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Sunday, August 27, 2006 10:53 AM CDT

Hi!
Here is the update I promised at the end of the summer.
I am currently at University of Iowa Hospital. Anthony had his reconstructive hip surgery on Thursday. The surgery took about 5 hours. I am happy to say he came through with flying colors!! He is now in a bright red cast for the next 6 weeks. He is being such a trooper. He is as usual enjoying the attention from the nurses, mom and Grandma.
We will be taking him home today!! Last night, Anthony decided he no longer needed his IV and proceeded to pull it out himself (ouch).
Our summer went by so fast! We spent a lot of time in the pool and playing in the backyard. Joe and I were lucky enough to get away for a very long weekend to my Aunt's lake house with some very close couple friends. We had so much fun on the jet ski's and the boat. Anthony and Gianna stayed with Grandma and kept her very busy.
I also got to go to a Green Bay Packer pre-season game with a very close friend. Looking back at the summer we spent so much time in Wisconsin. It was so nice to have a relaxing and "normal" family summer!!
Gianna will be starting pre-school on Monday. She is so excited. Gianna will be attending "Children's Place" at Seton Catholic School. Hopefully, Anthony can join her for second semester.
Thank You so much for checking in on us!!
Love, Gina, Joe, Anthony and Gianna

Monday, May 15, 2006 12:55 AM CDT

Hi!!
Once again the Cimarrusti-Jewhurst household is filled with plenty of laughter and activity!
Anthony's hip surgery was delayed until August 26. Our insurance would not let us go to Minnesota. He will be having his surgery at University of Iowa's Children's hospital. Joe and I are very happy with our team of doctors there. We are also happy that the hospital is only 45 minutes away from home. So now Anthony can enjoy his summer! We are hoping to open the pool up in a few weeks. Joe has been very busy building a fence around the pool. This will allow the kids to play on their swing set and not be in danger of falling in the water(peace of mind). Anthony and Gianna will also be going to swim lesson during June and July. I look forward to the day they are strong swimmers! Anthony already acts like a fish when he gets in the water!
Our "Make-A-Wish" trip to Disney World was amazing!! We all had the best time! A big, black limo picked us up at our house and took us to the airport! I think Joe and I liked the ride more than the kids! The kids did great on the flight. Anthony kept say " To infinity and beyond". We stayed at an Epcot Resort called the Beach Club.
It was wonderful! We had a amazing view of a beach and the Boardwalk. We could walked to Epcot and MGM Studios. Gianna and Anthony really enjoyed The Magic Kingdom. They got to meet all their favorite charactors. Cinderalla and Snow White both gave Anthony a big kiss on the cheek. Because we had special buttons that said Anthony was a Make-A -Wish kid, we never had to stand on line for any rides or pictures!! What service!! We went to all the different parks(Epcot, Magic Kingdom, MGM and Animal Kingdom and Sea World). Needless to say, we were really busy! Since we were right on Disney property, it was easy to go to the parks in the morning, come back for a nap and go back to the park in the evening. Gianna is already making her plans to go back in a few years!! We also visited "GIve Kids the World Village". This is an amazing place set up for families with ill children. We could have stayed there but it was full. The village has everything a kid could dream of. The best was the ice cream palor with all the free ice cream and toppings you could eat! Make-A Wish is an amazing group. We can't thank them enough for all they did!! We felt so special and loved.
Joe has a new job. He is no longer working for Happy Joe's. Happy Joe's the Company was so supportive of him through all of Anthony's hospital stays. Joe Whitty and family couldn't have been nicer. Unfortunately, Joe worked for a francise. His boss was not as supportive. Joe is now working for "Old Country Buffet". So far he really like it. He has been spending time training in nonother than Minneapolis!!
Joe is not the only one with a career change. I am now currently teaching special education to 6,7 and 8th graders(3 more weeks of school). Next school year, I will be teaching 3rd grade regular education. Our numbers went down in special education, so I am moving to the elementary school. I am really looking forward to the change. Luckily, the junior high and elementary are housed in the same building so I can still see all my close friends in the Junior HIgh.
We are all looking forward to the summer!! Joe and I already have a couples weekend planned with our close friends. We are also looking forward to some really great family activities!!

Have a great summer and we will up date again in August!!

Gina

Friday, March 17, 2006 2:07 PM CST

Hi!!
No news is good news!
Anthony is doing wonderful. I only wish I had the energy he does!
Anthony has been attending speech 3x's a week. We have really noticed a big difference in his language development. He has been talking more in complete sentences. He still needs to work on letting his "needs" be known. Right now he feels hitting or crying should work for gettiing what he wants.
Anthony will be going on April 18th for his hip surgery. We are
scheduled to have the surgery done in Minnesota. We are just waiting for the "ok" from the insurance company. The surgery will take about 5 hrs to do because they are fixing both hips. Anthony will be in the hospital for about 5 days. We will then bring him home in a type of body cast. The cast will stay on for about a month. We are happy to get this surgery done before the nice weather starts. I can't imagine Anthony not in running mode for a month!
This Sunday we are gifted and honored to be taking a "Make-A-Wish" trip to Disney World!! I am amazed at what is all being done for us on this trip. We are flying to Orlando and staying at the Beach Resort on Disney property. We were given tickets to all the Disney sites! They are also providing us with spending money!
This is all going to be so wonderful! Gianna and Anthony are so excited!! I will update when we return from our trip.


Thank you so much for checking in on us. I will be sure to write about Anthony's hip surgery!!

Love, The Jewhurst-Cimarrusti Family

Saturday, July 2, 2005 12:58 AM CDT

Hi.
We sure have been busy since my last update. I am now off for the summer and enjoying every minute of it.
The twins, Grandma and I went to visit my aunt for 4 days at her lake house in Wisconsin. The twins really enjoyed running around and playing in the big house. Gianna only got upset once when she couldn't find the bath tub and had to search all five bathrooms looking for the tub. Joe and I will be going back to the lake house in a few weeks with some couple friends to relax and enjoy the hot tub and boating on the lake. Grandma will be watching the twins for us while we are gone. I always look forward to adult get-aways!!
We all just got back from a visit to South Carolina to see Joe's mom. We had a wonderful time. Anthony and Gianna experienced the beach and ocean for the first time. Gianna enjoyed playing in the sand. Anthony went right for the water. He loved playing in the waves with Dad. Of course I always get teary-eyed watching Anthony do anything for the first time. Joe and I left the kids with Grandma and went to a resort in Hilton Head for a few days. We had a wonderful time watching the sunsets on the water and walking the beach. We even went on a 4 mile kayaking trip through the marshes. On our way home from Carolina, we stopped off in Ohio to spend some time with Joe's brother. The kids really had a good time playing with their cousin Keegan.
We are all happy to be home and have been enjoying the pool.
Anthony shows no fear and loves to just jump in the water. His sister plays it safe and still likes to use her floating ring in the pool. The twins were also moved into big beds. We decided to keep them in the same room and bought them bunkbeds. Gianna sleeps on top. I am in the process of painting a picture on their wall. Their room is done in bright primary colors.
I continue to work on potty training. Boy, are we having fun now. Talk about a power struggle!! And they have most of the power!!
Anthony continues to do well with his speech. I think he would do even better if a certain sister wouldn't do all the talking for him!
We are in the process now of planning our yearly visit to Minnesota. It sounds like we will be going in October. Hopefully, we can line up Anthony's hip surgery.
Joe and I continue to do well. I think I am going through my mid-life crisis(the big 4-0 is this year!) I went with a
friend a few months ago and did something I thought I would never do, a tatoo! I love it, a small chile pepper on my foot. Gianna keeps having me put fake tatoos on her feet.
Like mother, like daughter.HELP!!
Joe continues to be busy with projects around the house. He just finished a kitchen makeover and is busy painting the shutters on the house. Somehow, I just don't think his summer is as relaxing as mine.
I hope all that reads this is also having a wonderful, stress-free summer.
Please don't ever stop believing in miracles!!
Love, Gina

Tuesday, May 3, 2005 1:59 PM CDT

Hi.
I thought I would do a quick update just in case people are still checking in.
Anthony continues to do very well. He is all little boy! He loves to wrestle with his Dad and tease his sister.
On Sunday evening, Gianna won the race to who would get stiches first. Gianna was riding on her new hoppy ball and fell off of it just as she passed the bench in the kitchen. She now has 3 stiches in her chin. The Doctor and the nurses said she was one of their very best patients they have ever had. She didn't cry at all or need to be held down when the stiches were put in. That's my girl!!!
A couple weeks ago, the twins and I went to hear my goddaughter play the piano in a concert for the Ronald McDonald House of Iowa City. Lexy did a amazing job!! She is a very gifted young lady.
Love, Gina

Tuesday, December 28, 2004 3:44 PM CST

Merry Christmas and Happy New Year!!!!!
I would like to begin by saying this Christmas was truly the best ever!!!
My most favorite gift was my family. Being home for the holidays was wonderful. My mom and my brothers and sister and their children all spent Christmas Eve at our house. We had a wonderful time talking, eating and opening numerous gifts. My brother even surprised the twins by dressing up like Santa. Anthony was excited and Gianna hid from him. They both soon warmed up when he opened his bag and handed out gifts. I think Joe and I were more excited on Christmas morning than the twins were. We were both up at 6:00am and were ready to go! The twins finally woke up at 8:00am. We showed them their stockings and their played with those toys for an hour! Finally, were were able to get them downstairs to all their REAL presents. Gianna was very excited by her new kitchen set. And Anthony loved his workbench and big aqua-doodle mat. We still have presents under the tree that they have yet to open. Christmas evening was spent once again with my family at Grandma's house. Grandma got the twins a sit-and-spin. How they don't get sick on that thing is a mystery to me!
On the Tuesday before Christmas, the Silvis Teacher gang(Sue,Judy, Anne, Amber, Rachel, Deb and Kevin) myself and my mom drove to Iowa City to make a meal for the Ronald McDonald house. It was so much fun and so rewarding. We were sad that we didn't get to talk to many families while we were their. But it felt good knowing that when the parents returned home from spending the day with their sick children they would have a hot meal waiting for them. We also took a load of new toys for the families. So many teachers at Silvis donated many wonderful toys! I have to say I work with the most amazing and caring people. They are so much more than co-workers, they are family!
Anthony continues to do well. So far, he has stayed healthy and very activity. He has begun talking so much more. He has also been fighting with his sister. He doesn't let her get away with bossing him around anymore!

Love,
Gina, Joe, Anthony and Gianna

Monday, November 29, 2004 7:31 PM CST

Hi.
Everything in our lives continues to go well. Gianna and Anthony had a wonderful Halloween and Thanksgiving. Joe and I have been trying to make up for all the things we missed out on last year. For Halloween, we took the twins to the pumpkin patch. It was so much fun. Gianna and Anthony ran through the patch to pick out their pumpkins. I think Anthony enjoyed the pettting zoo the most. He kept putting his fingers through the fence for the goats to nimble on his fingers. On Halloween night, Anthony was a bumble bee and Gianna was a flower. They both had no trouble going to doors of friends for candy. When we got to Grandma's house, Gianna handed out candy to other trick or treaters. She made sure each child said "thank you" before she gave them their candy.
Thanksgiving was a wonderful day. You don't realize how important family is until you miss a special meal with them. When we went shopping over the holiday weekend, Gianna kept saying "Ho, ho, ho, Merry Christmas" to each person we walked by. She is so funny. I can't help but laugh when I am with her. On Saturday night, we baked Christmas cookies at Grandma's house. While I sat at the table and decorated cookies, a small hand came over the edge of the table and took a cookie. Anthony can be very sneaky when he wants something. My Anthony has turned into such a normal little boy. He is into everything. I am also happy to say he is talking so much more. He can now count to 10 all on his own. Of course his sister is counting to 100!!! Anthony truly makes me believe in miracles. Because of him I truly appreciate each and everyday. Nothing is ever taken for granted in my life. I will always treasure each and every day I have with him. We are truly blessed. How lucky we are!!
After reading other parents entries, I have come to realize this is also a venting place for us. This year has been so challenging for Joe and I. Yet, so many people have truly tested us. During this year, I have had my very best friends say and do things to me I don't understand. One of my friends told me I was a selfish and self-centered person. This really hurt. I don't think anyone can go through a illness of child and be called a self-centered person. Selfish, maybe. I became very selfish with my time with my family and Anthony. Joe and I both fought for Anthony and put his needs before anyone else. Another friend, who I have always been there for, ended out friendship when we got home for Minneapolis and did not buy a car from her husbands dealership. As much as we would have liked to buy the cars he sells we could not afford what he sold. Instead of talking to us about this, they choose never to talk to us again. And my last dear friend, just stopped talking to me when we left for Minneapolis last fall. No reason ever given. I have tried to call her, but she won't return my calls. Twenty years of friendship with these 3 people and it all ended during Anthony's illness. Not a day goes by that I don't think of them and wonder why. I will end on a happy note and say I am very lucky to have my wonderful Silvis teacher friends. They have truly stuck with me during thick and thin. They made the long journey to Minneapolis to see me and have been their to wipe my tears and share my laughter. They even took me away for a long wild, crazy girls weekend in Lake Geneva. Thank you for the sleep-overs, the toliet paper parties and all the other great times!
(Rachel, Anne, Amber, Sue, Deb,Anita,Michelle, Jennifer,Judy and of course Kevin) I LOVE YOU GUYS!!

