had so much fun. All three kids did. Jackson was a little more interested in the pier than swimming though. He had fun throwing rocks at a dead fish... Here are some pictures from today.
She worked on her "sand castle" all day!
Hope you are all having a great weekend.
Shannon
Tuesday, July 24, 2007 3:04 PM CDT
Welcome!
We had a wonderful weekend.
First, we went to a Detroit Tiger game for Frank's birthday on Friday. Although the game was terrible and they got destroyed...we had fun.
Here's a picture of one happy fan!
We were also blessed to be able to meet with two groups of friends. One set from Church and one set from Liver Families.
We spent the majority of the weekend with Chuck and Dianne. It's been over 11 years since I have been to their house. (We're blaming this on Frank, since we haven't been there since we got married!) Felt just like old times though...except that I was chasing MY kids around instead of THEIRS! We really enjoyed our visit with their family. The kids didn't want to leave. A swimming pool, video games, and air hockey table....can't compete with that here! :-) If you happen to see this...thanks for having us. We had a great time.
Here are a few pictures from the visit with them:
We stayed with them Saturday through Monday morning. Then on Monday afternoon we were able to meet up with Lisa, Joey, AIDEN and Mason from Florida. (follow the link to Aiden's site) The kids had a great time swimming in the hotel pool. They then literally bounced off the walls in the room until we had to go find a conference room where we could sit and visit. Just as we were getting ready to leave for home, Susan & Heather from Ohio showed up so we had a nice little visit with them too before we had to hit the road and head for home. (Aiden and Heather have both had liver transplants).
Here are some pictures from our visit with them.
Here is an unsuccessful attempt to hold a photo session. Note how the kids are just bouncing around. Marisa is not to be seen because she was behind us with her arms crossed in protest.
Camille and Mason became fast friends. Isn't he just ADORABLE!!!
Aiden charged us "four twenty-five cents" to enter their room!
And here is a picture of the three "Liver Kids" together
Here, Aiden and Marisa share their transplant scars. We didn't ask Heather to show hers! :-)
We truly enjoyed our visit. We have "known" the Hawk family for 4 1/2 years and this was the first time we have met in person. We sat down and started chatting like old friends though. It was wonderful to get to meet them for real. We look forward to seeing them again. Aiden said he'll see us when it snows! (They're coming back to Cincinnati in October...I couldn't break his heart by telling him he probably would not be doing any snowman building at that time!)
So...thanks for bearing with me through this very long update. I hope you enjoyed the pictures. Take a minute to let sign the guestbook and let us know you were here!
Love,
Shannon
Monday, July 9, 2007 7:21 PM CDT
UPDATE July 12, 2007
Marisa had her pulmonology appointment yesterday. We get to discontinue one of her meds (Singulair) for the summer. We may have to start it back up in the fall/winter, but for now, we get to stop it. The plan is to keep her on her Flovent 110 (2 puffs/twice daily) for her asthma. Hopefully next summer we'll get to stop it for the summer. I was hoping to stop it for this summer, but better safe then sorry. I'd hate for her to go into a big asthma attack. We're very happy with how her asthma is being controlled right now. I like taking the conservative approach.
She also had labs drawn yesterday. They were all PERFECT!!!!! Praise God. They haven't ALL been perfect in a very long time. They've been mostly perfect, but not all. I'm thrilled about that. Her magnesium was even really good. We stopped her oral magnesium about a month ago (she's been on it for almost 3 years) and her level has remained good.
Just thought I'd give you a quick update on how her health has been.
Monday, July 9, 2007
We got back from Church Campout yesterday. The kids had a lot of fun. We were in South Carolina this year.
Thankfully, everyone remained healthy for the trip. We met Mary and Ayden from Liver Families on our way there. Ayden also has Biliary Atresia. She has done well with just her kasai though and has not needed a transplant.
We spent the week at camp and then went to Gatlinburg, TN on the way home for a night. We went to a wonderful aquarium and did some go-cart riding. From there, we made the LONG trip home.
Here are some pictures from the trip if you're interested in seeing them. There are about 100 pictures, so it will take about 6 minutes to view the whole slide show. If you click on the arrows at the side of the slide show, it will go faster.
July 2007
Thanks for checking in on us!
Love,
Shannon
Tuesday, June 5, 2007 2:41 PM CDT
Well...Marisa has another (or the same) ear infection. She ran a high fever all weekend. We went back to the pediatrician yesterday and she's back on an antiboitic. She has an appointment with the ENT on Thursday.
We were very sad to hear the news last night of the transplant team from U of M who were involved in the fatal airplane crash. We didn't know any of the victims personally, but are sad for the loss to the hospital, the transplant center, the families, and the transplant world. These people lost their lives in an effort to save someone else's life.
MILWAUKEE, Wis. -- A Medical Transport jet from the University Of Michigan crashed into Lake Michigan Monday afternoon.
Police said six people were on board. Coastguard officials said they have found debris from the plane and human remains. Officials said they believe this is a non-survival plane crash.
"Our hearts are broken today," said Mary Sue Coleman, University of Michigan president in a Tuesday morning news conference.
"The condition of the aircraft debris and human remains found indicate a high-speed impact," Capt. Bruce Jones said. "We believe this to have been a non-survivable crash. We offer our greatest sympathies to the families of these victims."
The University of Michigan identified the victims as Bill Serra and Dennis Hoyes, both pilots from Marlin Air; David Ashburn, M.D., Martinus "Martin" Spoor, M.D., Richard Lepensee and Richard Chenault II, both transplant donation specialists.
Marlin Air flies all survival flight airplane missions, according to the University Of Michigan.
The jet took off from Mitchell Airport in Milwaukee, Wisconsin and was bound for Willow Run Airport in Washtenaw County.
According to the University Of Michigan, those on board were returning after procuring organs for a transplant at UM.
"The thoughts of the entire university community are with the families of those involved this evening. We take consolation in the fact that the team was on a mission to help another, " said Darrell A. Campbell M.D., chief of staff of the UM Hospitals and Health Centers. "We vigilantly await the results of the U.S. Coast Guards search."
Campbell said as soon as they received word of the incident, UM contacted the transplant team that had been preparing the patient, and the operation was suspended.
As of Monday night, the patient, according to UM, remained in critical condition. Citing patient confidentiality laws, UM declined to give detailed information. However, sources tell Local 4 News the patient was scheduled to receive a double lung transplant.
Coast Guard Petty Officer David Warfel said the plane took off about 4 p.m., almost immediately reported there was a problem on board, and asked for permission to return to Milwaukee. Warfel said the jet quickly dropped off radar and a witness later told police she saw a 20- to 30-foot high splash after the plane hit the water.
Warfel said the Coast Guard found the plane about 20 minutes later -- about a mile and a half off shore.
Marlin Air works with Southfield-based Toy Air. Bob Page, president of Toy Air, confirmed the jet belonged to his company and was being used by the University of Michigan Survival Flight team. The plane was a Cessna Citation.
"It didn't seem real," Page said. "That type of aircraft is very reliable, very rare to have issues with it. I have met the people at U of M. This is a tragic loss."
The Coast Guard said divers have found pieces of debris and it appears the jet is in an area about 20 feet deep.
There is still no word on what may have caused the jet to crash.
"This is a tremendous blow from which we won't quickly recover," said Dr. Robert Kelch, CEO University of Michigan Health System in a news conference on Tuesday morning.
There will be another briefing at 5:00 p.m.
The National Transportation Safety Board arrived on scene Tuesday. NTSB Senior Air Safety Investigator John Brannen said they listened to audio between the tower and plane and the pilot reported a problem with its trim runaway system. The system controls bank and pitch, but he doesn't know what could have caused the problem.
"We will piece together what we can of the wreckage," Brannen said.
The problem has previously caused accidents, he said. They also planned to look at the aircraft's maintenance records within the next few days.
Milwaukee County Medical Examiner Jeffrey Jentzen said he likely would have to use dental records and DNA to identify the victims.
"A high-speed impact in water causes explosion-type injuries," he said.
There were 55 accidents involving emergency medical services flights -- those carrying patients or organs for transplant -- between January 2002 and January 2005, according to the most recent National Transportation Safety Board study on the issue. The study found several safety problems, including less stringent requirements for EMS flights that did not carry patients.
Saturday, May 19, 2007 11:01 PM CDT
Marisa hit a milestone this week....she made it 6 months between liver clinic visits! 6 months ago when we scheduled the first 6 month interval appointment I was sure that we'd end up going in sooner. Prior to this, she was in clinic every 1-3 months. Thankfully she has done so well these past 6 months that we actually made it that long! They were very pleased with her progress and don't want to see her again for 6 more months! It's hard to believe that we have made it to this point. Seems like yesterday that we were constantly driving out to U of M for either clinic, ER, or being admitted. She is turning into such a big girl. It's really hitting me lately that she's not a baby girl any longer. She's growing and thriving.
Unfortunately, she also developed a bad ear infection this week. Thankfully though, I got her into the doctor right away and within 24 hours of starting the antibiotic she was feeling much better.
Thank you for visiting and for praying for her. It's through your prayers that she has made it to this good place in her life.
Have a great week!
Shannon
Tuesday, May 1, 2007 6:31 PM CDT
Four years ago today...Marisa had her Kasai (her first liver surgery). It was the beginning of a horrible, horrible month with her being in septic shock in the NICU. I'm filled with a lot of bad memories today, but I'm also filled with so much gratitude to God for sparing Marisa's life and allowing her to become the wonderful little girl that she is.
Thank you to each of you who have been supportive and loving to us during the past 4 years. Thank you to those who have cooked for us, cleaned our house, prayed for us, and kept us company in the hospital. You can't even know how much that has all meant to us.
We are so very thankful that Marisa is doing well right now. She is so full of life. It's ALMOST too hard to remember her being so ill and so close to death 4 years ago.
I love you very much, Marisa.
Love,
Shannon
Thursday, April 26, 2007 11:09 AM CDT
Marisa's labs continue to trend in the right direction. Thank you for remembering her in prayer. They are still not in a normal range, but are getting closer. She goes back again next week to have them drawn anther time. Hopefully this will be the last time for a while! I'd like to get back to montly labs instead of weekly.
Tuesday, April 17, 2007 4:30 PM
UPDATE: Tuesday 4-17-07
Marisa's labs were a tiny bit better today. AST went from 124 to 86 and ALT went from 160 to 146. Still elevated, but they are at least trending in the right direction. We will have to draw them again next week and see what is going on then.
More not so good news...Marisa was exposed to chicken pox yesterday. A child in Camille's class came down with them last night and Marisa was in the classroom yesterday. This child was at school yesterday too. Chicken pox is very dangerous for Marisa. Please say a prayer that she doesn't come down with this bad virus. Transplant said to just watch her real close and see if she developes any symptoms. If she does, she'll be admitted and placed on anti-viral medications.
Monday, April 16, 2007
Marisa had bad labs last week. They were pretty elevated. I will be having them drawn again tomorrow (Tuesday). Hopefully they were just elevated because she had been sick the week before they were drawn. If they are not improved, then she will need a biopsy to rule out rejection. Please pray that they look much better tomorrow.
More prayer requests...
Please pray for Mason. He's Aiden's little brother. Follow the link to read about what is going on: Mason & Aiden This family is in need of prayers.
Pray for my friend Karen. She was just diagnosed with breast cancer this morning. My heart is breaking for her.
Dan's girlfriend, Nicole, is still struggling to recover from having her colon removed. She has a bowel obstruction, pneumonia, a surgical wound infection, a blood clot, a fever, an elevated heart rate, and probably some other things I am forgetting. Please pray that she can make a full recovery and return home soon.
Thank you for your prayers for Marisa and the others. I'll update you on her labs tomorrow.
Shannon
Tuesday, April 3, 2007 10:22 AM CDT
My heart is very heavy today.
Marisa is sick, throwing up, and extra prayers are appreciated. This isn't about her today though.
There are two little babies, a lot more than two actually, but two that are in very dire condition right now.
PLEASE pray very hard for Antonio and Hope Click on their names in the list above to follow the links to their sites.
Also, Frank's brother, Dan, has asked for prayer for his girlfriend, Nicole. She is very, very ill also. She is having her colon removed right now. She's just 23 years old and really nervous. They both are. She has ulcerative colitis and has been extremely sick for one year. Please remember her in prayer.
UPDATE: Nicole's surgery went well. Her colon was in very, very bad shape. The doctor said there is no doubt in his mind that it needed to come out. Last I heard, she was still in recovery, 6 hours after surgery. They are having a very hard time controling her pain. Please continue to pray for her.
Thank you for praying...
Love,
Shannon
Saturday, March 31, 2007 1:28 PM CDT
Marisa got her cast off on Wednesday!! So happy to have it off. We got to keep it and she carried it around the house pretending it was a phone for a whole day.
She also had labs drawn this week. Thankfully, they were very good also. We had to increase her prograf a tiny bit because her level was low, but the good thing is she has grown and gained some weight since the last dose change, so it makes sense to have to increase it some. We'll have to get lab work done again this week, so hopefully the level will be in her range this time.
Thanks for checking in on us. Leave a note in the guestbook so we know you were here!
Sunday, March 18, 2007 7:51 PM CDT
Please, please...pray for Antonio.
Here is the link to his site:
Antonio
Thursday, March 15, 2007 11:28 AM CDT
Hello!
It's been a little while since we've updated. Sorry about that.
Marisa is doing well with her broken arm. She has on a neon pink cast (her choice!) from the shoulder to the finger tips. We go back in two weeks to get it off and have another x-ray. Hopefully, it will have healed well enough to be done with the cast for good.
We're very proud of Camille. She won her school's third grade science fair. They picked the top 3 projects and hers was one of them. Tonight is the science fair for Downriver (6 districts). There are 18 3rd grade projects. She's really excited and nervous. The winner all of the projects in 3rd and 4th grade (only one winner for both grades) wins a trip to Space Camp. Although the odds are slim that she would win the trip, she's still really excited that she made it this far. She's hoping to place in the top 3 for 3rd grade. We'll see... There are a lot of real good projects. We're just proud that she made it this far.
The Boston Marathon is coming up next month. Marisa has 3 runners running in her name this year on the Run For Research Team. The team raises money to help fight liver disease. Marisa's runners have set up web pages for fundraising. If you're able donate even a small amount, please go to her site and make a donation. Even $5 or $10 can make a big difference in life of someone fighting liver disease.
Here are the sites:
Martha
Bryan
Lyndsay
I hope everyone is having a good week!
Shannon
Saturday, March 3, 2007 4:05 PM CST
Marisa is now a Three Time Member of the Broken Bones Club.
This morning she fell off the arm of the couch and broke the bone in her arm just above her elbow. This is the exact same place where she broke her arm (requiring surgery to place pins) a few weeks after transplant (2 years ago). Today's x-ray couldn't say for sure if the bone was broken or not because of the old fracture being in the same place. They put her in a splint and sling. She has to follow up with the orthopedic doc in a week. By then, if the bone is broken, they'll see some calcification on the x-ray. At that point, they'll decide whether to keep her in a splint or put a full cast on.
In better news....yesterday Marisa and I went to a live animal presentation at Camille's school called Science Alive. Marisa just LOVED it! Here are a few pictures of her and Camille with the animals. In the first one, Marisa is watching an armadillo. The second has her watching a giant frog. And the last one is Camille with a chinchilla.
If the pictures look a little funny, I had to blot out the faces of some students because I didn't have permission to post their pictures. 
Sunday, February 18, 2007 1:20 PM CST
Yesterday was Marisa's 4th birthday!!!
Hard to believe she's 4. The day was bittersweet for us. Although it was a joy to spend time with her, Frank's grandfather was also in the hospital in septic shock. He passed away at about 11:45 pm on Marisa's birthday. Please pray for Frank and his family. This wasn't an expected loss, and they are all very upset.
We love you Grandpa Trahan. You will be deeply missed.
Happy Birthday Marisa! We love you and are overjoyed to see you enjoying life so much.
Love,
Shannon
Thursday, February 15, 2007 8:55 PM CST
Just want to welcome our new nephew into the world.
My brother and his wife just had their third child on February 13.
Nathanael James Lambert weighed in at
10 lb 1 oz and was 21 inches long!
Love,
Shannon
Saturday, February 3, 2007 10:40 PM CST
Marisa has been a little under the weather today. She awoke with a 103.6 temperature, but with some Tylenol it's under control. She is acting fairly normal and we are keeping her hydrated. Please say a prayer that her illness doesn't warrant an ER visit.
Marisa is very excited to be sharing a new bunkbed with her sister. We will post pictures when we get a chance.
Thanks for checking in on Marisa. Stay warm and God Bless!
Frank
Monday update: Marisa's fever went away overnight Saturday and she is back to normal, playing with her brother and sister who are home from school because of the bitter cold.
Take care.
Wednesday, January 10, 2007 12:02 AM CST
Marisa continues to thrive.
She is enjoying preschool classes three times a week, attending Gymboree and also taking swimming lessons.
Thanks for checking in on Marisa.
Happy New Year!
Frank
Thursday, December 14, 2006 6:48 PM CST
We're thankful to report that we've had another good week. We're busy, busy, busy...but not complaining!
Unfortunately we had to cancel our party last week with our liver friends. Our family all had colds and we didn't want to spread germs. Hopefully, once 2007 gets here, we'll be able to reschedule.
The kids are looking forward to the Christmas Program at Church this Sunday. They have their parts memorized and are ready to go!
Hope you all had a great week. Thanks for checking in on us. Leave us a note in the guestbook so we know you were here.
Love,
Shannon
Saturday, December 2, 2006 2:20 PM CST
Thanks for checking in on Marisa. She has been doing well since she healed from her surgery. She is sleeping better!!!
Not much to report. Just busy trying to decorate for Christmas. We are also hosting a party (Hugs & Hope Day) for some "Liver" families in Michigan next Saturday. We're looking forward to gathering all of our Miracle Kids together.
Marisa's labs have normalized again, so thank God for that! Her Liver Docs don't want to see her for 6 months!!!! We were also able to drop a couple of doses of meds. Things are going well right now. Thank you for your prayers.
Shannon
Thursday, November 9, 2006 10:33 AM CST
Surgery went well yesterday. We came home this morning. She is doing much better. Still sore...but better. She's doing a good job getting her fluids in.
The surgeon said that her tonsils were a mess. They were practically falling apart as they were trying to remove them. Adenoids were quite large also. Obviously...both needed to come out. They only replaced one ear tube. The other one was in place and working fine.
Please say some prayers for sweet Jackson (not my Jackson). He is fighting so hard for his life right now. His family is in great need of support and strength. www.caringbridge.org/visit/jacksonriley
Antonio is getting his gift of life today! Please pray for him. www.caringbridge.org/visit/antonioperez
Thank you for your prayers for Marisa also.
Shannon
Saturday, November 4, 2006 7:21 PM CST
HOME! We made it home this afternoon. Marisa is doing better. She is still recovering from being sick, but is pretty much back to being herself.
Tomorrow, November 5, will be Marisa's 2nd transplant anniversary. Hard to believe it has been 2 years. Unfortunately, there won't be much of a celebration because we can't go to Church or really do anything else since she is just getting over being sick. She has to be healthy for her surgery on Wed. Please say a prayer for her donor family. We are so very thankful that they chose to donate their child's organs. Please say a prayer or two also for Angel Haley's family. Her birthday is tomorrow also. She would've turned 13. If you get a chance, follow the link above and go tell her family that you're thinking of them.
Thank you for all of your prayers and love. Continue to remember Marisa with her upcoming surgery (tonsils & adenoids) on Wednesday.
Love,
Shannon
Friday, November 3, 2006 7:45 AM CST
Well, doesn't look like we will be heading home today. Still haven't seen the GI docs this morning, but the peds doc came in and said he heard mention of an upper GI for her. He doesn't think she needs it. THANKFULLY! So, he's going to vote for no upper GI and real food for her. She's on clear fluids right now. Fun, fun. Second set of labs looked better yesterday. Still not normal, but better. AST is just slightly elevated, rest of LFTs are good. So, not much to report. She's got her fight back in her though. No more sleepy girl. She wants to go HOME!
Thursday, November 2, 2006 11:49 AM CST
Marisa had blood work done today and on the way home was called back to the hospital. Her white blood cell count is 22 and her BUN is in the 30's. My guess is an overnight stay to hydrate.
Prayers, as always, are appreciated.
Thanks for checking in on Marisa.
Sunday, October 22, 2006 9:37 PM CDT
I know I haven't updated this site much lately. That means things have been going well. We've been keeping busy. Marisa is just loving preschool and swim class. She also goes to Gymboree once a week. She was awarded a grant from the school district and received a full year of Gymboree for free. She LOVES it. Right now she's taking a music class there.
Unfortunately, I have some not so good news too. She had appointments with Pulmonary and ENT last week. The results of her sleep study show that she does have apnea. She stops breathing 6 times/hour and her oxygen level drops to 80%. So...she will definitely need her tonsils and adenoids out. She will have her ear tubes replaced at the same time. Surgery is scheduled for November 8. Please remember her in prayer. Just the thought of another surgery with her makes me sick to my stomach. She will be in the hospital at least overnight.
Frank and Jackson are at game 2 of the World Series right now. They were both very excited. So far, so good for the Tigers. They are up 3-0 in the 7th inning. I'm sure they are having fun. It's very cold though!
Have a good week everyone.
Love, Shannon
Wednesday, October 11, 2006 11:00 PM CDT
Marisa is just getting over being sick-her latest labs were off somewhat because of it. Other than that, all is well.
She is currently taking swim lessons at the local community center and simply loving it!
Thanks for checking in on Marisa. We appreciate it.
Frank
Wednesday, September 6, 2006 3:38 PM CDT
Today was Marisa's first day of preschool! She trotted off into the classroom without even looking back at me OR SAYING GOOD-BYE! Not a kiss or a wave or anything! I'm holding a grudge against her for that! ;-)
Here are some pictures from her first day today and Camille (3rd grade) and Jackson's (1st grade) first day yesterday.
And here are a couple of pictures of our new kitten, Lucy.
