Tuesday, July 6, 2004 11:52 AM CDT

I just wanted to thank everyone who sent a note, card or called this weekend. We went to the cabin and had some nice, quiet family time.

It is difficult for us to "celebrate" the 4th of July anymore. You know, it is kind of ironic that Matt died so close to the 4th. He HATED fireworks. As a little boy, I had to hold him inside until they were over, his hands over his ears. As he got older, he still was not fond of them. The night before he died, we were in ICU with him, and I said to David, he won't die tonight - it is the 4th of July. He would never want to be remembered on that day!!!

I thought that this second anniversary might be different than last year's but I had no idea it would be much worse. Last year, we were still numb and were consumed with our plans to travel to Mexico. This year, even though we went to the cabin, I could not help but be consumed by grief- Overwhelming, gut-wrenching, paralyzing grief. I guess it is true what they say - the second year is indeed the hardest (but it is only the second year - so who knows?)

I spent yesterday (July 5) at the cemetary. I stayed for a long time. I cried more than I have cried in the last two years. I was mostly alone in the cemetary but I happened to catch something out of the corner of my eye. It was two baby fawns, just laying in the grass by the headstones about 10 feet from me. They didn't move - they just stared at me - I guess they were wondering who this sobbing woman was. I had been praying to God to give me some kind of sign that Matt was ok. Then I saw these deer. For some reason, I felt comfort looking at them. They never moved and even when I stood, they still sat there. I cannot make any connection here, but just wanted to share how peaceful I felt when I saw them.

I miss Matt more than ever. I am so grateful that some of you still remember him and that his memory will live on.

Monday, June 28, 2004 6:21 AM CDT

It has been a month since I last updated. There is not much to say other than things have been really hard for me the last month. Graduations, parties, ceremonies, etc. They are so difficult to attend. If you invited us to a graduation party and didn't see us, I hope you will forgive us. It is still too hard for me to attend those kind of functions. I have been feeling like an "alien" again in this world. As Matt's two-year anniversary approaches, I feel myself getting further and further away from people. I am not sure why this is. Perhaps I need to isolate to protect myself. All I know is that it has been a difficult and lonely time.

We will go to our cabin for the anniversary. It will always fall on the fourth of July holiday and that will always be difficult. Who feels like celebrating? But we are taking a friend for each child and hopefully, the weekend will be bearable. I seem to be so much better up there. That is the best we can hope for, I guess. I need to realize that it is just another day. They are all the same - July 5 is no different. But it is really hard to remember those painful times in the ICU. They continue to haunt me.

I have done some positive things, though, in the last few weeks. I participated once again in our church's VBS. After a two-year hiatus, I went back to leading crafts. I am always blessed by those kids - all 375 of them! It was especially difficult, though, when the buddies that Matt knew from preschool days came through with little kids hanging all over them. I couldn't help but imagine Matt there and how happy he would have been - he loved little kids.

I got involved in the battle for Children's Hospital recently. I wrote letters to the editors of several newspapers and they were published. I feel very passionate that Children's needs to provide good, quality care for the children AND the families and it seems that is in jeapordy with the proposed redesign of the new hospital. That was enough to get me motivated.

The kids seem to be doing good. Megan just completed a violin camp and is life-guarding this summer, Alex has been doing all kinds of one-week camps and Anna is excited about starting summer camp at St. Paul's. Please keep us in your prayers. Every day feels like a roller coaster ride as it speeds down the hill to me. That feeling in your stomach - that is the feeling I have. Just trying to get through each day without Matt. I miss him.

I will be in hibernation from July 5 (the anniversary)- July 14 (Matt's birthday). If you have any words of encouragement, I would appreciate them.

Noelle

Sunday, May 30, 2004 4:52 PM CDT

This day never held much meaning for me but I know that today I will join with thousands of bereaved moms around the United States who are remembering their sons. I can say that I know how they feel. I just read the journal entry from this time in 2002. Matt was doing well - he was working towards coming home. He worked so hard in physical therapy to get strong, he walked laps around the unit trying to get his legs moving after being in bed so long. I pushed him to do just one more. He begged to stop, but I thought that I was helping him prepare for his homecoming...

He never had a homecoming here on earth. But I would like to believe that he had one heck of a party when he entered Heaven's gates. Surely, he deserved it. No one deserved more than him. He was a special kid.

I survived the Honors Percussion concert this week. I say that because Alex performed and it was hard not to see Matt standing there. Alex was so proud to follow in his brother's footsteps. Seeing all of Matt's friends play and knowing that Matt should have been standing (or should I say "jumping around") next to them was hard for me. But we got through it.

We awarded the Matt Conover Memorial Scholarship this week, as well. Two very deserving young ladies won it. We decided to give two because it was so hard to choose! Caitie Murray and Alyssa Cox were the recipients. We wish them success in their college careers.

A close friend sent me this today and I will close with it. It sums up how I have been feeling lately. Although I have some very close friends who allow me to speak about Matt, I feel that many people don't really think I want to talk about him. This says it all.

Happy Memorial Day to everyone. Please, take a minute and remember someone who has passed away and remember their families in your prayers as well.

Noelle

Thursday, May 6, 2004 9:46 AM CDT

It is going to be another Mother's Day soon. everyone is right when they say the second year is the hardest. I am having a really hard time this week. Mostly because we were really fighting the battle at this same time two years ago. Maybe because my last Mother's Day with Matt was the most special day of my life, with the exception of the births of each of my children. I am fighting back tears almost every minute of each day this week. I want to celebrate Mother's Day with my remaining children on Sunday but the day holds so many painful emotions for me.

A friend sent me this this morning, and I was searching for something special to put on the website for Mother's Day. Leave it to Erma Bombeck to come up with this. She was a special lady.

Happy Mother's Day to all of you. All I want for Mother's Day is something I can't have. However, I am going to make every effort to thank God for my remaining children. They are my bright beacons of hope in this bleak world. And one more thing...if you do stop by to visit, please sign the guestbook...I could really use the lift this week,

Blessings,

Noelle

Sunday, April 11, 2004 5:24 PM CDT

HAPPY EASTER - 2004

We just returned from the cabin. It was a peaceful (except for sibling squabbles) weekend surrounded by great scenery and good memories. Easter has so much more meaning now for me. I really identify with the feelings of Mary. What she thought as she saw her son crucified on the cross. I understand how she agonized as she watched her son fight against the demons. The pain she felt when she realized that he would die.

Matt's cancer was his cross. He fought a brave battle against a demon only to lose his battle here on earth. But the fact is that Matt won his battle and is now in Heaven! He really is dancing pain and cancer-free. And I know that there is really a God and that his son, Jesus died for me. And I know I will be reunited with Matt someday.

I miss Matt. I miss his smile and his excitement. His last Easter was in 2002 and he had come home a week earlier from a really rough chemo treatment to get him into remission so he could have the Bone Marrow Transplant. He always was so excited about holidays. David always makes clues for the kids to find their baskets. Matt raced around the house, helping little Anna (2 yrs.) to find her basket. He was more excited than she! He felt ok that day although he said, "Mom, don';t give me too much candy...you know I can't eat it all!" How those words come back to me. He didn't want me to waste money on something he wouldn't be eating. What a kid.

We did Easter baskets. We were together as a family in our secluded family place and we worshipped God together. I am grateful that I have the Hope of our risen Savior. I am looking to that day, when Matt comes, "bouncing", up to me and says, "Mom, you should see it here. It is wonderful! I have been waiting for you to join me...!"

I love you Matt Conover. I miss you and I wil never, ever forget your sweet, sweet heart. Happy Easter, pumpkin boy!


Mom

Saturday, March 13, 2004 8:33 AM CST

It has been awhile since I updated. It has been so busy here with all the scarf business. I know that many people who are visiting this site are coming as a result of the newspaper article on "Wrapped In Love." I am happy you came to visit. Please sign our guestbook, so we know you were here.

The Pittsburgh Post-Gazette article about Matt and Wrapped In Love was beautiful. Laura Pace did a great job and as a result, I have many folks who are volunteering to knit. That is so wonderful. We can use the help. I am expecially please with the article because I hope that it will help just one bereaved parent. If just one sees that they can carry on the memory of their loved one with a project, then my purpose will be complete. I want everyone to know that, while the pain NEVER goes away, you can continue on and even be "happy" sometimes. I think that Matt looks down from Heaven and is happy because our family is "healing." I think he is happy that I can tell everyone about him and carry on his legacy - one of love.

I am not sure what is in store next for our family. We have done so much - our mission trip to Mexico, the scholarship fund, the new pediatric cancer research fund, the scarves...I do know that it will be something that helps other people. That is where we seem to gravitate and that is what makes us feel better.

All that we have done is because of a very special boy named Matthew. His smile, his laugh and his pure heart will live on in everything we do. I am honored to be his mom.

Thanks for visiting this site.

- Noelle

Wednesday, February 18, 2004 9:44 AM CST

Scarves and knitting have taken over life at the Conover's. As Alex and Anna say...it's all about the Knitwits! Yes, i am afraid to admit that I have become a bit obsessive (with the help of some friends) over knitting and the wonderful scarves but they have brought so much joy to me and others that it is hard to think about anything else.

We have raised over $18,000 for Matt's Scholarship fund - thanks to everyone who has generously supported this project. The "Knitwits" are still going strong. Last weekend, at a hockey tournament in Rochester, New York, I taught several moms how to knit. One mom accompanied me to several knitting stores. She is "hooked" now too! I thought that things would be wrapping up but we have three more scarf parties coming up and the scarves are still coming in from all over.

The children seem to be doing well. I am looking forward to spring and time to get outside. This winter has been hard. We have managed to stay pretty healthy, given a few sniffs and sneezes. Our next few weekends are filled with hockey as Alex's team is in first place and we travel to some tournaments and the playoffs.

I am still having some difficulty with flashbacks but I seem to making progress in the right direction. I do see visions of Matt healthy more often than sick now, which is a start.
i still thank everyone for all their prayers for our family and for continuing to check on us.

- Noelle

Saturday, January 24, 2004 10:48 AM CST

I chose this photo because it was taken exactly two years ago. We were up at the cabin, having a great family weekend. Matt only got to go to the cabin that one time - but he really enjoyed himself. We are packing to go to the cabin today. It is the first time we will be there since Thanksgiving. It is so hard for us to get there during hockey season, with Alex's schedule. I can't wait to get there. It is so peaceful there, and different from being here.

I have been very busy with the scarf project. We sold over 400 scarves in just 8 weeks before Christmas - raising over $14,000! I thought that the demand would subside, but we have many, many orders to fill and are planning two scarf party showings as well. Thanks to my knitters (over 25!), I have an inventory of over 60 scarves! They are so beautiful and lately - the warm and wooly ones have been very functional! The spring yarns are in and we are having fun picking new combinations and looking at all the cheerful colors. it has really kept me going this month.

The kids are good. Megan has been working so hard and it really paid off this semester. Her grades are better than ever and we are really proud of her. Alex is working very hard too and has become a voracious reader, reading all of the 25 required books already and begging for more. Anna is doing great too - she loves preschool. She is very excited about turning 5 soon. I still cannot believe she will be going to kindergarten.

I miss Matt. I miss him every minute of every hour of every day. He has been gone from us for 18 months now but it seems like an eternity and in some ways, seems only like yesterday. Sometimes I close my eyes and I am transported back to those days in the hospital, when we were sure he was going to make it. Other times, I see him in the ICU, struggling to breathe. It is still very hard and each day, I am amazed that we were able to survive this at all. I know it is through God's grace and strength that we get out of bed at all. And I must say...we are all getting out of bed pretty well each day.

- Noelle

Sunday, December 21, 2003 5:26 PM CST

We would like to wish all of you and your families a blessed Christmas and a Happy New Year. We are off to Florida to escape once again for the holidays. We will be going to Disney for a few days and then off to St. Augustine where we will relax on the beach (brrrr....) and have a week of rest with Uncle Greg, Aunt Chris and their kids. We will drop Megan off in Jacksonville where the Lebo marching band is performing in the Gator Bowl.

Santa came early to our house this weekend. Anna was just as excited as if it was Christmas eve. Somehow, it was better this way. It was not the "same" - it never will be without Matt. Alex was so excited - he couldn't sit still - reminded me a lot of Matt. We had a very nice time and I was able to keep it together.

We got to spend some time with Grandma and cousins today and now we are home, packing. It is hard to decide whether it will be warm enough for shorts so we are taking way too much (as usual!)

This picture of Matt reminds me of the true spirit of the season -- an innocent child. May God bless you this Christmas and take a moment to be thankful for everything you have.

- Noelle

Saturday, December 6, 2003 9:58 AM CST

It has been much too long since my last update, but it is because I have been so busy selling scarves! What started out as a way for us to raise $1000 has turned into a major fundraising project that has not only helped us raise more money for the fund than we ever imagined, but has allowed Matt and his story to touch the lives of so many people.

Just a few of the many amazing stories...so far over 300 scarves have been knitted and sold!
- over 25 knitters from all over Pittsburgh, ranging in age from 10 - 80!!!
- we have sold scarves in the lobby of Heinz hall, the waiting rooms of doctor's offices, even at swim practices!
- The knitters are from the church, the school, the community, and even as far away as North Hills and Clairton
- The scarves cause a ruckus wherever we show them. Everyone wants a "Matt Conover" scarf. We have them for ALL ages.
- My coworkers are thrilled with them and some have become my best salespeople!
- We have taught several people to knit and they are now teaching others!
- Folks who tried and cannot knit are providing handmade tags, bags and doing deliveries.
- When we get together to knit, my house is once again filled with warm and laughter.
- I reach out to others who are grieving by telling this story and can provide encouragement for healing.
- some knitters who are going through trouble in their own lives are knitting for me and enjoy socializing with the other knitters

Matt's spirit of joyfulness and happiness are all around us as we raise money for his foundation. This project has helped me more than therapy, more than medication, more than support groups...it has given me a purpose and a cause.

I know my little boy would be proud.

We are all struggling with the upcoming holidays but plan to spend them in Florida with our beloved Uncle Greg, Aunt Chris and family. This will make it more bearable to be without Matt. Megan is marching in the Gator Bowl in Jacksonville so that should be fun for her!

God bless all of you and your families this holiday season.

Love,
Noelle

Sunday, November 2, 2003 8:54 PM CST

Weeks have passed since my last update. I can truthfully say that time is flying. I have been spending most of my time deeply engrossed in my latest project. A friend sent me a scarf last year that was so beautiful and the story intrigued me. You see, the scarf was knit by a woman whose daughter had survived lymphoma. While her daughter was in the hospital. she knit these scarves to keep her sane. She began to sell them and raised money for the local cancer research fund at her hospital.

The more I looked at the scarf, the more I realized that I could use these to raise money for Matt's Scholarship Fund. What I also discovered, though, is how healing it would be for me to knit these and tell people as I was knitting about Matt's story. I usually knit these while I am waiting for one of the children's activities to be over, or at meetings, or anytime I am sitting down. Because they are so beautiful, the scarves attract attention. I tell people about Matt and about the project.

What has happened is that I have over 50 orders for these scarves!!! I also have 12 knitters signed up to help me make them. It has kept me busy and my thoughts away from what was happening to Matt just two short years ago. I am surrounded by many warm and caring people who are just as excited as I am about this project. It is really uplifting!

So...if you like the scarves, please call me! We will be happy to knit you one! We call ourselves the "Knitwits" and the proceeds will support a valuable cause - The Mattthew Conover Memorial Fund.

Everyone else at our house is doing as best as we could hope for. We have all had our share of illness and Megan is working hard at her most difficult year in school. Alex's hockey team is undefeated this year and soccer just ended for him. Anna is her cute, adorable self - and loves to "help" with the scarves.

I am still working two days a week, designing websites, and David is still plugging along. We went to the cabin this weekend - and even though it rained, we enjoyed just being together. Halloween is over, and I am glad. Just two more big holidays to make it through and then another new year. Another year without our precious boy. We sure do miss you, Matt. If I could knit a road to where you are, I sure would be trying...Thanks for checking in on us,

Noelle

Tuesday, October 7, 2003 9:21 AM CDT

I know it has been a while since my last update but this fall has been so hectic around our house. I am just back from the cabin where we spent this weekend. It is so beautiful up there at this time of year and just going there helps all of us feel better. We are quickly approaching all of the "dates" that seem to trigger so many painful memories. The smells and the feel of the chill in the air trigger some of my most vivid memories of that fateful year that Matt got sick.