Gina

Sunday, September 26, 2004 9:06 PM CDT

Hi.
What a beautiful fall day! Gianna and Anthony spent the day at their Uncle Danny's house playing in the new bouncy tent. The bouncy tent has really helped Anthony with his balance. At one point during the day, Anthony was just laying in the bouncy tent drinking his juice and looking up at the trees and sky. He looked so content. That's when it hit me, Anthony has never experienced a "Fall Day". Last year all his fall days were spent in the hospital. It made me remember a similar day last year when I was walking to the hospital to sit with Anthony. I came across Margaret(Max's Mom) and Grace picking up leaves. I remember I felt like I was interrupting a very special moment. For just a moment they were trying to live a "normal" life. And now a year later, I get to pick up leaves with Gianna and Anthony and make a wonderful memory.
We have been back from Minnesota for a week. Our one year visit was filled with wonderful news. Anthony had a week full of every test you can think of. Anthony's test on his hands came out very well. At this point, they do not think they will have to do surgery for carpal tunnel. Hopefully, he won't need that surgery at all. He has a 50/50 chance of never needing any work done on his hands. Anthony's spine is looking very good. The doctor feels the more he walks, the more it may straighten out. Once again, hopefully he will never need surgery on his back. He will have to have his hips fixed. They are planning on this surgery being in a year and a half. He will be put in a cast from his waist down. And will be in bed for 6 to 8 weeks. Being the amazing little guy he is, I'm sure he will come through it just fine. Anthony's MRI came out good. His heart looks great as do his lungs. The doctors were very pleased with his neuro-psy. exam. His scores were a little lower than I would have liked, but we will continue to work with him to get those up. Anthony will be going for follow-up exams back here for his eyes and ears. We do know that he needs hearing aids. Hopefully we will be getting those soon. But the best news of all was that he is still 100% engrafed with donor cells!!!!! His enzyme level is normal!!!!!!
Another high point of the visit was the chance to see some of our hurler friends. I can't thank Susan and Tom enough for the long talks. It was so nice to be able to share the up ands downs with someone that truly understands!! We were also lucky enough to meet Allison's mom and visit with Taylor's mom and Taylor. All the kids looked so wonderful!

So here we are now. Joe and I are so ready to begin our new life. We are planning on taking the twins to the pumpkin patch next week. I already have their costumes bought for Halloween and can't wait for their first Trick or Treat experience. I don't think Thanksgiving or Christmas will come soon enough. We look so forward to spending all these holidays at home together with our family!!

Love,
Gina,Joe, Gianna and Anthony

Tuesday, September 7, 2004 1:33 PM CDT

Hi!

NEW PICTURES!!!!!!

Wednesday, August 18, 2004 12:06 AM CDT

Hi.
Last Thursday was a dream come true for the Cimarrusti-Jewhurst family. We all got to meet the famous "Wiggles". The concert was at 3:00. We were told to be there at 1:30 for the meet and greet. Joe and I and the kids were in line with about 30 other people to meet and have a quick picture taken with the Wiggles. The stage manager for the Wiggles came out and took Joe, the kids and I out of the line before the Wiggles came out. We were then put in a private room and told we would have a personel meeting with the Wiggles. The local TV station was going to do a feature on Anthony meeting the Wiggles. We were shocked and very happy. The Wiggles came in and spent 15 minutes talking with Anthony and Gianna. It was amazing! The kids were so excited. They went right to them and laughed and talked. The Wiggles even sang "Happy Birthday" to them. I have never met 4 nicer guys. It was so great to be able to tell them what their music did for Anthony during his transplant. Joe told them how they could always make Anthony smile when no one else could. I think they were overwhelmed at what a impact they had on his health. The Wiggles autographed hats for the kids before they left.
At the concert we were seated in the second row. Gianna and Anthony clapped and laughed through the whole show. Anthony enjoyed watching the big screen in front of him. I think he thought it was one BIG television. At the end of the show, the Wiggles came to our end of the stage and each one of them said "Bye Anthony and Gianna". It was one amazing day!

Anthony and Gianna will be celebrating their "2nd" Birthday on Friday(August 20th). There big present from Joe and I is a jumping ball tent. I think they will really love it. I remember last year on their birthday it was a very mixed emotion day. We couldn't help but wonder if the twins would be together for all their future birthdays. I sit here today with happiness and sadness. Happy that Anthony is here to celebrate 2 years, but sad for all those other Hurler Children that aren't.
I wonder how long Joe and I will feel this "Surviror's Guilt". Everyday when I give Anthony a big hug I realize there are far too many parents that can't hug their babies.
How I wish I could give them one of Anthony's hugs from their own children. My thoughts are with all the Hurler families daily. They are all amazing people.

On Monday, I return to work. I am looking forward to a "normal" school year. Between my maternity leave and Anthony's stay in Minnesota I have not had a full teaching year for awhile. I will be teaching 7th and 8th grade special education this year.

We will be leaving for Minnesota on September 12th for our 1 year check-up. Both Grandma's are coming with us. We are hoping for lots of great news, but know we will hear things that aren't so great. We continue to tell ourselves to take one day at a time.


Love, Gina

PS We will be putting our Wiggles pictures on our page later this week. So please check back in!!!!

Wednesday, July 28, 2004 9:55 AM CDT

Hi.
I figured it was about time for an update on Anthony.
Anthony continues to do wonderful! He began walking on his own two weeks ago. We were at his Grandma Joan's house and he just took off without his walker. He is now walking, running and jumping! I find myself very tired from chasing after him and his sister. They are always going in two different directions.
Last week, we took the kids to my Aunt Karen's "small" lake house in Wisconsin. We all had a wonderful time. Gianna got to go on her first boat ride. She was a true sailer like her mom. Anthony wasn't able to go on the boat. We felt it best to keep him away from the lake water. We would rather be safe than sorry with him catching anything.
Joe and I got some very exciting news today. Anyone that reads about Anthony and Gianna know what BIG "Wiggles" fans they are. The Wiggles are coming to town for a concert on August 12th. We were able to get second row seats for the show. We also found out today, that we get to go back stage and meet the Wiggles in person. I think Joe and I are more excited than the kids. I can't wait to tell them what a important part they played in Anthony's recovery in the hospital. Anthony watched their videos so much in Minnesota that he wore out the tapes. We will make sure to take lots of pictures and post them on his website.
Thank you again for checking in on us. We continue to try and live each day to it's fullest.
Love, Gina

Wednesday, July 7, 2004 9:59 AM CDT

Hi.
Today is a day I truly feel I need to update on. A year ago today was the worst day we hopefully will ever experience in our lives. This is the day we were told Anthony had Hurler's. It's hard to believe it's been a whole year. I remember that day so clearly. The shock, the sadness, the shattering of our dreams. Joe and I truly felt we would never laugh or smile again. On this day, we had no idea that there was a procedure called a "Stem Cell Transplant" that could possible save our son's life.
And now, here I sit a year later with my son, the miracle child. When we began our journey last year, we felt so alone and scared. We were told that we would be taking Anthony to Minneapolis for 6 months to a year. Never in our minds did we ever doubt we would be bringing him home. So many people came together to help us with our stay in Minneapolis. Friends, family and strangers. The prayers and support has gotten us get through a very difficult time.
I think the shock of the past year is finally getting to me. During the transplant I did what I had to do. Now I look back and realize how frightening everything really was. Three families with Hurler children didn't get to bring their babies home. They too had to go through that terrible day of finding out their children had Hurler's. They too should have gotten to bring their children home.

Joe and I would like to thank everyone for all the help this past year. The love and support has helped us so much. We never could have done this without each and every one of you.

Love, Gina

Friday, June 18, 2004 11:49 AM CDT

Day T+246

Hi everyone. Anthony and Gianna have been keeping us busy the last month. Anthony is doing wonderfully. He goes everywhere with his walker. He really doesn’t need the walker but he doesn’t have the confidence to move without it. Anthony has learned to crawl and his PT says we have to take the walker away from him next week. I’m sure that will be interesting. He is also starting to say a few words very clearly. His physical therapist is going to back off to every other week once he starts walking on his own. We feel that is going to happen very soon. His speech therapist is going to double her schedule once PT is cut back. I believe the best therapy Anthony has is playing (or fighting, whichever you would like to call it) with Gianna. Anthony imitates her and he has learned so much from her. Gianna is blazing ahead. She is now learning her numbers up to 20. It seems like she learns something new every day and knows how to use it in context. They are both very curious and some times it is a challenge keeping up with them. Gee, we can hardly wait until they turn 2!

My mother was here for the month of May. That was a very good visit. She had not seen the kids since before Anthony went to Fairview. She was a big help to Gina and me and I know she enjoyed the time she had with the kids. She is going to come with to Fairview for Anthony’s one year visit in September.

Father’s Day is Sunday and what a special day that will be for me. Last year, we were waiting for test results to come back. We knew what they were testing for and we were scared. This year, Anthony is healthy and acting like a little boy should act. I can’t ask for much more than that. Gina and I feel very blessed. Please remember to say a prayer for the families of Mighty-Max, Nikki, and Christopher. Christopher earned his angel’s wings last week. Our thoughts and prayers are with their families. We also want to thank all of you who keep checking this site for anything new. Your support has always been appreciated. Happy Father’s Day.

Love,
Joe, Gina, Gianna, and Anthony

Monday, May 10, 2004 12:52 AM CDT

Hi.
I'll begin by saying that Anthony continues to do very well. He has speech and physical therapy once a week at our house. He really works hard for Kim and Sarah. Kim says he is making very good progress with his gross motor skills. I think what amazes them both is his sense of humor. When he laughs, you can tell it goes from his toes all the way up to his head! I love the sound of his laughter. Anthony is such a little boy. He is full of energy and curiosity. He loves to stand at the front door and look out the window. I wonder if he knows there is a whole world out there just waiting for him.
I had a wonderful mother's day. Of course my best gift was Gianna and Anthony. The first thing I did Sunday morning was thank God for my two wonderful and special children. I feel so blessed to have Anthony with me. I think of all the wonderful mothers we have met this year and their special children. I often wonder why we were so lucky and got to bring Anthony home. We had some sad news about a little girl named Nikki. She also had Hurler's. She became an angel on Mother's Day morning. It just doesn't seem quite fair. All this makes me look at life in such a different way. So many people get angry at each other over the smallest things. I just don't understand any of it. We should just learn to enjoy life and each other. Take each day as a gift. Joe and I have such a different outlook on life. We may have not handled this year as well as we should have. But we tried our best. Thank you to all the people that have stuck by us. We love you for it!

Happy Mother's Day to ALL the wonderful mom's out there!!!

Love, Gina

Tuesday, April 13, 2004 3:19 PM CDT

Hi!
We are full of good news today!
We got our test results back from Fairview on Friday. Anthony is still 100% engrafted with donor cells! HIP HIP HOORAY!!
Anthony also still has his very needed enzyme. This is the kind of news we like to hear from Fairview.
Anthony continues to do well. He has become very mobile. He pushes his little walker all over the house. He has gotten very good at turning it around and changing directions. I honestly think he could walk without it. But I think right now it's a security thing for him.
We FINALLY got to spend a holiday with our whole family. Gianna and Anthony had a fun filled Easter. The night before Easter, Aunt Darla brought eggs for them to color. Anthony liked to look at the eggs while they sat in the food coloring. Gianna enjoyed slam dunking the eggs into the food coloring. It was quite the experience. The Easter Bunny came Easter morning. He left them baskets with books and animal crackers. Then we hopped on over to Grandma's house for a Easter egg hunt. The twins found the eggs like two old pros. Anthony went for the eggs hidden high and Gianna went for the low ones. I had forgotten how great it is to be together with family. I know Anthony was very happy to see everyone. He laughed and smiled all day!
Today was Anthony's first day off his meds. I don't know who is happier, Anthony or Joe. It will be odd not seeing Joe sitting at the kitchen table preparing meds. for the day. I wonder what he will do with all his extra time!