And of course, we couldn't forget our beloved Ella Bella!
UPDATE:
Ricky arrived home today! So now we have Lucy and Ricky. And just to confuse you, Ricky is the male red-head and Lucy is the female brunette! They are getting used to eachother. Lucy is showing Ricky who is the boss...Hmmmm...sounds a bit like I Love Lucy! :-)
Friday, September 1, 2006 1:07 AM CDT
Thank you for your warm thoughts and prayers for my family during this difficult time. We will always miss my grandpa.
I was very fortunate to be able to spend so much time with him during his last two weeks. I spent endless hours and several nights at the hospital trying to make him feel more comfortable. He was in a lot of pain and was very confused. He was afraid of everyone working at the hospital and was convinced that the nurses and doctors were trying to kill him. Thankfully he knew who his family was. He remembered everyone's name and who we were. Right up until the morning he died, we were able to enjoy his sense of humor. He have spent so many hours just laughing about the things he said during his final days.
Grandma is doing very well. On Wednesday, we got two kittens, P.J. (named after grandpa, Peter John) and J.J. They are my kids kittens, but they are living with Grandma. They will keep her company. She loves cats, so this was perfect for her.
Here is a Photo Story I made of tonight's visit with the kittens. They just LOVED Jackson. Camille wasn't with us and I'm sure she'll be disappointed once she gets home from her slumber party tomorrow.
Marisa is doing well. Labs were perfect this week. Camille and Jackson are having a very small birthday party this weekend. They are very excited.
Thanks for checking in on us. Sign the guestbook so we know you were here!
Love,
Shannon
Wednesday, August 23, 2006 0:36 AM CDT
Marisa continues to do well. This has been her first summer that she has been able to enjoy herself and she is having a ball! Swimming, playing at the park, playing in the sandbox, etc.
Shannon's grandfather passed away early this morning. Please keep Shannon and the family in your prayers.
Thanks for checking in on Marisa. We appreciate all the love and support.
Take care.
Frank
Tuesday, July 25, 2006
UPDATE:
It has been a long week of Marisa being sick. She ended up with a pretty bad asthma attack on top of the viral infection. 5 days of prednisone...YIKES! Today was the last dose of that! Hallelujah! Fever has been gone for a few days. Vomiting was only one day. I never had to take her into the ER. It was close though. Just when I had pretty much decided to start packing a bag, she perked up and started asking for soup. She ate 3 bowls and kept it down! It has been much better since then. She went back to the pediatrian this morning for a re-check. Her cough is almost gone, so we'll do a few more days of breathing treatments to make sure it all clears up.
Thanks for the prayers.
Monday, July 17, 2006 7:34 PM CDT
Things have been well lately. Marisa has liver clinic tomorrow (Tues) morning, so hopefully labs are good and they are happy. I'm a little concerned about her weight. I'm afraid she is losing some. She hasn't been eating well for a couple of weeks.
We went to Church camp last week. The kids all had a lot of fun. Marisa was in her glory playing with her best friend and cousin Brooke. Those two are so funny. Here's a few pictures of them. 
They just crack me up. Camille and Jackson had a lot of fun also. Jackson is anxiously waiting for his first tooth to fall out. It's really loose, but it just won't come out.
I guess that's all for now. I'll update again after clinic tomorrow. I'll get those pictures posted soon also.
CLINIC NEWS:
Good news and bad news....
Bad news....Marisa is SICK! That's what I get for saying she was doing so well. She is running a temp of 103. I'll take her to the pediatrician in the AM if she isn't better. Her lungs sounded clear at clinic, so that's good. She's coughing a lot, so maybe it's just a weird viral infection. She was annointed tonight, so I'm trusting God to take care of this fever and whatever is causing it.
GOOD NEWS....Her labs were PERFECT! All of them! I was so sure that they would be elevated since she's running a temp. So, we are getting to wean from one of her rejection meds (Cellcept). She'll remain on Prograf forever, but we will be stopping this one! We go down to one dose/day for 2 weeks and then check the labs again. If they are good, we'll stop it and check the numbers again after a month. Dr. Lopez is also going to check with her surgeon and see if we can stop 2 other meds (Actigall & Asprin).
So, one day at a time for now to see what's going to happen with this fever.
7-20 Update
First of all...Happy Birthday Frank! Yesterday we celebrated our 10 year anniversary and today is his 41st birthday.
Marisa is still sick. Fever is a little better, but she is lethargic, doesn't want to eat or drink, and now she's vomitting some. Please say a prayer for her. We truly do not want her to end up in the hospital. If things stay as they are, she'll have to go in. She may be getting dehydrated, which can get very serious with her medications.
Shannon
Thursday, July 6, 2006 3:19 PM CDT
OK...to those who have mentioned that I haven't updated in a while...I'm sorry!
Things have been going well lately for the most part. We've been doing the lab dance a bit. Her numbers have been going up and down some. We just drew them again this morning, so I'm really hoping they are good!
We've been busy enjoying summer! This is Marisa's first year to really enjoy being outside. She doesn't have any tubes hanging out of her, so she's been swimming, playing in the sandbox, etc. She is really having a lot of fun being a "normal" kid!
She had a sleep study last week. It was LOADS of fun! Here are a couple of pictures from it.
They wrapped her all up with all of these probes on her, shut the lights off, and said "Go to sleep!" WHAT????? It thankfully only took about 45 minutes for her to fall asleep. Me on the other hand....didn't sleep much at all. There's something unsettling about knowing there's a camera and microphone in the room! We should hopefully get the results next week. If she is having apnea, then we will probably have to have her tonsils and adnoids out. I'm hoping to avoid any and all future surgeries!
I don't have time right now, but I promise to post more new pictures soon.
So, that's it for now. Thanks for checking in.
Shannon
Friday, June 2, 2006 8:33 PM CDT
We have had a difficult week. Marisa is doing well....I don't mean to alarm you!
Monday was lots of fun at the picnic. The kids really had a lot of fun.
Tuesday morning I locked myself out of the house. It was very hot and humid. Thankfully my mom had a key at her house, so we only had to wait for about an hour to get back into the air conditioning.
Then, Ella, our dog, starts getting sick. Lots of vomiting that won't stop. I take her to the vet on Wednesday. They aren't sure what the problem is. They take blood, give her a steroid shot, give her IV fluids, and send me home with some medication for parasites in case that's the problem. I'm told to call Thursday morning if she isn't doing better. So....she isn't doing any better. I call the vet to give a report and the doctor comes on the phone. She tells me that she just got the bloodwork results and they are NOT good. It appears that she has a very serious LIVER DISEASE. You heard me right...LIVER DISEASE. I just couldn't believe it. I ask her what her ALT & AST are, and she is kind of stunned that I knew what to ask about (She wasn't planning to give me any numbers assuming I wouldn't understand them....little did she know!). I tell her that my daughter had a liver transplant and I want to know what her levels were. SO...for all of you liver experts out there the normal levels for a dog are very similar to those of a human....ALT was 1700!!! AST 209, Alk Phos 1300, Total Bili 3.4, Direct Bili 1.4, and BUN was low. If Marisa's numbers looked like this I would be on the floor having a heart attack. She said she has never seen an ALT that high in her 14 years of practice.
So, she wants me to bring her in right away for x-rays and an ultrasound. X-rays didn't show anything remarkable. No signs of any cancer or tumors anywhere. Frank took off work early and came with me. They let us watch the ultrasound. Most things looked normal, but her liver was TINY. Obviously there is a lot of cirrhosis. Her gall bladder looked funny. It was full of fluid. No stones, just didn't appear to be emptying like it should. It didn't seem that her biliary system is functioning properly at all.
So...we are now trying to get her to eat. She took a 2 day break from eating. I'm getting her to eat boiled chicken mixed with rice. (Sounds appetizing...doesn't it?) At least she is finally eating some. She won't touch her dog food. For the most part, she just lays around looking pathetic and sad. She doesn't appear to be any pain, so that's a blessing.
She is taking prednisone, some other med that I can't remember the name of, and Actigall. She's actually taking Marisa's Actigall! I had an extra bottle of it, so I'm giving it to her while they order some for me.
We don't know how things are going to end up. Seems that she won't get better, but we are going to try. Frank found a book called, "Hope for Healing Liver Disease In Your Dog." So, we're going to read it and see if there's anything in there we think might help her.
Looks like we may have a difficult decision to make in the near future. We won't let her suffer, but right now she doesn't appear to be in any pain.
It feels like I've been thrown back to 3 years ago when they told us Marisa has liver disease. One day, she was just my little girl, and the next we're told she may have a fatal liver disease. Same thing here....we had no clue. Ella is black, so we couldn't see and jaundice (although I did pull back her eye lids and look at her eyes...they are yellow...). The kids will have a very hard time if we lose her. We all will.
Sunday, May 28, 2006 9:34 PM CDT
We're Potty Training!!!!! She has decided that she will only wear her new panties WITHOUT pants and WITH Jackson's cowboy boots!
Happy Memorial Day to everyone.
We're looking forward to lots of fun at our Church picnic. The kids are bringing a couple of friends. They are very excited about that. It is supposed to be 91 degrees tomorrow. Looks like we'll finally get a good day for a picnic. We are usually freezing and wet at the annual Memorial Day Picnic!
We started getting our pool set up today. It takes forever to fill it, so hopefully it will be finished tomorrow sometime. The kids are so excited and ready to dive in. I'm hoping that the COLD water will warm up quick since it will be so hot tomorrow.
I'm sure I'll have lots of pictures to share after the weekend is over.
We have lots of friends that need prayer....my grandpa is still getting his radiation treatments. He's pretty wear still. Annika, Natalie, Aiden, Caden, Trenton, Antonio, Jen, & Mariah can all really use your prayers. Many of these sweet kids are in the hospital right now. Some are waiting for their first liver, some are fighting complications, and some are waiting for a second or third liver. Please pray for our special little friends.
God Bless America!
Saturday, May 13, 2006 9:50 PM CDT
UPDATE 5/15/06
Took Marisa to an allergist today. I'm glad I did. I didn't trust the skin testing she had done a couple of weeks ago at the hospital. It just didn't sit well with me. (Everything was negative for that one.) So, today, they tested for dust, dust mites, mold, milk, and dogs. She was negative for the dog and milk. Thank God for those both being negative! Although I 'm not happy she has allergies, at least I have somewhat of an explanation for her asthma triggers and possibly her ear infections. She is being started on yet another med....Nasonex nasal spray. And of course...I need to get rid of all of the dust and mold in my house!!
She is also going for a sleep study on June 30. Not so sure how it will work out. I won't at all be surprised if they say she has apnea. Sleep is crazy with her. She never sleeps well, wakes up exhausted, and snored like crazy. Not sure how the will get her to keep 20 probes on her body and wrap her head in gauze AND get her to sleep well....but we'll give it a shot! (I can't even keep a SAT probe on her finger!).
That's what's going on in our world!
May 13, 2006
Happy Mother's Day to all the moms.
Mother's Day holds mixed emotions for me. 3 years ago on Mother's Day was one of the most heartbreaking days of my life. Marisa was in the NICU literally fighting for her life. She was in liver, renal, and respiratory failure at this point. They could not find the source of her infection. She had just had emergency surgery the night before Mother's Day and was put on an oscillator at midnight because the traditional ventilator wasn't strong enough for her. On Mother's Day she went into a critical state. She was moved into the most intensive care part of the NICU, replacing a baby who had just died that afternoon. It was a horrible, horrible day for me. I briefly saw Camille and Jackson. They came to see me at the hospital. Camille gave me a card that had a heart-shaped pin attached. I still have that pin in the make-up bag I had at the hospital. There are several items in that bag that I just can't bring myself to take out. Including that pin, "visitor" stickers from the hospital that we had to wear at all times, and a sticker that says "Mom Hamet". It was on something that was mine in the NICU. They always referred to me as "Mom Hamet".
Back to Mother's Day...It's still hard for me to face this day without being flooded with memories of how close we came to losing Marisa. I vividly remember seeing so many loved ones arriving at the hospital late that Sunday night to be with us and support us. It was late. Past visiting hours. I was standing at Marisa's crib just looking at her, fully aware of how very, very sick she was. I didn't know if she had much time left. Dr. Laning (one of the surgical fellows at the time) came over to me and told me that my ministers were there. I turned and watched Bro. Alex, Bro.Dino, & Bro. John walk in. As John anointed Marisa, I felt more peace than I had felt in several days. When we came out of the nursery, I saw the waiting room full of our family and friends. My parents, Aunt Yvonne, Joyce, Mike & Karen, Jimmy & Jody were all out there to be with Frank and I. It was a nice way to end a horrible day. Earlier that day (before the move to the intensive room) we also had several visitors. Henderson's came to see us and also friends that were in town for the weekend (Doug & Candace & their kids along with the Palacios family took the time to come out of their way to come see us and spend a little bit of time before the long drive back to KY. It was a blessing to see them that day also.).
So, as I think about Mother's Day, I'm so very thankful that Marisa fought that horrible infection and beat the odds. The greatest gift God has ever given me, aside from sending his Son to die for me and give me the opportunity for eternal salvation, was to be a mother. I love my children more than anything. I'm so thankful for each day I have with them. Although I often think that I could be a much better mom than I am, I only hope that my kids will always know how very much I love them. They are the three best kids in the world!
Sorry I got so emotional tonight. I don't usually get this way in my journals. Maybe I'm finally starting to heal a little bit. I have kept a lot bottled up inside of me for 3 years. I guess releasing it is a good thing. Better to cry tonight than to spend all day tomorrow crying! I'm looking forward to spending a wonderful day with my family tomorrow. We'll make some happy memories to help heal my heart that will always be somewhat broken over everything Marisa has had to endure.
Off the topic of Mother's Day, Marisa goes to an allergist on Monday. Please remember her in your prayers. I don't exactly know what they are going to do. Probably allergy testing, but I'm not sure what kind. I'm concerned about her asthma and ear infections. I'm thinking that there is a possibility of food allergies causing these infections. The ENT wants to replace the tubes that aren't working. I'm not crazy about the idea. If I can find an answer to the cause of the infections, then maybe we can avoid another surgery. I'll update when I get the chance this week.
Saturday, May 6, 2006 7:01 PM CDT
We've had a busy week.
I have posted that Marisa has had 2 painful ear infections since her tubes were placed in February. She had her follow-up with the ENT on Thursday. The bad news is that her tympanogram is still the same as it was before the tubes. Flat. Her tubes are NOT working. The left one that has had the painful infections is definitely blocked. They want me to try to unblock it by flushing the ear with peroxide/water a couple of times/week. She wants to see her back in 6 weeks, do another tympanogram, and decide what to do then. "The tube may have to be replaced." I was not happy to hear those words. What's the guarantee that another one would work any better? I'm remaining calm and will have a long discussion with them about replacing it if that's what they suggest next month.
Went to the pulmonologist yesterday. She had a pretty bad asthma winter. We doubled her Flovent to 2 puffs of 220 mcg BID. (She was on 2 puffs of 110 BID). We are keeping her on the Singulair the pediatrician started last month. He also did some allergy skin testing to see if we could find a trigger. They checked for 8 things common to the environment in Michigan. All were negative. One of the grasses was very mildly reactive, but not a true positive. THANK GOD she was negative to dogs! Would have been hard to pull her away from her best friend, Ella Bella! So, we are at a stand still. He wants to see her again in 6 weeks also. We'll see if she's doing any better and may be able to back off the flovent for the summer. Not sure I want to though. We'll see.
QUESTION: All of you allergy experts...do you know if food allergies can trigger asthma, or is usually just environmental? I don't know enough about it. She has never been tested for food allergies. In fact, other than drug allergies, this is the first allergy testing she has had. And it was OH SO FUN!
Monday, May 1, 2006 11:53 AM CDT
3 years ago today was Marisa's first liver surgery (kasai).
I am so thankful that God has brought her so far since that day.
Today, I celebrate her life and the miracles I have witnessed through her.
Please sign up to be an organ & tissue donor. Marisa's life was saved by an annonymous family that made the decision to donate their small child's organs.
Today, Marisa's homebound teacher was evaluating her to see if she still qualifies for services. One of the questions she asked Marisa was "If you saw a house on fire, what would you do?" Marisa's answer...."Go get MARSHMALLOWS!!" We almost fell over. Too funny. I guess we need to work on the 911 lesson.... :) We're happy to say that she won't be qualifying for services any longer because she is actually ADVANCED in many areas. Although we will seriously miss "Miss Martha," we're very happy about how well Marisa is doing.
Then...I had to go get a protective cup for Jackson today because his first coach-pitch game is tonight. He never had to wear one with t-ball. Anyway...he is just fascinated with the thing! He's been wearing it all afternoon and throwing things at "himself" to see if they'll hurt! He's picking up balls, dolls, etc. and tossing them at his crotch. It's killing me. I wish I had gotten it on video. That would be an embarrassing moment for him one day.....
Never a dull moment around here.....
Monday, April 24, 2006 5:40 PM CDT
It has been exactly 3 years since we first heard the words "liver disease" in regards to Marisa. Yesterday was the third anniversary of the beginning of our journey down the road that led to transplant. This whole month is full of some very painful memories for me. Her liver surgery took place just one week after we found out there was a problem. Marisa spent 28 days in the NICU after her liver surgery on May 1. I'll never forget watching her lie in the bed day after day getting sicker and sicker. It seemed that she would never get better and we'd never be able to bring her back home. Thank God he had other plans for her life. He has brought her through so much. We praise God for his goodness in our lives and especially for giving Marisa the opportunity to grow into the amazing little girl that she has become.
Please continue to pray for my grandfather. He will start radiation this week. The doctor says it is imperative for him to gain weight very soon. He has lost a tremendous amount of weight. Please say a prayer about this. If he doesn't put on the weight, the radiation will not help him.
Tuesday, April 18, 2006 10:28 AM CDT
Marisa had blood work done again yesterday. Thankfully, her labs were very good. Much, much better than last week. They were all just about perfect. Her liver enzymes could not have been better. Thanks for your prayers. After the crazy numbers we got last week, I wasn't sure what would happen this week.
I have a prayer list for you:
Emma, Aiden, Antonio, Savannah, Marek, Carly, Caden, Natalie & Annika are our liver friends that can use extra prayers right now. (A few of them have links above to their websites) They are either recovering from transplant, having complications, or being listed for transplant.
My grandpa has just been diagnosed with lung cancer. We're actually waiting for the biopsy results to confirm it, but the doctor said there is no doubt in his mind. Please keep him and my grandma in your prayers as we move forward with treatment (most likely radiation). He's 85 years old, so our prayer is that he will be strong enough to fight this disease. At this point, it looks like the tumor is isolated, so we're hopeful that it will be easy to treat.
Tuesday, April 11, 2006 3:55 PM EDT
Well...where do I start?
Marisa has developed a very painful ear infection. Apparently, the tube in her ear is blocked, because she is really having so much pain. The pediatrician said he couldn't even see the tube because there was too much stuff blocking the drum. He could see some fluid behind the part of the drum he could see though.She is on some new ear drops. Hopefully these will help loosen the blood/wax and open up the tube, allowing it to drain. She was never in this much pain with an infection before she got the tubes. I talked to ENT today, and they agree with the drops the ped. gave her. If I don't see drainage in the next day, I need to flush the ear. Sounds like fun. Anyone want to volunteer for that job? She's not going to be happy with me.
Liver and Kidney clinics were today.
Kidney: GREAT news! No more Blood Pressure medication and they don't even want to see her again!!!!! I'm SO happy about this. I need to just spot check her BP's and make sure they are stable. If they get too high, give them a call.
Liver: Overall he was very pleased with her. We actually got a 3 month pass until the next clinic visit! That's a first!! However....labs weren't back yet when we were there. I sent our nurse, Vicki, an email this afternoon asking how they look. This was her response: HUM...need to talk with you... She didn't even email them to me like she normally would. Don't like the sound of that. I'm still waiting for a phone call... Will update again when I hear what she has to say. Can't imagine it's good.
Prayer list: My grandpa is not doing well. I'm really concerned about him. He's 85 and has a bad bronchitis infection. I'm concerned that it is going into pneumonia. He's VERY weak. When I saw him last night it really upset me. Please pray that he is able to fight this infection and can start feeling better.
Also, our Patient Match Runner for the Boston Marathon, Nicole, needs prayers. She has a stress fracture in her sacrum. She has been advised against running, but is still hoping to be able to run on Monday. It has been 7 weeks and most fractures heal in 8 weeks, so she's waiting until race day (this coming Monday) to make her final decision. She has raised a lot of money for the ALF in Marisa's honor and we're very proud of her. She has dedicated a lot of time and energy (and pain!) to help raise money for research in the name of a little girl she has never even met. We're looking forward to meeting her sometime after the race. She lives just a couple of hours from us, but we have not had the opportunity to get together yet.
Thanks for all of your prayers.
UPDATE: The blood draw from this morning showed that her Potassium was WAY high. I had to get them re-drawn this evening to check them again. If it was really that high, she would've had to go into the ER to get some medication to lower it. Thankfully, the second draw showed a level of 4.6, so that was fine. Nothing else had to be done tonight. I really am not happy with her other labs though. I'm hoping that it's just due to her ear infection.