We had fun at the cabin - fishing and hiking in the woods. It was hard to leave to come back to our reality but that is what makes it so special there - it is a different reality for all of us.

I do have some good news. We were able to get a United Way designation for Matt's Memorial Fund and in my wildest dreams, I never thought we would have it this year, but the folks at the Pittsburgh Foundation got it through for us. So, if any of you are interested or would like to designate a portion of your United Way funds to the Memorial Fund, here is the number:

Sunday, September 21, 2003 11:55 AM CDT

This picture says it all - it was our "before" - the life we had. It was taken the last wekend of summer, 2001, BEFORE Matt was diagnosed in October of that year. Two years ago. So much has happened to our family. It is hard to even imagine that we were ever so happy. But we were. We were complete. Now we are wounded - we have an amputation. We miss Matt more than ever. I keep reliving those days of two years ago - moment by moment.

But, no matter how hard we try, we can not go back. Our life will never be the same. One thing that is true for me is that I have gained a new perspective. I cherish every moment I have with my family and I will not take anything for granted. None of us is guaranteed another day on this earth.

What has helped me so much in the past few months has been to reach out to others. It has a tremendous healing effect. Helping those kids in Mexico was very positive for me and the entire family. Megan found this out too - that when you are helping others, you are not so focused on your own pain and suffering. I am also involved in a new grief group called GriefShare. It is a biblically-based support group who come together to support one another and learn about our grief.

I am more involved this fall than I was last year at this time. Gradually, I am starting to "reconnect" and attend the school events, games, etc. It is still very hard - in some ways, harder - because I know that people feel awkward around me. I hope that, over time, this will get easier for me and them. In the meantime, I am very selective about where I go and who I see. I still prefer one on one "coffees."

Thank you for still checking in with us. We are still wonded, and as I said before, we are missing a very important part of our body. But we are learning how to "walk" again. We will never walk the same but we will walk again.

- Noelle

Tuesday, September 2, 2003 9:57 AM CDT

First Day of School - 2003

Well, Matt would have begun high school today. What more can be said? It is so hard for me to believe that he is not here. Each day, it gets harder for me to accept. When I awoke this morning, I almost thought that I heard him bouncing down the steps. It's funny...he loved the first day of school. I guess the excitement of the day - meeting new people - a new schedule - new school supplies! I remember how nervous he was on the first day at Mellon. He was afraid he would not be able to get into his locker. Megan took him up before school started to practice the combination. He would get so excited, his hands fumbled.

Megan is off for her first day as a junior. Only one more "first" day for her and then off to college. Alex is still home due to Foster's renovations. He is enjoying his last days of "freedom" and Anna is counting the minutes until school starts for her tomorrow.

It is a rough time for me. The fall has always been my favorite time of the year but it is filled with reminders of dates that are so painful. I am still trying to figure out what is next for me. Working on Matt's memorial, the gifts for Children's and the playground have kept me occupied - a good thing for me. I need another project to get me through the dark and dreary days of winter. We'll see what God has in store for me.

As always, thanks for checking in.

- Noelle

Thursday, August 21, 2003 7:02 PM CDT

The picture above is the completed project at Mellon Middle School. We finally got the plaque finished and installed this week. I am glad it is before the students return to the school. Although, sadly, Matt's class will be leaving Mellon and starting at the High School. I am sad every time I think about it. I knew that this time of year would be difficult, but milestones are also hard. Seeing Matt's friends and knowing that they are moving on to a new place worries me that they will forget him. I hope not. I know he is out there with them, in spirit.

Megan has been at band camp all week. It is hard for me to see her there on that field, knowing that Matt would have been on the drum line. I can almost see him bouncing in formation. I know he would have been there.

Megan leaves on Saturday for Mexico. Yes, I said Mexico. She fell in love with the people, the children, the missionaries, everything about the country. We decided to send her back to spend a week, alone, with her cousin. She is very excited and is really looking forward to spending another week in San Luis. Please keep her (and us) in your prayers as she travels there, alone.

Alex has one more week - and nothing scheduled - before he is off to fifth grade! It seems just like yesterday that Matt was in 5th grade. Alex has the same teacher, Mrs. Pavlik.

Anna cannot wait - she is literally counting the days - until preschool starts. She really wants to go to Kindergarten and cannot believe that she has to wait one more year!

I am really trying to get back to my "old" self but I got sick in Mexico and still do not have my energy. I am feeling very anxious about the transition back to school and worry that I will not have enough to occupy my thoughts. It is dangerous for me to spend too much time alone. I will be calling some of you for coffee!

I miss Matt more than ever and in some ways, it seems worse now. I think I spent all of the past year concentrating on the kids and making sure they were ok. I am not sure I am ok. I have to be, for my family, but I miss him so much, I ache. I am still taking every day as it comes and some days, I take it minute by minute.

Thanks for thinking of us and continuing to check on us. Please sign the guestbook if you get a chance.

- Noelle

Saturday, August 9, 2003 9:58 PM CDT

Hola!

We are back from our trip to Mexico and it was a very emotional and life-changing trip for our entire family. We had a wonderful time and the playground, as you can see from the picture, turned out better than we could have ever imagined. The children of the Salvation Army love it and are so happy to have received such a wonderful gift.

The Mission Team worked hard. We spent the mornings building the playground and helping to build a room for Matt's Uncle Greg, one of the missionaries in San Luis. In the afternoons, we conducted a vacation bible school for over 75 children! There wasn't much time to rest or sleep. We have returned exhausted but exhilirated from meeting and interacting with such a beautiful group of children.

Each day, when we arrived at the Salvation Army, the children, (los ninos) would run up to greet us. They tried to speak English and we tried to speak what pitiful amounts of Spanish we knew. Yet, somehow, we were able to communicate (probably through the language of love) and develop relationships with the children.

As I looked at the children, I couldn't help but imagine Matt and his wonderful smile. The smiles of these children reminded me of him. Matt loved children. He would have loved being with them and playing with them. How appropriate that we build this payground memorializing him in a place where there are so many children? His spirit was with us the entire week.

In a beautiful ceremony, the children sang to us and thanked us for helping them. They told us that they would always be grateful and that we showed them the meaning of love. But, I think it is the other way. These children, who have no parents and live in this place, demonstrated love to us each day. They seemed so happy and grateful for whatever they were given. That spirit also reminds me of Matt.

It was one of the best weeks of my life. In spite of my sadness at times, especially when I would think of how Matt would have loved it there, I was able to find joy in the faces of these kids. I am so grateful that this team of people thought enough of Matt to make this journey with us and work so hard to preserve his spirit and memory.

And now it is back to the reality of being here, in this place, without my dear boy, without those dear children, back to the routine of life. I hope that I will have the strength to face the next few weeks. Especially as Matt's class goes to high school this year. It is a big moment in their lives and I still cannot believe that he will not be there with them.

I miss you, Matt. I know that you are proud of us and what your family and friends accomplished in your memory. We have made many children a little happier this week.

- Noelle

Sunday, July 27, 2003 1:17 PM CDT

Ola! We are in Mexico. It is nice here and we are enjoying some much needed rest with our family. We have been preparing for the mission team too!

If anyone wants to send us an email, please note that for some reason, Stargate has changed our email address to:

Wednesday, July 23, 2003 1:03 PM CDT

Well, we now have another driver in the house - Ugh! Megan turns 16 today! Of course, she was at the driver's license center at 8:30 with David getting her permit. As she says. "I have been waiting all my life for this!" And she has. Well, wish us luck as we venture into the world of teen drivers. Scary!

We leave on Friday for our mission trip to Mexico. The Post-Gazette did a lovely article on the trip in today's South edition. Click here
to read about it. It was really a nice piece. We are so grateful to everyone who has taken on this trip with such enthusiasm. We are really looking forward to building the playground in Matt's honor. He just loved little kids.

I was thinking about this yesterday. I really miss his interactions with Anna. He really was tender and sweet with her. For whatever reason, the other two are not like this with Anna, and it makes me sad to think how much she lost. She asks about him ALL the time. Almost every day. Mostly questions about Heaven and when we will see him again. Part of her confusion is over where she was before she was born. She keeps asking me if she was in Heaven too! It is very hard to explain all of this to her and I know that as she reaches each developmental stage, I will have to rexplain Matt's absence to her. He was just such a big part of her and our lives.

Please keep us in your prayers as we travel to San Luis. Pray for our health, our strength to build the payground and conduct VBS, and our interactions with such a large group of people. We will be updating the church web site and I will try to update this site too!

Thanks for all the cards, letters, email and gifts that you all sent this month. They mean so much to me and knowing that you all remember and think about Matt every day means so much to us. I guess I should leave you all by saying....

Adios!

- Noelle

Sunday, July 14, 2003 12:00 A.M. EDT

Happy 14th Birthday Matt!

As I write this and look at the sweet picture of you, taken on your very first day of life, it is just too hard for me to imagine that you are not here with us, celebrating turning 14. I looked around the house and found a picture of you on your last birthday here on earth - it was the day you turned 12. You looked so happy and full of life. I hope you are having a great birthday in Heaven.

We decided that we wanted to celebrate your birthday by taking a gift to Children's Hospital. So, this morning, dad, Megan and Mrs,. Eberz and Mrs. Cullen and myself are taking 17 Playstation 2's to donate in your name to the Oncology Unit - 8 North. This is the result of all the generous donations from all your friends and family last year. We were able to purchase the Playstation 2's, along with several games for each unit. Matt, because of this, no child on 8 North will have to wait to use a game. Each room will have its own unit and games. I know you would like that. I know that this is a great gift for those kids.

It will be very hard for us to go there. I have not been there since the day you died. I am going to try with all my strength to do this, and focus on celebrating your life.

I miss you, buddy. I am thinking about you every second of every day. In some ways, it seeems to be getting harder. I am not sure why.

I love you and you will always be - forever in my heart.

Love,
Mom

I found this poem in my files and thought it might be a good time to put it on the site. Thanks to everyone who remembered Matt this week. I am amazed that you all still think about us so much.

Friday, July 4, 2003 11:50 AM CDT

Matt - my dear sweet boy,

It has been almost a year - at 4:45 p.m. on July 5, it will be a full year - 365 days - 8760 hours - 525, 600 minutes - 31, 536,000 seconds since you took your last breath and we have been counting them, one by one, trying to pick up the pieces of our shattered life. Your death took with you all of our hopes and dreams for your future. We have spent the past year without your smiling face, your enthusiasm and contagious personality, your ability to "glue us together" as a family. We have had many dark moments, trying to make sense out of something that is simply, senseless.

For the first few months, after you left us, all I could do was think about joining you. I really wanted to die. It is hard to explain, but even though I had so much to live for, all I could think about was what I had lost. The past year has forced all of us - your siblings, your dad, your friends, even people who only know us through your web site - to really think about what matters most. Matt, you changed so many lives. They will never be the same. Although at times, I thought that I would never experience joy again, I can see now, after surviving this long without you, that you have become a part of me, in a way that I never thought possible. All that was good about you has found its way into my heart.

You never judged anyone. After a year, I am much less quick to judge. You always saw the glass as "half full." I am beginning to see the beauty in all that I meet and I am starting to focus on the "positive" in people. You had such a sense of self-assurance. Your siblings are much more assured and show your great qualities in everything they do.

Matt, it has been a tough year. We feared that we would never be able to experience joy again. I now know that eventually, in time, we will find joy. I have been able to find joy in small things - sitting and singing with Anna on the swing; watching Alex pitch the baseball like you once did; listening to Megan play your favorite songs on the piano.

I know that what has gotten us through the past year has been the love of friends and family. The little notes, the flowers, the books, the phone calls, the offer of a helping hand…all genuine gifts of love. It shows us that although we lost you, the love that we shared can never be destroyed. Your memory - your love - will always go on and you have become closer to us than we ever imagined possible.

And so, Matt, we will begin our new journey… and you will be a part of this journey. As we go on the mission trip to Mexico, you will be there with us. We will work hard to spread the love that you gave us with those who may have never known that kind of love.

Son, it has been one incredible year. I never expected to still be here. At times, I thought that another breath was not possible. But you have given me strength. You are such a part of us and now I know that you will always live with us…forever in our hearts.

Missing you and always loving you,

Mom

Friday, June 27, 2003 8:56 AM CDT

Saturday, June 14, 2003 9:45 PM EDT

The pictures above (there are more in the photos section) are of the dedication ceremony for the tree we planted in Matt's Honor. It was a wonderful day. I know Matt was smiling down on us. I felt so happy to know that Matt will always be remembered in these kids' hearts.

The text of our dedication follows:
On behalf of our entire family, I want to thank all of you for being a part of this dedication ceremony. Matt is smiling down on all of us today - probably bewildered that we are all here, paying a tribute to him. I am sure he is saying, "what is all this fuss about?"

But I know that all of you who knew Matt would agree that he was a special kid. We always thought that, but hey, we are his family. It wasn't until he got sick that we realized that many of you thought he was pretty special too. Whenever a doctor or nurse first met Matt, they invariably asked what he liked to be called - Matt or Matthew. Matt just usually shrugged his shoulders with a "whatever" attitude. That was Matt. Easy to please. Happy-go-lucky. Good words for everyone. Smile on his face.

Many of you called Matt "brave." I think brave is not quite right. Brave comes across as too macho, as too determined. No, Matt was just at peace with who he was and who God was. He rested in that knowledge, and was embraced by that comfort throughout his journey.

Matt had a real sense of family, and he was a strong glue for us. He loved our family vacations and our family outings. He brokered peace many times. He also had this same strong sense with you, his friends. With all of his classmates. In his public battle those last few months, he also managed to convey that to this community. These sentiments were echoed over and over again by many of you. We all revisited our priorities, our family, our relationships, and our God. That was Matt.

Matt only had 12 years on this earth and we can’t answer "why." But I do know that Matt showed us all more in his 12 years, more in his 9 months battling cancer, more through his death than we will ever know. So now, we try to pick up the pieces and find an answer to what should be a simple question – why?

But as anyone who has ever lost a loved one will tell you, it’s not such a simple question. In fact, often there are no reasons, no explanations, no answers. Often, there’s just that haunting question – why?

The truth is, sometimes life just seems to change the rules of the game on us and there’s little anyone can do about it. Life changed the rules for Matt and now he’s gone. But we, as his family, his friends, can change the rules a bit, too. We can find ways to preserve the memories, find ways to make sure his spirit lives on. Our family has found a way to keep Matt’s spirit alive, as have many of the folks in this community. This year, Matt's brother, Alex's hockey team wore a patch with Matt's initials on their jerseys to honor him. Many of you took the name, Matthew, as your confirmation names. At the High School, a scholarship fund, The Matthew Conover Memorial Scholarship, has been set up to give a music student the chance in life that fate denied Matt. This tree will grow and will provide a reminder to all of us that Matt was and will always be a part of our lives.

As you all leave Mellon behind and begin your high school careers, remember Matt and the countless hearts he touched. Remember the life he lived, how brief it was, but remember, he will live forever in our hearts.


FATHER'S DAY - 2003

Happy Father's Day! This is David's first year celebrating Father's Day without Matt. I know how difficult it was for me on Mother's Day. We are going to the cabin. It is really the best place for us. To all you fathers out there, enjoy the day with your kids.



- Noelle

Monday, May 26, 2003 9:42 PM CDT

Memorial Day, 2003

We just returned from a trip to our cabin in Cook's Forest. We are so lucky to have a place to which we can "escape" when we need it. I needed it today. We have been going to Cook's Forest ever since the kids were little. David and I went there not too long after we were first married, almost 22 years ago! This picture was taken on our last trip as a whole family. Everyone looked and really WAS happy. Matt loved it up there.

We had a cookout and a campfire today. Matt loved campfires. He was always intrigued by the flames - spending time watching the dancing fire. As I gazed into the flames today, I could not help but think of my beloved son and all that he so valiantly battled. No, he did not go off to war, but he waged the best war that could be waged against an unrelentless enemy. He fought with courage, valor and hope. He never once complained about his circumstances, instead picking us up when we were weary from the battle. He wanted to live. He wanted to be a part of this life, which he enjoyed every day he lived it. But, that was not to be. I am so proud of my son. I am so proud to be his mother. He will always be a part of me and I will always tell his story to others so that they will know that he was a true hero - He was my hero.

God bless all of you. Please remember all the grieving parents on this Memorial Day. Take a minute to reach out to someone who may be hurting - it will mean more than you will ever know.