Love, Gina, Joe, Gianna and Anthony

Tuesday, March 30, 2004 12:02 AM CST

Day +166
WBC - 8.9

Hello everyone,

We got back from Minneapolis last night. We were there for Anthony’s six month check up. It was a day full of good news. Anthony’s heart is in good shape. His lungs have fully recovered from the RSV that he had in January and February. All of Anthony’s labs came back in the normal range. He will be off the CSA, bicitra, magnesium, and amlodipine in two weeks. He will be off the bactrim a month after that. With one exception, his neurophsych scores are at 20 months, which is one month ahead of his chronological age. The one exception was his score in speech and language development. He scored at ten months. Speech and language are one of the biggest challenges for Hurler kids so we have our work cut out for us in that area. Over all, we were very pleased with what we heard yesterday.

It was very good to be back at the Ronald McDonald House. We realize once again that we are not alone in this journey. It was very nice to talk to Susan and see Kaitlin. We pray that they can go home soon. Anthony’s physical therapist and speech therapist will be here soon. We are finally going to start his therapies. Hooray!

Take care,
Joe

Monday, March 15, 2004 12:39 AM CST

Hi.
Things at home have once again calmed down. Joe's dad, passed away on March 5th. He was diagnosed with colon cancer about the same time we found out Anthony had Hurler's. Anthony and his Grandpa went through chemo together. I always felt so bad for Joe and his mom. Joe was unable to be with his father through his illness and Joe's mom was unable to be with her son and grandson. I look at Anthony and Gianna and cry for them, they are going to miss out on one of the best Grandpa's anyone could ask for. I do find comfort in realizing that Grandpa Jim is watching out for Anthony.
Anthony, Joe and I will be headed back to Minnesota on March 29th. Believe it or not, it is time for our 6th month check-up. Anthony will be having a chest x-ray, a EKG, and testing with his psychologist and Doctor. We will be doing all this in one day. Hopefully we will be in and out of there in 2 days.
Anthony continues to do well(knock on wood). He has had a runny nose but seems to be dealing with it rather well. Yesterday, Uncle Danny stopped by and brought Anthony and Gianna a "BIG RED CAR" just like the WIGGLES!! They both love it! They have to take turns on driving the car around the basement. Anthony loves to sit in the car and honk the horn. I think that Gianna is secretly hoping that Uncle Danny will buy her a real red car someday with all his millions!!
Love,
The Cimarrusti-Jewhurst Family

Wednesday, March 3, 2004 8:49 AM CST

Day +139

Hi.
I think things are finally calming down around our house. Anthony had a rough two weeks after he came back from Iowa City. He was having trouble keeping his food down. He had so much yucky stuff in his lungs that needed to get cleaned out. Anthony ended up losing weight because of his lack of appetite. He also has had a lot of trouble digesting his milk. He is currently drinking soy milk. Hopefully, this will help the situation.
Joe and I have also noticed some changes in Anthony. He has been laughing and smiling so much more! He has begun walking again without getting angry(he is still using his walker for balance).
Anthony is also teething! He has gotten very good at keeping us up half the night! Anthony has also taken a very large interest in Gianna. Whatever she does, he wants to do it too!! He has been trying to hold his own spoon when he eats just like his sister. Thank God for Gianna. She is the best teacher for Anthony. If only she would share toys with him! Anthony has also started to pick up little pieces of food with his fingers. So many of the things he is doing we took for granted when Gianna did them, but with Anthony it is all so amazing!!I can't even begin to express how wonderful it is to be together at home again. We have been trying to live one day at a time. Yet the fear of having to go to the hospital is always with us. Hopefully, Anthony or GIanna won't be catching any colds for awhile.

Love, Gina, Joe, Gianna and Anthony

Friday, February 20, 2004 9:56 AM CST

Day +127

Hello again from the Quad Cities. We brought Anthony home on Sunday. It has been a very busy week adjusting to being a family again. Anthony came home still on oxygen. We have weened him off of it all week and he should be done with it tomorrow. We are taking it a day at a time with Anthony. He is feeling fine today. His white blood count, hemoglobin, and platelets are in the normal range and he looks good. He is still very tired and he sleeps a lot but I'm sure his time in Iowa City took a lot out of him. As I said, we are happy with how he is today and we will see what tomorrow brings.

Joe

Friday, February 13, 2004 11:04 PM CST

Day T +120
WBC - ?

Hello again. Anthony is seems to be getting better every hour. We have him down to 1/2 liter of oxygen and he is as feisty as ever. If they ever start his over night feeding early, we will be able to try and feed him. They start it so late that he doesn’t want breakfast or lunch. We know he will eat if he has the chance. It seems that the doctors here do not realize or accept the fact that we know Anthony better than they do. I believe they think they are doing what is best for Anthony, but they have to listen to us, too. Anthony amazed us in Minneapolis and he continues to amaze us in Iowa City. We are hoping to have Anthony off the oxygen by Sunday. We think that is a realistic goal.

Anthony is finally sleeping and I think I’m going to join him. Thanks for all your comments and your prayers. They still mean a great deal to us.

Love
Joe and Gina

Sunday, February 8, 2004 8:39 PM CST

Day +115

What a difference a week makes. Anthony is out of PICU! His breathing is good. He will be in the BMT unit at Iowa City until they are convinced his viruses are under control. He slept for me most of the day. However, he seemed to come to life when Gina replaced me. He was playing with his toys and laughing at Gina. We ave started him on clear liquids and we will start feeding him tomorrow. Thank you for all your prayers.

Joe

Friday, February 6, 2004 9:56 AM CST

Day +113

Anthony is very unhappy to be where he is. He has enough energy to throw himself around in his bed. He doesn't want to play with his toys and he doesn't eant to be touched most of the time. I was able to hold him for about an hour yesterday and we both fell asleep. Hopefully, Gina will be able to hold him today. His numbers are looking good and they are trying to ween him off the bipap slowly. Once he is off of that and can sustain his oxygen levels with room air he will go back to the BMT unit. His viruses are still causing his temp to be a liitle high so he has a borderline fever. I have always liked Anthony's spunk. However, I wish we could make him understand that he should put all that energy into getting better. The doctors have said that they are amazed he is doing so well. We are praying he gets off the bipap soon.

Joe

Wednesday, February 4, 2004 6:45 AM CST

Day +111
WBC - 10.7

Good morning,

Sorry I missed yesterday's update. I was able to spent the day with Anthony while Gina went home to spend the day with Gianna. Then Gina and I switched places last night and we will switch again tody. Enough about our crazy schedule.

Anthony continues to improve. As you can see, his white blood count is very good. His body is helping to fight his two viruses and the staph infection in his blood. The staph infection was yesterday's news. I don't remember the name of the staph infection, but the prescribed treatment for it is vincomyacin. He has been receiving vincomyacin since he was in Illini Hospital in Silvis so they feel the staph infection is under control. One thing I have forgot to mention is that Anthony has received two blood transfusions because his hemaglobin got down to 7.6. He tolerated the transfusions very well and is holding his own on the hemaglobin.

We know Anthony is getting better because he is expressing his displeasure to the nurses every chance he gets. He is also rolling on to his side by himself and turning the pages of the books when we read to him. They are going ro remove the oxygen mask today and put a canula in his nose. If his blood gasses and pulse ox can stay up they will not put the mask on again. That is what we are praying for. Thanks again for checking in, it means a lot ot us.

Joe

Monday, February 2, 2004 5:16 PM CST

Day +109

Hello again,

Things are looking better today. Even the doctors are saying that Anthony is getting better. The are weening him off the oxygen. He is down to 5 liters today. Yesterday, hewas still at 30 liters. They did find a second virus growing in a culture today. At first they thought is was influenza A but it turned out to be adenow (you will have to excuse my spelling on that one). They are not going to do anything different as far as treatment. All I know is that Anthony is definnitely getting better. Gina and I had him laughing very hard last night. He is very aware of us as we come and go. He is also expressing himself more to the nurses as they do their job. We will get out of PICU when Anthony no longer needs oxygen support. We are happy with the way things are going and we are not as scared as we were yesterday. Thanks for checking in, we appreciate the support. We now have access to a computer in Iowa City so we can update every day. Take care everyone.

Joe

Sunday, February 1, 2004 11:25 AM CST

Day +108


Hello again,

Sorry it took so long for another update. It looked like Anthony was getting better at Illini Hospital
but looks are deceiving. Anthony’s pulse ox would not stay above 90 without oxygen support so Dr. Metcalf transferred Anthony to University of Iowa Hospital where they have a very good BMT unit. Dr. Goldman is the head of the transplant program there and he was on staff when Anthony was admitted. He has done stem cell transplants for Hurler kids and he knows most of the doctors at Fairview. We feel we are in good hands in Iowa City. We also want to say that Dr. Metcalf in Silvis did everything he could. He talked with Dr. Grewal a couple of times each day. Anthony just could not receive the care he needed in Silvis. Dr. Goldman said that he would have followed the same course of action that Dr. Metcalf did if we had gone to Iowa City first and we would still be where we are right now.

Back to Anthony. He was able to hold his pulse ox above 90 with a nasal canula and 5 liters of oxygen Friday night. Saturday morning he started having trouble keeping his number above 90. They did a broncoscopy that morning so they could test the fluid in his lungs to determine exactly what he had. It was then that his numbers started to get really bad. Dr. Goldman told us if Anthony got much worse they would have to ventilate him. That was very scary to hear and ventilating Anthony is the last thing we want to do. That was the most afraid we have been since this process started in September. They moved Anthony from the BMT unit up to Peds ICU.

We had to wait almost an hour to see Anthony and it was not a very reassuring sight. He had a mask strapped to his face, IV drips going into his Hickman, a tube down his throat to drain off his stomach, probes on his hairy little chest, and a new line in his wrist to draw blood since both of his lumens are being used and he had tears rolling down his cheeks. His arms were restrained because he was actually swinging at the nurses while they were hooking him up. Good for Anthony! He was also laying there in his diaper. Gina went to him immediately while I talked to Dr. Moreland. She told me that his blood gasses were only at 32 and that they were going to ventilate him right away. I expressed my objections but it looked pretty grim. Gina told the nurse to get Anthony a blanket and Gina covered him and held his hand. Anthony’s numbers improved immediately. Dr. Moreland was very surprised so she measured his blood gasses again and found out that they had improved to 58. She said that was borderline but they would not ventilate him if he continued to improve.

Gina and I stayed with Anthony until 7:45 last night. That is when I woke up in the chair and found Gina sleeping with her head next to Anthony. We were exhausted. We went down to Anthony’s room on third floor and slept there. Anthony was sleeping when we left and Sheila, his nurse, said she would take good care of him because he was her only patient last night. We fell asleep almost immediately. I woke up at 3:30 this morning and went to check on Anthony. Sheila said he was improving. His blood gasses were in the 70s and 80s and his lungs sounded better. Very good news! I just talked to Gina and she said that the doctors were surprised at how good Anthony is doing but they did not want to be too optimistic. Dr. Goldman said he could still get worse before he gets better and he may still need to go on the ventilator. We are choosing to be positive and think he is getting better. Sorry this is so long, but it has been a very busy weekend. We will update in the next couple of days, hopefully with good news. Thanks for your thoughts and prayers.

Joe

Monday, January 26, 2004 2:59 PM CST

Day +102

Hi everyone,
We were enjoying having our family together again when Anthony decided to spice up our lives. Thursday, he had a fever of 102. We rushed him to Dr. Metcalf's and he admitted Anthony with pneumonia. Dr. Metcalf was very aggressive in his treatment and Anthony is getting better. We are not sure where Anthony picked up these germs, but we are going to be more vigilant than ever.It is disheartening to see him back in the hospital and under an oxygen tent. However, this is only a temporary setback. The one good thing that came out of this episode is that Anthony's white blood count tripled when he got sick which means that his body made white blood cells to fight the infection. That is very encouraging.

The day before Anthony went into the hospital we found out that he is still 100% engrafted and his enzyme level is at 67% of normal. That is really good news. We will be going back to Fairview the first week of April for Anthony's six month visit. I'm sure we will talk at you before then.