Here are the labs for anyone intersted:
TACROLIMUS (FK506) (TACRO) 5.6 5.0-20.0 NG/ML
SODIUM (SOD) 139 ***132-145 MEQ/L
POTASSIUM (POT) 6.9 ****C* 3.3-5.0 MEQ/L
CHLORIDE (CHLOR) 104*** 99-111 MEQ/L
CO2 (CO2) 21*** 18-28 MEQ/L
UREA NITROGEN (UN) 11*** 5-20 MG/DL
CREATININE (CREAT) 0.3*** L 0.4-0.6 MG/DL
GLUCOSE (GLUC) 111*** 50-130 MG/DL
CALCIUM (CAL) 10.1*** 8.4-10.4 MG/DL
PROTEIN (PROT) 8.6*** H 5.8-8.0 G/DL
ALBUMIN (ALB) 4.9*** 3.2-5.2 G/DL
AST (AST) 119*** H 2-50 IU/L
ALT (ALT) 44*** 0-45 IU/L
ALKALINE PHOSPHATASE (ALK) 158*** 70-350 IU/L
BILIRUBIN, TOTAL (TBIL) 1.8*** H 0.1-1.0 MG/DL
LDH (LDH) 523*** H 170-320 IU/L
MAGNESIUM (MAG) 1.6*** 1.5-2.3 MG/DL
PHOSPHORUS (PHOS) 4.8*** 3.8-5.8 MG/DL
GGTP (GGTP) 17*** 8-35 IU/L
BILIRUBIN, UNCONJUGATED (BU) 0.6*** 0.0-1.0 MG/DL
BILIRUBIN, CONJUGATED (BC) 0.0*** 0.0-0.3 MG/DL
WHITE BLOOD CELL COUNT (WBC) 10.8*** 6.0-15.0 K/MM3
HEMOGLOBIN (HGB) 11.9*** 11.0-14.0 G/DL
HEMATOCRIT (HCT) 34.3** 34.0-41.0 BR>PLATELET COUNT (PLT) 296
Wednesday, March 29, 2006 1:01 PM CST
Today we're taking a big step...we stopped Marisa's blood pressure medication. She has been having some bad side effects to it, so we have been gradually weaning her off of it for a couple of weeks. Today was the day! If she is able to keep her blood pressures below 101/60, we'll be able to keep her off. If it doesn't stay below that, she'll have to go on something else.
Please pray that she is able to tolerate being off this medication.
Tuesday, March 21, 2006 6:41 PM CST
Marisa is finally doing much better. No more coughing. She had her 3 year check-up yesterday and all was well. No concerns! Just wanted to let you know that she is doing well. She had labs drawn today, but I don't know the results yet. Hopefully they are good also.
Thanks for your prayers! It's good to be getting back to normal around here!
Shannon
Friday, March 17, 2006 1:19 PM CST
Back to the pediatrian today! NO WHEEZING!!! Her chest was clear. Still has the residual cough, but she'll hang onto that for a while. He said she sounded great. We go back on Monday for a WELL VISIT!
Please pray for Annika. She is having bleeding problems again.
Wednesday, March 15, 2006 2:46 PM CST
Well, Marisa is still sick. Actually, she's just having an asthma attack that is now in its 6th day! We started steroids yesterday, so hopefully this will end SOON.
Jackson & Camille are doing well.
Saturday, March 11, 2006 1:41 PM CST
I have 3 sick kids right now!!
Jackson woke up with an ear ache. Took him to the clinic (pediatrician is closed) and he has a double ear infection. The FIRST ONE OF HIS LIFE!! No fever, thankfully.
Camille is recovering from pneumonia, but still coughing.
I get home from the doc with Jackson and find that Marisa is still coughing and wheezing (thid started yesterday) AND NOW SHE IS SPIKING A HIGH TEMP! 102.3 right now. I'm debating whether or not to call transplant. Yesterday, the pediatrician said if she spiked a temp to start Augmentin. I did this, but I'm not sure if I should call them or not. I REALLY HATE TO GO TO THE ER AGAIN! Too many nasty germs for her to catch. I hate these situations. I know if I call, they'll want her to come in. I also don't want to leave Jackson home sick and go in with Marisa.
Decisions, decisions....
Tuesday, March 7, 2006 6:21 PM CST
Marisa has been doing pretty well. Someone knock on wood for me....
We had liver clinic today. They were very happy with her. Labs were very good overall. She didn't gain any weight, but she didn't loose any either.
Please pray for Frank's brother's girlfriend. She has been quite ill for several weeks now. Tonight she was admitted to the hospital. They do not know what is wrong at this point, but she definitley needs prayers. Her name is Nicole.
Friday, February 17, 2006
HAPPY BIRTHDAY MARISA!!!
Today our sweet girl turns 3 years old. I can hardly believe it. It is so hard to grasp that 3 years ago, we thought we had a healthy "normal" baby. She was pink! The weeks, months, and years that followed took us down a far different path than we ever imagined. A huge thank you to our annonymous donor family for giving Marisa her Gift and allowing her to reach this milestone. Although we truly wish Marisa had never had to suffer during these past 3 years, we wouldn't change a thing. Her fight to survive has made her into the person she is today. I admire Marisa more than anyone in the world. She makes me so proud to be her mother. So today especially, I thank God for giving me the opportunity to be Marisa's mommy and for giving me the strength and knowledge to care for her.
Happy Birthday Squirt! I love you so much!
Thursday, Feb 16, 2006
Thankfully, Marisa was released this afternoon. To go back to the beginning.... Her pediatrician thought she had pneumonia, so he sent us for a chest x-ray. That came back negative for pneumonia. The ped was concerned because of her prolonged fever, and increasing lethargy, so he said we needed to go to the hospital for fluids and blood cultures. I came home, packed, called transplant and headed to U of M. (Almost had a complete panic attack when I overheard that the patient in line ahead of me checking into the ER was a liver recipient who had an ACTIVE SHINGLES OUTBREAK) I quickly backed away from everyone and convered Marisa's face with my coat. They rushed him away to isolation. Then we got up there and they took us right back to the Peds area. Kicked someone else out of a room so Marisa could go into isolation. They never put us through triage since she's a transplant kid. Anyway...all the docs in the ER thought she sounded squeaky too and they ordered another chest x-ray. This one came back postive for pneumonia. SATs were very low, 88-91 for the most part. You wouldn't have know by looking at her though. Her breathing was not labored and she wasn't audibly wheezing.
So, at least we had a source for the fever. After a little decision-making regarding which antibiotic to use (she's allergic to cepholosporins), they decided on Unasyn and we got into a room pretty quick. She was given albuterol treatments every 4 hours and Unasyn evey 6 hours. We were fortunate to be given a private room even though the hospital was completely full.
After several hours of IV fluids, Marisa became a little crabby. This was a good sign! The lethargy was going away and she started to act like she didn't feel good. She wanted to watch Dora and didn't want me to talk to her. By 10am Wednesday, she wanted popcorn and was taking some sips of water. By evening, she was pretty much back to her usual goofy self. Surprisingly, aside from her electrolites, her labs stayed pretty good, ALT & AST were slightly elevated, but not too bad. By discharge, liver enzymes were back to normal.
She entertained herself during the last half hour of our stay by playing "Dr. Marisa." There is a lot of construction going on in the hospital, so when she's out of her room (she gets her own personal HUGE HEPA filter in her room) she has to wear a mask. The only way I could get her to wear the mask was to give her the "shower cap" and purple gloves so she looked like a "real" doctor. On our way out, all the way down the hall, she shouted, "I'm Dr. 'Risa, I'm Dr. 'Risa." (She doesn't say MARISA, it's just Risa!) Of course, she got lots of smiles and laughs.
So, we're home. She is asleep and I'm trying to keep Jackson and his flu bus away from her! Thanks for the prayers!
Wednesday, February 15, 2006 9:08 PM CST
Marisa is still in the hospital, but doing well. Once they got her hydrated, she perked right up. Not sure when she's coming home, but hopefully tomorrow.
Took Jackson to the hospital today. He has the flu. Threw up this evening in my classroom while I was preparing lesson plans for tomorrow.
Thanks for your prayers and checking in on Marisa.
Take care.
Frank
Monday, February 13, 2006 11:57 AM CST
UPDATE: 11:00 p.m. Tuesday
Marisa has pneumonia. They are still in the ER awaiting a room. Will post more when I hear.
Thanks for checking in on Marisa and keeping her in your prayers. We appreciate it.
Frank
UPDATE 3:30 pm Tuesday.....We're heading to the ER this afternoon. Can't avoid it any longer. We appreciate your prayers..... 
This is basically how Marisa has looked for the past five days....she can use your prayers....
Monday
We are still sick this morning. Marisa is still running a temp. Has been between 101-103.5 for several days now. Please say a prayer that this cycle breaks and she starts feeling better. So far we have avoided the hospital. I don't know how much longer we can hold off on it.
This morning I'm feeling very heartbroken for some families with some very sick little ones. Please say a prayer or two for these very brave kids and their families:
Isaac
Annika
Natalie
Aiden
And please continue to pray for Haley's family. They are still very deep in grief. Haley
Have a great week! We'll let you know how we're feeling later in the week.
Marisa's birthday is Friday, so we're hoping she's well enough to celebrate! We're mostly hoping that the celebration doesn't take place in the hospital....
Shannon
Wednesday, February 8, 2006 3:37 PM CST
Good news....bad news.....
First the good! Marisa had liver & kindey clinics yesterday. She gained 2 POUNDS in the past two months! Yahoo! What a victory in that department. Her labs were also perfect! ALT & AST were perfectly normal. Thank God! We are going to attempt to wean her from her blood pressure med. He took us down from 3mg/day to 2mg/day. I'll have to check her BP often and make sure that it stays happy. We are also decreasing her magnesium. Her level always runs a little low (1.1-1.4). Increasing the dose to three times/day didn't make a difference. We've tried that for several months now, so now that her liver numbers are great, we're going to try going back down to twice/day. Looks like her liver enzymes are happy that she has tubes in her ears! :-)
Now the not so good news....
WE'RE ALL SICK AGAIN!!! I could just scream right now. Saturday night, Camille cried real hard all night that her ear hurt. She couldn't sleep, and was in a lot of pain. I finally got her to sleep and when she woke up at 9:30 in the morning, her temp was 103.2. She said her ear didn't hurt as much, but I took her to the ER anyway. They couldn't see in her ear because there was so much wax, so he gave her an antibiotic and ear drops for the pain. Took her to the pediatrican Monday morning and he cleaned out her ear. In the process, he found lots of puss with the wax. Her eardrum had actually perforated. So, he increased her antibiotic and changed her ear drops. She has been home from school for three days, and is still running a low-grade fever.
Marisa slept all afternoon today and woke up with a fever of 102. Of course, the pediatrican's office is only open half days on Wednesdays, so I couldn't get her in. Transplant said to keep an eye on her and keep her hydrated. Hopefully the fever will break. I'll get her in to the pediatrican tomorrow if she's not better. She also has a cough and runny nose, so my guess is that it's viral.
And of course, a half hour after I discovered Marisa's fever, I started getting the chills and little by little, my head started throbbing and my body started aching. Took my temp and it's almost 101.
One thing is for certain....it's never boring in the Hamet household. We'd appreciate your prayers for quick recoveries for all of us. Hope you're all having a good week!
Love,
Shannon
Wednesday, February 1, 2006 2:08 PM CST
Marisa had her ear surgery today. Everything went well.
Yesterday she spiked a temp of 103.2. She was very lethargic also. She basically just laid on the couch and repeated over and over, "I just don't feel good." We got pretty nervous. Frank came home from work early and we got her into the pediatrician. He found that both of her ears were infected pretty bad. We were very thankful that he found something. I thought we were going to be heading to Mott. He started her on an antibiotic. Finally, at about 3:00 this morning, she perked up and started acting "normal." I wasn't happy that it was 3:00 in the morning...but was very relieved that Marisa was back to her old self.
The surgery was very quick. They drained out all of the infected fluid and placed the tubes. She has been sleeping most of the afternoon, but when she does wake up, she says that her ears hurt. Hopefully, the pain will become less very quickly. They said that she shouldn't have any pain, but since her ears were very infected, I'm guessing that is why they are hurting.
She had labs drawn yesterday too. They looked pretty good considering she had a very high fever. ALT & AST are still elevated (115 & 113 I think), but they are lower than they were two weeks ago, so I'm pretty happy with them. She has clinic next week.
Thanks for your prayers. We'll keep you posted on her progress.
Shannon
Monday, January 30, 2006 6:27 PM EST
Marisa is scheduled for her surgery to place the tubes in her ears this Wednesday. Right now she has a pretty nasty cold. Please say a prayer that she gets better so that they will be able to do the procedure. Right now, I'm doubting that they will do it unless she improves.
I'm also taking her for labs tomorrow morning. We'd appreciate a prayer about that also. They were still not getting much better two weeks ago. I was hoping for a big drop in the numbers this week, but since she has a viral infection, they will probably be elevated.
We'll give you an update when we have any news about the surgery or her lab results.
Shannon
Tuesday, January 17, 2006 2:09 PM CST
Don't forget that we started a blog:
http://www.marisahamet.blogspot.com
Update: Had labs drawn yesterday. Although they still were not very good, they are going in the right direction. Today I was told that she doesn't need to get them drawn again for two weeks!!! We're so happy about that! For those who know how to read these labs, here they are:
SODIUM (SOD) 138... 132-145 MEQ/L
POTASSIUM (POT) 4.3... 3.3-5.0 MEQ/L
CHLORIDE (CHLOR) 106... 99-111 MEQ/L
CO2 (CO2) 24... 18-28 MEQ/L
UREA NITROGEN (UN) 12... 5-20 MG/DL
CREATININE (CREAT) 0.3 L... 0.4-0.6 MG/DL
GLUCOSE (GLUC) 72... 50-130 MG/DL
CALCIUM (CAL) 10.4... 8.4-10.4 MG/DL
PROTEIN (PROT) 7.0 ... 5.8-8.0 G/DL
ALBUMIN (ALB) 4.3... 3.2-5.2 G/DL
AST (AST) 112 H... 2-50 IU/L
ALT (ALT) 159 H... 0-45 IU/L
ALKALINE PHOSPHATASE (ALK) 187... 70-350 IU/L
BILIRUBIN, TOTAL (TBIL) 0.2... 0.1-1.0 MG/DL
LDH (LDH) 225... 170-320 IU/L
MAGNESIUM (MAG) 1.4 L... 1.5-2.3 MG/DL
PHOSPHORUS (PHOS) 4.9... 3.8-5.8 MG/DL
BILIRUBIN, UNCONJUGATED (BU) 0.2... 0.0-1.0 MG/DL
BILIRUBIN, CONJUGATED (BC) 0.0... 0.0-0.3 MG/DL
WHITE BLOOD CELL COUNT (WBC) 8.4... 6.0-15.0 K/MM3
HEMOGLOBIN (HGB) 13.3... 11.0-14.0 G/DL
HEMATOCRIT (HCT) 39.5 ... 34.0-41.0
PLATELET COUNT (PLT) 259
Thanks for the prayers!
Shannon
1/12/06 Update: You can read the previous post by going to the black section. We have scheduled her surgery to place the tubes in her ears on Feb. 1. Ears looked OK today, no infection. So....no obvious reason for her elevated labs this week. Just praying that next weeks's look better.....
1/11/06
We finally got our appointment with the ENT at U of M. She goes tomorrow (Thursday, 1/12) morning. They will do a hearing test at 11:00 am and then she will have her ENT appointment at 12:50. It will be a long day. Your prayers would be appreciated. I'm very thankful that they were able to move this appointment up. It was originally scheduled for Jan 23. Hopefully we can arrange to have the surgery before the end of the month. We don't want her to have another infection before the tubes are placed.
She had labs drawn on Monday. They were not good. They were basically the same as last week: ALT 236 and AST 104. They should've come down a lot more since last week. She is not showing any signs of a viral infection, so there isn't any obvious reason for the elevated numbers. This could be indicating a problem. We need to get them drawn again next week and hope for much better numbers. PLEASE HELP US PRAY ABOUT THIS. I don't know what they next step would be.
Finally, we would like to ask you to support a young woman named Nicole Falvo who is running the Boston Marathon in honor of Marisa. She is a member of the Run for Research Team. They raise money to benefit the American Liver Foundation. This will be our second year with Marisa being part of the Patient Match Program. Here is Nicole's fundraising letter:
Dear Friends & Family,
As many of you know, I will be running my eighth marathon in April at the Boston Marathon®. This will be my third time running Boston, but I thought that I would make this one a little more memorable. As an already qualified runner, I have "double qualified" for Boston 2006 by joining the Run for Research®.
Run for Research® is coordinated by the American Liver Foundation®. The team promotes awareness of liver diseases and raises money to fund critical liver research. Inspired by a little girl named Marisa, I would like your help in saving others like her. Marisa will be 3 years old in February and has already had a liver transplant! When Marisa was born, she was diagnosed with Biliary Atresia. She did not have a biliary tree or bile ducts on the outside of her liver, without the medical advancements made through research, her life may not have been saved. For this reason, your support is critical. If you want to learn more about Marisa and her fight with liver disease, her website is www.caringbridge.org/mi/marisa.
I am asking all of my family and friends to sponsor my marathon run to support the American Liver Foundation®. I have set a goal of $700. If you are in the position to help me financially, I thank you in advance. If you cannot, as I run all 26.2 miles of the Boston Marathon® I ask that you keep me in your prayers, with special knowledge that you have shared in a commitment to this worthy cause.
Thank you for your support, and keep me in mind on April 17th.
Sincerely,
Nicole Falvo
PS Donations are tax-deductible. Checks should be made payable to American Liver Foundation and mailed to:
ALF (Nicole Falvo)
88 Winchester Street
Newton, MA 02461
Or you can donate online at www.liverteam.org and click on "Sponsor a Runner" to find my name.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We want to give Nicole a special thank you for her efforts in raising awareness of liver disease and helping to fund much needed research. Our prayer is that one day there will be a cure for Biliary Atresia. Without funding for research, the cure will never be found.
If you're able to, please help Nicole with her fundraising efforts. Even a small amount like $5 or $10 goes a long way toward helping children like Marisa fight the dreadful diseases that threaten their lives.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ok..that's all for today. I'll try to update again tomorrow after her ENT appointment.
Thank you for your prayers and love!
Shannon
Wednesday, January 4, 2006 7:45 AM CST
I'm going to try to switch websites. I'm starting a blog. That way, I'll be able to post more pictures, etc. The site is: http://marisahamet.blogspot.com/
I will hopefully have it up and running in a day or two. Once it's up, as long as it is working well for us and YOU, we'll start posting there instead of here. We're going to give it a try anyway! Please add comments there so we know you're visiting!
Thank you all for your kind words, well wishes, and certainly for your prayers.
Good news and not so good news today....
Good news first: I had her labs drawn yesterday. Unfortunately, they had to poke her 3 times to get the blood. However, the numbers were much improved! For those of you who know what these numbers mean, here are the results:
TACROLIMUS (FK506) (TACRO) 6.9
SODIUM (SOD) 139 ~~132-145 MEQ/L
POTASSIUM (POT) 4.7 ~~3.3-5.0 MEQ/L
CHLORIDE (CHLOR) 109 ~~ 99-111 MEQ/L
CO2 (CO2) 21 ~~18-28 MEQ/L
UREA NITROGEN (UN) 12 ~~5-20 MG/DL
CREATININE (CREAT) 0.3 L ~~0.4-0.6 MG/DL
GLUCOSE (GLUC) 86 ~~50-130 MG/DL
CALCIUM (CAL) 10.4 ~~8.4-10.4 MG/DL
PROTEIN (PROT) 6.5 ~~5.8-8.0 G/DL
ALBUMIN (ALB) 3.7 ~~3.2-5.2 G/DL
AST (AST) 104 H ~~2-50 IU/L
ALT (ALT) 236 H ~~0-45 IU/L
ALKALINE PHOSPHATASE (ALK) 170 ~~70-350 IU/L
BILIRUBIN, TOTAL (TBIL) 0.5 ~~0.1-1.0 MG/DL
LDH (LDH) 234 ~~170-320 IU/L
MAGNESIUM (MAG) 1.6 ~~1.5-2.3 MG/DL
PHOSPHORUS (PHOS) 4.5 ~~3.8-5.8 MG/DL
GGTP (GGTP) 25 ~~8-35 IU/L
BILIRUBIN, UNCONJUGATED (BU) 0.3 ~~0.0-1.0 MG/DL
BILIRUBIN, CONJUGATED (BC) 0.0 ~~0.0-0.3 MG/DL
CHOLESTEROL (CHOL) 147 ~~1-200 MG/DL
WHITE BLOOD CELL COUNT (WBC) 9.4 ~~6.0-15.0 K/MM3
HEMOGLOBIN (HGB) 13.2 ~~11.0-14.0 G/DL
HEMATOCRIT (HCT) 39.8 ~~34.0-41.0
PLATELET COUNT (PLT)359
For those who don't know what they mean, but are curious, the number just after the name is what her level was for this draw. The numbers after the ~~ is the acceptable range. So, if her number is below the range, hers was low, and if her number was above that range, then hers was high.
I'm VERY happy with these labs. On 12/31 her AST was 268 and ALT was 414. These are a HUGE improvement. The final pathology report from the biopsy is back. It did show some inflamation of the liver, but no one is really sure what that's about. Could be from recovering from an underlying infection, etc. The doctors are reviewing it and will decide when to get labs again. Probably next week.
Now for the not so good news....Marisa had her appointment with the ENT yesterday. He thinks she definitely needs tubes put in. Neither ear was infected right now, but the right ear had some cloudy fluid in it that will soon become infected again. He was very honest about wanting to send me to U of M for it. He works out of Beaumont. In the event that she needed to be hospitalized after, she should be where they know her, have her history, etc. Also the fact that her anesthesia records are at U of M. Although tube placement takes just a few minutes, she does have history of having an asthma attack when coming out of anesthesia, so her risk of having to be hosptialized after is much greater than your average kid who has tubes placed. I was very thankful that he was honest about having her where it's best for her! Although I really like him and trust him (just wish he worked out of U of M!), we now need to find a new ENT. His office is working on getting us an appointment quickly with the docs at U of M.
So, that's what is going on in our world. Camille and Jackson are back to school. Frank goes back next Monday.
Hope everyone is having a good start to 2006!
Love,
Shannon
Saturday, December 31, 2005 3:36 PM CST
Marisa is on her way to the hospital. She had a blood draw this morning and her numbers are elevated more than before. They are planning a biopsy tomorrow morning at 8:00 a.m. (New Year's Day) The assumption is rejection and they will start treating her for that after her biopsy.
Please pray that all goes well.
Thanks for checking in on Marisa.
Please sign the guestbook to let us know you've visited.
Happy New Year!
Take care.