- Noelle

Friday, May 16, 2003 8:24 PM CDT

Another week has gone by and we are still missing Matt. Tomorrow will be one year ago that he had the bone marrow transplant. May 17 - the date really stands out for me because we told Matt that that date would be his new "birthday." We even sang Happy Birthday to him. Well, Matt, I guess you did get a new life, it is just not with us. I miss you so much, son.

Well, I got through Mother's Day. Thank you to all of you who called me or sent cards. I really tried hard to focus on the wonderful kids that I have here on earth. They are blessings to me.

Our family got some great news today. Megan was accepted into the Pittsburgh Youth Symphony. This is a prestigous group of musicians who study under the Symphony musicians themselves. It is a big honor and we are so proud of her. She really worked hard (since the age of 4) to get to this point. She really deserves this.

We are almost finished with the big "move" of rooms. Megan is happily settled up on our third floor and Alex is much happier "down" on the second floor with us. David is now sure that we will never move because just a room change took us almost two months to accomplish!

We spent some time last weekend at our cabin and are looking forward to going there on Memorial Day. We are making plans to remodel it to make it more rustic. It is very peaceful up there and I am grateful to have a place where we can get away.

Thanks for checking up on us. We are trying to go on the best we can.

- Noelle

Friday, May 9, 2003 8:50 AM CDT

MOTHER's DAY - 2003

I just read something about Mother's Day on one of my online support groups. It was something I never knew. Somehow, reading it and realizing that Mother's Day began to honor a mother who lost not only ONE of her children, but SEVEN, made me think of the day in a new light. I will think of it as a tribute to bereaved mothers everywhere. Here is the excerpt:

Mother's Day was the creation of a woman named Anna Jarvis in the early years of this century. Anna, who never married and never had children of her own, devoted herself to establishing a national Mother's Day as a way of honoring her beloved mother, who died on May 9, 1905. In Anna's view, her mother deserved a memorial because she had lived selflessly and endured considerable suffering - seven of her eleven children had died in early childhood. According to historians, Anna's mother mourned the deaths of her children throughout her life. Anna insisted that the holiday always fall on a Sunday so that it would retain its spiritual moorings. Because of her efforts, President Woodrow Wilson finally proclaimed the second Sunday in May as Mother's Day. Although Anna couldn't prevent the new holiday from quickly becoming a marketing phenomenon, she did try. Speaking out against "the mire of commercialization" that threatened to engulf Mother's Day, Anna attempted to preserve her creation as a true "holy day," a time for solemn reflection and prayer. Mother's Day, then, was borne of a daughter's grief and love. More importantly, it was intended as a tribute to a bereaved mother-a brave woman who lost multiple children but who managed to live with an abiding kindness and generosity toward others.

I like knowing this background, and my attitude towards Mother's Day has been colored by the knowledge. The holiday now makes me think of the common sorrow that links all bereaved parents. I feel a bond with Anna's mother that stretches over time and space. In a broader sense, the woman for whom the holiday was founded reminds me of people I've met at TCF who have continued to live productive, meaningful lives in the face of unthinkable loss. Finally, Mother's Day in its origins symbolizes both the joy and the vulnerability inherent in parenthood. Anna's mother knew all too well that from the moment a child is born, hope and the possibility of tragedy go hand in hand. She understood the fragility of life. ---By Barbara Atwood, TCF, Tucson, Arizona ~lovingly lifted from Tucson TCF Newsletter

How appropriate for us that a woman named "Anna" started Mother's Day. I will be thinking of Matt this Sunday, but I will be celebrating and thanking God for the wonderful children I still have here on earth. Hug your children tight this Mother's Day, and please...say a prayer for all the bereaved mothers out there.

- Noelle

Saturday, May 3, 2003 6:20 PM CDT

Wow - what a day. I just couldn't stop thinking about Matt today. It is May and we were running around to all the activities. Anna's birthday party was today and Alex had a band rehearsal and a ball game. Megan had an audition for the Youth Symphony. It was a beautiful Spring day. But where was Matt? He should have been here to enjoy this day. He loved the spring and was really looking forward to returning to baseball this year. It is hard for me to enjoy the spring without him here. I go through the motions but my heart is just not in it. I feel like an amputee. Part of me is missing.

I attended a Community Forum this week held by the new Pediatric Hospice and Palliative Care program at Family Hospice. I am so interested in this program - they are going to provide such a needed service. They will provide care and support for families whose children have no other medical options available to them. They are hoping to be there as a support system for these families who may not have one when they leave the hospital. I feel like I can really contribute to this group and maybe make a difference in someone's life. It is the first thing that has come along that really excites me. I hope to do more work with them.

We are starting to think about our plans for Mother's Day. I was so blessed to be with matt last Mother's Day in the hospital, preparing for his Bone Marrow Transplant. I wrote the following entry in this journal that day. It takes on an entirely new meaning this year.

Sunday, May 12, 2002 8:02 P.M.
What a strange place to be on Mother's Day. I felt for all the mothers on this unit. It is sad to be spending another day in this hospital yet this day was very meaningful to me. I felt like I actually was doing all the things for Matt today that we do for our children on a daily basis - prepare food, clean up, do laundry, bathe them, etc. The difference is that I appreciated doing these small things for him in a way I never would or could before his illness.

He must take four baths a day to rid the skin of the toxic chemo drugs. I felt so lucky to be giving him those baths today. As I filled the water, I thought of all the times I filled a tub for him as a baby. I would carefully check the temperature of the water. I would be sure to have a warm room and warm towels. As I washed his skin, I would be sure to get in the creases and tried so hard to protect his delicate skin. I was privileged today to share those baths with him. How many of us get to be close to our almost 13 year olds? How many of us get to spend an hour, four times a day in a quiet room with them? I felt like the care I gave Matt today was what being a mother is all about. I am blessed. Happy Mother's Day to all of you. I hope you got to spend some of this precious quality time with your children today.

So, we have come almost a year and our hopes and dreams have not been realized. I am grateful that I do have three children here on earth to celebrate Mother's Day with and I look forward to the greatest Mother's Day of all in Heaven, with ALL my children.

- Noelle

Wednesday, April 16, 2003 2:37 PM EDT

Easter Week, 2003

What a difficult time for us. This is a beautiful time of year. Our yard is just gorgeous. The daffodils are in bloom, the dogwood is ready to bloom, the tulips are vibrant and Matt is not here with us. So hard to enjoy the beauty that surrounds us. It was about this time last year that we were preparing for Matt's transplant. I remember last Easter weekend, he was excited because he felt better - it was between chemo treatments. He was happy because his step-grandmother was coming to visit and she was going to cook him whatever he wanted. He loved to eat and cook and they were going to cook together. However, two days before Easter, he started feeling weak and as was usually the case, he needed blood products. We had to go to the hospital because it was a Saturday and the clinic was closed. To make a long story short, we ended up at the hospital all day and hadn't gotten any blood products. He was really sad. He knew that the long awaited Easter dinner was at home and he was stuck in the hospital. But most of all, he really wanted to be home for Easter morning. He loved looking for the Easter baskets that David hid with a set of ten clues, usually designed around a theme, such as baseball. He told the nurses about it and they tried to get us out in time for him to enjoy his Easter morning. In fact, we drove home from Children's at 2:00 A.M.

He awoke on Easter morning, full of excitement, and eagerly went about the house, searching for his basket. Did he know that that Easter could be his last with us? I don't think so, but sometimes I think he knew more than any of us. I cherish the pictures of him that day. In spite of what he was going through, he was as happy as he could be. He is my hero.

I wish all of you and your families a blessed Easter. It holds new meaning for us this year. We are going to the cabin, where we will be together as a family, thinking about our dear Matt, and hoping that his first Easter in Heaven is great.

Happy Easter!

- Noelle

-- Noelle

Sunday, March 23, 2003 1:30 PM CST

Dear Matt,
Spring is here. The warm weather, the tulips and crocus springing up from the cold, hard ground, the smell of new life...but where are you? So many memories of you flood my mind...baseball is starting - you loved to play, Alex is riding his bike with his friends - you loved to do that, just being outside and feeling the warm breeze - you are everywhere.

We went to the cemetary after church this morning. The wreath was gone. I am not sure where it went. Your grave looked so bare. I plan to bring some spring flowers there soon. The tulips we planted are sprouting. It was so dark. rainy and dreary on the day we planted them. Now they are springing to life. How I wish you would return to us. Your friends are writing on the site. I know they are missing you too, as the season changes. Spring is a time of renewed hope. We had that hope last year as we looked forward to a cure.

But a cure was not in store for you. At least not the cure we thought. But the truth is that you are out of pain. Your spirit is with us. You are free forever. Cancer will never harm you again. You are in Heaven. We, unfortunately, are in hell here on earth. I hold on to the hope that I will be with you one day. That is how I go on...

Spring has really come...and I think that it brings hope for me. I am surprised that out of the darkness, I have a sense of peace that is emerging. The passage in my daily meditations book says:

"...life will pull us along, whether or not we give it our blessing. And one day, like a storm that passes, we will see that light again, and realize that during all the time we felt lost in darkness and confusion, processing of healing and growth were doing their slow and often silent work...like the butterfly emerging from the cocoon after a long darkness, we will shake caterpillar dust from our wings and realize we can fly.

Sometimes I feel frozen in place, as though I will never move or grow again. But all the time, One who is higher than I is leading me through this dark land." - Martha Whitmore Hickman

I love you Matt. I miss you.

- Mom

Friday, March 14, 2003 8:03 PM CST

It has been awhile since my last update. The kids were off school this week for a couple of days and we decided to go to our cabin. It is a favorite place of mine, so it was good to get away. There was still lots of snow there, but today was beautiful for hiking so we took a very long walk in the woods with the kids and the dog. I think about Matt a lot up there but they are always happy memories. I think that is because he was only there twice and both times, he felt pretty good. The bad times never hit us there. How grateful I am that we have a place like that where we can escape.

The best way to describe the last week or so, is that I am keeping on...keeping on. I am taking each day as it comes and I am learning not to expect too much from myself or anyone else, for that matter. I have started going back to church and that feels good. I have also joined a small group bible study during Lent. How much relief I felt when I simply introduced myself and didn't have to share any of the details of my life. We are also involved with a group that is going to Mexico this summer on a mission trip to help Greg and Chris. It is exciting to see this happening and be a part of it.

Just being out in the sunshine today made us all feel better. Somehow, I think the change in seasons will be good for everyone. I just wish Matt was here with us to see the beauty of it all.

-- Noelle

Wednesday, March 5, 2003 11:39 AM CST

It is strange to see this date. When I was born, 43 years ago, it was very cold, icy and snowy. Or so I am told...I feel very lost today. I know that last year on my birthday, people surrounded me, to "celebrate" that Matt was almost done with treatment, to encourage me, to get my mind off of our reality. Well, in contrast, today has been a very quiet day. I have heard from a few folks, but mostly, I have received cards. I am sure noone knows what to say to me. How can you say "Happy Birthday" when you know that it is not in any way a happy day.

David stayed home from work today. Probably because he knew that I would have a rough day. He took me out to breakfast, where we spent some much needed time alone. It is so hard for me to imagine that I am now 43, and when I was 42, Matt was still with us. It is just another cold, hard dose of reality.

I thought a lot about my mom today. Actually, I think all mothers deserve roses and cakes on the days of their child's birth. After all, weren't we doing most of the work on that day? My mom really loved me and I know that she is watching from Heaven (hopefully with Matt!) and that it hurts her to see me so upset. I know that if she were with me today, she would be here right next to me, holding me and giving me her words of wisdom.

The kids gave me a birthday present this morning. Megan picked it out and as I slowly opened the box, her eyes were intent on mine. In the box was a book that I always read to Megan and Matt when they were little. It is called, "Love You Forever" by Robert Munsch. If you have never had the opportunity to read this book to your kids, you should get a copy. Be prepared to cry. We all did. It is so beautiful.

I never thought much about that book since Matt died, but Megan must have. She wrote a beautiful note on the cover and now that I think of the words of the refrain in the book, I see how appropriate they are. She is very insightful. Thank you sweetie.

The refrain goes:

"I'll love you forever,
I'll like you for always,
As long as I'm living
my baby you'll be."

Isn't that the truth? I will love all my children for as long as I am alive. I just never thought that one of them wouldn't still be alive today.

- Noelle

Wednesday, February 26, 2003 12:58 AM CST

Is anyone else sick of this weather? I am so tired of the cold, the mess, the gray skies, not being able to walk, and the endless snow. It is a hard time of the year under good circumstances. This is especially difficult for me this year. I have so many flashbacks to what we were doing at this time last year. So many painful reminders of the hospital, his "Wish", feeling better and going out to eat, and sadly, on March 15, relapsing. These days, I am sad to say, are the lowest for me.

I have been spending my time running around after the kids. Megan is getting ready for a round of trips for her many musical endeavors. She was chosen to go to State College for the regional orchestra in March. Also in March, she will travel to New York City (I am going too!) with her outside orchestra and then in April, she will go to Myrtle Beach. Quite a schedule! Alex is recovering from his bout with the horrible virus. His hockey is almost done for the season, but he will be doing power skating, three-on-three leagues and the latest, roller hockey for the summer! They sure keep me busy.

Anna is her wonderful self. She is full of life and full of talk. On my most down days, she manages to bring me back to life. Thank God for her.

I feel very isolated. I guess it is a combination of the weather and my mood. I have not really seen or talked to too many people. It is hard for me to even go to the kid's activities. I still have a hard time feeling like I belong. Of course, I found another poem this week. It really spoke to me because when I do see people, they ask me "how I am." This is how I am:

Ask my Mom how she is
My Mom, she tells alot of lies
she never did before.
From now until she dies,
she'll tell a whole lot more.

Ask my Mom how she is
and because she can't explain,
She will tell a little lie
because she can't describe the pain.
Ask my Mom how is she,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?

Ask my Mom how is she,
she seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how is she
she'll lie and say she's fine.

I am here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.

On the day we meet again,
we'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom
with all the lies you told!"

Author Unknown

- Hoping for a sunny, warm day SOON - Noelle

Tuesday, February 18, 2003 8:24 PM EST

The blizzard of '03. What a weekend. We spent our time in the house with a sick one - Alex. He came down with a fever of almost 104 on Thursday. Scared me to death. If I didn't know that half his class already had this, I might have been more worried. So here we are, five days and one antibiotic later. He has bronchitis - something very treatable. Thank God. It really took me back to when Matt first got sick. I know it will always scare me.

Being cooped up in the house gave me plenty of time to think about Matt. I think about him day and night - especially at night. I am having trouble sleeping. I keep getting flashbacks. I am having such a hard time, letting him go. Just this week, someone sent me this poem and it was fitting. Once again, I regret that the author is unknown.

It's Okay to Let Me Go, Mom

Mom, you have to let me go,
Because it was meant to be.
And just because you let me go,
Doesn't mean you'll ever lose me.

You hold my hand and stroke my cheek,
As your heart is breaking in two.
And my spirit is still right there,
you see,
I'll always be there within you.

I see your tears and I feel your pain,
And I know you just want to die.
But it's not your time to come here
yet,
And right now I can't tell you why.

There's more you have to do there,
More lives and hearts you must touch.
There's other's there around you,
Who still need and love you so much.

So please don't feel like you've lost me,
For you haven't, I'm still by your side.
Now I'm holding YOUR hand and stroking YOUR cheek,
So you'll want to live and not die.

Oh Mom, I want you to live now,
And I need you to let my body go.
The part of me you love so much,
Is now in the breeze as it blows.

When you're in the kitchen 'cooking',
Or simply just combing your hair.
When the light in the room just flickers a bit,
Know it is me, and I'm there.

When I was hurting and I was in pain,
You were there with your comfort and love.
Now let me do the same for you,
Let me give you those things, from above.

I'm walking and smiling, and happy,
And I want you to know this is true.
I'm with you and around you still,
And I'll be here to help you get through.

Close your eyes and you'll hear me talking,
Open your heart and you'll then feel me
there.
It's not a 'trick' or just 'your mind',
It's "me" that you feel on the air.

So it's okay to let me go, Mom,
I'm not in my body, you see.
Cause I'm in your heart and in the air,
And I promise You'll never lose me.

Thanks for checking in. We appreciate it. Don't forget to sign the guestbook!

- Noelle

Sunday, February 2, 2003 6:20 PM CST

Another month...another anniversary. It will soon be seven months without Matt. I have been struggling this week. Most of my time is spent doing the basics. Everything seems to require so much energy these days...I have been spending a lot of time online. I found this letter and honestly, I could have written it, word for word. It is long, so I understand if you don't have the time. But it is really honest - brutally and painfully honest - and so true. If you really want to know what this is like, read on...