Joe

Saturday, January 17, 2004 10:35 AM CST

Day +93

Hi!!
It feels GREAT to be home!
Our ride home was the longest 5 1/2 hours ever. Anthony was a great little traveler. I think he knew he was on his way home. When we arrived back in Rock Island, Anthony and Gianna were very happy to see each other. They both laughed and smiled a lot. The best part of the whole evening was when I looked in on them both sleeping in their beds. What a overwhelming feeling. I had the biggest smile on my face as tears rolled down my cheeks. Right now I am on "cloud nine".
Love,
Gina, Joe, Anthony and Gianna

Tuesday, January 13, 2004 10:20 PM CST

Day T +89
WBC - 7.7

Anthony is still the boring patient he has been since he left the hospital. Anthony is so boring the doctors are sending us home tomorrow. HIP, HIP, HOORAY!!!!! We know this is only one day of our long journey, but we are very excited about having our whole family at home. This will be the first time that Gina and I will be in the Quad Cities at the same time since September 21st. We are both taking the rest of the week off to get settled at home and take care of some family matters. Fortunately, we have Anthony’s Uncle Dan to help us this week. He is going to help watch the twins.

We will continue to update when we have news about Anthony. We want to thank everyone for checking on Anthony and for your continued thoughts and prayers. They have meant so much to us and we can’t thank you enough. We also want to send a special thank you to Grandma Joan, Aunt Debi, Aunt Joan, Aunt Darla, Uncle Dan, and Uncle Ron for all their help. We couldn’t have done this without you.


Love,
Joe, Gina, Gianna and especially Anthony

Thursday, January 8, 2004 5:19 PM CST

Day T +84
WBC - 4.0

I know it has been a while since the last update, but we have not had much news. It was great to have Gianna here for three weeks. Anthony made some good progress with his walking and talking. He was actually doing things he never did before in PT. The doctors are still impressed with his progress. Anthony is still their most boring patient. We are still praying that he doesn’t get any fevers or infections before day 100. Thank you for all your prayers and support. It feels like we need them now more than ever.

Joe

Friday, December 26, 2003 3:43 PM CST

Day +71
WBC 5.0

Hi.
We are now on the count-down to hopefully going home. Joe and I are hoping Anthony will get to leave on day 100. If Anthony can continue to stay healthly and strong we should be hitting the road back to Illinois the last week of January.
Christmas in Minnesota sure was different this year. The Ronald McDonald House Staff did a very nice job making it special for the families that are away from their loved ones. Christmas Eve night, a large group came to the house and brought a large Chinese Dinner. There were also clowns making animals out of balloons. Gianna and Anthony were very unimpressed with them. I think they may have been a little afraid. Later, Santa and Mrs. Claus made their grand
entrance. The twins just stared at them. Santa called our name and we were presented with a large bag full of gifts. While we were collecting our bag, the twins got a better and closer look at Santa. Gianna smiled and laughed, Anthony began to cry. We are not sure where the bag of gifts came from. We are hoping to find out who gave our family such nice things. Anthony and Gianna have enough puzzles and books to last them many years. Joe and I received some really special gifts too. It is so strange to be on the receiving end. Joe and I would take part in the Angel Tree back home. I know what a wonderful feeling it is to give to a family that is having hard times. I guess I have never thought of us as having hard times. We are so blessed . We have so much more than we ever dreamed we would have. After all those years that we thought we couldn't have children and then to have Anthony and Gianna come into our lives. That in it's self was a miracle. And to be given another chance with Anthony. Wow, life is GREAT!
On Christmas Day, Joe and I pretty much stayed hidden in our room. It was nice to spend the entire day together with no doctors or therapists.
I am so sad to say that Joe leaves tomorrow. Our week went by way to quickly. I had forgotten what it was like to be a whole family. I now know it is really nice. I have to keep reminding myself that we will all be home together soon.

Here's hoping you all had a very Merry Christmas!

Love, Gina and the WHOLE GANG!!

Wednesday, December 24, 2003 10:49 AM CST

Day 69
WBC +5.1


Merry Christmas!
This week is going by so quickly. It has been so wonderful to be together as a family. Watching Anthony and Gianna together is amazing. Anthony is learning so much from his sister. His walking has improved, his speech, and his attitude. I knew Gianna would be the best medicine for him.
Tonight the twins meet Santa Claus for the first time. We have been waiting until we were all together before they saw him. I'm sure Anthony will be unimpressed and Gianna will be curious as usual. This afternoon we let Anthony and Gianna open some presents. Anthony was very happy with the box and tissue paper. He could care less with what was inside. And of courese, whatever Anthony has, Gianna wants! Tomorrow should be real fun!!
Anthony continues to do really well with his tests. His platelets are 121(normal is 150). White blood counts continues to rise. His magnesium level has been low. He has gone back to a nighttime IV.

Joe and I continue to feel very blessed this year. We have been given such a wonderful gift from God this year. I am so thankful to be together with my wonderful husband and two very special children.

Have a peaceful and joyful Christmas!

Love, Gina

Thursday, December 18, 2003 9:57 AM CST

Day T +63
WBC - 4.7

More good news. Anthony is 100% engrafted! ThatÂ’s the news we were waiting for. His enzyme level is at 50%. He will have another enzyme and DNA test on day 100. He is such an amazing little boy IÂ’m expecting even better news then.

PT continues to go well. He even did well in OT yesterday, but that was probably an accident. He doesnÂ’t like OT very much. He also enjoys speech but he still will not make a sound for the therapist.

Gianna and Anthony have bonded once again. They gave each other a hug today. Of course, they then proceeded to fight over the blocks. I know they are looking forward to seeing their Mom on Saturday. We are looking forward to a fun Christmas week. I will talk at you soon.

Joe

Tuesday, December 16, 2003 9:33 AM CST

Day T +61
WBC - 4.9

Ho, ho, ho. Oh I’m sorry. We’re not at the north pole, it just looks that way. We got more snow last night. Now the wind is blowing it around. Fortunately, Anthony has the day off. We are going to stay home and work on Anthony’s walking. He had a very good day at PT yesterday. We want to improve on that. We are also going to go down to music with Mark this afternoon.

We should know about Anthony’s DNA test by Friday. We already know that his enzyme level is 50%! Anthony is full of good news. He is doing very well. His stomach is also getting smaller. He is able to wear jeans and his sweats again. He has his 60 evaluation on Friday. I expect to here good things.

Gianna seems to be having a good time here. She and Anthony are interacting just like any other brother and sister. Gianna likes to go down to the common area and explore. She discovered a stroller with a baby doll in it and she pushed it all over. I’ll let you know when we hear about the DNA test.

Joe

Wednesday, December 10, 2003 1:38 PM CST

Day +55
WBC 4.2

Hello again from a very snowy and cold Minneapolis. Once again we got snow dumped on us. It's great not to have to drive in it. But pushing a stroller through it is quite a upper body workout! Anthony continues to do great. His white blood counts are good and he has maintained his own platelets. Anthony was also taken off his night time IV's for Cyclosporine and Magnesium. He now takes these meds. orally. My heart goes out to Anthony every time I bring him his meds. He is taking 13 different medications. Some he takes 2 to 3 times a day. The 8am and 8pm are the worse. I come at him with 12 syringes full of meds. It takes me about 40 minutes to give them to him. He has learned to hate them. I have personally tasted most of the meds. All I can say is "Yuck". This week at clinic, Anthony had blood drawn to test his DNA and enzyme level. This will tell us his engraftment level. We should get those results at the end of the week or early next week. I am very nervous about these results. Hopefully, they will all be very good.
I have really enjoyed my week with Anthony. This is the first time I have had him all to myself. I feel so lucky. We have had a lot of cuddle time. We have also been working very hard on our walking and memory skills. Anthony continues to show off his wonderful building skills. His towers continue to get taller each time. His OT, PT, and speech teachers have reassured me he is doing really well. They all are doing a wonderful job with him. But than Anthony continues to perform like a star!
Joe,Grandma and Gianna will be arriving early Saturday. Gianna will be spending 3 weeks with her brother. Hopefully this will be a positive experience for everyone!
Thank you all for checking in on us!!
Love, Gina and Anthony



I want to take a minute and thank a very special person in our lives. My very special godmother. She is the person that has made it possible for Joe and I to fly back and forth each week between Rock Island and Minneapolis. So thank you so much Auntie Karen. Your love for us is so overwhelming. We are so blessed to have you in our lives. So to repay you, we are going to come and live with you in your lake house for the whole summer!! HA! We love you!!!

Saturday, December 6, 2003 4:10 PM CST

Day T +51
WBC - 5.8

Clinic went very quickly this morning. Anthony gave blood and we found out that his white blood count increased without any growth factor since last Tuesday. He is obviously producing white blood cells by himself. Way to go Anthony!

Gina will be here any time now. I know she can’t wait to see Anthony. I also know he will be happy to see her. Gina will keep you updated next week. Bye for now.

Joe

Thursday, December 4, 2003 10:31 PM CST

Day T +49
WBC - 4.9

Once again, Anthony is doing very well. His white blood count went up again and that is with less growth factor. The doctors are so happy with his rising white blood count that they are taking him off the growth factor for now. If his numbers continue to rise they won’t give him any more growth factor. The real surprise today was his platelet count. He has been around 40,000 for many days and he has been receiving platelets every other day. He last received platelets on Tuesday and his count was 54,000. Today his count was 105,000! The doctors think Anthony is now growing the platelets and they are not going to give him any until Tuesday. And that is only if he needs them. If he keeps doing this good he will only be going to clinic twice a week. We also will be stopping the over night meds on Monday. That means Gina will get to sleep through the night next week. Lucky Gina.

Anthony had PT and OT today. He only had a good 15 minutes in PT and OT was a waste. Anthony is teething and I think he is bringing in his molars. He didn’t want to eat much today, he was cranky and didn’t want to be touched, and all he wanted to do was sleep. He was unhappy with me most of the day because I made him follow his routine, but I’m guessing that that won’t be the last time he is unhappy with me.

Tomorrow we will be half way through Anthony’s 100 days. It is hard to believe how fast the last two months have gone. With Anthony doing so well it is a little boring and a little lonely up here. But that’s okay. I’ll take boring and lonely if it means Anthony keeps getting better. I’m looking forward to seeing Gina on Saturday and I know she can’t wait to be here with Anthony. It’s going to be a nice weekend here so we shouldn’t have any problems with travel this time. I’ll try and update again before I leave.

Joe

Tuesday, December 2, 2003 7:38 PM CST

Day T +47
WBC - 4.6

Hello from the great white north. Anthony and I are having a guys week. Right now Anthony is sitting on the bed throwing his cups and Styrofoam blocks at me. It’s nice to know things have not changed much. Anthony is doing wonderfully. At clinic they told me he is a boring patient which is precisely the kind of patient they like. He has no complications, thus far, and his numbers keep getting better and better. We will be taking him off the predinisolone on Christmas Day and we hope to take him off the Zantac at the same time. That will take him down to seven meds and two inhalers. We keep praying that Anthony continues to do well. Thanks for all your thoughts and prayers. I’ll talk to you soon.

Joe

Saturday, November 29, 2003 1:06 PM CST

Day +44
WBC 4.6


Happy "belated" Thanksgiving!!
Joe and Gianna arrived yesterday at 9:30 in the morning. We waited for this magical reunion between Anthony and Gianna. It never happened. We honestly think each of them thought we sold the other to the gypsies. There was not much of a reaction from either of them. We did however realize what it was like to have twins again. We were back to the assembly line of dirty diaper changes! This morning when they both got up, they were really happy to see each other. Maybe, yesterday was too overwhelming for them. Anthony continues to do well. His white blood count is increasing and he is receiving less growth factor. He is only going to get growth factor on Tuesday and Thursday this week. Hopefully his numbers will continue to increase. Anthony is still getting his CSA in his central line three times a day, however the dose has been decreased. They will test his CSA level on Tuesday. Anthony is also getting an electrolite IV every night. We are hoping to end that IV this week. Anthony's hair is starting to come in and it looks pretty dark and thick. We always knew Joe would have to teach him to shave at 16 but we thought that would be 16 years not 16 months. Oh well. Anthony also gets a full week of speech, PT, and OT this week.

Even though our week is ending on a happy note, the middle of our week was very sad. Anthony's hurler friend, Mighty Max, earned his angel wings this week. Our deepest prayers go out to his family. They are very special people.


Love, Gina, Joe, Gianna and Anthony
(it sure feels good to write all those names!)