Frank
Sunday, January 1st
Marisa is home!!! The biopsy results were negative for rejection. The doctor's aren't sure why her numbers are elevated, but it's not due to rejection.
Thank you very much for the prayers. Again, they worked. Praise God!
Thanks for checking in on Marisa.
Frank
Thursday, December 29, 2005 10:45 AM CST
Marisa can use some prayers right now. I had her labs drawn yesterday and they were terrible (AST 150 & ALT 243). Very elevated compared to the last ones that were drawn. We're hoping that it's just from the viral infection she had last week, but they really shouldn't still be elevated since she's been feeling better for 4 days. We need to have them drawn again next week. If they don't improve, the next step will be a biopsy to see if she's having rejection.
Shannon
Friday, December 23, 2005 12:29 AM CST
I have decided that the Hamet Family Calendar for 2006 is not going to have Dec 22-23 in it. In 2004, she fell down the steps and broke her elbow on Dec 22 resulting in an overnight admission to Hotel Mott and surgery on Dec 23. Now this year, she gets dehydrated on the 22nd resulting in an overnight admission with IV fluids. So next year....we're just skipping those two days.
We're home. She was admitted overnight and given IV fluids. Electrolites looked better this morning, so we were given a ticket home. Unfortunately, she is now having some diarrhea, so PLEASE PRAY that she doesn't get dehydrated again and we can be home and healthy for Christmas.
Thank you for your prayers and calls. They do make a difference.
Say a prayer for all of the sick children who won't make it home for Christmas. The hosptial was full today. We have couple of our little liver friends (Annika & Havalah) who will stay in the hosptial for Christmas too. Pray that they are able to enjoy it anyway.
Thank you all for stopping in. Please sign the guestbook so we know you were here.
Shannon
Thursday, December 22, 2005
UPDATE.....We're on our way to the ER with Marisa.......
Well....last night I cleaned up vomit from Marisa and Camille all night! No fun...I think Camille is feeling a little better, but Marisa just started vomitting early this morning, so she's still going strong. PLEASE say a prayer that this passes quickly and not only will we be able to enjoy a HEALTHY Christmas, but that she won't have to miss the appointment with her ENT tomorrow.
I also want to request prayer for a young man who was just diagnosed with cancer. He is the son of my dad's cousin (I think that would make him my third cousin...). Anyway, here is the email I got from his mom this morning:
Our son, Christopher (33) found out he had 90 percent chance of cancer about 1-1/2 weeks ago. He has been diagnosed with cancer after having the tumor removed last Wednesday. Further testing will be done tomorrow (CAT Scan) to see if it has traveled any further. We ask an interest in your prayers in his behalf. Chris also appreciates your prayers and concern on his behalf.
May you all have a Merry Christmas.
God Bless you,
Ken and Diane
Love,
Shannon
Dec. 20, 2005
I had Marisa at the pediatrician this morning for a re-check on her last ear infection. I was SURE that everything would be fine this time, but naturally I was wrong. Her ear is still pink with some fluid. So, now we're off to an ENT. I'm really hoping that tubes aren't required, but if they are, we'll manage. If she can handle tubes sticking out of her abdomen, then I think she can handle tiny ones in her ears. Her appointment is this Friday (it's a miracle that I got her in so quick).
Please continue to remember Haley's family. They are naturally having a hard time enjoying Christmas without Haley. Haley's Site. Also, keep Angus in your prayers as well.
Friday, December 16, 2005
Marisa had liver and kidney clinic this week. All was well with that, except her weight. She lost a little weight this month, combined with the fact that she gained NOTHING last month, she could use some prayers in this area!
Labs were good and her home blood pressures have been good, so no changes in medications, except we lowered prograf because her level was a tad too high. AND...THEY DON'T WANT TO SEE HER FOR TWO MONTHS!!!!! This will be the longest we've gone between clinic visits EVER! This is very exciting for me! We do need to get labs drawn again next week to check her prograf level since we changed the dose. And then if they are good, we'll need to get them done again in a month.
Asthma seems to be under control. She still has a little cough, but nothing too bad.
Please pray for one of our liver friends, Annika.
She's had two transplants and is having bleeding problems and won't be home for Christmas. Also, Havalah is having some complications and will probably have to spend Christmas in the hospital as well. Finally, Trenton is currently at UM Mott and having some difficulties. Thank you for your consideration in adding these three to your prayer lists.
Have a good weekend!
Shannon
Friday, December 9, 2005 4:03 PM CST
Marisa has an ear infection. She was prescribed Zithromax. Additionally, she is having complications with her asthma. She is receiving treatments here at home every 4-6 hours.
Thanks for keeping her in your prayers and for caring enough to check in on her.
Please pray for one of our liver friends, Annika.
She's had two transplants and is having bleeding problems and won't be home for Christmas. Also, Havalah is having some complications and will probably have to spend Christmas in the hospital as well. Thank you for your consideration in adding these two to your prayer lists.
Take care and God bless.
Frank
Friday, November 25, 2005 3:37 PM CST
Please say a prayer for our little friend, Trenton, who is getting his liver transplant this evening. You can read his story at:
www.caringbridge.org/visit/trentonlamadline
Tuesday, November 22, 2005 10:01 PM CST
Marisa is doing great! You wouldn't know by looking at her how much she has been through.
We are certainly very thankful this holiday season.
Happy Thanksgiving!
Frank
Saturday, November 5, 2005 8:55 PM CST
We are so thankful! Today is Marisa's one year anniversary of her liver transplant.
She has endured so much over the past two and a half years. Thank you for being there to support us and love us through some very difficult times. She is doing quite well right now. Of course, she will always be at risk for rejection and other complications, but we have learned to take each day as it comes and be thankful for every day we have with each of our three children. Today is a happy day for us and a victory for Marisa. She has fought so hard to get this far. She is my little hero and the bravest person I know. I'm very blessed to have been given the opportunity to be her mother.
While we are celebrating this happy event in our lives, we are very mindful of her donor family. They are surely missing their child at this time. Please say a prayer for their peace and comfort.
One month ago, a very special little girl passed away after an incredible fight with her liver disease. Haley was very dear to our family. Sadly, she did not receive her liver transplant in time. Today would have been her twelfth birthday. Please say a special prayer for her family also. They are having a very hard time and I'm sure today will not be easy for them.
Words cannot express our gratitude that God has seen fit to bring Marisa this far. Our prayer is that she has been able to bring hope and faith to those who know her and her story. She is a living miracle. Thank you for always remembering her and our family in your prayers.
With much love always,
Shannon
Wednesday, October 26, 2005 4:39 PM CDT
Marisa is still doing well. She did have an asthma episode this past weekend and it lasted into this week. The cough seems better. She also has an ear infection.
Jackson and Camille are both sick with mild colds. Frank had a pretty bad upper respiratory infection too. Don't know how I've managed to stay healthy, but so far so I'm feeling ok.
Not much is going on. Next week Marisa has her appointment with pulmonary to put together an ashtma management plan for this winter. Then the following week she has liver clinic.
We went to get our pumpkins over the weekend. The kids had fun. Of course, Jackson had to bring along his sword. Can't leave home without it. He must have 10 of them around here!
Thanks for checking in on us. Please continue to pray for Haley's family. They really need your prayers. Haley's birthday is coming up. Marisa's transplant anniversary and her birthday are the same day, Nov. 5. I know that will be a hard day for them. Please remember Marisa's donor family as well.
Shannon
Tuesday, October 11, 2005 3:32 PM CDT
Of course, I hesitate to post good news because for some reason it always seems to back-fire on us, but I wanted to share some happy news with you all.
Marisa had liver clinic this morning. She gained 1 1/2 pounds in 2 weeks! Best weight gain ever for her. She finally hit the 5th percentile. All of her labs looked great except her mag. It was low again at 1.1. I'm sure we'll be increasing the dose again (right now she's on 1.5 ml three times/day). Other than that, they were thrilled! She is 11 months post TX, so next month we'll be stopping cellcept. I'm hoping to get rid of actigall and baby asprin also in the near future. She's been on Actigall because of the bile leak & PTC tube but the tube was pulled 2 months ago, so she should be ready to stop it now. Right now she's on: Prograf, Cellcept, Actigall, Baby Asprin, Ferrous Sulfate, Magonate, Norvasc, Multi-Vitamin for her liver and Flovent and Albuteral for her asthma.
Thanks for the prayers!
Marisa has also decided to be a Big Girl and is refusing to wear diapers any more! She's not having a whole lot of success getting to the potty this week, but she is doing pretty well for the most part. She's very proud of herself and just loves her Dora potty seat. She wants to wear her Dora panties all day long. She runs to the potty about every 3 minutes. It's starting to wear me out, but I'm very proud of her. I expected her to be much more delayed in this department. Looks like she has caught up in all areas but speech now. It's a blessing to be cleaning up those accidents! :-)
Continue to remember Haley's family in your prayers. They are having a very difficult time.
Lots of love!
Shannon
Sunday, October 2, 2005 9:30 AM CDT
We're very sad this morning. We just heard the heartbreaking news that our very special "Liver Friend" Haley has passed away. Please pray for her family and friends who will surely miss her in this world. You can read about Haley's courageous life at her website: http://www2.caringbridge.org/ga/haley/index.htm
Love,
Shannon
Wednesday, October 5, 2005
Today is a day of sorrow for two special families we know. Haley's funeral is today. Please say a special prayer for her family. They are having a very, very difficult time dealing with Haley's passing. They need peace and understanding from God right now.
Today is also the one year anniversary of Baby Ava's passing. Her parents and brother will have a difficult time today. I know that they could use some extra prayers sent their way as well. Ava was born just three weeks before Marisa. They shared the same disease and some of the same complications. Ava's death was very painful for me. It hit too close to home. I think of Baby Ava and her family quite often.
Thank you for remembering these two families in your prayers today.
Love,
Shannon
Thursday, September 29, 2005 7:11 PM CDT
Too tired for much of an update, but wanted to let you know that Marisa was discharged today. We just got home (8:00 pm). She is feeling much better. Thanks for your prayers.
Shannon
Tuesday, September 27, 2005 7:01 PM CDT
Marisa was admitted to the hospital today. She is somewhat dehydrated and they don't want to take any chances. Hopefully it will only be for a couple of days. Thanks for checking up on Marisa and please continue to keep her (and Shannon) in your prayers.
Take care.
Frank
Saturday, September 24, 2005 4:34 PM CDT
Marisa has been sick for the past couple of days. Had to take her to the hospital yesterday for labs, urine analysis and stool analysis. I'm thinking she may have rotavius. She has had pretty bad diarrhea for 3 days now. She's not any better today. Labs were fine yesterday, so they sent us home. They didn't have the urine or stool results yet, but were satisfied that she wasn't dehydrated, so we escaped an admission. I'm afraid that if she doesn't get enough fluids today, that we may end up in the hospital tomorrow. She's not drinking very well today.
We'll keep you posted. Just wanted to let you know that she's under the weather right now.
Thanks for your prayers.
Shannon
Tuesday, September 13, 2005 2:54 PM CDT
Marisa had Liver and Kidney Clinics today. Everyone was very happy with how well she is doing. Labs were perfect for the third time in a row! Her blood pressure readings at home have been good, so the kidney docs don't want to see her again for 3 months. They are also leaving her blood pressure med at the same dosage. We finally found a drug and dosage that is keeping her at a good level.
Everyone at liver clinic was very pleased with her. She is gaining weight, growing, and developing very well. They will see her again in 4 weeks. Hopefully at that point we can change it to every 2 months! We're discontinuing a couple of meds and hopefully will get rid of a couple of more next month. Things are finally going pretty well!
Thank you for all of your prayers! They are truly working.
Will update again soon.
Shannon
Saturday, September 10, 2005 6:47 PM CDT
Marisa continues to do quite well. We are very thankful. She has now had perfect labs two weeks in a row! That's a first! She has liver clinic this coming Tuesday, so hopefully they will agree that she is doing fantastic.
We had Camille and Jackson's birthday party today at Pump It Up. Jackson turned 5 two weeks ago and Camille will turn 7 this coming Thursday. It's hard to believe they are that old already. If you'd like to see pictures from the party, you can follow this link:
Birthday Parties 2005
Thanks for checking in on us! Sign the guestbook so we know you were here. Hope you all have a great week.
Shannon
Tuesday, September 6, 2005 3:50 PM CDT
Marisa had labs drawn this morning. They were PERFECT! Her liver is happy to have her tube gone! She goes to liver and kidney clinic next week. Thanks for checking in on her. We appreciate your prayers.
Shannon
Saturday, September 3, 2005 3:51 PM CDT
Marisa continues to thrive! No complications since her tube has been removed. Thanks for checking in on her. Take care.
Frank
Friday, August 19, 2005 10:49 PM CDT
Marisa is doing great! We attended the Detroit Tigers game this evening and she had a wonderful time, especially enjoying the fireworks afterwards. She is sleeping through the night and her activity level is as high as its ever been.
Thanks for checking in on Marisa. Take care.
Frank
Monday, August 15, 2005 10:57 AM CDT
Marisa's PTC tube was removed this morning. We weren't expecting that-we were under the impression it was simply a tube change-so we were shocked but elated that it was gone. Thanks for the continued thoughts and prayers.
Frank
Thursday, August 4, 2005 12:11 AM CDT
Havalah is having a very serious complication to her transplant yesterday. Her hepatic artery has clotted. She is in surgery right now. The surgeons are trying to re-open the artery. If this is unsuccessful, then she will need to be relisted Status 1 immediately. If re-listing is needed, she must have another transplant within the next several days in order for her to survive. PLEASE say lots of prayers for this little girl. Her family is very frightened.
UPDATE: Looks like the surgery was a success. The doctors think they fixed the problem. They are keeping a close eye on her. Continue to pray....
Wednesday, August 3, 2005 10:57 AM CDT
Please say a prayer for Marisa's little "liver Friend" Havalah. She is in surgery right now getting her Gift of Life.
Thursday, July 14, 2005 2:45 PM CDT
They found a stricture today when they did the dye flush, so she still has her tube and it won't be going anywhere for quite a while. She'll have at least 2 more tube changes before they remove it.
I'm of course wishing that it was out, but I'm very thankful that it was still in place when she developed the strictures. If they had already removed the tube, then she could be having a much more serious issue right now. They ballooned it today and were able to increase the tube size by two sizes, so that's good news. Hopefully next month they will be able to pull it back so that it's above the stricture and see how she does. We'll see though....I'm not holding my breath!
Thanks for the prayers!
Shannon
Sunday, July 10, 2005 9:05 PM CDT
We're home!!!
We made it home at 8:00 a.m. this morning. It was a long trip, but we had a lot of fun. The kids did so well. I'll post more pictures to the photo album this week.
We have a busy week with Marisa. Liver clinic on Wednesday and she's scheduled for her tube change/removal on Thursday. Say a prayer that it actually comes out this time!
Thanks for your prayers while we were on our trip. Please continue to remember the family of Marisa's little friend Daniel. We're still very sad about him passing away. Our hearts go out to his family.
Love,
Shannon
Sunday, July 3, 2005 5:38 PM CDT
Marisa's labs were wonderful! Still enjoying our vacation. Thanks for checking up on Marisa.
Happy Fourth of July!
Take care.
Frank
Monday, June 27, 2005 0:35 AM CDT
Our trip has been wonderful! Marisa's health is fine-we have to take her for a blood test this morning-and the other kids are enjoying Disney.
On a sadder note, we received word on Friday that Daniel, whom we've posted about before, died suddenly Thursday night. He turned one back in April and received his new liver a few days later. An autopsy was done to determine the cause, but the results won't be back for weeks.
Please pray for his mother, Jennifer, his father Marc and his brother Griffin. A memorial service is planned for Tuesday.
Take care and thanks for checking up on Marisa.
Frank
Friday, June 17, 2005 5:41 PM CDT
We're leaving for California right now! We have quite a road trip ahead of us. Not sure when we'll be able to update this site. Might not be until we're in Flagstaff the first week of July. We appreciate your prayers for a safe journey for our family and no medical complications for Marisa.
God bless you all.
Shannon
Thursday, June 9, 2005 2:29 PM CDT
Marisa did not have her tube removed yesterday. They changed the tube and replaced it with a different kind of tube. The good news is that the doctor said he's now postive that the leak has healed. He wants to wait 4 more weeks before removing it just to be on the safe side. If it was removed and then she developed a problem, it would be very difficult to place it again.
We have been given permission to let her swim in chlorinated water and take a bath! I just have to cover it the best I can with plastic wrap and then clean the site and change the dressing when she's out. I'm THRILLED about this. She hasn't had a bath since before LABOR DAY of last year.
She did well with the procedure yesterday. No big asthma attack even though she went in sounding pretty junky.
We're preparing to go on our trip to California and Arizona next week. The kids are so excited about going to Disneyland. Please pray for a safe trip for us and for no medical complications for Marisa.
Tuesday, June 7, 2005 8:35 PM CDT
It was our nurse who made the suggestion. She didn't say we couldn't go (and said that she would most definitely tell us no if she thought we shouldn't go). She is just nervous about the tube. (hopefully it will come out tomorrow!)
Today the doc said it was ok to go. Her labs are good and we'll check them again before we leave and then when we get back. If anything happens, we'll get to one of the centers along the way. They are comfortable with us seeing any of the main centers.
They put a binder together with all of her medical info, doc notes, surgery notes, procedures, etc. That way if something were to happen, anyone could look at it and see her complete history.
We are driving with all of the kids. However, we are going to take our time, stop and sleep in a hotel every night, etc. We are in no hurry, so stopping for the kids to run around for a couple of hours or so is very possible. Frank will be out of work for the summer, so we don't have to get back in a hurry for anything.
So, as of now, we're going. Pray that the darn tube comes out tomorrow! That will be one less worry. We really need this vacation. It has been a very long two years as I know you can all understand. We're anxious to get away and have some fun. I also can't stand the thought of disappointing Camille and Jackson yet another time.
Monday, June 6, 2005 1:29 PM CDT
Well, last Thursday's labs were PERFECT. I knew I should've held my breath longer....
She started coughing again over the weekend. Didn't just sound like asthma, so I took her to the ped this morning. She has a cold, her nose is now runny, her right ear is infected, her lungs sound junky, she's wheezing again, her PTC tube came unstitched and is trying to slip out of place (I taped the heck out of it to get it to last) and she has her appointment with interventional radiology on Friday for her tube change/removal. At this point, anesthesia won't touch her. However, since her tube is already out of place, I don't know what will happen. She can't wait much longer. I'm doubting that it can even wait until Friday.
Don't know yet if we will have to cancel our trip out to CA. They are a little nervous about us traveling with the tube and there are different concerns about traveling so soon after removing it (assuming it comes out on Friday). Our plan is to leave next Friday. Just one week after the possible removal.
We have liver clinic tomorrow, so we'll have to ask lots of questions and see what they say. They are not telling us NOT to come, but doesn't sound like they really think it's the best thing to do. Haven't talked to our doc yet, just talking with the nurse. She doesn't think it's the greatest idea, but trusts us to take care of her, get her the help we need on the road, etc. We'll see what the doc says tomorrow.
Will give you an update tomorrow...
Friday, June 3, 2005 9:46 PM CDT
Marisa had a blood draw yesterday and her labs look great! They are very pleased. Her steroids were decreased and we hope to get her tube out next Friday. Take care.
Frank
Monday, May 23, 2005 9:04 PM CDT
Of course, I'm a little nervous to post good news. It always seems to backfire.
Labs were better this morning. I didn't see the labs for myself, but the doc said AST was normal & ALT was 80. No need for another biopsy or another admission. They had a good drop since Friday.
PTC tube was changed and backed out some. As long as the numbers are good when the next change is scheduled (2-3 weeks), then it will be pulled. The leak is gone and everything looks great. No strictures, etc. He didn't want to pull it today since she just had rejection and the numbers weren't all normal. Didn't want to shock the liver too much.
Asthma was pretty much under control. Pulse Ox was about 90-91 for quite a while, but we gave her a treatment and within a half hour or so it was up to 94 and then got up to 98.
So, overall the day was a good one. I still have my little steroid monster running around here. I need to wait for my team to get back in a couple of days and see when we can start weaning the pred down from 10 mg.
Thanks for the prayers! They certainly were answered.
Shannon
Sunday, May 22, 2005 3:27 PM CDT
Thanks everyone. I haven't seen a computer in a week!
Here's what's happening tomorrow....
7:00 am blood draw
8:00 PTC tube change/ possible removal?????
Recovery room...page GI and see what the labs look like. If they don't like them, then we will be admitted for another biopsy.
Of course, all of our docs & Marisa's nurse are in Seatle for the Transplant conference, so it's harder to deal with the people at the hospital. I always wonder, "Would Dr. Lopez & Dr. Magee agree?" When they are here, I call and find out!
On top of everything, she is having an ashtma episode this week. I know anesthesia is not going to want to put her under tomorrow. Unfortunately, the tube has been in for 4 weeks and needs to be changed. It's just barely hanging on by the stitch. So I'm giving albuteral every 3 hours today trying to get everything under control for tomorrow.
She had 5 days of 100mg solumedrol and came home on 10 mg daily. Cheryl....I really appreciate Haley's "Prednisone" song now!!!! Her siblings have a few battle wounds from this weekend....
Frank will update you tomorrow if we are locked back up. Hopefully I'll be home to do it myself!
Shannon
Mommy to Little Marisa, BA, Kasai 5/1/03, 2 years old, two broken bones, listed for TX 11/03, GIFT OF LIFE 11/04!
and Camille (6 years old) & Jackson (4 years old)
Friday, May 20, 2005 9:07 PM CDT
Marisa came home this evening. Her ALT was the same and her AST was down to 70. Her bili dropped to 0.2. She gets a blood draw Monday and if the numbers aren't better she is going to have another biopsy. Will follow up Monday. Take care.