-- Noelle


"After my son's death, I would go to bed exhausted and fall into a fitful mode of sleep only to envision his death over and over. After three hours of this unconscious horror, I would get up, put on my robe and go into the TV room, switching from channel to channel, not watching anything, not hearing a word, just feeling pain. There I would sit, day and night, tears constant. Everywhere I looked there was a reminder of my son: a coffee mug, a piece of paper with his
writing, his favorite purple shorts, his latest book with the marker in the middle--unfinished. Unfinished, like his life.

"Why?" I kept asking over and over, never getting an answer. Time was motionless, one day was like another, all the same, all painful. My arms ached for his hugs, my heart was heavy with guilt. I want him back! My beliefs were shaken, my spirit destroyed, the spark of our future had been blown out. I was not the same person. I was not a person. I wanted to die.

The holidays were draining. The days leading to Thanksgiving and Christmas were devastating. As each day began, I had to face the fact that people were going to celebrate even though my son wasn't going to be here! The world was going on without him. They didn't care, and facing that truth hurt. I was angry, resentful, bitter and broken hearted. Why me? Why my son? Why our family? We were good people. I miss him so much…

I know I have come a long distance from the day our son died, yet I know I have to come still farther. To the outside world, six months is long enough to grieve, but to a parent
it is just the beginning of the rest of their lives without their child.

I still have a hard time really believing he is dead. I wake up in the night and say. "Okay, enough. I have played the game! Come on, Son, come back home. God, let my son be well, please." Then reality crashes upon my head with its fearsome force and once again I am face to face with the unalterable truth: my son is dead. I have to live without my child.

Something is very wrong here. How can I live without the child who loved me so intensely, the child in whom so much time, tears and love were invested, the child who said he would hold my hand when I died?

The truth is so painful I can only touch it a little at a time. I cannot envision what kind of future we will have with this hole in our family. I cannot imagine not being mother to ALL my children. I will not watch him grow old. I will not see his children. Family reunions will not be family reunions.

Six months later, there is not a moment of a day that I don't
think of him. I don't sleep many hours, and I still have nightmares. I cry a lot. I don't have much energy, but I have started back to work, am cooking once in a while and am walking. These few activities take all the energy I possess--grief takes the rest.

When I deal with my grief, it picks me up in its powerful grasp, squeezes the very breath of life from my body and leaves me gasping in agony on the ground, begging for relief. I am left spent and have to go to the depths of my inner self to draw up the will to try again.

I have chosen to live and this choice to go on has a price: pain and hard work. I do hope that I am a survivor. I hope that by working through my grief, my life will again take on meaning. I hope that I can become more that half alive. I hope that I will look to the future without dread--someday."

--Sue Anderson, Kirkland, Washington
Bereavement Magazine, July 1992
8133 Telegraph Dr., Colorado Springs, Co. 80920
~reprinted from South LA Bay Jan/Feb 2003 Newsletter

Sunday, January 26, 2003 at 09:25 PM (CST)

We just returned from another wonderful weekend at our cabin. It is such a great escape for us. I am amazed at how much better I feel when I am there. There was over a foot of snow there which added to the kid's enjoyment of the weekend. We went sledriding (ouch) and Alex showed us all up with his ice skating ability. He makes it look so easy. David even got a chance to do some cross country skiing. It is really a great way for us to connect as a family. Even Megan had a good time.

Of course, every time we leave, I have a problem coming home. Today was difficult as I adjusted to being here again. Anna attended her first birthday party at Gymkhana today. It was fun seeing her interact with all her friends. She is really growing up. Megan and I took some time to visit the director of her violin program, Sister Francis. She is ill with end-stage lung disease. She is a delightful woman and the hours we spent there today blessed us all.

Thanks to all of you who responded to my plea for Guest book entries. I am grateful that you keep coming back to this site. It is good for me to read that you all think about Matt every day and that he touched all of your lives in some way.

I found another poem, on another site. The author, unfortunately, is unknown. Take a minute to read it...then take a minute to count all of your blessings. I did.
-- Noelle

Just For This Day

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up, and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both of the toys.
Just for this evening, I will hold you in my arms, and tell you a story about how you were born, and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late whilst we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours and miss my favourite TV shows.
Just for this evening, when I run my fingers through your hair as you sleep,
I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms, watching their children suffer senselessly, and screaming
inside that they can't take it anymore.
And when I kiss you good night, I will hold you a little tighter, a little longer, it is then, that I will thank God for you, and ask them for nothing, except one more day..

Sunday, January 19, 2003 at 10:59 AM (CST)

Lately, I have been checking the counter. It increases by almost 100 hits a day...so I know you are all out there. What I don't know is what you may be looking for when you come here. Not many of you sign the guest book. Do you want to know if we have suddenly "gotten better" or are "finally" moving on? Well, I wish I could tell you that things are brighter here...but the reality is that things are probably as bad as they have been yet. The harsh, cold reality that Matt is not here with us blows on us and feels like that harsh, cold windchill that we know so well this month.

I am searching. I am not sure what I am searching for. I wait to hear the phone ring...then let the machine pick it up. I wait for the other children to come home from school...then they retreat to their rooms or their activities. I look forward to working...but I get there and cannot get flashbacks of Matt and his struggle out of my head. I try to do something around the house...and I end up sitting in the living room, staring at his picture.

I spend a lot of time on the computer, reading other children's websites, trying to compare our journeys. I get caught up in their stories and ours plays in my head like a tape, over and over. I have gotten some comfort from a list of parents who lost children to cancer that I belong to and if anything, I read their posts and realize that I am probably NOT going crazy - that they feel like I do.

Someone wrote this on their site and it is exactly how I am feeling. I could have written it:

"Every single thought in my head is processed first with the thought that my son is dead. Maybe I need to keep telling myself that for it to be real. It is a nightmare. I wish I could wake up from it. I still can't believe this could happen to me. My worst fears have found me. I hate surviving. I hate logic. I just want my boy back."

Two more children died this week in our community. One died from a brain tumor and one, allegedly, at the hands of her father. My heart and mind go out to those families. I know the reality of what they are and will be feeling. It is not what I wish for anyone.

Thank you for continuing to come to Matt's site. I really hope that if you do come here, you will leave us a message. They truly help me. I want to know that Matt is not forgotten. I want to know that others miss him too. I want to know that you are praying for us. We NEED your prayers.

I really miss my son.

- Noelle

Saturday, January 11, 2003 at 02:08 PM (CST)

Hello,
It is very cold out today but I am inside where it is warm, listening to a new CD that I created (Megan showed me how!) of music that is uplifting. On it, I put my favorite songs that I have been playing, ever and over, to try to lift my spirits. It has been a difficult week. Probably the worst I have had so far. I am not sure why but probably coming home from our "escape from reality", to our hectic world of work, school and activities, had something to do with it. Jumping right back into the "fire." Some of the songs on my CD include:
To Where You Are - Josh Groban
I am Your Angel - Celine Dion/R. Kelly
With Hope - Steven Curtis Chapman
The Greatest - R. Kelly
Wind Beneath My Wings - Bette Midler
Heaven Holds the Ones I Love - Nita Whitaker
The Prayer - Josh Groban/ Charlotte Church
A Whole New World - Disney's Aladdin
Cry - Faith Hill
The Promise - Tracy Chapman
Tears in Heaven - Eric Clapton
He's My Son - Mark Shulz
Angel - Sarah McLachlan
Angels in Heaven - Higher Faith
Bring on the Rain - JoDee Messina
I will Remember You - Amy Grant

Music really does help to soothe the soul. One of the songs, With Hope, was given to me by a fellow bereaved mother when Matt first died. It wasn't until yesterday that the song really hit me. I pulled it out and played it - over and over. It gives me hope. Here are the words:

"With Hope"

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you are gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but…

We can cry with hope
We can say goodbye with hope
`Cause we know our goodbye is not the end, oh no
And we can grieve with hope
`Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again.

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done.

And I imagine you
Where you wanted most to be
Seeing all your dreams come true
`Cause now you're home
And now you're free, and…
We have this hope as an anchor
`Cause we believe that everything
God promised us is true, so…

We wait with hope
We ache with hope
We hold on with hope
We let go with hope.

After a week of darkness, there is hope...I miss you Matt, but I know I will see you again.

- Mom

Sunday, January 05, 2003 at 02:05 PM (CST)

Happy New Year.

It sounds so strange to say that, because I am anything but happy in this new year. We are back from Mexico and reality has hit me very hard. The reality that Matt will never live in this year, 2003. The reality of life looms larger than ever now - especially today - the six month anniversary of his death.

It is hard to believe that six months have passed, yet in so many ways it seems longer. Much of what I have read says that "reality" begins at this time and that the finality of not seeing a loved one really starts to hit. I miss Matt so much I cannot even begin to describe it. We went to church this morning, the first time in a long time. It was very difficult for us, but we really wanted to be there together as a family. Of course, we ended up sitting right in the same pew that we were in for Matt's funeral. Then, the first song was Shine Jesus Shine. Many tears there. The sermon was the Sermon on the Mount and the first part begins with...Let those who mourn be comforted...well I guess we were supposed to be there!

I know that this is a difficult time of year for many people - right after the holidays, dreary weather, etc. But I am especially dreading this time of year. If all had gone well with Matt's transplant, he would have been returning to school this week. Things would have been so different...I wish things were different. Most of all, I am so tired of how I am feeling. I found this poem on another Caringbridge site and I think it sums up just how I feel today.

I Am So Tired. . .

I am tired of crying for my child.
I am tired of being depressed.
I am tired of longing for my child.
I am tired of not being happy.
I am tired of telling people that my son is dead.
I am tired of my son being dead.
I am tired of not being able to remember what joy feels like.
I am tired of being angry.
I am tired of feeling guilty.
I am tired of missing my son.
I am tired of being told that it is a blessing to have an angel in heaven.
I am tired of being misunderstood.
I am tired of having to explain myself when I am depressed.
Again, I am tired of being depressed.
I am so tired of death.
I am tired of grieving.
I am tired of grief.
I am tired of asking why.
I am tired of not getting an answer.
I am tired of having to learn to live without my son.
I am tired of being indirectly told to "get over it".
I am tired of re-living the night of my son's death over and
over, complete with tears and emotional upheaval.
I am so tired of not being able to remember...
every moment of his life.
I am tired of being tired.

Author Unknown (from another Caringbridge site)

I hope that the next few weeks will bring me some peace. I am so grateful to all of you for the cards, letters, donations to Matt's fund, emails and words of encouragement. A special thanks to all who "took care" of matt's grave while we were away. That means so much to me. Please continue to pray for us.

- Noelle

Sunday, December 29, 2002 at 10:02 AM (CST)

Feliz Navidad! Merry Christmas to everyone. We are in Mexico and have been so busy that I couldn't write. It has been very healing for our family to be here. We are happy to be with David's brother, Greg and his family. The children have been having a great time with their cousins. It is also good for us to be away from home at this time.

Getting here was quite a journey. We felt a bit like the Holy Family on Christmas Eve. We left our home on Monday, December 23 at 4:00 p.m. and didn't arrive here until Tuesday, December 24 at 9:00 p.m.! Our journey included two plane rides (one through a tornado) and an eight hour car ride through the deserts of Mexico. Our wonderful hosts have been showing us around the country since then. It is really beautiful here - a desert set in the mountains 6000 feet above sea level!

We have seen quite a bit of the country and are experiencing the "real" Mexico through the eyes of our family. Megan has discovered the Mexican "boys" and Alex looks just like the neighborhood children. Even Anna has found a playmate, a little Mexican girl named Sarahi, who has a kitten just like Anna's "Snowball." They are fast friends.

Time has really gone quickly and we are trying to squeeze in as much as we can before we leave for the border on Thursday morning.

Thanks to all who sent us Christmas messages. We are glad that you are keeping Matt and us in your thoughts and prayers. We managed to "survive" our first Christmas without Matt. It was not easy but being here made it a little more tolerable. Best wishes to all of you.

- Noelle

Friday, December 20, 2002 at 09:30 PM (CST)

Well, Christmas is almost here. I can hardly believe that we made it through this far. It has been a very tough week. Memories of Matt are everywhere. I spent much time this week at the gravesite. I decorated a wreath and put it alongside the stone and a small Christmas tree that someone left for him. I am glad that he is not forgotten.

We are getting ready to leave for our trip to Mexico. I know it is the best place for us but part of me is sad leaving here without Matt. I will be happy when we arrive, safe and sound. Anna is excited for Christmas. She is expecting Santa to come to our house early so she will have presents to take to Mexico with her. She really forces me to do things that I would otherwise not be doing.

We went to several concerts and the kid's holiday gatherings this past week. It has been awhile since we were at these kind of events. Many people asked us if we are "OK." I don't think we'll every truly be "ok" because it isn't ok that Matt died so young. It will never be right. It doesn't mean we can't go on - we just have to find a way to go on. That is probably the hardest part of all this because there are so many memories that keep us from going on. The treatments, surgeries and horror of the disease itself invading our perfect lives. I can truly say that we are getting through "each day" and "each month" as best we can. As the numbness wears off, the reality of life without Matt sets in. And at the holidays, the raw pain is magnified by the perception that everyone has a perfect life. I know this is not true but this perception adds to the stress of grief. So...

It is best to run away from what we know and what have been our traditions. We only made a feeble attempt this year. We did it for the other children and I know that Matt would want us to celebrate for them. But, the bottom line is that we really MISS him.

Merry Christmas and Happy Holidays to all of you. Thank you for the cards, baked goods, emails and visits. Best wishes for a happy and HEALTHY new year.

- The Conovers

Wednesday, December 11, 2002 at 09:23 PM (CST)

I know that many of our friends and family read this website. I have been updating it a lot lately because it really helps me to get my feelings out and it helps all of you know how we are feeling. Well, I can truthfully say that right now, in spite of our pain and sorrow, the Conover family is feeling really blessed. I have a special story to share with all of you.

If any of you have been reading the guest entries, you may have noticed an entry from one of Matt's classmates, Lauren. She wrote to tell me about a strange occurence that happened to her in the past week. Sleeping at a friend's house, she was looking for a book on a shelf, when a small book fell off the shelf and opened to a particular page. The story is called A Gift for Noel. She was stunned when she learned the main character's name was Noel Conover! Imagine our surprise too when we learned of this story.

Well, it is truly unbelievable, but the story is in a book called A Treasury of Christmas Miracles, True Stories of God's Presence, by Karen Kingsbury. Lauren brought me the book tonight. I thanked her and anxiously read the story. It is a beautiful tale of a young child, about Anna's age, named Noel Conover. She is deaf and does not fit in with other children her age. Her parents pray that God will provide her with a friend at Christmas who will help her through the holidays. Noel sees a picture of a white, Persian type (white with gray ears and tail, blue eyes) kitten and using sign language, tells her mother she wants a kitty for Christmas. The parents pray that they can find a kitty for their daughter that is not too expensive.

On December 23, they locate a small, Persian white kitty and lo and behold, he is deaf! It is a miracle that they are able to give their daughter this precious gift. They can purchase him for a reasonable cost and they bring him home to their deaf little girl and she names him...Snowball.

If any of you just gasped, it is because we all gasped too. Many of you know that we adopted a little white, Persian type kitty for Anna after Matt died. She named her Snowball.

We are so encouraged by this story. We truly believe that this is a sign from Matt and God to tell us that Matt is ok. Little Snowball has brought so much happiness to our lives. We marvel how a little kitten can do that. This story brings us comfort because we know that even in these small miracles, God shows us he loves us and cares for us.

This is my early Christmas present. I am so grateful that Lauren chose to share it with my family. I am pleased to share it with you.

- Noelle

Friday, December 06, 2002 at 11:43 AM (CST)

The holiday season is here. When we returned from Thanksgiving in North Carolina, it came and hit us in the face. It is really going to be hard...harder than even I expected it to be.

We purchased an artifical tree - very difficult for David to do - but necessary because we will be away for much of the Christmas holiday. We put it up and Anna and Megan decorated it. Thank God, I didn't have to. David put up some lights outside. That is all we could muster. I can't even think about Matt's nutcracker collection this year. Too painful.

I baked some biscotti this week. In past years, my biscotti operation would be in full swing. I only made some this week because they were for the Foster teachers - our Moms in Touch group made them breakfast.