Monday, November 24, 2003 4:45 PM CST

Day +39
WBC 3.5

Hi! I am writing from the winter wonderland of Minnesota.
Joe had a lot of difficulty getting home yesterday. The airport cancelled all small planes. Joe ended up getting a flight to Detroit and then to the Quad Cities. He can usually get home in 40 minutes, yesterday took him 7 hours!
My week up here is going to be so different than my usual routine. I am so use to sitting in the hospital with Anthony. Now I am quite busy. We need to go to clinic at 8:30am on Monday, Wednesday and Friday. We usually spend a couple of hours there getting platelets or whatever else is needed. We will have speech, OT and PT in the afternoons at 2:00 on Tuesday and Thursdays. When we are back at the McDonald house, Anthony is busy making up for lost time. He has been playing with all his toys and snuggling up with mom(I sure did miss that!)I have noticed that he does not like to stand for a long time. We need to build up strength in those muscles again. My least favorite time of the day is preparing his meds for the next day. This is a hour to 2 hour job for me(depending on interruptions from Anthony). Measuring out all those liquids is tough on the eyes. Even though I may complain about my new chores, I always smile while doing them because I know it is bringing us closer to going home! I feel very blessed to have made it this far. My Mom and I continue to count the days until Friday when Joe and Gianna arrive. I only pray it does not snow. It has been over 2 months since the 4 of us have been together. I'm sure Gianna will be the best medicine for Anthony.

Love, Gina

Friday, November 21, 2003 5:22 PM CST

Day T +36
WBC - 3.5

First, a huge thank you to Kay Rowe for putting pictures in the photo album! You made it look easy. Next, you are probably wondering why Anthony’s white blood count went down. Well, he is only receiving his growth factor on Monday, Wednesday, and Friday now and Dr. Grewal said he expected it to go down the way it did. He said it is nothing to be concerned about. Anthony’s CSA level did concern the doctor on Wednesday. Csa is what fights the graft verses host disease(GVHD). His CSA level was 92 on Wednesday and it should be between 200 and 400. They put Anthony on a stronger dose of CSA by IV. After taking his doses on Thursday, his CSA level is now 386. That’s very good. We are still giving him the increased dose by IV for the weekend. We will see what they say about that Monday. Everyone at clinic is very pleased with the way Anthony is progressing. He has been a very good patient.

Giving Anthony all of his meds is not overwhelming now. I have it organized for Gina and I don’t think she will have a problem with them either. This week has gone very fast for me. Once again I don’t want to leave Anthony, but I am excited to see Gina and Gianna. I am looking forward to next Friday when I will bring Gianna up for a visit with Anthony. That will be the best day here.

Isabella is having her best day today. She is going home!! I’m sure it feels good and scary at the same time, but I think Everett, Karen, and Isabella will do fine. We will still keep them in our thoughts and prayers and we hope to hear from them from time to time. I want to thank Karen and Sarah for bringing Isabella up to say goodbye to Anthony today. That was very nice. We are very happy for you!

If I do not update tomorrow, I hope all of you have a good Thanksgiving. I know we have plenty to be thankful for and it will be great to have our family together.

Joe

Wednesday, November 19, 2003 10:34 AM CST

Day T +34
WBC - 5.6

What a day for Anthony! His white blood count is 5600. That is the first time Anthony is in the range the doctors want him to be in. Also, his platelet count went from 32,000 to 68,000! Quite a jump. All this good news means that Anthony has the day off tomorrow!! We don’t have to go to clinic. Anthony is celebrating by jumping in his saucer and watching the Wiggles. Go figure. Dad’s going to celebrate by sleeping in tomorrow. We will be scheduling Anthony’s PT, OT and speech today. That will give us something to do. I’ll let you know how everything is going in a few days.

Joe

Monday, November 17, 2003 1:43 PM CST

Day T +32
WBC - 4.6

Anthony was discharged yesterday. That was good but also a little overwhelming. The shopping bag of medicine that came home with him was a bit intimidating. Now that I have drawn the meds myself I feel confident Gina and I can handle it. We just have to be organized. It is very nice to have him at the Ronald McDonald House. We are going to clinic every day now. The news at clinic today is that Anthony’s white blood count went from 4.9 to 4.6. That wasn’t the best news but Dr. Grewal said not to be concerned. We have increased his dose of cyclosporine and we will test his cyclosporine level on Wednesday and Friday. The cyclosporine is what helps the white blood cells grow and that level has been low. I will let you know what they say on Wednesday.

It is my understanding that Silvis Jr. High is having a McDonald’s day. The students get to order from McDonald’s and all the proceeds from that day will go to Ronald McDonald House. I think that’s a great thing to do. Thank you students and staff.

Joe

Saturday, November 15, 2003 8:58 PM CST

Day T +30
WBC - 3.6

Hi everyone. We are in good spirits tonight. Barring any fevers, Anthony will be discharged on Sunday!! We will see what tomorrow will bring. Once we get back to the Ronald McDonald House, Anthony will be going to clinic every day and he will be receiving physical and speech therapy three times a week. The rest of the time we will be chilling in Minneapolis. (Pun intended)

I hope we still hear from everyone on the web site. The messages still mean so much to us and it is nice to hear from all the people who care about Anthony. Having said that, once Anthony is discharged, we will not be doing an update every day. We will keep you posted on his progress. Ill let you know what happens tomorrow.

Joe

Thursday, November 13, 2003 5:00 PM CST

Day +28
WBC 1.8


Today was another great day for Anthony! Gina, Mom and
myself were all together when Anthony woke up this morning.
All he wanted to do was play with his 'Lego's' and watch
the 'Wiggles' videos he has in his room.
All of the nurses in 4A surprised my sister Gina, with a
hand-made birthday card and a song. Of course Anthony thought it was for him and seemed to truly enjoy it.
Those of you that thought I would somehow make a favorable
impression with all of the nurses because I am single, need
to understand that I am twice these young ladies age and am looked upon as a 'nice older man' and nothing more.
As of this writing, I have seemed to have misplaced the key
to my room at the 'Ronald McDonald' house where I am staying. I am going to be walking my sister back to the hospital soon and returning with my mother. If I am unable
to find my key soon, I will be sleeping outside with all of
the homeless people. What my mother will do is entirely up to her.
I plan on staying the night again in the hospital Saturday through Sunday. Things went pretty good when I spent Monday
and Tuesday nights with Anthony. Although I did not do actual diaper changes...I did assist in the clean-up as well as the preparation of new diapers as the nurses walked through the procedure with me.
It is time for me to get going and am looking forward to
returning home soon.
Dan Cimarrusti (Anthony's Uncle)

Wednesday, November 12, 2003 7:30 PM CST

Day +27
WBC 1.5

Hi. Today was a day full of surprises. We first found out that his white blood count was way up. The doctors feel that Anthony may beable to leave the hospital at the end of this week. We will keep our fingers crossed. A feeding tube was also put back in to Anthony's nose. This will help Anthony get the nutrients he will need when he leaves the hospital. The tube goes directly to his tummy. Because of the tube in his noses, Joe and I will not have to mess with the TPN(the training we went through). Anthony also went to have a x-ray done to make sure the tube was in properly. This was one of the first times he has gotten to leave his room. Anthony appeared to be very happy to be out and about. He didn't even seem to mind wearing his mask. We also found out that Anthony's enzyme level is 25%!! This is the enzyme that Anthony was born without. Hopefully that enzyme will stay around and make Anthony all better.

I wanted to take this time to thank all our family and friends that have been there for us. We would have never made it this far without all your help and prayers. Thank you so much to Aunt Debi, Aunt Darla, Aunt Joan, Uncle Dan and Grandma Joan for taking your vacations in Minnesota. You have all touched Anthony in such a special way. Thank you to Lindsay and Steve for not only giving us a very special basket of treats but for taking Willie for those very special walks. Anthony is very blessed to have you both as his Godparents. Thank you to Cousin Adam for taking care of my first born son, Willie. I know what a tough job this can be. A special thank you to Uncle Ron for all the driving to and from the airport AND Minneapolis. Thank you to Glenn our special CarePartner. Thank you to all my friends that have been very supportive through all of this. The calls and visits mean a lot. Thank you to all of you that check in on us daily. Your words of encouragement mean so much.

Hopefully tomorrow will bring more good news.
Love, Gina

Tuesday, November 11, 2003 4:51 PM CST

DAY +26
WBC .9

Hi! Anthony continues to do very well. Today, I went to class to learn how to change the dressing on his catheter and administer his TPN(Total parenteral nutrition). This is a method used to give Anthony total nutrient requirements directly into his bloodstream. Hopefully, all this means that Anthony will get to leave the hospital soon. I want to get him to the Ronald McDonald house by Thanksgiving so he and Gianna can see each other. Uncle Dan(my 46 year old bachelor brother) stayed with Anthony last night. He did a pretty good job. Whenever Anthony needed his diaper changed, he did a very good job at pushing the little red button to get a nurse. As usual, the nurses are very happy to help him. He is planning on staying with Anthony tonight again. I talked to the nurses about this and they just laughed and said they would be more than happy to babysit Dan again. Especially since Anthony really wasn't much work!

Love, Gina

PS. Sue, Rachel, Anne and Deb, Thank you so much for making the long trip up here to see us. It meant more to me than you will ever know! You all made my early birthday very special with the tropical lunch and the very cute picture.
I am so blessed to have such wonderful people in my life.
By the way, Rachel THREE is a crowd!!!

Monday, November 10, 2003 8:39 AM CST

Day +25
WBC .7

Hi! Anthony is doing really good! His White Blood Count continues to climb. Anthony managed to eat a whole jar of bananas this morning. I was so proud of him until he threw them up. At least he is getting a apppetite. Anthony has had a lot of company. Uncle Dan arrived yesterday. He changed his first diaper last night! He will be spending the night with Anthony tonight. I will let Dan tell you all about it tomorrow. The Silvis crew also arrrived yesterday.
(Rachel, Deb, Anne and Sue).
Love, Gina

This is Sue Davis from Silvis Jr. High, and Anthony looks super! It is so wonderful to see this little fellow smile and play. He is such a trooper. I did notice he watches his Mom very closely. He doesn't want her out of his sight. We will see him again today and do our best to make him happy and smile. Thank you dear God for being so good to Anthony and his family during this time.
Sue

Saturday, November 8, 2003 8:12 PM CST

Day T +23
WBC - .5

Anthony’s white blood count is 500!!!!!!! Yea!!!!!! We are very happy about that. We will see what tomorrow will bring. Anthony was very happy to see Mom and Grandma. I think he is going to have a fun week. There are two issues to resolve with Anthony. His blood pressure is still high. They are giving him blood pressure medicine to control it. The doctors are still very pleased with everything. The other issue is Anthony is not eating. He probably doesn’t like the fact that they send him the same thing every day. We have asked for more variety. I hope that helps. Otherwise his doing great. I am looking forward to seeing Gianna tomorrow. I’m sure she will make sure I am not bored at home. I now turn these duties over to my lovely wife. Bye.

Joe

Friday, November 7, 2003 5:17 PM CST

Day T +22
WBC - .4

Those single digit wind chills are very refreshing. Anthony is still hanging in there at 400 for his white blood count. The doctors are not concerned by it so I won’t be concerned. His blood pressure is getting back to normal and all his other vital signs are normal. The doctors told me today that they are very pleased with his progress. The only thing I have left to say is grow cells, grow!!!

I want to clarify something from yesterday. When I said Anthony could sit up by himself I meant to say that he can get into a sitting position from laying flat on his back. He thinks that is pretty cool. Especially when it’s time for lights out. We lay him down and he pops back up. How cute.

I went to class today to learn how to care for Anthony’s Hickman when we are at the Ronald McDonald House. It is a little overwhelming but I’m sure it will be second nature after a week. I’m looking forward to seeing Gina and Grandma tomorrow and so is Anthony. He has some new tricks to show them. I’ll talk at you tomorrow.

Joe

Thursday, November 6, 2003 8:30 PM CST

Day T +21
WBC - .4

Anthony’s blood pressure was high last night and today. He was very hyper last night until we figured out that they took him off his pain killer too fast. That’s what made his blood pressure high. They gave him more medicine to control the blood pressure and he was able to go to sleep about 2:00 am. His blood pressure was still a little high most of the day, but the doctors are not concerned about it. They can control it with meds and he should be back to normal in a few days.

Anthony’s white blood count is 400 for the fourth straight day. They are going to start giving him more oral meds since his WBC has stabilized at 400. They are expecting it to go up from there. I am looking forward to that. Anthony can now sit up by himself and is trying to pull himself up on the side of his crib. The physical therapist is very pleased with his progress and likes to work with Anthony because he tries so hard.