Frank
Dad to Little Marisa, BA, Kasai 5/1/03, 2 years old, two broken bones, listed for TX 11/03, GIFT OF LIFE 11/04!
and Camille (6 years old) & Jackson (4 years old)
Thursday, May 19, 2005 11:14 PM CDT
Marisa is still in the hospital. Her lab draw from this morning compared to Wednesday morning:
bili. Wed. 0.2
Thurs. 0.6
AST Wed. 90
Thurs. 110
ALT Wed. 148
Thurs. 125
They had said yesterday that if her numbers weren't "significantly" down that they would keep her for five days rather than three. After that, they would up the dose. Shannon wasn't able to talk to any of the doctors today, so we won't know the plan until tomorrow morning. Thanks for checking in on Marisa. Take care.
Frank
Wednesday, May 18, 2005 2:39 PM CDT
Her numbers have come down, but not far enough. They want to keep her another day and check her labs again tomorrow morning. Thanks again for the thoughts and prayers.
Frank
Tuesday, May 17, 2005 8:07 PM CDT
Marisa is still on her steroid treatment to combat the rejection. They didn't do a blood draw today, so we won't know until tomorrow when they do one what her liver numbers are. Marisa is acting crazy (from the steroids), but other than that, she is doing great. Will update Wednesday when I hear anything further.
Frank
Monday, May 16, 2005 7:07 PM CDT
Minimal Acute Rejection is what the doctors are calling it. Three days of steroids and then hopefully home. Will update when we hear anything more or different. Thanks and take care.
Frank
Monday, May 16, 2005 0:42 AM CDT
Marisa will be going into the hospital Monday morning for a liver biopsy. The doctors think she may be having some rejection. Her labs have been pretty bad over the past month. They keep going up and down and are now up again. If the biopsy is positive for rejection she will remain in the hospital for most of the week for treatment.
We would appreciate it if you would remember her in prayer.
Love,
Shannon
Tuesday, May 3, 2005 7:21 PM CDT
Well...Marisa is sick again. We had a trip to the ER on Saturday for a high fever. After 6 hours, two pokes, lots of blood work, and one dose of IV antibiotics, they sent us home. Her labs looked better than they had on Saturday. It's great news that the labs are trending down still, even with a viral illness. She seemed to be doing pretty good, but this morning she started wheezing and is getting more asthmatic as the day goes on.
Frank went to the doc today and she told him that he has walking pneumonia, so I'm nervous that this is what Marisa has also. She has a doc appt in the morning, so we'll see...
Daniel is doing very well. Thanks for the prayers for him and his family.
We'll let you know how things progress here...
Thursday, April 28, 2005 6:44 PM CDT
Thank you so much for your prayers. I just got a call from her doctor about the lab results from this morning. There was a big improvement in the numbers! One is in the normal range and the other is half of what it was. That number is still very elevated, but he was happy that it is trending down. For now, we'll just keep things like they are and check the labs again next week. No biopsy is required at this time.
I'd like to ask you to remember a little friend of ours also. Daniel just turned one last week and he got a new liver for his birthday! He received his transplant on Tuesday. He is still in the PICU at U of M but he is doing well. Please pray for an uneventful recovery for this little guy.
We'll continue to update Marisa's website about her progress. I won't send out another email about the labs next week unless something urgent comes up. Thank you again for your prayers. As always, they made a difference.
Love,
Shannon
Tuesday, April 26, 2005 8:43 AM CDT
On Friday of last week Marisa had her broviac taken out. The IV line had been in since Labor Day of last year. Although it is nice to see it gone, now she needs to get poked for blood draws, so I have mixed feelings about the line being pulled. At the same time as the broviac removal, she had a routine tube change on her PTC (bile drain). Thankfully, all went well. She had no asthma symptoms coming out of anesthesia and was able to come home without a hospital stay. They are hoping to be able to remove the bile tube in 3-4 weeks for good.
The bad news is that her liver function numbers have been steadily going up over the past two weeks. They were extremely elevated last week and I had to get them re-drawn yesterday morning. They were not much better. We are increasing her Prograf (rejection med) for a second time in two weeks (the dose is now triple what it had been) and need to get labs drawn again on Thursday. If there isn't an improvement, she will need to have a liver biopsy to check for rejection.
We would appreciate your prayers for better labs on Thursday so she can avoid a biopsy as well further improvement with the bile leak so she can have her tube taken out finally.
Thank you for your prayers and the constant love and support you show our family.
Love,
Shannon
Friday, April 22, 2005 1:00 PM CDT
Marisa came out of surgery at about 2 p.m. Her broviac is out and her PTC tube was capped. No breathing difficulties whatsoever. She should be coming home in a couple of hours. Thanks for all the prayers. Take care.
Frank
Monday, April 18, 2005 9:58 AM CDT
This week is a very busy week for Marisa and her mother.
Monday: Appointment with pulmonology. Hopefully they can resolve her issues with asthma so it doesn't present such a problem post-surgery.
Tuesday: Regular Liver clinic.
Wednesday: Nothing scheduled.
Thursday: Speech appointment.
Friday: Scheduled surgery for PTC tube change and removal of Broviac.
All of the above are at U of M Mott Children's Hospital in Ann Arbor.
As always, thanks for your continued support. Will update after Friday's surgery. Have a great week.
Frank
Tuesday, April 12, 2005 8:13 PM CDT
Marisa is home! Thanks for all your prayers. Her cultures came back negative. The doctors believe it was something viral that caused her fevers. They plan on taking out her broviac next week. That will be one less possible source of infection. Take care.
Frank
Tuesday, April 12, 2005 11:25 AM CDT
Marisa will be coming home from the hospital today as long as her cultures come back negative at 5:00 p.m. That will be 48 hours. Thanks for all your support. Take care.
Frank
Sunday, April 10, 2005 0:15 AM CDT
Marisa continues to do well. She has been outside enjoying the weather the last few days. Took her to the park and walking around the neighborhood. It is such a joy to see her so happy!
Marisa was the poster child for the 5th Annual Bid for Life put on by the Michigan Chapter of the American Liver Foundation. The festivities took place at the Atheneum in downtown Detroit Friday night. Sherry Margolis from WJBK, Fox 2 was the host and Ken Daniels, voice of the Detroit Red Wings was the auctioneer. Shannon was the keynote speaker and did a wonderful job. She gave a fifteen minute speech about Liver disease and how it affects individuals and the families that love and care for them. I, of course, was very proud of her. Don't think I would have been able to pull it off. Way to go Shannon!
What a difference a day makes. Marisa has a fever of 103. We are on the way to the emergency room. They want to keep her in the hospital for at least 48 hours for observation. Please pray this is something simple and she can come home soon. As always, thanks for all the thoughts and prayers.
Frank
Sunday, March 27, 2005 9:51 PM CST
Happy Easter!
Sorry I'm late on this update. It has been a long weekend. I took her to the hospital yesterday and they did an "emergency" tube change. The tube was out of place. It had pulled out about 1 cm. Thankfully, she had no breathing troubles during the anesthesia and they sent us home right after she woke up. She seems to be doing fine. Her side is a little tender, but it's better today than it was yesterday. Thank you Joyce for coming to sit with me at the hospital...
Today was a good day. Camille woke up at 6:15 wondering if the Easter Bunny came yet. She happened to come downstairs just as the Bunny was hiding the eggs! Somehow she didn't figure out what I was up to. I sent her back upstairs to go back to sleep until Jackson and Marisa woke up. Can't figure out how she didn't know what I was doing. I actually had the egg carton in my hand when she came down the steps.
The kids had a fun day though. Although they enjoy the Easter Bunny stuff, I was proud of Camille this morning when she was telling me the real reason we celebrate Easter (even before we went to Church!).
Marisa doesn't have any appointments scheduled for a few weeks. I'm hoping we can keep it that way!
Have a good week.
Shannon
Friday, March 25, 2005 10:28 PM CST
Back to the hospital in the morning......
Noticed this evening that she had leaking around her PTC tube site. Upon further investigation, discovered that the stitch holding her tube in place had come loose and the tube has moved out of position. Angio is going to attempt to reposition the tube. If this cannot be done, then it will be replaced. Everything is still up in the air as to when it will all happen tomorrow. NPO at 2am. Hopefully she'll be in interventional radiology at 10:30. They want an ultrasound first and GI hasn't been able to reach anyone in radiology to set this up. We need to be there at 9:00am. Hopefully she won't be screaming all night because she's hungry!
Say a prayer that she is in and out with no problems tomorrow. Don't want Camille and Jackson disappointed that we're not here for Easter. We were also having Marisa's birthday party on Easter. Not a good weekend to end up back in the hospital. Will update when we can.
Tuesday, March 22, 2005 4:18 PM CST
Marisa is doing fantastic! Her labs this past week were wonderful and she gained 14 ounces in two weeks. They are very happy with her progress. We will be celebrating her birthday on Easter since we didn't have a chance in February because of all the complications. Thanks to everyone for your continued support. We know we couldn't have made it through all the trials and tribulations without all of your help. Take care and enjoy the Easter holiday!
Frank and Shannon
Sunday, March 13, 2005 2:27 PM CST
It's good to be home for the 4th time in 4 weeks! Don't think I'll ever catch up on my sleep, housework, etc.
Bile leak plan: JP is out! Wonderful to say good-bye to it after 4 months! Now we just watch for any signs of bile collecting in the abdominal cavity (fever, extreme pain, etc). PTC is in place and will remain there for at least another month (probably longer). My personal opinion is that she will end up needing surgery to correct the problem. It's been leaking for 4 months now. Hopefully I'm wrong. We'll give the PTC a chance to correct the problem (it's only been in for 2 weeks now). It's been a very successful procedure for lots of kids, so hopefully Marisa will fall into that category and avoid a 4th opening of her abdomen! I think maybe I'm just trying not to get my hopes up.
Asthma plan: Didn't see the pulmonologist while inpatient. The ped docs took care of that part of the stay. Transplant is going to get me a referral. We switched from Pulmocort (which had only been started on Monday) to Flovent 2x/day. Although she hates having the mask slapped on her face, it's SO MUCH QUICKER (45 seconds versus 25 minutes!)to just use the little pump inhaler than to use the nebulizer. They also gave me two albuterol inhalers and a mini spacer to keep with us while we're out. That's a relief. Nebulizers aren't the easiest thing to tote around! She came out of anesthesia in a severe attack. Sat's were about 85. Really scared me. Not comforting to see concern on the face of your anesthesiologist! She's never had trouble coming out of anesthesia before and she was clear going in. They gave her albuterol treatments in the recovery room and she was breathing well enough to go to the floor. There, we were giving her 5mg of albuterol every 3 hours. She was sating 90 at best. Spent the whole day/night holding O2 in her face (she wouldn't leave the nasal thing in place, so I had to hole the blow-by in her face to keep the sats up). She was making it about 2 1/2 hours that way, then her sats would drop to the 85 range again. O2 right in her face kept them at a safe level. Finally, after 2 days, she was in the 95-99 range all day on Friday without any O2. Still doing treatments every 4 hours with 2.5 mg of albuterol. Don't want it to flare back up. Hopefully the maintenance meds will work. It takes up to two weeks for it to get into her system, so we'll see how things go.
Shannon
Friday, March 11, 2005 9:45 AM CST
Marisa's JP tube was pulled yesterday. It had been pulled so far out that they decided to completely remove it. Her breathing issues have been resolved, but the hole where the JP tube was is not leaking any bile like they thought it would. There is a dressing over the hole and the doctors assumed that it would simply leak into the dressing. That is NOT happening. There is some concern that the bile is leaking inside her belly somewhere where it shouldn't be. If so, that would present some problems. At this point she isn't showing any indications of a fever, but her belly is tender. They are not sure if this is from the hole/wound or a reflection of the bile causing her discomfort. Otherwise, she is acting perfectly normal. Will post when we hear more. Thanks for the thoughts and prayers.
UPDATE: MARISA IS ON THE WAY HOME. The doctor will follow up on Wednesday, but didn't think the bile was causing a problem. Have a great weekend.
Frank
Wednesday, March 9, 2005 9:17 AM CST
Marisa had another surgery (procedure) this morning with regards to her bile leak. They decided to pull the JP tube out as far as it would go without completely taking it out. She is in recovery now and it appears that they will keep her overnight for observations. She has also continued to have breathing problems and the doctors suggested we see a pulmonologist for her asthmatic condition. Thanks for your continued prayers.
Frank and Shannon
Friday, March 4, 2005 5:45 PM CST
Marisa is home. They couldn't find the source of the bleeding and it has since stopped, so it appears that all is well. Thanks for your prayers and support.
Frank and Shannon
Friday, March 4, 2005 9:42 AM CST
They are planning on doing an ultrasound sometime this morning. The bile has resumed flowing and if the ultrasound is positive and her labs are okay, then she will be coming home. Thanks for the continued prayers.
Frank
Thursday, March 3, 2005 6:23 PM CST
Radiology claims everything looks good, yet there hasn't been any bile flowing through the PTC tube in the last 18 hours....
Shannon was waiting to talk to the doctors to find out what the next step will be.
Thanks for your continued support.
Frank
Wednesday, March 2, 2005 9:31 PM CST
Shannon is on her way to the ER with Marisa. She has blood in each of the drains as well as at the site of the PTC. Sounds like they will keep her overnight for observation as well as running some tests tomorrow. Please keep her in your prayers. Thanks again for all the support. Will post more when I hear of any updates.
Frank
Thursday, February 24, 2005 10:32 PM CST
Marisa got over her asthmatic symptoms and was able to have her procedure done yesterday. Thankfully everything went very well and (for once) we only had a 24-hour stay. We came home this afternoon.
I was very surprised when she came out with a PTC tube. (The PTC tube goes in through the wall of the abdomen, goes through the liver, and into the small intestine. It has holes all the way along it and should allow the bile to flow through it and away from the leak, allowing the hole to heal.) If you remember, two weeks ago they thought the JP tube had perforated the section of bowel being used for bile drainage. The plan was to back the tube out a little bit more under sedation in interventional radiology. As it turns out, this time they could see that the tube had adhered to the OUTSIDE of the bowel and that it wasn't inside. They could see the leak this time also, last time they couldn't. So, while I'm not happy that we have to deal with this HUGE bag & long cord, plus we still have the JP drain, I am happy that at least we know what the problem is and we're on our way to getting it taken care of. The outcome could've been much worse. She came very close to needing real surgery because they had a hard time placing the PTC tube since the bile ducts had constricted some due to the leak. They tried a couple of different ways and thankfully got it in. She is still in some pain, but happy to be home. She goes back for another procedure in two weeks. They will again inject dye and see how the leak is doing. If all goes well, the original JP drain will finally be removed after 3 1/2 months. She will have the PTC tube for a minimum of 6 weeks.
And, as if I haven't been sick enough during the past six weeks, I went to the doctor as soon as I got home for an ear ache and turns out I have a middle ear infection and swollen tonsils. Anyone else ready for spring to arrive??? :-)
Thanks for your prayers this week! We'll keep you posted on what's happening. I'm going to post a picture of her with all of her tubes on her website soon. You'd be amazed at how much plastic is sticking out of that tiny little body!
Love,
Shannon
Thursday, February 24, 2005 11:20 AM CST
Marisa is coming home later this afternoon. Thanks for all your thoughts and prayers.
Frank
Wednesday, February 23, 2005 2:51 PM CST
They did find a bile leak and placed a PTC tube. They hope to pull the JP tube (the one she has had since transplant) in a couple of weeks and HOPEFULLY this PTC tube in a month. It has been about four (4) hours since recovery and still no meds. Mom is very unhappy about that. Thanks for your thoughts and prayers.
Frank
Wednesday, February 23, 2005 8:53 AM CST
Marisa is currently in surgery. Will post more later.
Frank
Tuesday, February 22, 2005 8:24 AM CST
Marisa is better this morning. She slept pretty well last night. As of right now, we are planning on going ahead with the procedure tomorrow. If we get there and anesthesia thinks she sounds too junky, then we'll cancel and come home.
Thanks for your prayers. We'll keep you posted.
Monday, February 21, 2005 7:23 PM CST
After several hours in the ER, they decided to send Marisa home. It was borderline whether or not they would keep her, but since we're basically on a first-name basis there, they trusted me to bring her back if things got worse. There are far fewer germs at home to worry about. The x-ray showed no pneumonia although it was questionable at first. The radiologist said it looked ok though. We're giving her a high dose of steroids for the next three days and I need to do breathing treatments every three hours. If this doesn't keep her "comfortable" then I need to return to the ER.
Thank you so much for your prayers. I won't know until tomorrow if they are going to cancel surgery for Wed. I'd be surprised if they went ahead with it. We'll keep you posted.
Monday, February 21, 2005 8:39 AM CST
Good morning. I am on my way to the ER at U of M with Marisa. She has been wheezing since Saturday evening. It got pretty severe last night. Nebulizer treatments are not really even touching it. She also is having some belly pain. We're nervous that some bile could be leaking into the abdominal cavity. This could make her very sick. She is not running a fever, so that is good. I'm expecting them to admit her.
She was also scheduled for surgery this Wednesday for them to manipulate the drain tube. I think the plan was to change it to a different tube. Looks like that will have to be cancelled. They won't put her under anesthesia if she is having respiratory distress.
Please say a prayer that all goes well at the hospital and that she has no major complications like pneumonia that can be very serious in an immunosuppressed person. We'll update you when we're able to.
Shannon
Thursday, February 17, 2005 11:21 AM CST
HAPPY BIRTHDAY MARISA!
Marisa is two years old today. We would like to thank everyone for all of your support throughout these last couple of years. Take care.
Frank and Shannon
Monday, February 7, 2005 9:57 PM CST
Marisa came home this afternoon. The official word is that her drain tube has perforated a section of the bowel that is being used for bile drainage. That's what has been causing the bile drainage in the JP tube. The surgeon who performed her liver transplant indicated that it would probably take about ten more times of backing out this tube until it is completely removed. This will be done every two weeks or so. Thankfully they won't have to hospitalize her each time. The odds of this being successful is roughly 50%. If it is not, they will need to surgically repair it. Thanks for all the prayers and please continue to pray for her.
Frank and Shannon
Saturday, February 5, 2005 6:45 PM CST
Marisa has been under the weather all day today. They started her on an I.V. to hydrate her. They believe it is virus related and not an indication of a problem with her liver. Thanks for all the prayers.
Frank
Friday, February 4, 2005 12:20 AM CST
The best case scenario was realized this morning: After injecting dye through a needle they surmised that the leak could possibly heal on its own. They decided that they would simply pull the existing tube out a little bit and monitor the results. If there is no apparent leakage, which would manifest itself through a fever or belly pains, then they will release us some time tomorrow. In a couple of weeks they will again pull the tube out a little bit more and monitor results again. Hopefully, this will allow the leak to heal itself and eventually the tube will be completely removed. If at any time she shows signs of fever or belly aches that are attributed to bile leaking, then they would have to go in and surgically resolve the leak.
Thanks for all your continued prayers. Shannon is doing somewhat better today and as soon as a room is cleaned, she will be taking a long nap at the MedInn. Take care.
Frank
Thursday, February 3, 2005 11:49 PM CST
Marisa was discharged from the hospital yesterday. She is doing fairly well. She is going to have her surgery tomorrow (Friday) morning at 8:00. Please remember her in your prayers.
I ask that you please say a prayer for me also. I am quite ill right now. I'm not sure how I'm going to be able to be there for her throughout this surgery and recovery.
We'll keep you posted on the outcome of her surgery.
Shannon
Thursday, February 3, 2005 1:15 PM CST
Marisa was released from the hospital yesterday afternoon and is still scheduled for her procedure tomorrow to address her bile leak. Please keep her in your prayers. Thanks.
Frank
Wednesday, February 2, 2005 12:30 AM CST
Marisa gained about a pound and a half after having her I.V. placed. She is doing much better today. Still some diarrhea, but no vomiting since yesterday. They even mentioned that she could come home this evening!?!? Thanks for all the prayers. They DID make a difference.
Frank
Tuesday, February 1, 2005 7:50 PM CST
Marisa was admitted to the hospital this afternoon. She had been vomiting quite a bit yesterday and throughout the night. They are worried about dehydration. If all goes well and this is simply a virus, they still plan on doing her surgery Friday to resolve the issue with the bile leak. Your prayers will certainly be appreciated. Thank you.
Frank
Monday, January 31, 2005 5:56 PM CST
URGENT PRAYERS NEEDED FOR OUR SWEET LITTLE LIVER FRIEND, HALEY. Please drop to your knees and pray for Haley. She is 11 years old with Autoimmune Hepatitis and Lupus. Haley had a MAJOR brain bleed on Saturday and is in very serious condition. She needs help from above. We love this little girl very much and hate that she is going through this. Thank you for your prayers.
Marisa might have the flu. She is vomiting. Liver clinic is tomorrow. Hopefully they don't keep her. She is still scheduled for her PTC tube placement on Friday.
Wednesday, January 19, 2005 10:27 PM CST
Liver clinic was pretty good yesterday. I got some more info about the PTC tube placement. It will be on Feb. 4. It's possible that they will just adjust the tube she already has. Depends on what the radiologist sees. They are thinking that it's possible that the tube keeps bumping the bile duct and is keeping it from healing. If that's the case, then they will just pull this tube out a bit to keep it away from the bile duct. If it doesn't look like that's what happening, then they will place the PTC tube. She'll be in the hospital for observation. It's possible that she would end up in the PICU for a short time for observation. Continue to pray about this.
Labs were PERFECT again yesterday! Her tacro level was way too low, so we doubled the dose back up to 1 mg twice each day. Prednisone will be stopped in Feb. Right now we're only on 1 mg once every other day. Oh, she lost more weight. PLEASE say some extra prayers about that. I'm getting real nervous about this problem. She should be gaining weight real well right now, not losing. She can't afford to lose much more.
Cast should come off on Friday. Looking forward to that....
Thanks Helen for the new banner. It's perfect! And thank you again to our donor family!
Will update again when I have some more news!
Saturday, January 15, 2005 8:43 PM CST
I haven't had a chance to update this week. The plan is to go in for the PTC on Feb. 4. They will inject dye into the JP tube to see where the leak is. If it's indicated that the PTC is needed, they will place it then. She'll be admitted afterward for observation. This link explains what a PTC is: http://patienteducation.upmc.com/Pdf/CholangBiliDrain.pdf
Labs this week were WONDERFUL! All normal! They were up last week, so of course I was a bit nervous.