My friend, Maribeth, came over this week and we took a lovely swag to Matt's grave. Bless her heart for thinking of that - I couldn't order one from the florist. She just appeared with it and we took our girls together to put it on the grave. They were so cute - two preschoolers dancing on the graves. I am so grateful to her for doing that with me. How sad that I cannot buy him any presents. I tried to shop yesterday but I ended up walking up and down the aisles with a blank stare on my face. Two hours later, I had nothing bought. I hope the other kids understand, it is just too hard this year.

I found this poem on one of my grieving sites and it really describes how I am feeling.

SPECIAL HANDLING PLEASE

I was handed a package the other day.
It was wrapped securely to be mailed away
Attached to the outside as plain as could be
Was a simple note for all to see.

Please rush through the holiday season;
Too painful to open for any reason.
Contained within, find one broken heart-
Fragile, broken, falling apart.

Tried to go shopping the other day;
The hype of the season blew me away.

Sat down to write cards,
That was insane.
Couldn't find the list
Or think of my name.

People say,
"Come over, be of good cheer."
"Celebrate the holidays,
Prepare a New Year."

But my grief overwhelms me
Like waves in the sea.
Can they cope with my crying,
an unsettled me?

I don't have any holiday cheer.
Decorations, traditions, big family meal
I can't do this year.
Do you know how I feel?

Guilty and frustrated!
I've let everyone down!
Our holiday celebrations
used to be the best in town.

So just ship me away
Address unknown
When my grief is better
I might fly home.

author Mary J. Pinkava

Thanks for checking in. I hope you all had a chance to read the article in the Almanac that told about the Mt. Lebanon Percussion Ensemble's concert and song in honor of Matt. If not, here is the address:
http://www.thealmanac.net/secondary_pages/arts_top_stories.html

- Noelle

Sunday, December 01, 2002 at 09:30 AM (CST)

We are back from our Thanksgiving journey to North Carolina to visit David's step mother and sister and their families. As usual, the anticipation of the day was much worse than the actual day. I am now glad that we went, but we almost didn't go. When the dire weather predictions came in for our travel day, Wednesday, I started to have second thoughts. I didn't want to get stuck in bad weather and the way I had been feeling, I really didn't want to be around a lot of people. But David, of course, is a man of his word. He wouldn't let me back out.

So off we went to Charlotte. It was a beautiful travel day. We made it in record time. We had a nice visit. The actual day was nice but I couldn't help but feel sad as all the cousins ran outside and played. Matt would have been leading the pack. It was hard to see my nephew, Tommy, who is the same age. He even looks a bit like Matt.

The kids had a great time. It was nice to see Alex and Anna with their cousins. They get to see them very rarely. When they get together, they have so much fun. I made it through the dinner and fell apart once the dishes were done when I sat and actually thought about a year ago and what we were doing. We had hope then that he would get better. We finally had found something that made his fevers disappear. So much has changed.

Our journey back was a nightmare. The weather kept changing. We actually drove through blizzards, freezing rain, 40 mph winds, and even a total white-out. I could not see the road. I prayed to matt to keep us safe and I cannot believe that we were able to get through that! Later, I commented to David that with all the trucks in the road, not one was around when we were all over the highway. I really felt Matt with me as I was driving.

So here I am, back in my warm house. I am glad that we are flying to Mexico. That journey really scared me. I hope our trip to Mexico will be good for us. I learned from this trip that the pain and memories go with you where ever you go. You cannot "escape."

Thanks to everyone who sent a card, note or email this week. You all knew that we needed some "extra" special care this week. Thanks to all of Matt's friends who write to us. Your messages make us smile.

Today is Alex's 10th birthday. We are going out to dinner to celebrate. He looks more like Matt every day.

Happy Thanksgiving...we are most thankful for your prayers and support.

- Noelle

Sunday, November 24, 2002 at 09:17 PM (EST)

I know it has been a while since I updated but it has been a difficult couple of weeks. Thanksgiving is almost here and with it comes the memory of our Thanksgiving just one year ago that changed our lives forever. I can only be comforted knowing that Matt is not suffering this week. Last year, at this time, he was so sick. He was so scared and we were in a daze. My wonderful sister-in-law, Chris, was here to take care of us. She made a lovely turkey dinner and we ate in the lounge on the 8th floor of Children's Hospital. We gathered round a small, wooden table, thanking God that we were together and that Matt would be getting better soon. He was propped up in a hospital wheelchair, feeling pretty bad but with us nonetheless. Every memory of that day is so clear, so fresh.

Here we are now, preparing to spend our first holiday without him. It hurts so much. He loved these holidays. Just getting together with his cousins excited him so much. We will be spending time with some of these cousins - one who is the same age. I am not sure I will be able to stand it. I am going for my other kids. They need to have some celebration in their lives. Matt would want us to live.

When you sit down this week to Thanksgiving dinner with your families, please remember those who are grieving and have lost someone. Their holidays are so different now. Take a minute to be thankful for what you have.

In response to some of you who have been asking for the address of the fund, here it is:

Matthew Conover Memorial Fund
1394 Terrace Drive
Mt. Lebanon, Pa. 15228

This is a poem that I found on the Internet. Author is unknown. It expresses my thoughts tonight.

I Am a Mother......
I am a mother of a child
Who no longer is here with me
And yet my heart never forgets
My life as it once used to be

I can't forget my child
As some think I'm supposed to do
My child is part of my being
Same as yours is to you

The Holidays are the hardest time
It's the time the memories hurt most
It's hard for me to act normal
And be the Holiday host

It's tough being a parent
For anyone who becomes mom or dad
Be grateful that your child is alive
And your heart doesn't feel so sad

We who have lost a child
Are struggling each day of our lives
To get through the Holidays each year
Cuts like a sharpened knife

When part of us is missing
And our hearts have a scab that never heals
We cope the best way we know how
And hope you sense how we feel

And though your life is untouched
By tragedy this time of year
Accept us for what we endure
And why we lose some Holiday cheer

As you sit with your families this week
Give thanks for what you have
Be thankful you're all together
All we have are memories of the past

God Bless all of you this Thanksgiving week.

-- Noelle

Saturday, November 09, 2002 at 07:30 AM (CST)

It has been a difficult time for me. I tried to update the site a couple of times and just couldn't. The time of year, the change in the weather, the smell of the leaves, all contribute to memories of last year at this time. Smells are such a memory trigger. All I can think of is how much our lives have changed in just one short year. I miss Matt so much that I ache every day with a real, physical pain.

I met some very nice people recently. They are some other mothers that lost their children a long time ago. It is good for me to talk to them because I need to hear that their families survived, that their other children are ok. They told me about their children who have gone on to college, got married and have good careers. I hope that Megan, Alex and Anna will be able to live happy, productive lives. This is my greatest prayer right now.

I spent most of the last two weeks making sure that the kids have what they need. It is hard to tell whether their behavior is due to losing their brother or just because they are in a particular stage of development. I know they are feeling the loss so deeply. Megan and Matt were such good friends. They had a relationship that most siblings never have. They shared something very special. I know she is really missing their times together. I am so proud of her ability to focus, though. Her grades were quite impressive.

Alex misses Matt in a different way. He looked up to him and now has to be the only son. He tries to act just like Matt. He loves to wear his clothes. I want him to know that I love him just the way he is - that he does not have to be like Matt for me to love him. It is hard for him.

Anna talks about Matt all the time. We go to his grave very often and when we don't, she wants to know why we are not going today? When she sees me she says, "Are you sad about Matt, Mommy?" She is very perceptive. She is having a little trouble in school connecting with the other kids. I think that is because she is so attached to adults from the whole ordeal. I have been having playdates for her, something that is difficult for me right now, but so important for her.

It is so hard for me to describe how I have been feeling. I think the best word I can use is "disconnected." I feel like I see the whole world around me, my old life, my friends, my old activities, but I cannot seem to "connect" to any of it. I am different, and not the old me. I am not sure what I am supposed to do right now. I want to work, which I think I may be starting soon (thanks to someone who reads this website ;-) ). With the holidays quickly approaching, I really need to focus on something. The pain of this time of year is just too great to bear.

Thanks for continuing to check in on us. The phone calls and cards are really appreciated. I am sorry if I don't return all the calls. Sometimes, it is just too hard to dial the phone. Some of you are very persistent and for that, I am grateful. Thanks for all the messages on the site. I love them and read them sometimes more than once a day. It makes me feel so good to know that Matt was loved by everyone. He was a very special boy.

Fondly,

Noelle

Tuesday, October 29, 2002 at 08:29 PM (CST)

We all just returned from the Caring Place. It is a great place for us to go as a family to be with other families who have lost sons, daughters, sisters and brothers. Just seeing all those people in the same room with us and knowing that they are also feeling like we do is somehow comforting. Hearing their stories is emotionally draining, but good too. I feel like they know Matt and we somehow, know their children.

The dreaded October 26 came and went. As usual, the anticipation of the day is much harder than the actual day. Last week was very difficult for me. I spent each day immersed in memories of Matt. By Friday, I was emotionally and physically drained. So were the children. Alex actually was physically ill too.

Matt's gravestone actually was delivered on Friday. How sadly ironic that it arrived one year to the date the disease arrived? The stone is beautiful - very large and simple. You can see it from many places in the cemetary. It provides a very fitting tribute to our beloved son and brother.

On Saturday, when we couldn't take any more pain, we left to go to the cabin. Alex had a hockey game in Harmarville, which is about halfway between here and there. It was fun to watch Alex play. He was playing offense and looked like he was enjoying himself. We got to the cabin in time for dinner. After dinner and some funtime, we all watch Mr. Deeds, a really cute movie. Sunday, we hiked through the woods to breakfast, came back and raked leaves and made a campfire. What fun. I actually got away by myself for a time to ride through the forest and appreciate God's beauty everywhere. The leaves are magnificent. As usual, we had a wonderful time there and spent another anniversary doing something Matt would have loved. I am so grateful to have that place to escape to.

Back here in the reality we call everyday life, I am once again surrounded by the memories of Matt. I miss him so much. Halloween brings some great memories of him. Of course, he got very excited to go trick or treating. I am trying to get past some of the morbid decorations out there, though. I love the fall season and pumpkin decorations. The skeletons and grave markers are really upsetting this year. I wonder if folks even realize how painful these are for those of us who have just lost someone? It is wonderful to hear that the Foster Halloween Fest raised over $300 for Matt's fund by selling pizza and pop. Thanks to all those who helped and Abby Kirkland for coordinating it.

The holidays are looming ahead. I wish I could go to a deserted island until January. It is so hard to even think about them. One thing that is very nice is that the Mt. Lebanon Percussion Ensemble has decided to commision a song - Angels We Have Heard on High - to be performed in Matt's memory at their holiday concert. Matt would have been honored. We plan to go to the concert and are looking forward to hearing it performed.

If you happen to go by Mellon School and notice that there is a new tree in the front yard - it is a Kwanzon Cherry Tree that we planted to honor Matt. In the Spring, we will be installing a bench under it so everyone can enjoy its beauty. Thanks to Dr. Lordon and staff for allowing us to honor Matt in this way.

So, this is my new life. I spend it thinking of Matt and thinking of things that I can do that will honor and preserve the short life he lived. No job yet. Only many coffee dates. I can't tell you all that this is getting any easier. Instead, it is almost harder - the numbness wears off each day and it is replaced with a profound sense of loss. I know that there are many out there who are suffering his loss with us. Thank you for sharing your precious memories. They will help us not to forget what a truly special, kind person he was.

- Noelle

Friday, October 18, 2002 at 09:33 PM (CDT)

Another week passes. It goes so quickly - I feel the end of the month looming. October 26 will mark one year ago that Matt discovered a lump under his arm. "Do you think it's cancer, Mom?", he said. "Matthew!", I screamed. "No! Don't be so dramatic. Of course, it's not cancer. It's probably an infection." I replay that conversation over and over. How long did he know that that lump was there? Could it have really appeared so suddenly? And how could he have been in Stage IV when we discovered it and diagnosed it within a week?

Another child passed away today on 8 North. He was only 10 and had been sick for five long years. His mother went to the far corners of the world - Sweden, Los Angeles, Chicago to look for new treatments. She fought for him, long and hard. She showed me how to look things up on the Internet. What good did it do either one of us and our kids? I hate this disease.

Matt's Memorial Fund is growing, thanks to all of you. We are pursuing a 501-C-3 status, allowing us to collect donations and have them be tax-deductible. One of the things we want to do with some of the money, in addition to donating to cancer research and 8 North, is start a scholarship for a graduating percussion student. Matt loved percussion and would want some of the money to benefit a fellow percussionist. We hope to hold a fund raiser to benefit the fund.

We purchased a cherry tree this week to be placed in front of Mellon Middle School in Matt's memory. It will be a nice place for the kids to stop, rest awhile and think about Matt. In the Spring, we will place a bench there with a plaque on it also. Thanks to Kevin Lordon for allowing us to do this.
Someone donated the money anonymously to purchase the tree. We are so grateful.

I spent this week talking about Matt a lot to friends, strangers and anyone who would listen. I think I am beginning to realize that his 12 years with us were a gift. I am grateful to God for the gift of Matt. I am also grateful that He is showing me the ways in which Matt was a gift to others as well. It makes me feel so proud that he was my son. I was able to look at pictures of him this week. It is the first time since the funeral that I have been able to spend any time looking at him. He was a pretty good looking kid, I have to admit.

Alex had a bit of a trauma this week. He ran into another child in his music class and four of his teeth were damaged. Two permanent teeth were cracked, including his front tooth, and two were knocked loose. We will have to wait two weeks before we find out what the permanent damage will be. Meanwhile, he is eating soft food for a week and out of gym class for two (perhaps they should have excused him from music class!) What a trooper he was, though!

We are keeping on keeping on. That is all we can do. Our days are very busy, but not a minute goes by that I don't think of Matt. He is my first thought of the day and my last. Please continue to pray for us. We need them now as much as ever.

- Noelle

Thursday, October 10, 2002 at 06:01 PM (CDT)

It has been a week since I updated the site. It is good to hear from all of Matt's firends who write with their memories of him. Sometimes, I feel like you are talking about a boy I didn;t even know! I am glad that he was so well liked. You are a really great group of kids. Thanks for taking time to send a note.

This past week was difficult, as most have been. The numbness has all but disappeared, giving way to profound sadness as the "reality" of the situation sinks in. I spent time reading some of Matt's writing, a gift from Mr. Hines, his last English teacher. At this time last year, Matt was going full speed ahead with school work. He was a very good writer. I laugh at his stories, as they were so creative. One of the most touching was a personal narrative, entitled "My sister, the monster." Oh how I laughed when he described little Miss Anna to a "T." She will get a kick out of it someday.

We are waiting, anxiously, for Matt's headstone. It should be in any time now. His gravesite is so barren and ugly. Anna and I go there almost every day, but it is not very pretty. I can't wait until we get it fixed up and it looks nice. Matt would want it neat and tidy!

I continue to drink coffee and eat many lunches out. Thanks to all of you, I am well fed and watered, however, I am sure they will be winding down soon. I NEED to find a job. Unfortunately, the technical writing field is not very busy right now. I am honestly thinking about doing something else. I really need to get my mind and body out of the house.

The children are doing fine. They seem to be handling school and all the pressure pretty well. We really miss Matt around the house, though. He was a pretty lively part of our family. We did get a new kitten. She is only 6 weeks old and looks like a snowball that rolled in the mud! Anna calls her "Snowball" and David calls her "Dirtball." I guess we will all settle on a name of "Slush" for her. She is a cutie and has brought a little bit of happiness into our sad house.

Thanks for checking on us, sharing with us, and please continue to hold us in your prayers.

- Noelle

Wednesday, October 02, 2002 at 09:31 PM (EDT)

We just returned from the Leukemia and Lymphoma Society's Light the Night Walk at Heinz Field. This is an annual fundraiser held to raise awareness about cancers of the blood. We were there because of a very special group of youngsters from Mellon Middle School. These bright, caring children and their teachers decided to raise money for this event and walk in honor of Matt. Imagine our feelings as we saw three busloads of young people, dressed in the familiar blue and gold, arriving at the gate. Some of them had t-shirts on that carried Matt's initials, MGC on the front, and "Light the Night, Matt Conover, In Our Hearts Forever" on the back. Emily McCloud, one of Matt's classmates, took it upon herself to create these t-shirts, took orders from the rest of the class, and sold them, raising a profit for Matt's Fund. What a great idea they were.