Once again it is time for Gina and I to switch places this weekend. I will miss Anthony because we have had fun learning so many things the last two weeks. However, I’m looking forward to seeing Gianna. I miss her a great deal.

Joe

Wednesday, November 5, 2003 3:19 PM CST

Day T +20
WBC - .4

Anthony’s white blood count is 400 again today. That’s the third day in a row and that’s good. I am looking for it to start rising. Anthony is eating more food today. The sooner we can get him eating regularly the sooner we can get him off the TPN. We do not want to take him back to the Ronald McDonald House while he is on the TPN. There are five criteria Anthony has to meet to be discharged from the hospital. 1) Steady and rising white blood count, 2) No fever or infections, 3) Taking oral meds, 4) Transfusions one time a day or less, 5) If GVHD is present, it is responding to therapy. Those are the five items we are now watching closely.

Anthony has learned to stack his cups to make a tower and he is showing off for the doctors and nurses. We are also trying to teach him some sign language which he thinks is pretty funny. He is also teasing and flirting with the nurses and aides. It is amazing that he can stay in that room day after day after day and not be fussy. He is as a very good patient.

Joe

Tuesday, November 4, 2003 8:11 PM CST

Day T +19
WBC - .4

Anthony is still doing well. We are weaning him off his pain killer. Since the pain killer is making him some what tired, he will now have more energy. He has been playing most of the day already. I wonder what he will be like with more energy. Anthony has learned to stack his cups and make a tower and he is doing very well in physical therapy. He actually will tolerate being on his hands and knees. He is also working on going from hands and knees to a sitting position. And he is working on sitting from his back. The therapist is very impressed with his progress.

Anthony’s white blood count is 400 again today. Grow cells, grow!!!!

Joe

Monday, November 3, 2003 6:08 PM CST

Day T +18
WBC - .4

Anthony was very happy today. I told him all about the Packer victory and he couldn’t stop smiling. He played most of the day. The only time he did not play was his two hour nap. He is eating more and more each day and his stomach is handling it better each meal. All of his vitals are normal and his white blood count is 400 today. I am very encouraged by Anthony’s progress. The DNA test will be done Thursday to determine engraftment. We will not get the results until next Tuesday or Wednesday. Apparently, those people don’t work on weekends. This is a short update because everything is the status quo, except for the snow today. Snow is nice when you don’t have to shovel it or drive in it. To my little brother; your Broncos could get on the winning track again tonight, maybe. Good luck.

Joe

Sunday, November 2, 2003 11:27 PM CST

Day T +17
WBC - .3

Another good day for Anthony. I’m sure all your prayers and messages are working. Thank you. Anthony’s white blood count was down today, but that is to be expected. His platelets are also too low, but they have not found a single donor to match Anthony yet. They will continue to search. Anthony also pulled out his feeding tube today. Since he is eating again, the doctors don't want to put it back in. I think that's a great idea. Anthony is having fun with Aunt Darla. I want to thank Lindsey and Steve and Jim and Ginny for the basket of goodies. That was very nice and it is appreciated. Candy is always welcome here. This experience has shown us who our true friends are. They are the people that do things for us because they want to, not because they owe us anything. Our heart felt thanks go out to all the people that have helped us with their prayers, their actions, and their messages to Anthony. We hope we can help you some day.

This update is late tonight because I was at the Metrodome watching my Green Bay Packers beat the mighty Vikings! I’m sure Anthony will be happy , too. I’ll talk at you tomorrow.

Joe

Saturday, November 1, 2003 5:24 PM CST

Day T +16
WBC - .4

Anthony had another good day. I never get tired of writing that. Once again, his vital signs were all within his normal range. His white blood count is 400 again. Anthony has all the energy he did yesterday. The good thing today is that Anthony has started to eat his food again and he is drinking water. Of course, that got his stomach and intestine working and we are having dirty diapers now. But that is good. It let’s us know that his system is working right. That also let them test for any bacteria in his gut and they did not find any. Yea!!!!

The only issue we had to deal with today was Anthony’s platelet count. It needs to be at 40 and it has not been above 25 for several days. They are going to switch Anthony to single donor platelets tonight to correct this. Here’s what that means. Normally, platelets are collected from many different donors to have enough for a transfusion. The single donor platelets come from one donor. When the donor donates, their blood is run through a machine that pulls the platelets out and returns the blood to the donor. That way they can collect enough platelets for the transfusion. The resident said this is very common and we should not be concerned by it.

Aunt Joan is on her way home now. We want to thank her very much for being here for two weeks, especially those two weeks. She was a big help and I know Anthony will miss her. Aunt Darla is here now and I know she’ll be great with Anthony too.

Joe

Friday, October 31, 2003 9:37 PM CST

Day T +15
WBC - .4

Anthony had a lot of energy today. He got up early, had a bath and put on his cow costume. Then he played and played and played until 1:00. He was laughing and clapping and flirting with the nurses again. He had the best time. Aunt Joan and I went to lunch at one, so we missed the reverse trick or treating. Anthony got more candy and a stuffed bear. Peter, our care partner who watched Anthony for us, said Anthony had a good time with the trick or treaters and then he took a nap. After his nap, he played some more and had physical therapy. He worked hard in PT and he took another nap. He was wound up for Aunt Joan when I left. He seems like the Anthony we knew before the side effects of chemo.

Anthony’s white blood count is 400 today and the doctor thinks his mouth is getting better. That would be really good news because if his mouth is getting better it would mean that his white blood cells are beginning to work! All of Anthony’s vital signs are within his normal range. Once again, it was a good day. We shall see what tomorrow will bring. This has been quite an education for us and we like to pass along the things we learn. Anthony’s blood type was A+ before his transplant. The cord blood he received was O+. We will not know what his blood type will be for several weeks. It could change three or four times during this process. Also his DNA will change. His DNA will be the same as the cord blood he received. That is how they will test for engraftment. If his DNA matches the DNA of the cord blood next Thursday, we will know he is engrafted. This whole process has been very interesting.

I am sure Gianna made a great Winnie the Pooh tonight. I wish I could have been there to see her. It sounds like she had a great time. I also understand the new Silvis cheerleaders were pretty hot. I’m sure Anthony would have liked to see that too. I hope there are lots of pictures. Happy Halloween everyone. I’ll talk at you tomorrow.

Joe

Thursday, October 30, 2003 4:23 PM CST

Day T +14
WBC - .3

Anthony is having a good day today. His white blood count is still at 300. We keep looking for that to drop again but it is holding steady. His skin is not as pink as it has been and he had lots of energy this morning. He woke up and played for and hour, then he had physical therapy and speech therapy. Anthony was very tired after all that and he slept for about four hours. Anthony also has not had a fever in over 72 hours. He has been taken off the morphine in favor of a pain killer that won’t make his nose and face itch. A week from today they will do a DNA test to see if the transplant is engrafted. That is our next big day.

The state troopers stopped by today with McGruff the crime dog. Anthony didn’t quite know what to make of McGruff. He’s not big on stuffed animals any way. The troopers gave Anthony a pumpkin with candy in it. Of course, Anthony said Aunt Joan and I can have as much candy as we want. He’s always been good about sharing. The Vikings are sending some more players to visit the week of November 9th. Anthony is doing very well. Thanks for your support.

Joe

Wednesday, October 29, 2003 8:36 PM CST

Day T +13
WBC - .3

I am very happy and very proud of Anthony today. He is doing so well and he has so much strength that I can hardly believe it. He lets the nurses know when he doesn’t like something. I think he has a great attitude which will help him get through this. Anthony’s blood pressure is back to normal, his white blood count is 300 again, and he has not had a fever in almost 72 hours. He also got up to play a little today. He did not get any lasex today because he had very wet diapers right on schedule. Keep those prayers coming because I know they are helping.

As happy as I am for Anthony, my heart aches that much for Max and his family. The doctors have told Mike and Margaret that there is nothing more they can do for Max. His graftversushostdesease is so bad they have never seen anything like it. They don’t expect him to make it much longer. Mike and Margaret are two of the kindest and most caring people we know. They have been there when anyone needs them and have been an inspiration to Gina and me. They have handled themselves with grace through this experience and they are and will be in our prayers.

Joe

Tuesday, October 28, 2003 3:58 PM CST

Day T +12
WBC - .3

Anthony has slept all day today. His morphine was increased to give him relief from his mouth sores and he basically feels crummy. Anthony does not want anyone to touch him: he just wants to be left alone. Consequently, he is not flirting with the nurses anymore. They all feel bad because they still have to take his vitals and do his mouth care which Anthony fights every inch of the way. His blood pressure has been low all day. They are not sure what is causing that, but they are not concerned about it.

Now for the good news. Anthony has not had a fever for 36 hours. That is a very good thing. His white blood count is back up to 300. We should still be seeing it go up and down over the next several days. Over all, Anthony is a real trooper and he is doing well. I’ll talk at you tomorrow.

Joe

Monday, October 27, 2003 8:25 PM CST

Day T +11
WBC - .2

Anthony has started to get some mouth sores. They do bother him until he gets more morphine. We are also using lidacaine in his mouth to numb his gums when we do his mouth care. Anthony has not had a fever all day. He was resting comfortably when I left the hospital. His creatin level from his kidneys was up, so they adjusted his antibiotics to get that level in line again. Anthony ‘s energy level is way down. He did his physical therapy in his bed today.

Everything that is happening to Anthony is expected. The doctors just look at him and say he is doing well. We will keep praying that it stays that way.

Joe

Sunday, October 26, 2003 5:14 PM CST

Day T +10 WBC - .3

Anthony broke his fever about 4:00 am Sunday. He has not had a fever all day today. He will be receiving his anti fungal medicine this evening so that may change. His nausea is under control. He is receiving lasex to make him go to the bathroom. Anthony looks a little bit bloated and that is from all the fluids he is receiving so they want to make him go to the bathroom to get rid of some of the fluids. Anthony had speech therapy and we played a little today, but he mostly slept. The good news today is that his white blood count is up to 300. That will still fluctuate, but he is on the right track. Time to head back for the night shift.

Joe

Saturday, October 25, 2003 9:27 PM CDT

Day T +9

Anthony’s CT was pretty good. They did not find any problems in his stomach. He has a few spots on his lungs that could be some fluid or pneumonia. He went on another antibiotic to fight whatever is in his lungs. Anthony is also taking a new anti fungal med that is causing him to have a very high fever. The fever is a normal side effect of the anti fungal and his body should adjust to it soon. Anthony looks miserable, but he does fall asleep with ice packs on his head and sides. We also give him another anti fungal orally. That one is to avoid yeast in his mouth and esophagus. He takes that one very easily with his mouth treatments.

I know Anthony isn’t feeling too good right now, but it is sure good to see him. He looks more like Charlie Brown than Minny Me. He also still has the strenghth to fight when he does not like what the nurses are doing. Good for him!

We also had the chance to talk with Isabella’s parents, Everett and Karen and Max’s parents, Mke and Margaret, tonight. It is theraputic to be able to talk to other families with Hurler children that are going through a transplant, too. They are very special people with very special children. We are pulling for Isabella to go home soon. We are also praying for Max to improve and continue improving.

Joe

Friday, October 24, 2003 9:10 PM CDT

Day +8

Anthony had a rough night and most of today wasn’t so good for him. He broke two fevers last night and today he seemed to have a constant fever. His temp got up to 103. They got his temp down and then they did a CT on his chest and abdomen. A bacteria was found in his blood and they are trying to track it down. Anthony is now receiving a different anti nausea medicine which is working very well. Anthony has not been sick today. Tonight he is sleeping comfortably. This update is a little short because Gina gave me the info over the phone. I’m going back to Minneapolis tomorrow and I can’t wait to see Anthony. It will be hard to leave Gianna because we have had a fun week.

Keep the prayers coming for Anthony and also fro Max. If you don’t know, Max is having more difficulties. Keep Mike, Margaret, and Grace in your thoughts , too.

Joe

Thursday, October 23, 2003 8:12 PM CDT

Day +7

Hi. Once again last night and today, Anthony had a tough time. It seems to be the same each time. He vomits, spikes a fever of 102 and them slowly becomes himself again. The doctors are giving him something new for his stomach. Anthony is not vomiting his food from his feeding tube in his nose that goes to his stomach. It is a green bile that is coming up. The doctors tell me it's normal and that Anthony is doing a great job. I guess I have no choice but to believe and trust them. In fourteen more days we should be hearing about his white blood count and if the transplant is working. Anthony continues to entertain the nurses. He has been learning how to blow kisses at them. What a Italian stud!!