Pins came out of the arm yesterday. Screamed her head off when they cut the old cast off and didn't even flinch when they pulled the pins! They put a new cast on and hopefully it will come off for good next Friday.
Oh, and she's eating a bit better this week. Thank God! We go back to clinic on Tuesday, so hopefully her weight has made some improvements!
Shannon and Frank
Tuesday, January 11, 2005 8:20 AM CST
Good news and not so good news...
Yesterday was a better day for eating. Thanks for your prayers! She took in about 20 oz of pediasure. That's much more than she had been taking in for quite some time. Hopefully it keeps increasing and she'll get back to normal quick.
Still waiting on yesterday's lab results. They must be ok or I would've heard by now.
Talked to our transplant nurse yesterday. Looks like Marisa will be undergoing a procedure to place a PCT tube for her bile leak. If you'd like to read about it, here's a link:
http://patienteducation.upmc.com/Pdf/CholangBiliDrain.pdf
Not sure of the details yet, and not sure if they have decided for sure or not. Haven't talked to the doctor yet. If this doesn't work, then she will definitely need surgery.
Thanks for your constant support and prayers.
Shannon
Sunday, January 9, 2005 3:22 PM CST
Sorry for the late update.
It hasn't been the best week.
Clinic on Tuesday wan't great. Her labs were elevated, bile leak is going very strong, and she lost weight. Now, the scale showed a weight loss WITH THE CAST ON, so I'm real worried about how much she actually lost. She will have labs drawn again tomorrow, hopefully they will be better. She has a little bit of a cough and runny nose, so my bet is that they are still elevated. As for the weight...please pray that this changes quick. I'm real nervous that they will have to put a feeding tube in. She just has no appetite. She cannot be losing all kinds of weight right now. It's pretty discouraging.
As for her arm, that looks good. Hopefully the pins will come out this Friday and she'll only be in a cast for one week after that. We'll see what happens on Friday.
Hope you all have a good week. I'll update again when I have any new information.
Shannon
Saturday, January 1, 2005 9:47 PM CST
Happy New Year!
On Thursday, Marisa had her appointment with the orthopedic surgeon. The x-ray showed that her bones stayed in place very well with the pins, so they converted the splint into a purple cast. She cannot fit her arm into any of her clothes, so dressing her is a challenge. She returns to orthopedics on Friday. Hopefully after that we'll go back two weeks later and then be done. We'll see though....
This will be a busy week for us. On Monday she goes for an abdominal ultrasound, Tuesday is Liver Clinic, and Friday is Orthopedic Clinic. I'm glad she doesn't start back to Speech until the next week. That would mean that I'd have to drive out there 4 days! The drive to Ann Arbor is about 45 minutes, so I'll spend much of this week on the road. Hopefully all of the appointments will go well. I'm mostly concerned about the ultrasound. It should show how the bile leak is doing. Hopefully there is very little fluid in the abdomen and we won't have to schedule surgery. I think she's been through enough for a while! If she needs surgery, then we'll deal with it. Say an extra prayer please.... I'll get the results at Liver Clinic on Tuesday.
Her prograf level was high last week, so we lowered her dose to 0.5mg twice each day. Hopefully the level is good on Tuesday.
Hope everyone had a safe & happy new year celebration. We were all healthy (except Camille who stayed home with Grammy who was also under the weather) so were able to go to Church. It was a blessing to bring in the new year in the house of God. We are anticipating a very blessed 2005 and wish all of you the same.
Much love to everyone,
Shannon
Tuesday, December 28, 2004 8:05 PM CST
Just had to share today's labs. The first number is last week's and the last number is today's. They look so good. They bumped up some last week, so I was a little nervous about the draw today. Her Hbg & Hct are a little low though. We may have to start iron again. We'll see how they are next week. Don't know what her Tacro level is yet. It's been 8.8 for a few weeks, so I'm guessing that was stable.
Mg (1.2) 1.5 glad to see this up. It's been 1.2 for WEEKS!
Tbili (0.2) 0.4
Alk Phos (151) 126
AST (66) 29
ALT (103) 14
WBC (9.8) 3.8 pretty low...hmmm
Hgb (11.1) 8.9 ....usually in the 10-11 range
Hct (33.0) 27.5 ....usually in the 30-33 range
Plat (276) 188
Still has her bile leak, however the output has decreased a great deal. She is scheduled for an ultrasound on Monday, so hopefully it will show that the leak has healed itself.
We go to orthopedics on Thursday. Will update then about what they say and do.
She is doing better with the pain. It is still bothering her a lot, but she seems to be handling it better.
Hope everyone had a Merry Christmas.
Shannon
Friday, December 24, 2004 8:56 AM CST
For those who don't know, Marisa fell down the stairs on Wednesday and broke her arm. I took her to the ER and they admitted her while we waited for surgery.
We got home last night. She is in A LOT of pain. Tylenol with cod. is the drug of choice right now. She's barely making it the 4 hours between doses though. I'm hoping once the swelling goes down some that the pain will lessen and we won't need to go to a stronger drug. She is being very stubborn! Refuses to let me help her hold her bottle (even though she is obviously struggling to hold is with just one hand...she broke her right arm and naturally she's right handed. She's trying to figure out how the left arm works!), won't let me help her stand up, etc. Although it's a little annoying to watch her struggle so much and not be able to help her, I LOVE to see the fight in her. My little girl just amazes me every day with how strong she is. I have no doubt that she will go very far in this life. Look out to anyone who gets in her way! :-)
The break was right above the right elbow. (I'm told it's the most common break for kids up to age 7. The GI on service also told me that his 3 year old did the exact same break 3 months ago. She's doing great now.) Marisa's was actually crushed in one place and then twisted out of position. They put in two pins. The surgeon was very happy with the way she got it to align up. Right now she is in a splint...but basically it's a cast. I don't feel a soft spot under the wrap, so I'm guessing that it is basically just a removable cast. It goes from her finger tips to her shoulder. She has to return to ortho next Thursday at 8:00 am (There goes my week off from having to go out to the hospital! I should've known better than to get excited about that!). The plan for now is to return next week, put a real cast on, and then two weeks later take off the cast & have the pins removed. Hopefully that will be the end of it and she'll be fine. I know better than to expect things to go that smoothly, so we'll see what happens. The doc did say that her bones did not look as dense as they should. They told me that when she broke her wrist last year too. I'm hoping that once she gets off the prednisone (we're down to 1mg/day) that the bone density will improve. Now that she has a liver that will allow her to absorb her vitamins! :-)
So, we're in for a crabby and sore Christmas, however we're very thankful that it wasn't worse. We only spent 24 hours locked up in the hospital. That's a record for us. It was actually nice to be inside and out of the "blizzard" that was happening. By the time we were released the roads were clear. It was also a blessing to be there for "Normal Kid" things instead of liver problems. In fact, they didn't even do a liver panel on her! That's a first! (Of course one was done just two days prior to the accident at clinic.)
Thank you all for your prayers. May you have a wonderful Christmas.
Love,
Shannon
Tuesday, December 21, 2004 6:20 PM CST
Clinic was pretty good today. Here are her labs:
TBIL 0.2 Alk Phos 141 AST 50 ALT 73
All but the bili are up a tiny bit from last week, but overall, they are good enough for me!
She lost a little weight, so that's not great. I'm guessing that either last week or this week wasn't accurate due to food in belly or empty/full bladder. She's eating well, so we'll worry about it if it's down next time.
We have an ultrasound scheduled for Jan 3 to check on the bile leak. Hopefully it gets better by then. This is crazy.
We get to take next week off! That was great news. I didn't expect them to take her down to every two weeks yet. We also cut the prednisone down to 1 mg/day!
Hope you are all having a wonderful week. Have a very blessed Christmas.
Love,
Shannon
Tuesday, December 14, 2004 9:25 PM CST
Clinic went GREAT today. Her labs were WONDERFUL! Here's how they've looked over the past month:
11/24: AST 25 ALT 96 ALK 144 TBIL 0.2
11/30: AST 53 ALT 67 ALK 134 TBIL 0.3
12/02: AST 68 ALT 110 ALK 153 TBIL <0.1
12/07: AST 79 ALT 145 ALK 135 TBIL 0.2
Today: AST 29 ALT 50 ALK 127 TBIL 0.2
For those who don't understand the numbers, today's labs were great. We couldn't ask for better numbers. They were all in the normal range except for the ALT. And it was only 5 points high. Excellent!
We're so thankful that they took a big drop. Answered prayers...Thank you, Lord.
She also gained 230 grams this week! I'm so thrilled with that. She was lucky to gain that in ONE MONTH before!
We're coming down on the prednisone to 2mg once/day (from 4mg). I'm hoping for better sleep...but the same appetite!
The only thing that was a concern is her bile leak. Looks like surgery is in the future. Doesn't look like they will be able to do it EGD style or with a needle through the abdominal wall. It will have to be open surgery. They are going to wait until the first of the year to decide when to do it. We have a couple of weeks to pray this problem away too! We're hoping it heals on its own and surgery will be avoided.
We also got to stop her first med today! No more acyclovir! The other change was that her blood pressure med was switched from 4 times each day to 3 times. That was great news! I no longer have to get up at 5am to give it to her!
Marisa is really thriving thanks to her new, healthy liver. Once again, we are so thankful to her donor family. They must be having a difficult time this holiday season, so please continue to remember them in prayer.
Have a great week everyone! Thanks again for your prayers and support. We love you all.
Shannon
Wednesday, December 8, 2004 10:08 PM CST
Marisa's lab results from yesterday are not encouraging. If her numbers are still elevated after next week's test, they may schedule a liver biopsy. If they do and they decide to treat for rejection, this may include a prolonged hospital stay. Please pray that her high numbers are a result of her being sick like the rest of us and not an indication of rejection. The last thing we want is to have Marisa hospitalized during Christmas. Thanks for your continued prayers. They certainly do make a difference.
Frank
Thursday, December 2, 2004 8:08 PM CST
Marisa continues to do well. Her lab work indicates a liver that is functioning properly. Her bile leak is diminishing and they will continue to monitor the amount and color.
Our thanks to those that have sent cards, emails, etc. to show your support as we enter the post-transplant phase. A special thanks to the staff at Bates who have provided dinners for us throughout the week until school breaks for the holidays.
Take care.
Frank
Monday, November 22, 2004 11:19 PM CST
MARISA IS HOME!!
Marisa was discharged this afternoon. Her labs continue to improve and all indications show that the rejection episode is over. We return to the hospital for labs on Wednesday and then go to liver clinic next Tuesday. She will go to clinic every week for about 4 weeks, then we'll drop down to every other week, then every four weeks, etc. She will have weekly labs for quite some time. She has been off of all pain medications for over a week. She continues to have her bile leak. We came home with the JP drain. I have to empty it 3 times each day and measure the output. They will make a decision in the near future about whether or not she needs further surgery to correct the bile leak. Our prayer is that the leak will heal on its own and no other intervention will be needed.
She is home on 11 oral medications totaling 21 doses each day. The first one is at 5:00am and the last ones are at 11:00 pm. Hopefully as we get her meds regulated those times will change! :-)
We wanted to share the good news of her discharge and thank you once again for your prayers, support, and love. So many of you have done so much for us. We truly are grateful to each of you.
She was so happy to be home. She spent the entire afternoon chasing the dog and emptying the pantry...life is back to normal for her. She slid right back into her old routine! We thank God for these small things that put smiles on our faces. It is a blessing to see her acting like a perfectly normal toddler just 17 days post-transplant.
As always, please remember to pray for her donor family. They will always be close to our hearts.
Check the photo album for some new pictures!
Much love to all,
Frank & Shannon
Monday, November 22, 2004 9:53 AM CST
The doctor who makes the decision regarding Marisa's release from the hospital is currently on an organ run. We hope to hear something sometime this afternoon. Will let you know when we find out.
Frank
Saturday, November 20, 2004 5:39 PM CST
Marisa's numbers look better again today. Things are looking good right now for her to be released on Monday or Tuesday. Of course, that's subject to change, but we're hoping to be home to enjoy Thanksgiving together as a family.
Thanks so much for everything you have all done for us.
Shannon
Thursday, November 18, 2004 9:14 AM CST
Marisa's numbers continue to trend downward. The doctor is pleased with her progress. This morning was her last dose of the 3-day high dosage of the steroids. We have been fortunate that the increase in steroids hasn't affected her mood whatsoever. Hoping to come home early next week as long as her labs continue to look good.
Thanks for all your prayers and concerns. They certainly make a difference.
Will update again when we get a chance.
Frank and Shannon
Tuesday, November 16, 2004 3:47 PM CST
It does appear to be rejection. They have adjusted her meds accordingly and we should see some positive changes soon. If not, they mentioned looking for a possible problem with blood flow within the liver. They will monitor for the next three days. Will post again when we learn more or anything different. Take care.
Frank
Monday, November 15, 2004 9:56 AM CST
Marisa is scheduled for a liver biopsy this morning. Her liver function numbers have increased a great deal since Saturday. They are not sure if this is because of the bile leak or a sign of possible rejection. Please continue to pray for her. Will update when we hear the results of the biopsy, which won't be until late tonight or early tomorrow morning.
Saturday, November 13, 2004 4:51 PM CST
Marisa continues to do quite well. We are hitting a small bump in the road though. She has a bile leak. They are assuming it's small because she's still doing very well. There is a good chance that it will heal on it's own, however, there is also a chance that it will need to be surgically repaired. We're not sure when they would do the surgery. They may run another test first. My guess is that they will do the HIDA scan on Monday to see where the bile is coming from.
Everyone is very pleased with her progress. In her surgeon's words, "She looks like a million bucks!" She was up walking around a lot today. Her muscles are getting stronger. She's still watching DORA constantly, but she is enjoying it, so that's ok.
The little boy I told you about had his transplant and is doing well. Continue to pray for his family and him.
Thanks again for everything. Say a prayer that Marisa's bile issue is resolved without the need for further surgery. We'll update again when we can.
Love,
Shannon
Thursday, November 11, 2004 10:09 PM CST
Marisa is out of the PICU. She is sharing a room with a young girl who had a liver transplant the same day as her.
Marisa is not hooked up to anything! She is eating and drinking and laughing and playing. She stood up in her bed/crib and we let her get out and try to walk around. She is a little sore and didn't walk too far.
The doctors continue to be pleased with her progress. One doctor said she could go home tomorrow, but we think it will probably be Monday.
Thanks again for all your support.
Frank
Thursday, November 11, 2004 7:12 AM CST
Marisa continues to do well. We are still just waiting for a room on the floor. Her labs look great. She's taking her feeds and meds by mouth very well.
I told you about Seth last week. He's the 9 year old boy who went into liver failure. He is getting his liver today. The surgery is scheduled for noon. Please pray for him, his family and his donor's family. The parents seem to be doing quite well.
I'll let you know when we get out on the floor. I'm guessing that she will trade with Seth and take his room on the floor when he goes to surgery.
Wednesday, November 10, 2004 3:05 PM CST
We're still in the ICU. They don't have any beds available on the floor, or we'd be out there. Blood pressure meds are doing the trick, so that's good news. She is eating very well, so they stopped her tube feeds for now. If she slows down too much, they will resume the tube feeding.
That's it for now. Thanks for everything!
Tuesday, November 9, 2004 10:47 PM CST
Not much change since this morning. She continues to do quite well. Looks like the blood pressure meds have worked. We haven't had to go back to the drip yet. We will most likely be going out on the floor tomorrow. She took 2 oz of Pediasure by mouth twice today along with her constant tube feeds. She has tolerated it all very well. I was able to hold her a lot today. That was nice for both of us. I'm hoping she sleeps well tonight so I can get a good night of sleep before we go out on the floor.
Papa brought her a portable DVD player that we could strap to her crib. So she has been thrilled to lay in bed and watch DORA all day. By now, I am quite sick of DORA and can't stop myself from singing those silly songs in my head constantly! :-) It is nice to see her content though!
I think that's about it. Thank you again for your prayers and love. They have made a tremendous difference. I can't even tell you how easy this has been. Your prayers are certainly carrying me. I thank God for each of you.
Shannon
Tuesday, November 9, 2004 9:41 AM CST
Marisa continues to do very well. We are trying to adjust some blood pressure meds and then she will come out of the PICU. One of the meds she is on now is an IV drip and she can't go to the floor with it. Aside from that, she is doing quite well. She seems very comfortable as far as the pain management goes. Looks like she will come off of the oxygen this morning. She's been on a very low setting for several hours. She did move her bowels for the first time this morning and they are going to let her eat by mouth today. Things are going as well as we can possibly expect.
Thank you again for your prayers....they are certainly being answered.
Love,
Shannon
Monday, November 8, 2004 4:13 PM CST
Marisa had a good day today. Last night was hard. Her pain was pretty strong. We were able to increase her morphine and get it regulated bu 2:30 this morning. SHe slept well the rest of the night. She started some tube feeding today. Looks like she is tolerating it well. She has spent the entire day napping and watching Dora. She will probably spend the night in the PICU again and be transferred to the floor tomorrow. We are having a hard time getting computer access, so we'll update when we have a chance.
Visitors are welcome if you're not sick! Marisa CANNOT be exposed to ANY germs. Thank you for being considerate of her condition.
Love,
Shannon
Sunday, November 7, 2004 9:24 PM CST
Marisa is still in the PICU. Nothing has changed, they just want to keep her here until tomorrow. She is alert and enjoying watching the Dora video we brought from home. Will update tomorrow when we get a chance.
Frank and Shannon
Sunday, November 7, 2004 6:53 AM CST
Marisa is doing wonderful! Praise God. Her pain management is the biggest issue right now. They changed her morphine settings and she seems much more comfortable. This morning she will have her foley catheter removed and all ofher IV lines will be taken out except her broviac. Her only "hardware" will be her broviac, JP drain, and NG tube. Things are moving along very well. Labs look good and she is doing as well as they can possibly expect. Looks like she will be moving out of the ICU sometime today.
Thank you all so much for your tremendous support and prayers. You have made this situation so much less stressful than I ever imagined.
URGENT PRAYER REQUEST: We just met another family who has a nine year old. Within the past week he went from being a healthy little boy to being in liver failure. They don't know the cause. He is listed for transplant and they are estimating a wait time of 3 days. He is in very serious condition. Please pray for Seth and his family. They have been thrown into very unfamiliar territory and are frightened and confused. They need the touch of the Lord's hands in their lives. I know you will hold them up in prayer.
Love to all...
Shannon
Saturday, November 6, 2004 10:47 PM CST
Marisa continues to do well. She came off the breathing vent. within 12 hours after surgery. She was in a little pain while they were bathing and weighing her tonight and is a little congested, but other than that, all is well. Will update again sometime tomorrow. Take care.
Frank and Shannon
Saturday, November 6, 2004 1:53 AM CST
Marisa came out of surgery at 11:30 p.m. The doctor said that it went as well as he could have expected. She is currently in the PICU. She looks great. We will update when we get a chance. Take care.
Frank and Shannon
Friday, November 5, 2004 4:27 PM CST
She went in to surgery at 5:00 p.m. est. They informed us it was the "perfect" liver and that the procedure would take approximately 7-9 hours. Marisa was very calm throughout the day. We are very thankful for all your support and will continue to update when we can.
Frank and Shannon
Monday, October 18, 2004 5:17 PM CDT
Well, it was a long 6 weeks, but Marisa is finally done with her IV antibiotics. I now just need to flush the lines once a day. She is doing fairly well. Her feeding has taken a turn for the worse though. She was doing much better, but she has taken a few steps backward. Hopefully it will pick up again soon.
Marisa is walking all over the house. She gets so upset when a gate is up and she's trapped. One of her favorite things to do is look at animals. Frank finds pictures of animals on the internet and she sits here with him just laughing her head off. It's so funny.
Thank you for your prayers and support. I'll try to do a better job of keeping this site updated. Now that I'm done with the IV medications, I have 6 extra hours in my day! :-) Have a great week.
Shannon
Tuesday, October 5, 2004 10:42 PM CDT
I am so sorry that it has been so long since we've updated Marisa's site. Things have been very busy with the IV antibiotics. She is doing well. One more week to go. She is doing much better with her feeding. She also started walking again this weekend. Now there's no stopping her. She's all over the place! :-)
This past weekend we participated in the Michigan Liver Walk. Our team raised about $1700 for the American Liver Foundation! Thanks to everyone who participated and donated.
Last week we had another fundraiser for Marisa. The very generous people of St. George Greek Orthodox Church and the staff of the Grecian Center heard about Marisa and called us to ask if they could do a fundraiser for us. Of course, we said yes. They put on a wonderful pasta dinner and raffle. Everything was so nice. They raised $10,000. They paid for all expenses so that all the money brought in would go to Marisa. We were so touched by their kindness. It's nice to remember that there are truly wonderful and giving people in this world.
Lastly, I want you to please pray for a family we know on CLASS. Little Ava was just 8 months old and also had Biliary Atresia. Today she lost her fight with the disease and became one of God's angels. Please pray for her parents, Jeff & Anna, and her big brother, Nicholas. My heart is broken for them. Ava suffered a lot at the end of her short life. I hurt for them, but it's also very real for me that Marisa is also fighting this horrible disease. Please continue to pray for her gift of life. I hugged my children a little tighter tonight and my prayers are with Ava's family. They have much to endure in the coming days, weeks, and years without Ava in their lives.
Thursday, September 9, 2004 6:24 PM CDT
Thankfully, I was able to bring Marisa home this morning. She is still running low-grade fevers and will be on two IV antibiotics for 6 weeks at home. Her labs are slowly improving, so that is a good sign. Thank you for your prayers and support during these difficult two weeks. It was not an easy hospital stay this time, but thankfully it's behind us for now. We'll keep you posted on her progress.
Love,
Shannon
Tuesday, September 7, 2004 10:36 PM CDT
Marisa had the Broviac placed today. She is still running a low-grade fever, but seems to be a little less irritable. Hopefully we'll be home in a couple of days. Thanks for all your support.