We are so touched by what Matt's classmates have done. They raised quite a bit of money for the Society, but they also took time out to honor one of their fellow classmates and friends. We were so proud that they were there and we know that Matt would have been honored. In fact, we joked that he probably would be saying, "All this for me?"

So to all of you who were there tonight, to those who couldn't come but sent a donation, and to the administrators, teachers and parents who helped them, our heartfelt thanks. We couldn't be more delighted, honored or touched. We are proud of all of you and proud to live in such a caring place.

On the drive home from the Walk, we turned on the radio. The song, To Where You Are, by Josh Groban, was playing. This is the song we played at Matt's funeral. We all realized that it was Matt's way of telling us that he was with us tonight. His spirit was alive in all those terrific kids.

Saturday, September 28, 2002 at 12:57 PM (CDT)

Well another week has passed. Matt's memories are everywhere. Every time I see one of his friends I think of him. We attended the Mt. Lebanon Band Festival last Saturday night to support Megan. It was difficult becasue the eighth grade band was there. Matt's friends waved to us. It was good to see them. I could almost see Matt wiggling in the drum line, bouncing up and down, all excited about being at the stadium. He was eagerly anticipating being on the drum line. I know he watching. It was a beautiful evening, with a full moon and bright stars. It was hard to watch but we got through it. We got to see many people there. Even that is getting easier.

We are eager to participate next Wednesday evening in the Leukemia and Lymphoma Society's Light the Night Walk in Heinz Field. Two busloads of Matt's classmates from Mellon have raised money and are walking in his honor. We are so honored that they are doing this. We will be there too, walking and thinking of our beloved Matt.
Oh how the change in weather and the smell in the air bring back memories of last year at this time. Matt was having a great seventh grade year. His midterms showed straight A's. He was eager to try out for basketball and was beginning to act like a teenager! Soon, though, our life would forever be changed. I am dreading the next few months. They remind me of all the firsts - the first diagnosis, the first treatment, Thanksgiving in the hospital, days and nights filled with worry. I pray for strength to get us through this season into the next. It will be hard.

Thanks to all the kids who are writing about their memories of Matt. Every one is so special. I love to hear about him. We have received some anonymous donations to go toward something that we can put at Mellon in Matt's memory. If anyone has any suggestions, we would love to hear about them. We are thinking of a bench or a tree in some spot where the kids can go just to remember him.

I am still drinking coffee. Thanks to all of you who continue to call. You are helping me get through each day. I am also grateful to all of you who still send cards. There has not been a day since Matt died that we have not received a card in the mail. It is so important to us that you all continue to be there for us each and every day. God bless you all.

- Noelle

Saturday, September 21, 2002 at 07:33 AM (CDT)

Another week has passed...the feelings of sadness and grief are still with us. It is so hard to believe that Matt is not coming back. I am keeping very busy, hoping that somehow I will be able to forget the pain for one minute. It doesn't work that way, though. The pain follows you around, wherever you go. People are so caring. Many are calling me and inviting me for "coffee." Well, let's just say that I have had enough coffee to fill a tank! I do like seeing folks and catching up. It does keep my mind occupied, too. I think I am booking these "coffee dates" into November right now.

The children are doing well. Megan is just like me. She is trying to keep very busy. Between marching band, orchestra, two softball teams and a ton of homework, we never see her. Either she is in her room or not here. Alex is quite busy too. He has several good friends and he spends a lot of time with them. He also has hockey, soccer and church activities to keep him occupied. Anna loves preschool. She walks right in, passes all the children who are clinging to their parents and crying, and sits down at the painting table. "Where are my paints?", she demands. She doesn't even look back. That is the fourth child for you!

David and I are seeing a grief counselor. She is very good. It helps to be able to talk together about our grief and spend at least one hour talking to each other. Some weeks, it is the only hour we have talked together. David is busy at work and I am finishing my project this week at Highmark. I have started to look for another job, so if anyone knows anyone looking for a technical writer, please let me know!

It continues to be difficult to be out and about in Mt. Lebanon. I have avoided going to the store as much as possible. I still cannot go to the schools. It hurts too much to see all the kids. I wanted to see Megan perform at the football game but it is too hard to go yet. I guess in time it will get easier. We have returned to church but only to the "early" service which is new and doesn't hold memories of the past.

Thanks for all the cards, letters, notes, calls, etc. We know that you all care very much. It is hard to return the calls but please know that in time, I will be able to talk more. The best thing that everyone can do is to remember Matt. I don't want anyone to ever forget him and what a special kid he was. Please mention him when you see us. It really helps to hear his name. It makes me smile when the kids write on this site of their memories of Matt. It makes him real and makes me feel like he touched a lot of people.

- Noelle

Saturday, September 14, 2002 at 09:42 PM (CDT)

Another week passed...it felt like an eternity and yet went so quickly. I am struggling to get through each day but the week seems to pass quickly. I don't want time to pass because I know that it puts me further away from Matt yet I want it to pass quickly because it makes me closer to being with him again. Does any of this make sense?

It was a very difficult week for me. September 11 was much harder than I ever imagined. I think it was hard because we were together as a family on that day. On that day, we pulled together and stayed in one room, watching TV and I remember saying, "today our lives have changed forever." How I remember those words. Our lives did change on that day and then changed again on our own personal 9-11, November 15, the day Matt was diagnosed. I go over that day in my head every day. If only...what if...how could it be? The numbness is definitely wearing off. Replacing it is a deep sense of longing, hollowness, sadness. I watched the families on TV, grieving for their loved ones, and I thought, "me too."

Friday was picture day. I remember Matt asked me last year to fix his hair just right for his picture. Little did I know that it would be the picture on his casket. Such a handsome boy. Alex looks more and more like him every day. We agreed on a shirt for him to wear and then suddenly, he ran downstairs. When he came back, he was clutching one of Matt's shirts. I recognized it - it was the shirt Matt wore last year for his picture. I let him wear it. He looked so proud. I know Matt doesn't mind.

As I move from day to day, barely managing to get myself out of bed and into the shower, I try not to think. Thinking hurts too much. I try not to feel either. I just try to get through one minute, then the next...Right now, I am exhausted from just functioning. I hope, somehow, that next week will be a little bit easier.

- Noelle

Saturday, September 07, 2002 at 08:48 PM (CDT)

Two months have passed. We marked another anniversary on Thursday - two months ago, Matt left us. This was a difficult week. The "numbness" is starting to wear off and reality has hit. The other kids are back in school now and their routines are settling in. My heart phsically aches for Matt every day. I have learned how to grieve in a way that does not interrupt the schedules of my family. Usually, when everyone has been fed and the dog walked, and homework and practicing are complete, and Anna is in bed, then I am able to "fall apart." It is my time to sit and really feel what has happened to us. David is wonderful at these times. He usually just holds me while I cry. I guess crying is good but crying makes me feel out of control. I look all around at the beautiful pictures of Matt and I long to hold him, talk with him or just be near him again.

We made reservations this week to spend Christmas in Mexico with Greg and Chris. I am so relieved that we will not be here for the holidays. It takes some of the stress away. We will leave on December 23 and return on January 4. The children are glad that they will see their cousins and we are anxious to see Mexico.

I am still working but the job will wind down soon. While I have enjoyed going to work and getting away from the house two days a week, the job is not exactly a fit for me. I am looking for another job that better fits my skills. I have a couple of interviews next week. I hope I find a job where I can feel challenged enough to be able to focus the entire day so at least twice a week, I can rest my mind. The thoughts that fill my mind are so exhausting. I see several "scenes" over and over from the ICU. I wish I could only "see" the good memories. I know that will come with time, though, because I only remember the good things about my mom.

I went to Matt's grave every day this week with Anna. Watching her dance among the headstones is very comforting. She is so real and asks a million questions. There were flowers everywhere from lots of Matt's classmates. I am glad that his friends are remembering him. I want to keep his memory alive forever.

The children are coping pretty well. Megan is very busy with Marching band and her violin commitments. She does seem to like her teachers which is a great thing this year. Alex can't go wrong with his teacher - she is the best. His friends are great too, and he has spent almost every day after school with someone. He started hockey and soccer this week, too, so he is keeping very busy. We all start at the Caring Place for Grieving Families on October 1. We are all looking forward to going there. We will be with at least three other families who lost children or siblings. We have heard nothing but good things about this place.

David is holding up. I worry about him the most because he seems to hold so much in. He is such a rock and has seen so much pain in his life that he has better coping skills than most of us. I still worry, though, and wish that he would "connect" with someone who can help him get through this. Even though, he is not like me and I shouldn't think he would need what I need.

I spent time this week with people who really understand what we are going through. They also lost children. It is very comforting to talk to them because they know what this pain feels like yet they are role models because they have survived intact. Thank you. Thanks to all of you who have been calling or writing. We know that you all care.

- Noelle

Friday, August 30, 2002 at 09:46 PM (CDT)

What an exhausting week. We began with Day +100 and ended with Matt's memorial service today at Children's Hospital. Every month they honor the children that died the previous month. Today they honored 12 children. It is hard to imagine that every month at least 12 children die at that hospital. That is a lot of children every year. Their families looked so sad too. I grieve for all the families. It was so hard to go back to the hospital. David took the day off and we went together. Anna and Megan came. Alex didn't want to so we didn't make him. Pastor Freeman did the service. He was wonderful, as usual. I cried more at today's service than I did at Matt's Celebration service. It was hard and yet, I am glad we went. It is where Matt spent his last moments on this earth. It is where I got to say goodbye to him and feel the last beat of his heart. It will always hold special memories of him for me.

Tonight, we went to the Lebo football game. I knew it would be hard but we went to support Megan on her first night in the Marching Band. She looked so happy, with her friends. It was hard for me to see all Matt's friends there. They looked so happy and carefree - like Matt did once. The drum line played and they sounded great. He would have been on that drum line next year. We saw many folks who smiled and said hello. Thank you for acting so normal around us. We need to feel like we "fit" in again.

I went through the motions this week. I got the kids ready for school, and after school, I waited for Matt to come walking down the street - hoping that if Anna and I waited long enough on the swing, he would come. I wish someone could tell me that I won't feel like this forever. But I know I will. I feel such emptiness inside. So many people ask me how I am. How am I? I am awful - just awful. People say how strong I am. I am not strong. I am weak. People say how much I did for him. I am powerless. I am mad. I look around at all the healthy youngsters and I ask why. Why did this happen to us? I try to find solace from all of you who tell me what an impact Matt had on your lives. But I am selfish - I want my son back.

Thank you to all who made the journey a little easier for me this week. You all reached out in so many ways - phone calls to check on me, visits, sending me encouraging email and messages on the site, meeting me to discuss my book plans, taking me out to breakfast after the "drop off" at Foster, taking me out to see Mamma Mia, coming to his service at the hospital and sitting with us at the game tonight. Because of all of you, I can get myself out of bed in the morning and go on. I am truly blessed.

Love,
Noelle

Sunday, August 25, 2002 at 07:13 PM (CDT)

Hi Matt,
It's Mom. I am writing to you on the eve of the first night of school. I am writing to you because I miss you so much and by writing to you it makes me feel like you are here but just away for awhile. I would like to pretend that you are just "away" or perhaps, that you have just gone off to college like so many teenagers are doing this week. I know what those mothers are feeling. I know that many of them are trying to deal with empty nests of their own. We have a space here in our nest that is "empty."

We went to the cabin this weekend. It makes me so happy to go there. When I look up into the night sky there, I see millions of stars. I feel like I can talk to you there and somehow, it is easier for you to hear me. When we go there, things are a little more relaxed and we spend our entire time up there together as a family. I like to have the other kids close to me now. We took friends for Alex and Megan. They enjoyed showing their friends the places you loved so much like Bear Rocks, the creek, the river and the Farmer's Inn. It was nice to see them laughing with their friends. That is the only time they laugh anymore. There is not much laughing in our house. When I am at the cabin, I have time to think about you and how special you were. You were such a wonderful boy. You always saw the positive side of things and your smile always brightened my day.

Today is a special day, Matt. It is Day 100. You remember how special this day was to us, don't you? Today marks the 100th day after your bone marrow transplant. You would have been able to do many things after today. You would have been able to go outside, swim in a pool, be with your friends, eat in a restaurant, and most of all, go to school. We circled this day on every calendar in our house. It is still there, in red, blazing for all to see. I am sorry, son, that you were not able to realize this important goal. You worked so hard toward it and were so deserving of it. It is a bittersweet day for us.

Tomorrow is the first day of school. This evening holds so many tender memories for me. You were always busily preparing your organizer and clothes on this evening. Even last year, you were busy with the preparations for the big day. Tomorrow, I will miss you more than ever. I will miss taking your picture in front of our flower bed - a picture I have of you for the last eight years - from your first day of kindergarten until your first day of seventh grade. You will be there in hearts, son, and we will take a moment tomorrow morning to remember you on yet another first day of school - the first of many without you. I will be walking Alex into school and Anna is so excited to be going to "Alex's school."

Happy Day +100, Matt. I wish you were here with us but, I have to remember that you are in a place where you are out of pain, you are running and swimming, and laughing and enjoying yourself. I know that. I know you are in a better place. I just wish we were together.

Love,

Mom

Tuesday, August 20, 2002 at 09:59 PM (CDT)

It is hard to believe that six weeks have passed since Matt's death. They have gone by quickly and yet, the day he died is still so fresh in my mind. I go over it every single day. As summer ends and the fall begins, a cascade of memories starts for me. The first day of school, the day Matt found his lump, the day he was diagnosed, our Thanksgiving in the hospital and Christmas. This was always my favorite time of the year. Ever since I was a child, September brought eager anticipation, the thrill of "new" things, the crisp weather, the holidays. Things that I once took so much pleasure in are looming ahead of me, almost taunting me. I know we will get through them but I don't look forward to the pain.

I went to Matt's grave yesterday. It doesn't look as bad as I imagined. Someone planted a yellow mum in the center. I took Anna with me. She played among the headstones, stopped to pick flowers, jumped from one stone to the next in her carefree, light-hearted way. It was good to go with her. She always makes me laugh. There is a marker there now and that made me feel better. Somehow I couldn't help but think of Pastor Freeman's words, "it is just a wrapper." Matt lives in my heart now.

We feel like strangers in a strange world. I go to work and go through the motions but do not really enjoy it. I go through the motions of everyday life but cannot tell you where I have been or where I need to go. Often times, it is Anna that brings me back to "earth" with her endless questions and conversation. Some times I am too tired or just too sad to answer her but she is relentless. I am grateful for all of you who keep calling. One friend said today. "I am going to just keep calling you and calling you until you are sick of me." It is good to hear from you.

I will continue to keep as busy as possible. If I keep running, the emotions, memories, grief...won't get to me. I am pursuing the idea of converting much of this site into a book. I am following some leads that friends have provided. I think that writing a book about our experience will be good for me. It will also be a tribute to Matt. That is what I want most. I want to honor the boy that showed us all how to be courageous, brave, quiet, faithful and full of hope. I am so proud to be his mom.

- Noelle

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Wednesday, August 14, 2002 at 12:40 PM (CDT)

Thanks to all of you who wrote to tell us you are reading the site. It is good to hear from you. This site is really important to us and it is clearly, a big part of my life right now. I feel compelled to write because it helps me sort through my feelings. There is no "easy" way to deal with Matt's death. He is everywhere. I go from room to room in the house and feel his presence. I decided that the only way I can get through this is to keep running as fast as I can. So, I am keeping very busy. For those of you who have tried to call, I am sorry if you get the machine. I try not to be home when it is just Anna and me. It is too hard.

Today, Alex started hockey camp. I drove he and a friend to Canonsburg and thought Anna and I would shop while they were there. It seemed pretty benign - a trip to K-Mart to pick up a few items. I never dreamed that the emotions would come so quickly and unexpectedly. There I was, crying at the checkout, poor Anna - confused and scared. What opened the floodgates? Seeing all the pens, pencils and school supplies. This was one of Matt's favorite times of the year - back to school. He loved shopping for school supplies - touching all the pens and pencils - deciding what type of "organizer" he should get. Then, bringing it all home and putting it all together. It was way too much for me. We quickly came home. And here I am...in the midst of all the memories.

I sent a scout out to Matt's gravesite yesterday (thanks Franci). I really want to go. I think it will be a peaceful spot. It isn't ready yet, though. The grass is sparse and there wasn't even a marker there. Going to the cabin brings me peace. I can sit up there and look up at the stars and know that Matt is looking down on me. We will try to make it up there a few more times before the kids get too busy with activities.