Love, Gina

PS To my great Silvis buddies- Have a great time at the wedding! I wish I could have gone. Have a drink or two for me. I expect details on Monday.


Lexy, Thanks for checking in on Anthony. Gianna and I are going to come over for a visit next week!

Wednesday, October 22, 2003 9:01 PM CDT

Day +6

Hi. Anthony had a much better day today. No fever. The Doctor said the bacteria in his gut may not be getting any worse. We still need to wait and see. We are still waiting for them to identify what type of bacteria it is. Anthony did vomit twice today. The nurses informed us we are lucky. Some kids do this all day. Anthony continues to play with his toys and read his books. The nurses are now starting to sing the "Wiggles" songs on their time off. I admit it Anthony is a "Wiggles" junky! I want thank all of you for checking in with us. Your notes really do get us through the day. Please keep all the Hurler families in your prayers.

Joe, Happy 10th Anniversary!! And they said it wouldn't last! We sure proved them wrong! Maybe next year we will go somewhere more romantic than Minneapolis!Love you!!

Happy Birthday Mom!! How old are you??

Gina

Tuesday, October 21, 2003 4:40 PM CDT

Day +5


Hi. Anthony had a really tough night and day. Last night, he spiked a fever of 102. It was a rough evening on Aunt Joan. Today we saw more of the same, 102 fever, body shakes, vomiting and strained breathing. It really scares you when this all happens. Anthony just layed in my arms wimpering. I wanted to take him home so bad at that moment. I have to keep telling myself that this is going to make him better. I knew this was going to be hard, I just had no idea how hard it would hurt my heart. The doctors also found a bacteria growing in his gut. They are treating it with 3 different antibiotics. Hopefully, they will wipe it out of his system soon. They did give some morphene for the pain he was having today. I was told by one of the nurses that Anthony will have good and bad days for awhile. I just keep telling myself that this is one day I can put behind us.
Love, Gina

Monday, October 20, 2003 8:53 PM CDT

Day +4


Hi. Yesterday was a very eventful day. Last night, Anthony's favorite nurses aid, Sarah, came into his room with the clippers. She began by cutting all his hair and then shaving his head. Anthony cried the entire time. It was pretty rough on him. I knew all along we would have to do this, but when it actually happens, it really bothers you. For the first time, Anthony looks like he is sick to me. I have been calling him my "Golden Child". He looks like the little boy from Eddie Murphy's movie. Today, Anthony's platelet count was down. He was given a platelet transfusion. Doctor Baker said this is common for kids after a transplant. The doctor's tell me he is still doing good. But they keep warning me it will be getting harder. Days +7 thru +14 are suppost to be really tough. Anthony had his daily visits from Speech and PT. PT is working on Anthony standing up from a seated position. He appeared to be catching on. Speech continues to work on simple sigh language with him. Hopefully, this will help him express his wants and needs better. Since I have been here, I have been unlucky enough to catch a cold. My voice is almost gone, and I have just begun to cough. Not a good situation with me being around Anthony. I will have to wear a mask when I am in the room with Anthony. Hopefully, this will pass soon.
Love, Gina

Sunday, October 19, 2003 4:02 PM CDT

Hi. It was so great to see Anthony last night. After spending a week with his sister, it is nice to be able to spend some time with Anthony. Anthony continues to do well. He seems a bit crabby today. Not his usually sweetness. Anthony continues to get sick each morning. The doctors say it can still be from the chemo. Hopefully, it will get better soon. We have also noticed some swelling of Anthony's gums. Once again, doctors said this is normal too. The major event of the day was when Anthony pulled on his hair and a handful of it fell out. Looks like a buzz cut is in his near future. I want to thank Aunt Debi and Uncle Ron for letting Gianna spend the night at their house. It sounds like she had a wonderful time at the cook-out.

Love,
Gina

Saturday, October 18, 2003 10:04 PM CDT

Day T +2

Anthony was very excited to see his Mom and Aunt Joan today. He didn’t want to go to sleep. He was still playing when we left his room at 9:30 tonight. It’s going to be hard to say good bye tomorrow but I know he is in good hands.

Anthony had some nausea this morning, again. The doctors say it is the formula they are giving him and they are giving Anthony something to help break down the formula in his stomach. Otherwise, Anthony had a rather uneventful day watching the Wiggles, football, and flirting with the nurses. Thanks again for keeping Anthony in your thoughts and prayers. That’s what he needs the most of now. I’ll talk at you in a week.

Joe

Friday, October 17, 2003 5:27 PM CDT

Day T +1

Anthony had a good day today. He started with a little nausea, but they determined that they increased the formula in his feeding tube too soon. Once they went back one level, Anthony was fine. He was watching the Wiggles when I left this afternoon. I sure am glad Mom bought new Wiggles tapes. Anthony still wants to stand up in his bed and walk around. He also still enjoys throwing his toys on the floor. If that will get him to laugh, it’s all right with me. It is very nice to see less tubes hooked up to his Hickman. There is not much to report today and that is a good thing. We won’t start looking for white blood cells for at least a week and it could be two weeks or more before any show up. So we will just wait and see.

I don’t really want to leave Anthony up here even though I know he will be in good hands with his Mom and Aunt Joan up here. However, I am looking forward to spending a week with Gianna. I miss her. I understand she is walking independently. I will do one more update tomorrow before I turn it over to Gina.

Joe

Thursday, October 16, 2003 9:30 PM CDT

Day T 0

Anthony got a do over today, a second birthday! His transplant started at 1:55 pm and was finished at 2:15 pm. Our battle cry is grow cells grow. We want all of Anthony’s old cells to get out of the way and let the new one’s take over and make him better. The transplant was quite simple. The stem cells come in a plastic bag just like blood. They hook up a line from the bag to his Hickman and let the cells flow into Anthony. He handled it like a champ. He didn’t have any of the side effects we were expecting. When I left tonight he was standing in his bed laughing, talking, and clapping like nothing was different. He’s a great kid!

Now we really have to take things one day at a time. The doctors told me that the next ten days will be the worst and we will deal with any complications as they come up. It’s all up to Anthony now. I’m going to try and put some pictures in the photo gallery from today. Please forgive me if i am not successful. I’ll talk at you tomorrow.

Joe

Wednesday, October 15, 2003 3:03 PM CDT

Day T -1

Anthony is feeling some of the side effects of the ATG. He got a fever during the night and he got hives. They are giving him Tylenol and Benedryl which are making him comfortable. He also got his feeding tube this morning. He was not very happy with that. He’s also very tired and fortunately he is sleeping a lot. The doctors told me that the honeymoon is over. From now until day +10 will be his worst days. So, please keep those prayers coming.

Tomorrow is transplant day!!! He will be receiving his cord blood at 1:00 pm. I’ll let you know how it goes.

Joe

Tuesday, October 14, 2003 7:59 PM CDT

Day T -2

Anthony had a good day today. I know he is tired. He slept through the night ; he didn’t even wake up for the nurses to check his vitals and change his diaper. Anthony is not eating much, so they are going to put a tube in his nose to his stomach to feed him. This was option number 2 and I like it much better than option 1. Option 1 is what they call TPN and it goes into his Hickman and through his blood. This would leave his stomach empty. I did not like that idea. With the tube in his nose he will have food in his stomach and that might help prevent some stomach irritation. I’m sure Anthony won’t like the tube up his nose and I hope he doesn’t pull it out too often.

Anthony is also half way done with his ATG regimen. He gets one more dose tonight and two more doses tomorrow. He has not had any side effects related to ATG. We are keeping our fingers crossed that he doesn’t. He is also done with chemo. Yea!!! His white blood count is virtually zero, which is what it should be.

Anthony did get to meet a couple of Viking players. I wasn’t there because they came early and I was at the Ronald McDonald House taking a shower. Anthony had a good time while they were there. Anthony got an autographed hat and banner. They were also nice enough to sign Anthony’s football. I don’t know who these guys are, but it was nice of them to take the time to visit all the kids on the floor. I talk at you all tomorrow.

Joe

Monday, October 13, 2003 3:56 PM CDT

Day T -3

Anthony is having a decent day. He is sleeping more because of the drugs and he did get sick once. He has not had diarrhea which is a bit surprising. Anthony’s blood pressure was too high over night so they gave him another medicine to lower his blood pressure. Dr. Ramsay told me he could be on that medication for even after he goes home. As I said yesterday, They are giving Anthony ATG today, tomorrow and Wednesday. We have to look for high fever, chills, hives, and shortness of breath which are some of the possible side effects. He receives the ATG over four hours through his Hickman. I was there for the first two hours today and he was sleeping comfortably when I left.

Anthony had physical therapy and speech therapy today. Anthony was able to pull himself up from a sitting position and bend over and pick up blocks on the floor. That was a good workout for him today. Anthony is still charming the nurses and all the women that work with him. I really think he is going to miss them when he is discharged.

Gina and I would like to thank the Moline School District Secretaries for donating to Anthony’s fund. That was very nice and we do appreciate it. I also want to thank everyone for reading the web sight and leaving your messages. I always feel better when I read the messages in the guest book and see that there are many wonderful people that care about Anthony. Thanks again.

Joe

Sunday, October 12, 2003 9:02 PM CDT

Day T -4

Anthony continues to be in good spirits. He has lost some of his appetite and he is a little bit fatigued today. Anthony’s urine output was down last night so they gave him mesnex and he hasn’t had a problem since. Anthony loves to throw his toys on the floor and laugh at us as we pick them up. I’m glad he’s having fun.

Tomorrow Anthony will begin receiving ATG which will suppress his immune system and hopefully help prevent graft-versus-host-desease(GVHD). He will also begin receiving CSA and methylpred. The CSA is to prevent rejection and GVHD. The methylpred is to help engraftment and prevent GVHD. We should start to see some mood swings and increased appetite. I think it is going to start to get interesting.

Joe

Saturday, October 11, 2003 1:57 PM CDT

Hi. I just wanted to remind everyone that they will doing some work on the caringbridge site. You may not hear from Joe and I for a few days!! We will update as soon as possible!

Love, Gina

Friday, October 10, 2003 4:47 PM CDT

Day T-6 to transplant



Hi. Anthony has finished his first type of chemo(Busulfan). He will be starting his next type tomorrow(Cytoxan). He will get that for 4 days. So far no side effects. Once again he slept the whole night for Auntie Debi. I will be spending tonight with him. Hopefully, he will be as kind to me! Anthony continues to be in a good mood. I'm sure he will be very happy to see Daddy, Grandma, and Uncle Dan tomorrow. I think he is getting tired of looking at his Mommy and Aunt Debi!! Today his Speech Therapist came to work with him. He should receive speech at least 3 days a week. I already think he has made progress this week. I'm sure when they cleaned out all the stuff in his ears he was amazed at all he could hear. Please keep Anthony's Hurler friend Max in your prayers. He has been having some problems with his breathing. His parents have been so wonderful to us since we have arrived here. They have so much on their minds, yet they have time to think of Anthony. Max's web page is www.Mighty-Max.com. Have a wonderful weekend. I am looking forward to seeing many of you this upcoming week. Joe and Grandma Joan will be holding down the fort here for the following week.
Love, Gina

Thursday, October 9, 2003 9:47 PM CDT

Day T -7

Hi.
We were told today by the doctor that "We are in the Honeymoon stage". Quite honestly, My honeymoon was a heck of a lot more fun. Anthony continues to do great. He is smiling, talking, and walking around his crib. You would never guess that he is getting some really powerful stuff pumped into his little body each day. Right now I think this is harder on his Aunt Debi and I. Last night, Anthony stayed up until 1:30. He finally fell asleep for about 4 hours. I don't know how he's doing it. He hardly takes a nap all day. I only wish I had his energy right now!
The big news today at the BMT unit was that my favorite football team is sending some of it's players to visit on Tuesday. The Vikings are coming for a visit. Anyone that really know us, know I am kidding about them being my favorite team! We are planning on putting Anthony in his Packer PJ's. I'm still sure Dad, Anthony and Grandma will enjoy giving the players a hard time!
Thanks again for checking in on Anthony.

Gina


PS I heard Joe's been seen out and about dining at Village Inn with a really hot Babe!

Wednesday, October 8, 2003 4:51 PM CDT

Day T -8

Hi.
Today was another day of chemo for Anthony. He is stll in good spirits. Anthony did get a good night sleep last night. He appears to be getting use to the nurses coming in and out of his room at different times. Anthony had his first session with his Physical Therapist today. He enjoyed playing on the big mat she brought into the room. She was pleased about the many things Anthony can already do, but of course she has many things she is looking forward to working with him on. She will be working with Anthony 3 to 5 days a week. I found out today that Gianna will not get to see Anthony this weekend. She had her 1 years shots a week ago and the doctors do not feel it would be in Anthony's best interests to be exposed to her. Hopefully, we will get her up here another time soon.