Frank
Sunday, September 5, 2004 12:29 PM CDT
Sorry for the delay in updating. There is not a computer available at the hospital for me to use.
Marisa remains in the hospital. She spiked another fever this morning. If the fevers continue, they will have to do some more invasive studies to find out what the cause is.
They tried to place a PICC line on Wednesday. Unfortunately, they were unable to get it placed, so she ended up with a Mid-line. This line will not last very long because of the strong antibiotics she is on. She is currently scheduled for a broviac to be placed this Wednesday. She will have an ultrasound done on Tuesday to look at the vessels in her neck area. There is a concern that since she has already had at least 3 broviacs, so they could have trouble placing this line. The ultrasound will give them a better indication of what is going on. As of right now, she will remain in the hospital until at least Wednesday.
We continue to need your prayers and thank you so much for your support. It is looking like transplant is going to happen sooner than we anticipated, please continue to pray for the perfect liver for Marisa.
God bless you all,
Shannon
Wednesday, September 1, 2004 10:05 PM CDT
Marisa continues to run a fever and is quite irritable. She is also taking little interest in eating. They plan on attempting to place a picc line tomorrow morning. If they are unable to do so, they will have to put a central line in. Either way, she is going to be under anesthesia. Please pray that they are able to get the picc line in, as this is the more desirable of the two. Thanks again for all your support.
Frank
Monday, August 30, 2004 11:33 PM CDT
Marisa continues to run a fever of 103.5. Since this has been going on for a week, we need to take her to the hospital first thing in the morning(Tuesday). They will examine her and run labs to see what her liver function looks like. We appreciate your prayers on her behalf. If it is indeed cholangitis, she will need to have another central line surgically placed and will begin IV antibiotics. Last time the antibiotics lasted for 6 weeks. She is allergic to several drugs they like to use, so it makes it difficult to treat her. She will need to be on two different antibiotics every 8 hours. As you can imagine, this is extremely time consuming and very important that they are given exactly on time. The other concern is that since she is mobile now, it will be more difficult to administer the medication. Most importantly, please pray that the correct diagnosis is given and she can be on her way to recovery with as little discomfort as possible. Tomorrow will not be an easy day for her.
Thank you so much for your prayers. I will update her website if I'm able to at the hospital.
Love,
Shannon
Friday, August 27, 2004 2:22 PM CDT
Hello everyone.
We again need your prayers for Marisa. She has been running a high fever since Sunday. I just got a call from the transplant team that they need me to take her in for some blood work and a urine analysis. They are going to watch the blood cultures on an outpatient basis for now. If the fevers continue she will need to be admitted. Please say a prayer that the fevers are resolved quickly. If she does have cholangitis (her liver infection), then she will need another central line placed and will need to be on IV antibiotics for 4-6 weeks. We do not want her to have to go through this again. It has been 6 months since her last infection. This is the longest she has ever gone and we were hoping we had seen the last of it. Secondary to that, Camille and Jackson start school on Monday. We really don't want that to have to be disrupted for them. They have a very hard time when Marisa is in the hospital.
As for an update on how Marisa is doing, she had liver clinic this week. She had her best weight gain ever this month. They were thrilled with that. Her labs were not good though. They were better than last time, but they were still elevated. (Another reason for getting more labs today) Her PELD (pediatric end-stage liver disease) score increased from an 8 to a 12. The higher the score, the sicker you are, and the closer you are to getting an organ. She is second in line for a liver at our center. There is just one baby ahead of her, but he is much smaller, so if a larger organ came in they would most likely give it to Marisa instead of reducing the size for him.
Marisa is also WALKING! We are so happy to see her development picking up. She is also finally starting to eat some table foods here and there. She started speech therapy last week, so we're hoping that will help move things along.
Sorry for the length of this message. We truly appreciate your prayers and support.
Love,
Shannon
Thursday, August 19, 2004 1:14 PM CDT
MARISA IS WALKING!
She took off on Tuesday evening (also the day she turned 18 months old). Until then, she was just taking a couple of steps at a time. However, on Tuesday, she went all the way across the room. We thank God for this. It is so wonderful to see her moving in the right direction for a change. Thank you for your prayers and love.
Happy Birthday, Grammy! XOXO
Sunday, August 15, 2004 1:37 PM CDT
Well, we had a wonderful time up north. However...it was FREEZING and rained every day. The kids still had a great time though. We built 2 camp fires, roasted marshmallows, made smores, went fishing, hiked through Hartwick Pines (absolutely gorgeous if you've never been there), Frank took Camille & Jackson on their first canoe ride, and we also went to the beach in 40 degree weather. Camille & Jackson loved to explore in the woods behind the house. Thanks again Rick & Kaaboomy for sharing your home with us. It's beautiful.
Marisa is doing well this week. She has been a little fussy though. I'm hoping that it's just her teeth coming through. She is taking lots of steps. I really think she could be walking on her own. She just hasn't done it yet. Her balance is very good. She is also starting to eat some solids! She has her first speech therapy session this week (finally).
As always, thanks for visiting Marisa's site and especially for all of your thoughts, prayers, and support. They mean the world to us.
Tuesday, August 3, 2004 1:47 PM CDT
Wow...it's been a month since I last updated this site. Sorry about that. Marisa actually was sick for most of the month of July. She had a few viral infections. Thankfully it turned out not to be cholangitis and just normal kid stuff. Of course, the normal kid stuff always hits her harder than your average healthy child, so it took a while for her to fight off the bugs. She is doing pretty well right now. She's trying to walk finally. She will take 4 or 5 steps at a time when she wants to. She gets very excited and ends up falling down, but it's great to see her progressing. She's also starting to chew a little bit. This is a great step. She still is not able to do table foods, so hopefully this means we're on our way out of baby food jars! We are STILL waiting for the speech therapy to get started. I've called a few times and they keep saying that they are waiting for insurance approval. It's getting a little annoying though. Her evaluation was a month ago. We are going to call them again tomorrow and see what the hold up is. Of course, Frank is determined to teach her to say "George W."
She had liver clinic last week. They thought she was looking good. Her liver enzymes are elevated though. We are assuming that it's because of her being sick. Hopefully this month will find her healthy and when we return to clinic next month her labs will be better. She also didn't gain weight well this month. Again, we're hoping it's just because of her being sick.
Summer is quickly ending. I can hardly believe it. We're planning a trip up north this weekend. We are really ready for a nice break. It's been a long 18 months with all of Marisa's health issues. We're looking forward to relaxing and enjoying the kids.
Saturday, July 3, 2004 9:30 PM CDT
We took Marisa to the ER this afternoon. She was still running a fever of 102, so GI wanted her to come in.
Our visit to the ER went well. They ran labs and they looked good. Her bilirubin was up quite a bit (3.4--up from 1.1 two weeks ago) but her other liver enzymes were down from last time (they were pretty elevated before). They were comfortable enough to let us come home and assume it's a viral infection. It does not appear to be cholangitis. Thank you for your prayers and we thank God for answering them. We are hopeful that she will be much better within a couple of days so that we can still head up to Saginaw next weekend.
Happy Birthday Papa!
I hope everyone has an enjoyable 4th of July.
God bless you all,
Shannon
Tuesday, June 29, 2004 10:47 AM CDT
I took Marisa to the pediatrician this morning. He found that she has viral tonsillitis. She should be fine within a couple of days. We are so thankful for this diagnosis. Thank you for your prayers. God is good!
Monday, June 28, 2004 9:44 PM CDT
Hello. You haven't heard from us in a while. I'm sure you figured out that Marisa was doing well. She had a great liver clinic visit a couple of weeks ago. Her labs looked very good and her weight gain was also good for the month. We are very thankful for those things.
She spiked a high fever this evening though. It has been gradually building up over the past couple of days but went up to 102.5 this evening. Please pray that it turns out to be nothing. She has not had cholangitis (her liver infection)since January and she had her broviac pulled a few weeks ago. We hate the thought of having another line put in. Then she would be back to no baths, no pool, etc. It's been so nice to have her be a "normal baby" these past few weeks. She's been so happy. Of course, the bigger concern is that if it is cholangitis, then she is getting further liver damage. We need to take her to the pediatrician in the morning to rule out an ear infection, etc. If he sees nothing and the fever continues, she may need to be admitted to the hospital and started on IV antibiotics.
She also starts speech therapy this week. They are going to try to help her eat. She is 16 months old and still does not eat any solid food. Please pray that the therapy is successful also.
Thank you all for your support and prayers.
Frank & Shannon Hamet
Saturday, May 29, 2004 10:34 PM CDT
Marisa had her broviac pulled this week. It was wonderful to say good-bye to that! Tonight she was able to take her first real bath in four months! She had so much fun. She was laughing so hard. It's wonderful to see her so happy. We're just really hoping that we're able to keep the line out and she won't have any more cholagitis episodes. If she does, they'll have to put another one in.
She is having a lot of fun being mobile! Last night she figured out how to hold onto one of her push toys and walk with it. She was grinning ear to ear and laughing with every step she took. She was so proud of herself. I don't think it will be long now before she gets brave enough to take her first real steps.
This is a special weekend for our family. Lots of memories. Frank and I both had very serious car accidents 15 years ago on the day before Memorial Day. That was long before we knew eachother, but the Lord had a plan. He spared both of our lives (along with my friend Jennifer who was with me...happy birthay this week Jen!). Then last year on the day after Memorial Day, Marisa's 28 day stay in the NICU ended and we were finally able to bring her home. At that point, we still had no clue about what life with biliary atresia would be like. A year ago, I would've never thought that terms like bilirubin, ALT, AST, etc. would be part of my daily vocabulary. I certainly didn't know how excited I would get to meet someone else who understood what those lab values meant. Of course, it's sad at the same time because that means they are also dealing with liver disease.
We thank God for the miraculous way he works in all of our lives. Have a great Memorial Day!
Love Always,
Shannon
Sunday, May 23, 2004 1:18 PM CDT
We want to say THANK YOU to all of those who took part in Marisa's fundraiser! A huge thank you to Arnaldo's and their staff for the fantastic job they did of handling the "mob" of people! We expected about 300-400 people. To everyone's amazement, we had 800-1000 people show up! We apologize to those of you who didn't eat because you didn't want to wait in the long line. We seriously did not expect to have such a large crowd.
The night was a lot of fun for us. It was wonderful to see so many people come out and support Marisa and our family. As of yesterday, we have a total of $32,500 in Marisa's Medical Fund! What a blessing that is. The generosity of everyone is very overwhelming. Thank you for caring so much and giving so freely.
Thank you to those who worked so hard to make the night a huge success. Kristen & Lynette....thanks isn't enough for the month of very hard work and planning you did. Scott....thanks for being our auctioneer. That was lot of fun! I'm not going to keep listing names because I'm bound to forget someone, but thank you to everyone who sold tickets, collected auction donations, purchased items in the auction, gave a donation, said a prayer for Marisa, etc. Everyone helped to make the evening a success. Thank you so much.....
Saturday, May 15, 2004 4:25 PM CDT
It's been another pretty good week for Marisa. She had Liver Clinic on Wed. He was very pleased with her for the most part. The concern continues to be her weight. She only gained about 130 grams in the whole month. Not good at all. This month we are going to focus on her nutrition. I need to do a 2-day calorie count and let the dietician know what it is. From there we will see where we can make some adjustments. She also is being referred to speech therapy. They are the ones who help with teaching a child how to chew and swallow. She still does not eat any table foods. We will attempt to get to the bottom of that issue with the therapy. Her broviac should be getting pulled in a couple of weeks also. It was a good visit this time. Her labs have been pretty good. Her PELD is now at -4, so that means she is doing well. She is no longer first on the transplant list, but this is a comfortable place to be. It's nice to know that she's not as sick as she was and that her liver is functioning better.
Friday, May 7, 2004 5:11 PM CDT
Marisa has had a pretty good week. It didn't start out too good though. On Sunday she started out with just a little bit of a runny nose. By afternoon she was having a horrible time breathing. She was wheezing constantly. I gave her breathing treatments every two hours that night and took her to the pediatrician the next morning. He put her on an oral steroid and had me continue the breathing treatments. It was uphill from there. A few days of a bad cold, but thankfully she started to improve rather quickly.
We've had a busy week trying to get ready for the fundraiser. Everyone is being so kind and generous. Thank you!!
I'm looking forward to Mother's Day this year. I have a lot of horrible memories from last year. Mother's Day was the night Marisa went critical last year. She dropped rock bottom was put into the most intensive part of the NICU. A baby actually died that day and made room for her in that nursery. That was the day we met our primary nurses Jackie and Dawn. They worked so hard that day to save Marisa's life. Thank you to both of them from the bottom of my heart. Take a moment to pray for Betty and her husband. They are the ones who lost their baby girl that day. They are a very young couple and it was their first child. I think of them often although I have never seen them again. I'm sure Mother's Day will be very difficult for them this year. I'm hoping we have an unevenful weekend and we're able to spend Mother's Day together as a family. The only thing that would make it better would be to have Marisa get the call that her Gift of Life is waiting for her.
I hope you all have a wonderful weekend and Happy Mother's Day to all of the moms.
Love,
Shannon
Wednesday, April 28, 2004 11:18 PM CDT
Marisa is doing much better. Thank you for your prayers. Looks like the ear infection is gone. I haven't taken her back for a re-check, but she is acting like herself again. Very happy and playful. The fever has been gone for a week. Her only complaints right now are swollen gums from the six teeth she is trying to cut and a horrible diaper rash that keeps coming back. It will get better for a day or so and then it comes back. She was reall fussy this evening because of the rash.
We are trying to wean her off of her reflux meds. She hasn't had a vomiting episode in well over a month. I don't think she needs them right now, so we've gotten permission from the doc to slowly take her off and see how she does. This week I stopped the four daily doses of Reglan. So far so good. Next week we'll go down to just once each day with the Prilosec. If that goes well, then the following week we'll stop the Prilosec.
Looks like everything for the fundraiser is falling into place. Today was a little stressful. We have been running into red tape about getting a bank account opened. Our bank was giving us a real hard time about getting one set up. Our CPA was telling us one thing and the bank wasn't agreeing. The worst part was that they wouldn't answer any questions I had. Finally, I gave up and put it in the Lord's hands. I said a prayer and called another bank. Immediately she said she could open the account. Thank God for answering prayers.
We've had a lot of questions about who to make checks out to for the dinner. Since we now have an account....I finally have an answer. They can just be made out to Marisa Hamet. If you need an address, send us an email and I'll send you our address.
Thank you all for your support and interest in the dinner. The response we are getting is incredible. Our auction items are starting to come in. We have a lot of great things from some very generous people and businesses. Thanks to all of them for helping make this fundraiser a success.
It's past bedtime. Hope everyone is having a great week.
Love,
Shannon
Monday, April 19, 2004 7:39 PM CDT
Marisa had a trip to the ER on Friday evening with another fever. We were able to come home with the assumption that she had a viral infection. The fever came and went all weekend. Today we went to the pediatrician. She has an ear infection. It's nice to have a source for the fever. She is on an antibiotic and hopefully will be feeling much better real soon. Thank you for your prayers!
Tuesday, April 13, 2004 8:19 PM CDT
We had a very nice Easter. It was nice to be able to spend it together as a family. Marisa has been feeling very well lately. She gets more active each day.
She has liver clinic in the morning. We are hoping for better lab results. They have been on the high side for quite some time. We are also hoping that her weight is ok. She lost a lot of weight when she had rotavirus. Hopefully she has put it back on by now. She hasn't been weighed in a few weeks, so I have no idea how she's doing. I really struggle to get weight on her. It's discouraging that she lost 2 pounds. That was about 4 months worth of hard work! :-) She has been eating very well the past couple of days and her reflux has been much better also, so I'm counting on some good news!
For those who keep asking, Marek has made his way home to Michigan! He is out of the hospital and out of Chicago. His mom says he is doing very well. He's a different baby. Thank you for praying for him.
We ran into Marisa's nurse from Children's Hospital of Michigan this morning. Jackie was one of two nurses that fought very hard to save Marisa's life when she got so sick with her infection after her Kasai. We were very blessed to have her as our nurse. It was nice to see her. It's been almost a year since then! It's hard to believe.
We'll update again when we have news. Thank you for your continued support of our family and your prayers for Marisa.
Love to everyone,
Shannon
Sunday, April 4, 2004 0:24 AM CST
Marisa is back to her normal self. A little tired, but laughing and playing. Take care.
Monday, March 29, 2004 7:40 PM CST
Marisa came home this evening. She is back to her normal self. Having a little trouble feeding her, but other than that, all is well. Thanks.
Frank
Sunday, March 28, 2004 1:46 PM CST
Marisa is still in the hospital. She has the rotovirus which is causing a lot of diarrhea. She is doing much better today. However, they won't let us go home until the diarrhea is under control. Thanks for all the prayers. Take care.
Frank
Thursday, March 25, 2004 4:29 PM CST
Marisa went to the orthopaedic doctor yesterday and got her cast off. He said she had very good new bone growth and would be fine without the cast. It will take 4-6 months for the bone growth to be complete, but she is doing well. Hopefully it was just a freak accident and she doesn't have brittle bones. Only time will tell. There isn't a good way to measure bone density in children because they are growing. For now they will just monitor her vitamin levels and those numbers look good for now.
Also, this morning she had her endoscopy to check the varices in her esophagus. THEY ARE GONE! Praise God! There was just one very small one at the bottom of the esophagus. Too small to even call it grade one. In November she had several grade three varices. We are so thankful for this news. We know that God heard the many prayers offered for her and healed her of that problem. Now we can relax and not be concerned about another upper GI bleed.
Thank you for always remembering her in your prayers. We are happy to say that she has been doing very well for the past few months. It makes waiting for her new liver much easier when we see her doing so well.
Love,
Frank & Shannon
Saturday, March 20, 2004 4:36 PM CST
Marisa was discharged yesterday afternoon. The fever was unexplained but it went away as quickly as it appeared. We thank God for answering prayers. She does not have cholangitis.
Marisa is scheduled for an endoscopy this coming Thursday to check the status of the varices in her esophagus. We appreciate you prayers that the doctors will find everything to be in good shape. She has not had a scope since she had her big bleed in November. At that time there were several other varices.
Tuesday, March 9, 2004 5:10 PM CST
Marisa went to the orthopaedic doc today. They didn't put her in a full cast. They made a splint out of cast material and wrapped an ACE bandage around the arm and splint. The splint goes from her wrist to her arm pit. We go back in 2 weeks and it should hopefully be healed by then. He said if she won't leave the splint alone and keep it wrapped they would put a real cast on. We're hoping this works. It's a little more manageable. At least her arm can breathe a little. She has already taken it off once though, so we'll see....
Monday, March 8, 2004 4:00 PM CST
Marisa broke her arm this weekend. We're not exactly sure how it happened. She did a gentle roll to her side from a sitting position and screamed when it happened, so we're assuming that's when she broke it. We went to the ER last night and they sent us home saying that it was nursemaid's elbow. This morning she still wasn't herself, so I took her to the pediatrician. He saw right away that there was a problem and sent us for x-rays. There was a fracture through one of the bones about an inch above her wrist. Tomorrow morning she goes to the orthopaedic specialist. I assume they will put a cast on her. Thankfully the bone is still in alignment.
There is concern that she could have some bone problems since she broke it so easily. We will probably have to go for bone density studies. She also may have to be put on hold for transplant until the fracture heals. I'm waiting to hear back from the transplant nurse.
Please pray that she heals quickly and that there are no more major problems for her to conquer.
Our little friend Marek is still in great need of your prayers. He is still having a lot of trouble with his lungs. He has been on the ventilator for 3 weeks. Pray that they can find the cause of his problems and find a solution. His new liver is doing great.
Love,
Shannon
Wednesday, March 3, 2004 5:35 PM CST
Liver Clinic this morning was uneventful. It's always nice when visits are like that. She gained 8 ounces during these past 2 weeks. Up to 17 lb 4 oz. I'm very happy with that weight gain considering she is vomiting at least once each day. He wants to see her again in two weeks.
Her PELD is 11. Not a high score, but she happens to be the only small child right now. He does not want to appeal her score right now because she is stable. This actually is good because it means that they don't feel like they have to accept the first organ that comes for her. If they don't feel that it is "perfect" for her, she is stable enough to pass it up. If she gets cholangitis again we will have to re-think either putting in a letter of exception or placing the bile drain. We're hopeful that we won't have to worry about either. If she keeps gaining weight at this rate and growing well, we're happy.
The Upper GI was normal. They did see one episode of reflux, but that was no surprise since she is vomiting so much. No obstruction was seen. They are just assuming that since her liver and spleen are enlarged, they are crowding out her belly and causing the reflux.
Continue to pray for Marek. He is having some lung issues right now. They don't know why he is so dependent on the vent. If he doesn't get better soon, they will have to do some more procedures. He really needs your prayers....
Saturday, February 28, 2004 1:27 PM CST
We have an Upper GI scheduled for Wednesday morning. Marisa has been having projectile vomiting daily for a few weeks. They want to make sure she doesn't have an obstruction that could be causing the problem. Late this week added a drug, Reglan, for the reflux. It actually seems to be helping. She has only thrown up twice since we started it. She also takes Prilosec for the reflux. That didn't help by itself though so we added the other one. We have liver clinic right after the Upper GI appointment.
She started crawling today! Just a little bit at a time and then she flops down. I don't think she really knows that she's doing it yet. She's figuring it out though. It's funny. It's so nice to see her hitting milestones.
We're just waiting for the call that they have a liver for her! I need to get my hospital bags packed this weekend and I'll feel a lot more prepared.
Marek is doing much better. Still showing a little rejection, but is improving. Thank you so much for all of your prayers.
Saturday, February 28, 2004 1:27 PM CST
We have an Upper GI scheduled for Wednesday morning. Marisa has been having projectile vomiting daily for a few weeks. They want to make sure she doesn't have an obstruction that could be causing the problem. Late this week added a drug, Reglan, for the reflux. It actually seems to be helping. She has only thrown up twice since we started it. She also takes Prilosec for the reflux. That didn't help by itself though so we added the other one. We have liver clinic right after the Upper GI appointment.