I am dreading the start of school. The "normal" things that would have brought comfort seem insurmountable. I fear the walk into Foster on the first day - so many familiar faces - all not knowing what to say or how to say it. Alex, of course, wants me to walk him in. If I do it, it will be for him. Knowing that we have no connection to Mellon this year is sad. I will miss all the staff and teachers who were such a big part of our lives. I am happy for Megan because she will have a better year this year - we have tried to be sure of it. She already is enjoying being in the marching band and we will support her at the Friday night games.

I know you are all reading this and are experiencing the pain and grief with us. Thank you for caring. This will not be easy. It is a roller coaster - each and every day. I am so grateful for those of you who aren't afraid to ride it with us.

-- Noelle

Saturday, August 10, 2002 at 07:47 AM (CDT)

It has been a few days since I posted an update but things are really the same here. It is true what people say about the death of a child...your own life pretty much stops. I have spent all week feeling so "guilty." I feel guilty that I am alive, that I told him we would fight the battle together - and he died - and I lived. I feel so guilty that I am "enjoying" normal things like going out to dinner (something he adored), seeing movies, going places, just breathing...The guilt is waking me up at night. It is with me in the morning.

Matt and I were together in the battle for over nine months. I never left his side at the hospital. I used to tell him we would beat the cancer together. I told him that he needed to stay positive - to believe that he would be cured - that God would heal him. I feel like I let him down. My mind knows that Matt is in a better place, that he is no longer in any pain, but I miss him so much...

I hope that time will help. I am not sure it has yet. I seem to have gotten worse in the last few weeks. I was ok in the beginning - sort of going on adrenaline. There were so many people (like my sister-in-law) all around me. Now, when I am alone, I am the worst. Today, I got an email from the wife of a friend with whom I have worked for many years. I didn't know their story - but I knew they lost a child. The email was so touching and went right to my heart. I was so relieved. Finally, someone who understands the anguish. That is what it is too - a deep dark pain in the pit of your stomach. An aching heart. I don't feel like doing anything. I know I must, though, for the sake of my other children.

Anna is good for me. She FORCES me to get up and get going. She asks about Matt every day. She wants to go to Heaven to see him. She wants Jesus to send him back here because he is her "brother, and I miss him so much mommy..." How do you deal with that? She is so real.

Megan and Alex are doing better. I can see that they miss Matt but their lives are full and they are surrounded by friends and activities. David has his work and he seems to focus well when he is there. I am glad I started a part-time job - it does help to get my mind off things. I am the worst when I am in this house, surrounded by his pictures, his things, and so many memories.

Thanks to all of you who have been so faithful to us in this journey. We could not have survived without you. To all who made dinner, watched our kids, ran errands, coordinated schedules, helped financially or were just there to listen - thank you. I know that there are over a hundred people a day checking this site. I can see the statistics. If you visit, please sign and let us know. We would love to hear from you.


-- Noelle

Monday, August 05, 2002 at 08:08 PM (CDT)

Dear Matt,

We are home. The beach was a great place for us to be together as a family. We missed you so much but we needed to be together to create some new family memories. Now that we are back home I realize how hard it is for me to be in this house without you. Every room I go into contains several pictures of you. The pictures are great, but seeing them just makes me long to have you here. I may have to put some of them away just so I can function. I can't spend the whole day crying.

Megan started band camp today. Yes, she is going to be in the marching band. It was hard for me because the first day was held at Mellon. I walked down those halls today for the first time since you died. There were memories of you everywhere. Then I saw the drum line. Their cadences reminded me of you and how well you played those drums. Megan is going to play the clarinet. She wants to be a part of the band and will work very hard to relearn the clarinet after all these years. I got to see Dr. Lordon for awhile too. He is such a good man - I can tell he misses you too.

I got a part-time job today. I will be working for Highmark again. My job is temporary - helping them write procedures in the Medicare department. It will be good for me to get out of this house at least two days a week. Goompy will watch Anna. They are both excited about that. Alex is busy with his friends. He starts a hockey camp next week where he will meet Mario Lemieux. You already met him - remember? How great that was.

Daddy and I will celebrate our anniversary this week - 21 years. Hard to believe. We miss you so much it is hard to be happy about anything. I am glad that we have each other. Daddy misses you terribly. You were so much alike. He didn't have anyone to build elaborate structures with at the beach.

I love you Matt. It was an honor to be your mom. You made my job an easy one. I am proud of you.

Hugs and Kisses,

Mom

Tuesday, July 30, 2002 at 08:50 AM (CDT)

From Bethany Beach,

Matt...
You should see the waves. They are huge. Alex, of course, is the surfer dude and won't get out of the ocean. Megan and Mom are happy to sit on the beach and bake. Daddy has become Anna's best buddy and she won't let go of him for one minute. We were talking about you last night - saying that you wouldn't really like the big waves - that you would prefer to be alongside the ocean, hunting for some shells and sand crabs. The weather has been very hot - 98 degress yesterday - so hot that you havve to wear sandals onthe sand or your feet would burn.

Our house is nice - right by the town. Just like at Stone Harbor. There is an ice cream place, a coffee place for Mom, and even an Internet cafe where we can update your site. Thanks to Pastor Bob, we hung out at the Sea Colony pool yesterday - very nice.

We miss you, son. We are still trying to figure out how to be a family of five. I keep waiting to see you running toward me on the beach. I know you are with us, though. We have had beautiful, sunny days the whole time. Today, the Post Gazette printed a beautiful story about you, our family, and CaringBridge. You would be proud. We love you and miss you, Matt.

Take care,
Love,
Mom

To see the article: http://www.post-gazette.com/healthscience/20020730hcaring3.asp

Friday, July 26, 2002 at 06:57 AM (CDT)

Hey Matt, it's mom. We miss you so much. This house is so empty without you in it. We are getting ready to go to the beach. We decided to go to Bethany Beach this year because we couldn't go to Stone Harbor without you. We were remembering all the times on vacation when you were so excited to just be there. Going to the beach, the ice cream store, the boardwalk in Wildwood, throwing the baseball in the sand, riding your bike into town. They are good memories, but our heart aches for you to be here with us. We need to get away so we can learn to be a family again without you here.

One of the things that makes us so happy is hearing different stories about you. People have been sharing them with us. We love to hear them and it makes us smile. We want more people to write in the guestbook and share their memories. Some of your friends have started doing that. Somehow, remembering makes the pain a little easier to bear.

We love you, sweetie. We hope you are all right up there. We think you are. We are the ones who have to suffer now. You are free.

- Mom

Sunday, July 21, 2002 at 03:29 PM (CDT)

It is hard to believe that it has been two weeks and two days since Matt's death. Our time has been filled with sweet and tender moments of reflection, emotion and sadness. David returned to work last week. Alex and Megan are both playing travel ball so they are very busy. Noelle and Chris traveled to Grove City (Chris' hometown) for a visit and drove to Beckley, West Virginia one day to drop off Katelyn, Greg and Chris' daughter, with a friend who drove up from North Carolina. Katelyn wanted to see her old friends. I spent most of my time on the road listening to the tape of Matt's service. It is filled with such hope and peace for me.

We received terrible news on Friday. Our dear friend, Shayne Tetrault, a lovely 7 year old who usually was down the hall from us on 8North, passed away from his terrible illness. The same day, another little girl, An Zhao, 12 years old, daughter of a coworker of David's, passed away from cancer at Children's in the ICU. These two deaths are so unfair. So many children dying so young. It is really sad.

We are so happy that so many of you have chosen to donate to Matt's memorial fund. The amount grows each day and we are exploring some of the possible uses of the money now. Thank you for your generosity. Matt would be so happy to know that he can make a difference.

The Post Gazette is doing a story on Tuesday, July 30, in the Health section, about Matt and the Caring Bridge Web Site. They were so intrigued about this site and how we were able to communicate with all of you that they wanted to spread the word. I hope that families will benefit from this article if they have loved ones who are ill.

We will keep updating the web site for a few more weeks. If you wish to donate to Matt's memorial fund, send your contributions to:

The Matt Conover Memorial Fund
1394 Terrace Drive
Mt. Lebanon, Pa. 15228

Thank you. We are truly blessed to have your support.

- Noelle

Sunday, July 14, 2002 at 04:35 PM (CDT)

Happy Birthday, Matthew!

Hey Matt - it is mom. We just got back from the cabin. It was a good place for us to be this weekend. Rambling around this house was too much to bear for dad and me. We took Uncle Greg, Aunt Chris and their kids to the cabin and showed them the spots that you enjoyed so much. At first, it was very hard to be there. Megan didn't want to go, but after a while, it was like you were there with us.

The cabin is pretty in the summer. We built a huge campfire last night. It was so high, it almost lit the trees on fire. You know your dad and his brother around a fire! I was ready with the phone to call 911! We roasted marshmallows and made s'mores. I know you would have been bouncing all around that fire last night.

We went to Bear Rocks, too. Anna climbed up a rock all by herself. Everyone made fun of mom because I couldn't get up even the littlest rock. You would have been laughing the hardest. We went to the Farmer's Inn, too. We had brunch there to celebrate your birthday. Anna had fun petting the animals.

We spent this afternoon in the Clarion River. Everyone enjoyed the sunshine and the beautiful clouds in the sky made me think of you. We miss you, Matt. You are everywhere around us. We listened to your wonderful Celebration of Life service on the way home. The music makes me so happy. I cannot cry when I think of those songs.

Happy birthday, sweet boy. I hope you are enjoying a very big birthday party in heaven today. We ache for you to be here with us.

Love,

Mom

Friday, July 12, 2002 at 01:05 PM (CDT)

Hi Matt. It's dad. Although each day is little easier, my heart still has a large hole in it. We love you so much, and miss your smile and your optimism. It's hard to believe it was a week ago today that you left us. How is heaven?

We've been getting so many cards these past few days - I think the mailman is going to be on disability. They have been uplifting and helpful to us. We've also run into a number of your friends who are also missing you terribly. I tell them that they each now have a piece of you in them, and to carry it and express it this coming school year.

We're collecting a nice amount for your memorial fund. We're still not sure exactly what we will use it for - there are so many needs for the oncology unit, the patients, and their parents. How about some more computers? You sure enjoyed having them available for your games, and it was always a chore to round one up when you went in for a round of chemo, and were disappointed if they were all in use. Maybe a parent bathroom and shower? Mom would have liked that! You know that the medical care you got there was the best - the nurses, doctors, support staff were all great. Becca, Gayle, and Dennis who manned the "psycho-social" front (as mom terms it!) were also fantastic. Mom thinks they could use more support, especially given the tight fiscal times of hospitals these days, since they are always the ones to have their budget cut. We couldn't have managed without their help. If you want to contribute, send a check made out to the "Matthew Conover Memorial Fund", and mail it to:

Matthew Conover Memorial Fund
c/o Karen Cullen
1394 Terrace Drive
Mt Lebanon, PA 15228

I know how much you liked to help others Matt, and know how much you found 8 North to be your home-away-from -home, so I know you're smiling about this opportunity!

Love,
Dad

Tuesday, July 09, 2002 at 10:42 AM (EDT)

Dear Matt,

It's mom. It's my turn to write. Daddy has taken over my duties lately because it has been so hard for me. I miss you so much. Everywhere I look, I see memories of you. I wish you were here.

Your funeral was amazing yesterday. They say there were over 1400 people there. Can you imagine? I felt your presence everywhere. I got to meet most of your friends. They were very sad.

The music was so uplifting. Megan picked each piece herself. The praise team did an awesome job and when I was singing, I couldn't cry. Remember when I told you I would sing the "hero" song? Well, Mrs. Condeluci did a much better job. Megan's violin teacher, Ramona, played your favorite Disney song too.

Many people talked about you. Everyone said that they remember you smiling. You were always smiling. I loved that about you. Every one of your teachers, from preschool to middle school came. Even your principals came. Each one of them told me how much they enjoyed having you. You were truly a special kid. Becca shared some of our memories from the hospital. She made me laugh when she talked about you. Alison shared some stories about visiting you in the hospital.

It was a beautiful day, Matt. The sun was shining and the sky was blue. Your final resting place is in a beautiful spot in the cemetary. I will be there to visit you soon. You will always be a part of my heart. It was a privilege to be your mom. You always made it easy. Every time I asked you, "You know I love you, don't you?", you always replied, "I know, mom." I do love you and always will.

- Mom

Sunday, July 07, 2002 at 08:11 PM (CDT)

Hey Matt. It's Dad. I just wanted to say how much I miss you.

We had a lot of company today. Your aunts, uncles and cousins were all here. Although there were so many people around, I felt pretty lonely. It just wasn't the same without your smiling face.

I ran across your baseball glove in the garage yesterday and I just lost it. It's happened a lot these past two days. You are everywhere here. Yesterday we arranged your funeral and celebration for tomorrow. Although it was very hard, it went better than I expected. I think you will like it. Megan helped a lot in putting it all together. She sure knows you. We got a 3 plots at the cemetary - one for you in the middle and one for mom and me right next to you. They are under the shade of two trees.

Many called you "brave". I think brave is not quite right. Brave comes across as too macho, as too determined. No, you were just at peace with who you were and who God is. You rested in that knowledge, and were embraced by that comfort throughout your journey.

Matt, you had a real sense of family, and you were a strong glue for us. You loved our family vacations, our family outings, and these family get-togethers. You brokered peace many times. You also had this same strong sense with your friends. With your classmates. In your public battle these last few months you also managed to convey that to your community. These sentiments were echoed over and over again by many of your and our friends. We all revisited our priorities, our family, our relationships, and our God. That was you Matt.

God took you at 12 years of age and I can't answer "why". But I do know that you showed us all more in your 12 years, more in your 9 months battling cancer, and more through your death that I can say … "why not".

Love,
Daddy

==================================
Friday, July 05, 2002 at 08:11 PM (CDT)

MATTHEW GARRETT CONOVER
July 14, 1989 - July 5, 2002

Matthew passed away peacefully and quietly late this afternoon as his sister Megan held one hand, his brother Alex held the other, with mom and dad comforting both arms and shoulders. We were surrounded by many loved ones, including Chris, Goomps, our pastors, 8North nurses, Becca, and other doctors and nurses from the ICU and Hemonc.

Matt put up a long and courageous battle against his lymphoma, but it proved too much for his body after a relapse, a bone marrow transplant, and yet another relapse. The last few weeks in the ICU were spent on a ventilator under heavy sedation with little chance of improving. After much soul searching, we agreed to have this support removed.

Matt is in a much better place now. Our family is grieving but is at peace knowing that this battle has been won for Matt. We miss his smile, his enthusiasm, and his just being "tigger." We love him so much. Bye Matt. We will see you again.

David, Noelle, Megan, Alex, and Anna Conover

A service of the celebration of Matt's life and all that he gave to us will be held Monday, July 8th at 10:00am at Mt Lebanon United Presbyterian Church, 255 Washington Rd, Mt Lebanon (http://www.mlupc.org/). Visitation will begin at 10, the service at 11, and a reception following at 12. The internment will be private.

In lieu of flowers, donations which benefit the 8 North Oncology ward of Children's Hospital and cancer research may be sent to the:
Matthew Conover Memorial Fund,
c/o Karen Cullen
1394 Terrace Drive
Mt Lebanon, PA 15228

Wednesday, July 03, 2002 at 09:41 PM (CDT)

ICU Day +20; Transplant Day +47

*** Check out the new photo collages ***

Matt has gotten neither better nor worse today.

We received a steady stream of visitors and a steady stream of notes on this web site. We check them often throughout the day. You don't know how much they mean to us during this difficult time.

Matt still looks good and appears to be very peaceful. We enjoy talking to him, knowing that he hears us even though he cannot respond back.

Needless to say our hearts are aching and the tears flow easily...

- Dave and Noelle

Tuesday, July 02, 2002 at 11:05 PM (CDT)

ICU Day +19; Transplant Day +46

Today was a very sad day for us. Matthew is not making much progress. Even though we have been fervently praying for a miracle, the doctors fear that they are losing ground against an unknown enemy. Matt's blood gasses are dangerously out of balance. The level of carbon dioxide is building in his blood to over 90%. His oxygen levels are below 45%. Even though the doctors have decided to treat Matt with medicine for PCP pneumonia, fungal infection, bacterial infection, and even his lymphoma, they do not see any progress being made.

If anything, Matthew grows weaker. He does not seem to be in any pain or discomfort. The ICU docs have assured us that they will not let him suffer. However, our original goal of getting to 8North grows dimmer. They are sure that he would not survive long enough off the machine to get to the floor.