Gina

Tuesday, October 7, 2003 9:05 PM CDT

Day T-9


Hi. Let me start by saying that my son really does love the ladies! And the ladies really do love him! Anthony spent most of his day flirting with the nurses. I'm sure this is why he didn't go to sleep at all on Monday night. He was too afraid he would miss someone.
Anthony began his chemo this morning at 4:00am. He got three treatments today. This will continue for the next 8 days. We might start seeing some side-effects in a few days. Right now, Anthony is very happy and content as long as I keep playing his "Wiggle's" tapes.
I want to thank everyone again for your messages of encouragement. We have so much hope right now. Anthony is a tough little boy with so many people praying for him.
Thank you!
Gina

Monday, October 6, 2003 6:40 PM CDT

Day T -10

Anthony was at the hospital at 7:15 this morning and they finally started with him at 10:30. Gina called me at six tonight and asked me to do the update. Anthony got to his room about 5:00 tonight. Gina and her sister are very tired and Anthony is not a happy camper. Anthony had a lumbar puncture and his spinal fluid is clear. His broncoscopy showed no infections. They tested his auditory nerve and determined that he will have mild to moderate hearing loss. He will need hearing aids. They put tubes in his ears, gave him a catheter and did an MRI. As you can see he had an exhausting day. Gina will be spending the night with him. I miss Anthony alot, but I am glad to be home with Gianna.

Chemo starts tomorrow. Please keep your prayers coming. I know that is helping Anthony. Your support means a great deal to us and helps us through each day. Thank you one and all.

Joe

Friday, October 3, 2003 6:50 PM CDT

Hi! Good news, we have heard from the insurance company and we are back in business. Everything is a "go" for Monday. Joe will be leaving on Sunday, so he will miss the big day. He is really bummed about this. He really wanted to be there for Anthony on the big day. But Gianna also needs her Daddy with her at home. My sister Debi is coming up this weekend. She will be staying the week with me. Hopefully, she is well rested and ready.
Today we took Anthony on a big adventure. We went to the Underwater Park at the Mall of America. He got to see real turtles and sharks. He seemed to really like the turtles.He also ate at the RainForest Cafe. He really seemed to take everything in around him. We were hoping to make his last day of "freedom" extra special. The only way I think he would have enjoyed it more, is if his sister was with him.
We would like to send a very special "thank you" to Anthony's new friend Gail. What a wonderful surprise to come back to the room to find a special gift for Anthony. He loves the books and has already received special kisses from his new puppy pal. You really warmed our hearts!!!

Gina

P.S. To my friends at Silvis, my orange and blue shoes are at home where they belong. I don't think Minneapolis is ready for such a fashion statement!!!

Wednesday, October 1, 2003 10:26 AM CDT

Hi Everyone,
What a day this has already been. We were all at the hospital at 6:00am this morning. I will have to say it was a very chilly walk! I think it was actually 30degrees out. Of course we have not brought up our winter wear. Anyway, when we go to register, they tell us that they do not have us scheduled for surgery today! What!! We sat for an hour and waited to find out what happened. Anthony was not a happy baby. He was very hungry since we weren't allowed to feed him. The nurse finally came and told us that we had been rescheduled for Monday. She had no idea why. When we got back to the room and made some calls, we found out that our insurance was holding us up. They wanted all test results in before they would allow amy procedures to begin. So here we sit for another 5days. We thought about going home until Sunday, but are unable to do that. Gianna had her mumps and chicken pox shots on Tuesday. Anthony can not be near her for awhile. Joe and I are both very disappointed and down. You get yourself all psyched up for this and then you get delayed. I have been told this is the first of many delays! I want to thank each of you who have signed the guest book. Keep sending the messages, it helps to know we are not alone in this. We also love reading your letters of inspiration.
Gina

Tuesday, September 30, 2003 8:36 PM CDT

Hi everyone,

We met with Dr. Ramsey this morning. She had good news about Anthony. He does not have RSV and he is very healthy. Being in such good shape gives him an advantage going into the transplant. She then discussed all the side effects and problems he could face. He most likely will not face all the side effects and he will not go through this without some side effects. It is impossible to predict. We just have to take it one day at a time and handle any complications as they come. Our goal is to have Anthony out of the hospital by Thanksgiving. We are hoping and praying that we will reach that goal. Your prayers will help.

After meeting with Dr. Ramsey, we spent the rest of the day spoiling Anthony. Now it’s to bed early. We have to be at the hospital at 6:00 am tomorrow. Anthony will receive anesthesia and then have an MRI, have his auditory nerve tested, tubes put in his ears, a spinal tap, a broncoscopy, and his Hickman put in. He will be under anesthesia about three to four hours. Then he will go to his room and start receiving a drug to prevent seizures. Tomorrow will be Day T -10 and we will count backwards to transplant day.

Some good news from home about Gianna. She went to her doctor and he said she is responding well to her medicine and is getting better. She should be able to come up here to see Anthony in a couple of weeks. We’ll let you know how it goes tomorrow.

Joe and Gina

Monday, September 29, 2003 9:05 PM CDT

Hi everyone,

We don’t think Anthony was exposed to RSV. They took a sample at the clinic today and we did not hear from them, so we’re sure he is ok. After we went to the clinic, we relaxed at the Mall of America. Tonight we are watching the Packers beat the Bears. Anthony is happy.

We have a heads up for all of our web site visitors. On October 11 Caringbridge is changing servers. This means that the site will be inaccessible from 3:00 to 6:00 pm. It also means that we will not be able to update the web site for up to three days. We will remind you again before then.

There is not much to report today. Tomorrow we meet with Dr. Ramsey and she will tell us how they assessed Anthony last week. We will let you know what she says then.

Joe and Gina

Sunday, September 28, 2003 9:08 PM CDT

Hi everyone,

I’m back a day early. Gina finally made up here late last night. She had a big complication at home. She had to take Gianna to the emergency room Saturday morning. Gianna has a form of RSV, which is an upper respiratory condition and very contagious. Needless to say, Gianna can not be near Anthony right now. She had to stay home with Grandma. We have to call the doctor tomorrow and tell them that Anthony might have been exposed to whatever Gianna has. Hopefully this won’t delay everything for Anthony.

Anthony was very surprised to see Gina. He gave her a big smile and a hug when he saw her. I think he’s glad she is here. Today we went for a walk and did some grocery shopping at Super Target.

We want to thank everyone for your prayers and support and your messages on the web sight. They give us strength and help us get through every day. We also want to thank Silvis Junior High for organizing a very successful dance to help Anthony. We will let you know if there are any complications with Anthony.

Joe and Gina

Friday, September 26, 2003 3:26 PM CDT

Hi everyone,

Today was a good day for Anthony. He got to participate in a study that will hopefully determine speech and language patterns in the brains of Hurler kids. He got to wear a cap just like the ones that NASA uses to study the brain activity of the astronauts. There were sensors in the cap and one sensor under his right eye and one above his right eye to count his blinks. All he had to do was listen to some sounds made by the computer. He was very calm and good-natured throughout the test.

Anthony also saw the cardiologist, Dr. Tsirka-Grewal, and she said that his heart is almost perfect. They found a minor build up around one valve that she said they wouldn’t of found if they weren’t examining the heart of a Hurler patient. She considers Anthony to be a perfect candidate for transplant as far as she is concerned.

Now it’s time to kick back and relax. We are excited about seeing Mom and Gianna and Grandma tomorrow. We have missed them this week. I probably won’t be updating over the weekend because I won’t have any news. We are going to spend our time moving to a bigger room and enjoy time as a family. I’ll talk at you next week.

Joe

Thursday, September 25, 2003 5:25 PM CDT

Hi everyone,

Today was an uneventful day. Anthony and I learned about his Hickman. It will be inserted in his chest and run up his neck into his jugular vein. It will be positioned just above the valve to Anthony’s heart... The Hickman has two lines in it because some of the drugs they will give Anthony do not interact very well. Anthony will have his Hickman until the doctors say he doesn’t need it any more. The Hickman will come through a small hole in the skin and will have to be checked for infection every day and the dressing will have to be changed every day. It will be under Anthony’s clothes, but the nurses will put a cotton mesh around his chest so he can’t pull on the Hickman.

Inserting the Hickman will be the last thing they will do October 1. Before that, they will give him an anesthesia, check his auditory nerves, put tubes in his ears, check his lungs for infection with a broncoscopy, and do an MRI on his head. After that he will stay in the hospital.

I also met with the social worker today. She wanted to touch base and make sure we knew that she was there to help when we needed her.

Tomorrow, Anthony is participating in a study to try and find out how Hurler affects the speech and language areas of the brain. Then we have an appointment with the cardiologist. That’s the last appointment until we meet with Dr. Ramsey on Tuesday to go over all the test results We are going to go out to dinner tonight. I’ll let you know how it goes tomorrow.

Joe

Wednesday, September 24, 2003 5:17 PM CDT

Hi everyone,

Today was a long day for Anthony. We spent most of the day waiting for the doctors. Anthony is taking a well deserved nap right now. The day was full of good news. Anthony’s eyes are in good shape. He has a mild clouding of the corneas but no other damage to the eyes. Dr. Bothun, the eye doctor, said he will probably not need glasses. Anthony is far sighted, which is good at his age. Anthony’s lungs are also clear and in good shape. We are praying that the congestion in his head does not go to his lungs. That could delay the start of chemo.

From everything we have learned this week, it looks like Anthony is a good candidate for the transplant. His good condition should help him through the tough times ahead. Tomorrow Anthony will be examined to determine if they will have any problems putting in his central line. The central line is called a Hickman. The Hickman is placed directly into the aorta with a port in his chest. They will be able to draw blood from the Hickman without sticking Anthony in the arm. He will be very happy about that. They will also administer the chemo and the stem cell transplant through the Hickman.

I also meet with the social worker tomorrow. Now you know why Gina wanted me to be here the first week.

I’m convinced your prayers are working. Please keep them coming.

Joe

Tuesday, September 23, 2003 4:50 PM CDT

Hi everyone,

We’re all done for another day and Anthony is glad. He is already tired of being poked and prodded. They drew blood again today and they said they have to take some more tomorrow. Dr. Ramsey did a physical on Anthony. She said Anthony is in good shape. All the numbers from his blood tests are in the right range. Dr. Ramsey will meet with Gina and me early next week to go over all the tests that they are running this week. If nothing unexpected comes up between now and then, Anthony will be admitted to the hospital on Wednesday, October 1. That will be the day they put in his central line, do an MRI on his head, and put tubes in his ears.

We also saw the psychologist today. Anthony’s score was 99 which is average for his age. The area of concern to the psychologist is his speech and language development. His score was low, but about average for Hurler kids. Anthony will be receiving speech and language therapy in the hospital as well as physical therapy.

Anthony also had an echocardiogram this afternoon. Tomorrow Anthony will see the pulmonary doctor and the eye doctor. Except for giving blood it should be an easy day for him. It is good to hear from you guys in the journal. Thanks for thinking of us.

Joe

Monday, September 22, 2003 3:52 PM CDT

Hi, everyone. We have finished our first day of work up. Anthony had his blood drawn first thing this morning. They could only take half of what they needed because of Anthony's size. They will draw the rest of the blood Tuesday. Anthony also had an EKG, which went well, and a chest x-ray, which he did not like. They had to restrain his arms above his head for the x-ray and he was not very happy. And of course a student was doing the x-ray so it took twice as long as it was supposed to. The doctor was not happy with the student. Anthony also got to see Dr. Charnas today. He is the neurosurgeon and he is a very nice guy. As far as Dr. Charnas is concerned, Anthony is ready for his transplant. He also feels that Anthony has made good progress developmentally.

Tomorrow we meet with Dr. Ramsey for a physical. Dr. Ramsey is in charge of the BMT program at Fairview. We then go for neuropsych testing and Anthony will get an echocardiogram in the afternoon.

I'm sorry I did not update until now, but there wasn't much to tell. I understand that some of you would like to know our new address. It is c/o Ronald McDonald House, 621 Oak Street SE, Minneapolis, MN 55414, Room 131. Thanks for all your prayers. Keep them coming.

Joe

Sunday, September 14, 2003 9:35 PM CDT

Anthony will be going to Minneapolis on Sunday, September 22 to begin his difficult journey.

Friday, September 5, 2003 4:27 PM CDT

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