She started crawling today! Just a little bit at a time and then she flops down. I don't think she really knows that she's doing it yet. She's figuring it out though. It's funny. It's so nice to see her hitting milestones.
We're just waiting for the call that they have a liver for her! I need to get my hospital bags packed this weekend and I'll feel a lot more prepared.
Thank you so much for all of your prayers.
Tuesday, February 24, 2004 10:34 AM CST
We got word this morning that Marisa is back on the transplant list as of today. She is the only small child in her blood group, so we could get the call at any time. Please remember us in prayer. It is stressful knowing that the phone can ring at any moment. We were told to "be ready."
Continue to remember our friend Marek. He is still fighting his infection. They expect him to be in the PICU for at least another week. His family can use your prayers.
Tuesday, February 17, 2004 9:55 PM CST
Happy Birthday Marisa!
Marisa had her liver appointment today. He was very pleased with her weight gain this time. He thought she was looking good. A couple of medications were switched around, but nothing major happened. We then went to see the oncologist. He does not feel that the mass on the adrenal gland is cancer and he gave her the ok to be put back on the transplant list. Thank you so much for your prayers. As soon as we requested your prayers last week, we started to see this situation resolved. That was truly an answered prayer. Last week was very frustrating. We thank God for taking the matter into His hands.
She had a fun birthday. She didn't like the silly birthday hat I made her wear, and she wouldn't eat any cake, but it was a blessing to spend her birthday at home (after the doctor appointments!) and not in the hospital.
I've updated the photo album with some pictures of her big day.
Thank you for being here every step of the way. We love you all.
Thursday, February 12, 2004 11:30 PM CST
We have had a confusing & frustrating week with Marisa's situation. Without going into great detail, we are having a lot of trouble getting her surgery scheduled to remove the adrenal mass & place the internal stent. For whatever reason, the pediatric surgeons at U of Mich are not cooperating with our doctor and things just are not going well. The oncologists and transplant team are saying that this mass has to come out before she can be transplanted. The surgeons are giving us the run-around about doing it. We're feeling very unsettled about the whole situation. The most frustrating part is that none of this is helping Marisa. We're fortunate that right now she is doing well. Her liver seems stable, labs are getting better, and she will be done with the IV antibiotics this week. It's only a matter of time before she gets another infection with the bile sitting in her liver. Each infection causes more damage to the liver. Our liver doctor is calling the surgeon that did her first liver surgery tomorrow to see if he will see us and give us a second opinion. While we would be very comfortable with him doing the surgery, the problem is that he does not work out of U of M. She would have to go back to Children's Hospital of Detroit to have him do the surgery. The problem is that none of our doctors are at Children's and the fact that she caught that horrible infection while she was there before makes us very nervous to go back. When she comes to your mind, please say a prayer that everything is resolved quickly and that the right decisions are made for her. We've already been waiting a month to get this surgery scheduled. The more time that goes by, the longer she has to wait for her new liver.
On a happy note...Marisa is having her first birthday next week! (Feb 17) We want to thank each of you for your constant support and prayers during this past year. Marisa's life is truly a miracle and we praise God for everything he has done for her and for choosing us to be her parents. It is truly an honor to have her as our daughter.
Love,
Frank & Shannon
Wednesday, February 4, 2004 4:13 PM CST
Marisa went to the allergist on Monday. The testing was inconclusive for her drug allergies. For now, they said if she needs the antibiotic, then she can have it with Benedryl handy. She can also be desensitized, but would need to have that done each time she needs the drug.
She had liver clinic yesterday. She had gained a little weight. Not as much as we'd like to see, but at least she is moving in the right direction. They still had not heard anything from the surgeons about when her surgery will be. He contacted them again yesterday. We are also going to get her endoscopy scheduled soon to check her varices.
The only real change is with her formula. Since she is turning one in 2 weeks, we are switching from Similac to Pediasure. This will be much more convenient because I won't have to mix anything, but it's also much more expensive. We're trying to find a way to get assistance with it. There is some extra health insurance (Children's Special Health Services) we can get for Marisa that would cover it (Blue Cross won't). We just have to figure out how much we will have to pay for the insurance and see if it's less than we will have to pay for the Pediasure. Obviously, it will cover more than just the formula, but we just need to see whether the benefits will outweigh the cost.
She returns to liver clinic on her birthday, Feb 17.
She is doing very well right now. She hasn't figured out how to crawl yet, but is doing a good job of scooting around on her bottom! She gets to where she wants to go. She is also playing "So Big!" and waving.
We have a new addition to our family. This weekend we got Camille a six-week old dwarf bunny. She has named her Fluffy. Camille carries her all over the house like she is her baby. She is having a wonderful time being "Mommy" to the tiny bunny. We're told that she will only grow to about 2 pounds. We only got one. We don't want a repeat of the hamster episode where we thought we had 2 males and then ended up with 14 babies!
Have a good week everyone. Sorry it took so long to update this time. There really wasn't much to report on until this week. I'm also keeping very busy with the IV antibiotics.
Friday, January 23, 2004 0:07 AM CST
Marisa's liver doctor called today. He said that they are going to remove the mass from the adrenal gland. While they are in there, they are going to place a stent in the liver to drain the bile lakes. They seem to think that there is a blockage right where the Kasai was done and that a stent will alleviate the problem. If it is working, they will leave it in. Hopefully, this will allow her some more time before she needs to be transplanted. Her frequent bouts of cholangitis are of the most concern to the doctors. We will update when we hear more. Take care and thanks for all the thoughts and prayers. We appreciate it.
Frank
Monday, January 19, 2004 10:15 PM CST
Marisa came home from the hospital today. She looks great and seems her normal, happy self. She is currently taking two IV antibiotics to deal with the infection. They are being administered through a broviac every 8 hours.
The team of doctors will be meeting tomorrow to decide what to do next and when.
Take care.
Frank
Saturday, January 17, 2004 11:43 AM CST
A CT scan was done Thursday night. The final report indicated that the mass is slightly larger, therefore they will have to remove the adrenal gland. While the doctors can't say that it is cancer, they also cannot rule it out.
Her fever is under control and she is back to her normal self. They are not sure how long they are going to keep her. A lot depends on when they decide to do the surgery. The indication is that it will be sooner rather than later.
The pediatric surgeons are hesitant to do the surgery because of Marisa's portal hypertension (she is at a higher risk for bleeding). This may mean that her liver transplant surgeon will do it. He isn't worried about the bleeding because he sees it all the time.
The infectious disease doctors are also consulting with the GI doctors regarding the antibiotics that are currently being administered. There have been signs of an allergic reaction to a couple of the drugs they have used in the past and they're not sure what they should send her home on.
Thanks for your continued prayers. We appreciate it. We most likely will not have any more information until Monday.
Shannon's new number is: 734-936-3298
Thursday, January 15, 2004 1:44 PM CST
The nurse was unable to get a PICC line placed in Marisa. She will go to the OR tomorrow for a broviac line to be placed. At the same time, they will do another CT scan to check the status of the mass on the adrenal gland. The oncologist said that if they see that it's the same size or smaller, they will assume it's not cancerous. If it's larger, then it needs to be taken care of. We're also waiting for a consult from the allergists about her drug allergy. She is allergic to the drugs they like to use for her liver infections. Hopefully they will be able to take care of that while we're here.
She seems to be in a little better spirits. Her fever looks like it has broken. She will be NPO (nothing by mouth) after midnight. They won't have a time for the surgery until tomorrow morning. Pray that she is taken early. I'm not looking forward to having to comfort a hungry baby all day tomorrow. She will not be able to eat until after the surgery.
I'll update again when I can. It's hard to get to a computer when I'm here alone. I won't leave her alone in the room. Thank you again for all of your prayers and support.
Love,
Shannon
Wednesday, January 14, 2004 7:47 PM CST
Marisa was admitted to the hospital this morning. They suspect cholangitis and are treating her accordingly. Since this is her second serious episode of cholangitis, her liver doctor said he was going to send a letter of exception to have her PELD score increased. The doctor seems to think that the infections are a result of pools of bile that are forming in the liver.
The results of the MIBG were negative. Marisa's doctor said that once he gets the okay from the cancer doctors, they will either order another CT scan or consider the cancer issue resolved. At that point, she will become active again on the transplant list.
While in the hospital, as long as her fever subsides, they are going to schedule a scope to check out her varices.
Please continue to pray for Marisa.
If you'd like to call Shannon at the hospital, the number is: 734-647-7633.
Take care.
Frank
Tuesday, January 13, 2004 7:13 PM CST
Marisa is just not feeling well. She has been very irritable since she had her testing done last week. She started running a temp on Thursday and it hasn't broken yet. The pediatrician thought it looked like she might have an ear infection. He saw some fluid in one ear, but it wasn't red. He changed her antibiotic but it didn't agree with her stomach. After 3 days, we stopped that and switched back to a full dose of Amoxicilin. It looked like she was doing better. She was finally acting happy some and eating better. Now today she is very crabby again and her color is getting worse. Her bilirubin is obviously rising. I called and talked to her nurse from Transplant and she is having us come in first thing tomorrow morning. I'm packing for a hospital stay. My gut tells me that he'll admit her. My heart hopes he won't though. It's so hard on her when she's in the hospital. They can never get an IV started and she has to have numerous pokes before they finally get it. There's also the chance of picking up more germs. I'm sure that she caught the flu when she was there for her 24 hour urine test last month.
I'm just praying that she sleeps well tonight. It may be the last chance we get for a while. Hopefully we'll hear some more information about her cancer testing tomorrow. He thought he'd have the results this week. We'll try to update tomorrow with what they say about this illness and the testing from last week.
Thanks for your prayers....
Tuesday, January 6, 2004 9:21 PM CST
We had Marisa's liver appointment this morning. He didn't give us much more information. They will do the scans tomorrow and Thursday. She will possibly have a follow-up CT Scan depending on what the MIBG shows. If the mass has stayed the same or gotten smaller, it sounds like they will just monitor her for the next couple of months and see if it goes away on its own. That all depends on whether or not her liver function stays stable. If this were a "normal" healthy child, then all they would do is monitor the mass, however with Marisa's situation of needing a transplant, we don't have the time to just sit back and wait. That's why they are doing these scans to try to figure out what the mass actually is. The surgeon is very hesitant about doing any kind of procedure on the adrenal gland because of her portal hypertension. The liver doc doesn't think that hers is very significant, so he doesn't think a surgery would create a bleeding problem. When he gets the results back of the scans he'll talk to the oncologist again and they will come up with a plan. We won't have the results of the scans until sometime next week. We should also find out then when her next EGD (scope) will be to look at her varices again. We'll update again when we have more information. That may not be for several days. Thanks for your prayers.
Saturday, January 3, 2004 6:14 PM CST
HAPPY NEW YEAR!
We have thankfully had a very quiet couple of weeks. There hasn't been anything new to report, so we haven't updated this site. We had a very nice Christmas. It was a blessing to be home together as a family. Santa didn't bring Marisa her two front teeth, so we're still dealing with those sore gums. She got her second flu shot yesterday, so hopefully we won't be visited by that nasty bug again. Marisa is doing very well. The only real struggle right now seems to be eating. She just doesn't want her baby food. (Can't say that I blame her!) She is drinking more milk to make up the difference, but it's frustrating to fight with her every time she sits in the highchair. I guess she knows that she's getting to be a big girl and wants to do things her way! She hasn't been eating well since she had the flu. We'll see what the scale says on Tuesday when she goes back to the liver clinic... I'm nervous that her weight won't be good enough again.
We found out this week that she is going to have the cancer scan next week. On Tuesday, Jan 6, she'll get an injection. Then on Wed & Thurs she gets the scan done. Say a prayer that not only does the test show no cancer, but that the sedation will go well. She really fights being sedated. I don't know when we will have the results of the test. We'll let you know as soon as we know anything.
On Tuesday, I think we'll have more of an idea of what the plan is for her. We're anxious to get all of this cancer stuff behind us so she can have her status on the transplant list be active again. We'll update again and let you know what we find out on Tuesday.
Have a great weekend!
Tuesday, December 23, 2003 10:52 PM CST
Marisa is in the Wednesday edition of the News-Herald. Her picture is on the front page and an article about her follows in the lifestyles section. You can access the story here:
http://www.thenewsherald.com/stories/122403/lif_20031224044.shtml
Thanks for your continued prayers and have a Merry Christmas!
Frank and Shannon
Saturday, December 20, 2003 6:49 PM CST
Marisa finished the last of her antiflu drug last night. She is doing great! She is laughing and playing and trying to talk. Thanks for all the support. Take care.
Frank and Shannon
Tuesday, December 16, 2003 3:19 PM CST
We just got home a few minutes ago. Marisa is doing much better. Still not her usual self...but she is much happier than before. She will continue the anti-viral medication until Friday.
She will not be having her scope this Thursday. They said it's too risky to have anesthesia with the viral infection. We'll reschedule for January.
She also will probably not have the MIBG test in Jan. The oncologist said that regardless of the results, they will most likely need to remove the mass and adrenal gland, so it doesn't make a whole lot of sense to do it. The urine test doesn't look like she's postive for the neuroblastoma.
It's possible that she may have another surgery to help the liver drain better. If she has it, it's possible that transplant could be delayed. The team of doctors are going to meet to discuss her case and make the best decisions for her. Pray that they are given the wisdom from God to do what's best for Marisa.
Regardless of what decisions are made, nothing will be done until January. We need to get her healthy again before she can have any procedures. She is officially "on hold" for transplant. They would not accept and organ for her right now. She is not off the list, just on hold until she is healthy and we make a decision about the mass.
Thanks again for all of your prayers and support.
Monday, December 15, 2003 8:36 PM CST
Marisa remains in the hospital. However, she is doing much better. She slept most of the day. Whenever she was awake, she was smiling and pretty happy. We hope to have her home tomorrow. Take care and keep the prayers coming. They make a difference.
We appreciate all the support we've received. The dinners that have been made for the family lessen the burden. Also, thank you to all who have sent letters and cards of encouragement. They have helped to alleviate some of the stress.
Frank
Sunday, December 14, 2003 10:16 PM CST
Marisa was diagnosed with the flu. Her liver doctor said she does NOT have cholangitis. So that is good news. She is taking an IV antibiotic until results come back for a possible bacterial infection. She is also taking an anti-flu drug. Thanks for the prayers.
Frank
Sunday, December 14, 2003 5:20 AM CST
Marisa was admitted to the hospital this morning. She has been very irritable since being discharged earlier in the week. She is also running a fever. They are running tests to determine the problem. Please continue to keep her in your prayers.
Frank
Friday, December 12, 2003 8:58 PM CST
We don't have any new information yet. I did get a call today that her next test (MIBG) is scheduled for Jan 6-8. The first day a dye will be injected and then she will have scans under general ansthesia on the next two days. It will all be outpatient.
We have a transplant meeting tomorrow, so we'll talk to her nurse and try to get some more information. All she knew this morning was that EVERYONE has been going over the CT Scan. She did make it sound like plans were being made to remove the mass. I was driving in the van with the kids going nuts during our conversation, so I'm not real clear on what she said! :)
Thursday, December 11, 2003 6:05 PM CST
Sorry for the delay in the update. Let me go back and start from Tuesday…
We went for our regular Liver Clinic appt. He was THRILLED with her weight gain. 1 ½ lbs in 2 weeks! That was certainly something to thank God for. He then went on to give me the results of last week’s MRA. First of all, her portal vein is clotted. She now is not a candidate for a living related donor transplant. We will have to wait for a cadaveric donor. He then said they found something they were not looking for. On one of her adrenal glands there was a 6 mm mass and a significant number of lymph nodes were enlarged. This could be signaling a cancer called neuroblastoma. She will need to be evaluated further. He said that if it’s found that she does have this, she will most likely require surgery. To say that I was shocked would be an understatement. They scheduled a CT Scan and did a urine test. Later in the day we got a call that they wanted to admit her right away and start a 24-hour urine test and get the CT scan done sooner. She was also being referred to the oncologist.
They admitted her, did both tests and discharged us after the 24-hour urine test was completed. The results of the CT scan came while I was at the pediatrician with Marisa today. It did not show anything different than the MRA did. The urine test will take 4-5 days to process. They want to schedule another test called an MIBG. This is a nuclear test that will be able to confirm if it is neuroblastoma. We don’t know yet when this will be scheduled. It might be done during the week of Christmas.
We had a long discussion with the oncologist. He’s not convinced at this point that she does have neuroblastoma, but he cannot say for sure that she doesn’t. His thinking is that the mass could be removed with no complications. However, if she does have it and it’s progressed beyond stage one, there are no treatment options for her. He will not be able to do chemotherapy because of her age and liver condition. The chemotherapy he uses is very hard on the liver. There are also many noted cases of spontaneous remission with this disease, where they watch the tumors and they go away on their own. Unfortunately, given Marisa’s end-stage liver disease, we don’t have time to wait and see what it does. Another complication is that they think that the body’s immune system is responsible for keeping the neuroblastomas in check. Once transplanted, she will be on medication to suppress her immune system and keep her from rejecting the organ. The oncologist will make recommendations to the transplant team and it will be their decision about whether or not to proceed with transplant at this point or wait and take care of this new problem first. She has not been taken off the list, but we don’t believe that they would accept an organ for her right now.
We are just waiting for diagnosis and further testing. As for her liver, she has another scope scheduled for this coming Thursday, Dec 18. They will be looking at her varices and possibly treating them.
Sorry for the length of this update. Many of you have had questions and I wanted to be as thorough as possible in the explanation. Thank you for your continued prayers and constant support. We know that you will continue to petition the Lord that she will be cancer-free and that the perfect liver becomes available very soon.
Love,
Shannon & Frank
Wednesday, December 10, 2003 10:00 AM CST
This is the first chance I've had to get to a computer here at the hospital. We don't have any more information at this time. She is in the process (since 9:00 last night) of doing a 24 hour urine test. It is going to look for certain chemicals that would be present if she did have neuroblastoma (cancer in the adrenal gland). 95 f the time, these chemicals will be present in the urine. The results will take a couple of days to come back. We are also waiting for a CT Scan to be done. As of right now, it isn't even on the schedule. She hasn't been allowed anything to eat or drink since 3:00 this morning. Needless to say, she's not the happiest child in the world right now. Hopefully we'll get word soon that it's scheduled. We will have the results of it today.
I trust that our Lord has her in his arms and she will be just fine. Everything was quite a shock yesterday. We're waiting for another miracle and can't wait to give testimony of it.
Thank you all for your prayers. Marisa is a very blessed little girl to have so many people who care for her.
I'll post again when there is more information.
P.S. For some reason I can't get to CLASS from this computer. Feel free to update for me if someone reads this. THANKS! :)
Love,
Shannon
Tuesday, December 9, 2003 3:55 PM CST
Marisa is being admitted to the hospital right now. They are evaluating her for cancer in the adrenal gland. Please pray that the findings are normal. We really don't have any information other than that. Please call upon our Lord on her behalf. This will certainly complicate her liver transplant status. We'll update her website as we know more information.
Love,
Shannon & Frank
Saturday, December 6, 2003 9:36 AM CST
We got the MRA done. We won't know the results until Monday or Tuesday. Marisa fought the sedation. They came close to sending us home and having to reschedule it with anesthesia. They took her in once and had to bring her back out because she wouldn't go to sleep. Then she finally went to sleep and she was able to do the whole test. We'll let you know the results when we know them. I think that we should find out at her Liver Clinic appt on Tuesday.
Thursday, December 4, 2003 1:56 PM CST
We got the call this morning that they had a cancelation and can do her MRA tomorrow morning. I'm not sure exactly what they will be looking for. I know for sure they will try to find the portal vein. They have been unable to locate it with ultrasound. The nurse said that the sedation may be tricky because of her liver. Hopefully it's not too stressful for her. It's difficult when she looks at me crying during these tests and I can't do anything to help her. It'll be nice to get this done and out of the way though.
Wednesday, December 3, 2003 10:54 PM CST
Not much new to report over the past few days. She's getting her last dose of the IV antibiotic right now. We'll be glad when that's done. The PICC line will be pulled tomorrow. Hopefully we won't have to deal with this again any time soon. She's been a little fussier than usual these past few days. I think her top two teeth are about to come in. They look like it anyway. Marisa said "Da Da" today. She looked at Frank and said it, so we think she meant it! She hasn't said it again though. She's still saying "Mama" all day long. Camille is trying to teach her how to say "Mille" (prounounced "meal"). She thinks if she shortens her name, Marisa will be able to say it! She just loves Marisa so much.
Marisa is scheduled for her scope on Dec 17. We still don't have a date for the MRA. The first date they had open was in Feb. so they are trying to find somewhere to squeeze her in. She goes back to Liver Clinic next Tuesday.
Have a good night everyone. Thank you for all of your kind words in the guest book. We deeply appreciate each one of you.
Sunday, November 30, 2003
Marisa has been doing very well since her bleeding episode. She has been home for a couple of weeks now. She has one more day left on the IV antibiotics. We are waiting for 2 tests to be scheduled. She needs to have another scope done to check on her varices and possibly treat some more. She also needs to have an MRA to check her vascular system. They have been unable to locate her portal vein with ultrasound. This needs to be checked before transplant.
Aside from that, we are just trying to spend as much "normal" family time together as we can. It's very difficult on Jackson and Camille when they are tossed around while Marisa is at the hospital. We want things to be as normal for them as possible right now. At any minute, we could get the call and she'll end up back in the hospital for several weeks. It's hard to think about being away from them for such a long time again. I want to spend as much time with them as I can before then.
Marisa is laughing and smiling all the time. She is such a happy baby. We couldn't be more thankful for that.
Right now, the plan is to wait until after the first of the year to begin testing Frank to see if he's a suitable living donor. They don't want to start testing unless they plan to use him. For now, she's doing well enough to wait a little while and see if a cadaveric liver becomes available.
I'll do my best to keep this site updated!
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