Matt's progress is in God's hands now. Only God knows when he will take Matt. We can only pray that Matt is peaceful and calm when it is time. Until then, we will not leave his side.

Grandma Marion brought Megan and Alex to visit Matt tonight. They were able to sit with him and hold his hands. Mr. and Mrs. Mayfield, from our church, came to be with Matt and pray for him. He is sleeping peacefully. Please continue to pray for us.

- Noelle

Monday, July 01, 2002 at 09:31 PM (CDT)

ICU Day +18; Transplant Day +45

This was a setback day today. Turning on his belly did not do much, so they abandoned that. He was pretty stable throughout the day as we waited for surgery to come take out his original central line (since it kept coming back positive for a bacterial infection and only one of the two ports were working). Around 4pm though, his oxygen (SATs) began to drop. They suctioned, fiddled with his vent settings, tried hand-bagging but nothing seemed to hold it above 80% - it had been hovering around 90% for much of the day. They got an x-ray and it showed more haziness in his left side that was not there before. They don't know why.

Since his already on-the-border vitals fell, they have postponed the lung biopsy that they had hoped would shed light on just what is going on. We again will sit and wait. We have no choice. The docs are, as one said, "fearful" with this turn of events.

They finally did remove his infected line at 9 without any problems. Matt remains heavily sedated and paralyzed, and will remain so until they can get him back to better vent settings (hopefully).

Noelle and I are exhausted. It has been a long day.

Sunday, June 30, 2002 at 09:37 PM (CDT)

ICU Day +17 Transplant Day +44

What a 48 hours it has been. Our hearts have been so heavy at times that they seem to be dragging on the ground. We have also been so elated as well. Much has happened since our last update.

First the good news (well, at least as good as it can get). They feel for certain that although Matt relapsed, the relapse did not go to the lungs. As more of the pieces of the puzzle came to be known (e.g. test results, pathology reports), it became clearer to the docs that the lymphoma cells initially found in the lungs were cells that came in from the small amount of blood that was also extracted when they went into his lungs to try to find out what was going on (OK, his BAL for all our nursing friends!). This became clearer when they had also found these cells in the blood from his veins.

Given that, the second piece of good news is that the vinblastine is apparently working. They won't know for sure for a couple of weeks when the do another bone marrow biopsy and probably another CT scan, but the fact that the disease has not progressed (and given how extremely fast it always progressed) it is a sign that it is working.

So now to his lungs. Now that they have been able to separate the relapse from the lung "thing" that is going on, they are traveling down a different path. One of the side affects of total body irradiation (TBI) that he had before his transplant is, in fact, the exact symptoms that he has – inability to oxygenate, hard to breath, hazy lung x-ray, etc. They call it "interstitial pneumonitis". Knowing this too is good news. However, while the TBI damages the lungs to allow this to happen, something else is the actual cause. Finding it, and figuring out what to do about it is something else. ICU wants to do a lung biopsy ASAP. Hemoc says "no way, he can't handle that right now!" It could be an underlying bacterial infection. It could be viral. It could be something else. It could clear up totally on its own and no one will ever know. So once again, we sit and wait. This is a serious complication, so please pray for discernment by the medical staff.

They tried something new today: rolling him over on his stomach. They have seen good results with just doing something this simple, so they will put him on his tummy for 12 hours, switch him back to his back for 12. A regular rotisserie. Unfortunately they need to keep Matt totally knocked out for his comfort. He is on an unbelievable amount of drugs to keep him sedated (he has developed a huge tolerance to them – we joke that his next stop will be to Gateway Rehab). Kim, his nurse today, commented that she has never seen this amount of sedation given to a kid before, and that this was enough to make an adult comatose! They also have him paralyzed so that the ventilator does all his breathing. Matt looks quite peaceful now. Noelle said she hasn't seen him sleep on his tummy since he was a baby.

Part of our rollercoaster these past few days has been that Matt became increasingly anxious to the point of showing absolute fear whenever they went to suction him to remove the mucous in his lungs. His gasping for breath and struggle to cough up the mucous and deal with the hand-bagging they do between putting the suction tube down his throat was too much. Even the extra doses of morphine and Versed were less and less effective. We, as much as Matt, are glad he is out and can rest well.

Matt was very awake this morning before they did this. Dr. Wollman, along with Noelle and I, explained what we were going to do. Matt just nodded, shrugged his shoulders in his usual way just saying as he always has "whatever you need to do, I'll go along with it". He is such a good patient, so accomodating. The nurses love him.

One great thing that happened this weekend was that the "big guns" of the ICU and Hemoc were on call at the same time, and they both checked in on Matt at the same time. Noelle quickly cornered them and started hammering them with questions and had them playing off each other (do I need to say that the night before Noelle spent hours on this laptop searching for everything she could find on interstitial pneumonitis?!). Having the two most experienced doctors talking about his care and exchanging ideas was great, and will surely lead to a better prognosis for Matt. Tomorrow we all will talk with the BMT big gun to get his input as well. Thanks God for making this "coincidence" happen!

Right now the we are cautiously upbeat, but we know the road is still long ahead of us. Thanks to you all who have been so supportive of us on this journey.

Saturday, June 29, 2002 at 07:58 AM (CDT)

ICU Day +16 Transplant Day +43

Matt is still resting comfortably and on the same ventilator settings - no change.

Noelle and I had a rough 24 hours beginning Thursday evening as we contemplated the next set of steps. The ICU docs were feeding us on how they viewed it, and what options were open to us: keep waiting as is, insert a feeding tube, tracheotomy, pull the tube, ... What we have been missing though is how Hemoc (his blood cancer docs) view it. We (read Noelle) let them know that we wanted some answers, or at least their best guesses, on what their prognosis is. Noelle has been in active discussions with parents and doctors around the world who have some personal information on cases like Matt's. She has even had papers faxed to Children's. She leaves no stone unturned - she is such an advocate for him! Thank you honey!

Finally yesterday afternoon Hemoc came back to us. They feel that the vinblastine is working because if it wasn't his aggressive disease would be showing up all over (lots of enlarged lymph nodes). They feel that the lungs were damaged - due to a fluid overload in the OR that got us here in the ICU in the first place or due to the lymphoma itself - and that it will take another 3-4 weeks to heal. They want to sit tight, keep his vent settings as is (basically he is breathing on his own with pressure support and lots of oxygen) so that his lungs can rest and heal - no more playing with the settings as they had been over the last 2 weeks.

We are meeting today though with Matt's primary Hemoc doc, Dr. Wollman. He knows Matt the best and knows us the best so it should be informative and calming for us.

We are also going to have a "care plan" meeting early next week where we sit down with the Hemoc and ICU docs and nurses in a conference room and come up with a plan of action for the next few weeks. Part of the problem is the lack of effective communication between all parties, and this forces not only that to happen but also forces the docs to put their best guess out there and "lay it on the line" rather than be non-committal.

I realized last night that little has been said about the other kids at home! Alex and Anna thoroughly enjoyed vacation bible school this past week and Alex loved "traveling camp" that occurred every afternoon after VBS - lots of trips to pools and trip to Sandcastle, the local water park. Alex is also very busy with travel baseball (their first tournament is this weekend). Anna is a joy. I had a good time with her in the pool yesterday when I went home. She is a real fish! We just put her in her bathing suit that has the flotation foam sewn right in and she just jumps in and paddles around - great for a 3 year old! Megan is having a ball with her two softball teams (one in-house slow-pitch, one travel fast-pitch). She's a great player and has made friends with a great bunch of girls, including some recently-graduated seniors who have taken a liking to her and included her in going to get a bite to eat after the games, etc. She is fortunate to have these girls right now to be role models (all jocks, all going to college, all with their head on straight), especially after her less-than-happy freshman year.

We have lots of family in this week, so our kids have lots of entertainment. Greg (my brother, aka Chris's husband) and their kids are here and my stepmom Marion and her daughter Laura also are here. We are blessed to have them here with us.

Thursday, June 27, 2002 at 10:49 PM (EDT)

ICU Day +14; Transplant Day +41

Well, no real changes to report. Matt is pretty much still holding his own. He has not really improved nor has he fallen back. He had his second dose of Vinblastine yesterday and as a result, they were able to get many more secretions out of his lungs. He has been able to maintain a good oxygen saturation level but it is not near the number that they need to extubate him. So we sit and wait. We are waiting for the time when Matt's body will tell us that he can breathe without the machine. We are anxiously waiting for that moment. It is not a quick process, unfortunately.

Aunt Chris stayed with me at the hospital last night. It was a great visit. Her family arrived from Mexico tonight, safe and sound. They are all staying at our house, but Aunt Chris can deal with the chaos. David and I are here with Matt tonight. We lucked out again and got a sleeping room. Matt's step grandma, Marion arrived tonight from North Carolina to visit too.

We will be meeting with Matt's doctors in the next few days to develop a care plan for him. This will help us make the difficult decisions that lie ahead. Hopefully, the drug will keep working and we will be bringing Matt home soon. We can all pray for that.

Thanks to all who are taking care of our family. Alex and Anna had a wonderful time this week at VBS. The meals continue to be a blessing and we appreciate all the prayers and messages.

- Noelle

Wednesday, June 26, 2002 at 07:22 AM (CDT)

ICU Day +13; Transplant Day +40

Well, I wish I had great news but all I have is that Matt remains pretty much the same. The last few days have not seen much progress in his breathing (for all our nurse friends who ask: he is still on pressure support (gives an "ummph" to each breath) at a PEEP of 6, an oxygen of 90% and with that maintains a SAT (oxygen in his blood) around 90%). Fortunately he gets his next round of vinblastine today that we really hope will abate his cancer some more in his lungs and get him off the ventilator.

Matt is much more wakeful now, probably because he has become used to the whopping doses of morphine and Versed (the "I won't remember anything" medicine) that he is on. He seems to be doing OK, but he is a little frustrated by the tube and his inability to speak and tell us what he wants. He is also not strong enough to point to pictures or letters let alone write. He is also his ornery self when it comes to where all the IV lines, heart and pulse monitor leads, and breathing tubes are lying across his body. He seems to be always repositioning them and picking at the tape that hold a lot of these in place!

They did remove his urinary catheter and he is much happier that it is gone! I think he was more bothered by the tape on his leg that held it in place rather than the catheter itself. The nurses can't believe that he has enough awareness in his periods of deep sleep to tell us when he needs to go.

In usual Matt fashion, nothing is ordinary. He developed a red mark on his upper right arm the other day that was warm to the touch. They x-rayed both arms, took blood cultures, and measured his arm circumference. By the time they got results back (which showed nothing) it was gone. It has reappeared - and disappeared - twice more since then. He also had some blood in his urine that they think is a bladder infection. Since he also has tested positive for bacteria in one of his central lines, he is back on some antibiotics that should take care of both infections. Yesterday he got these weird, small boil-like bumps on his neck. They kind of look like chicken pox: small fluid-filled bubbles. Kind of looks like he has small beads of sweat on his neck! They are not yet sure what it is - maybe today some results will come back. They are not too concerned though. He is still immunosuppressed (did I spell that right?). Even though he has a nice white blood cell count and a good ANC (a measure of his germ-fighting capability), he has no antibodies that are the real first line of defense against most germs that we encounter day to day.

Since Matt is pretty stable, Noelle and I have been taking turns staying here (I had last night's shift). It is a lot easier on us this way but living out of a suitcase is a pain. We've been managing to get a room here at the hospital luckily - we can't stay in his ICU room. There are not enough of these sleeping rooms for all the parents who need to stay. Last night there were 20 signed up for the 12 rooms available. Everyday they have a lottery to see who gets a room. We've been lucky so far. The rooms are much like the dorm rooms of our past: small, a passable bed, a nightstand and a phone with a communal bathroom in the hall. Some of the rooms are windowless and we find ourselves fumbling in the dark to read our watches by the light that seeps under the door because we don't know if it's 3, 5 or time to get up! Some of the rooms are next to the ventilation ducts and some next to the elevators, so they can be quite noisy. Oh well.

We have had a nice stream of visitors including a lot of the friends we have made here in the hospital (nurses, doctors, and other families). Fortunately visitation has worked itself out - we are only allowed 2 visitors at a time (including us!) and we have not had any clashes with multitudes of people showing up at the same time! If you'd like to visit, you may want to email Noelle (her address is at the bottom) to coordinate a time if you'd like. Although we have no phone, we did find a phone jack so we have the internet and email access (we have to stand while doing it though). Since then Noelle is much happier!

Noelle mentioned in the last update that she has been in contact with a mother whose 5 year old daughter has been through exactly what Matt is experiencing - NHL ALCL diagnosis, chemo, relapse, transplant, relapse in the lungs, vinblastine - and has been in remission for 6 months. Noelle has contacted her doctor as well as a doctor in France who has done a lot of the vinblastine research and has hooked them up with our doctors here. Noelle is amazing with what she can do on the internet!

This gives us hope, but we are torn between hope and the reality of just how sick and of how severe relapse in the lungs is...

Please pray that the vinblastine he gets today will ease us off the ventilator, and that if God proclaims it, gets him back into remission. We miss him.

Sorry for all the rambling. I know our last few posts have been more terse than usual, so I thought I'd catch everybody up.

- Dave

Monday, June 24, 2002 at 09:54 PM (CDT)

ICU Day +11

Matt had a good day today. He continues to need less assistance from the respirator and his breathing is less difficult. Something (?) seems to be working. He is getting a lot of much needed rest and for the most part, is quite stable.

We are hoping that in a few days he will be able to get off the machine and back to 8N. The doctors are pretty certain that this will happen. Then we will be making some decisions. The drug, Vinblastine, seems to be working. He will receive another injection of it on Wednesday. I heard from a couple of families today whose children were in similar circumstances and they have done quite well on this drug.

I have hope tonight. I will not lose hope that this drug might really help Matt. This is what kept me going today. We had many visitors - a lot of doctors and nurses from 8N came to see Matt. They are all pulling for him too. Your messages and notes have been a joy to read. I know everyone is pulling for Matt and wishing us the best.

Thanks for all your support. Here is to a brighter tomorrow.

- Noelle

Sunday, June 23, 2002

There is not much new to report. Matt is still holding his own on the respirator. He has been weaned down to an oxygen level of 60% and he is doing all of the breathing himself. We are still hoping that in a few days he will be able to come off the machine.

Thanks for all the thoughts and prayers on the site. They mean a lot to us. We are tired and weary.

- Noelle


Friday, June 21, 2002 at 10:50 PM (CDT)
It is with a heavy heart that we write to all of you who have fervently been praying and supporting our family. Matthew has relapsed. His disease has spread to the lymphatic system in his lungs. It is very rare for this to happen so soon after a transplant. Because his immune system is so weak and because his disease is so aggressive, there are no more treatment options available for him. The doctors have decided to try one last drug, called Velban (Vinblastine) to try to shrink the quickly growing disease to provide him comfort and buy him some more time. It is so aggressive that a CT scan revealed nothing seven days ago. Yesterday's scan showed disease throughout his lungs. If the Velban works, we may be able to get Matt off the respirator, back to 8North, and hopefully, home. If it does not, he will probably not be able to get off the respirator.

We are hopeful that we will be able to get Matt home. That is what our family wants. Please pray for this and for comfort for all of us as we struggle to accept that Matt has waged such a valiant battle and may not win. We have told our own children.

Please keep prayers, cards, letters, messages, support, etc. coming. We need them more than ever. Matt is a special kid. He has always been destined for something great. We just didn't know what God's plan is for him.

If you are a friend of Matt's, please show this to your parents, pastor, teacher or other adult who can weep with you. We know that this will deeply and profoundly affect you, and you need not do it alone.

Love,
The Conover Family

Thursday, June 20, 2002 at 10:49 PM (EDT)

Transplant Day +34

Another long day in the ICU. Matt continues to breathe with the respirator. His lungs seem to be improving a bit but he still requires almost 100% oxygen. He is heavily sedated now because he has been fighting the machine and it causes his oxygen saturation levels to fall. He is somewhat responsive if you try to wake him up but all of the sedation makes him sleep most of the time. This is good - his lungs are getting a much deserved rest.

Lots of visitors came today. Pastor Freeman from the hospital, Kelli Maravalli from our church, and Matt's beloved "other mother", Franci. Special thanks to my friend, Lisa, who came to sit with Matt tonight while David and I got home to see the other children and be with them for awhile. It is good to come home and spend some time outside in the green grass. The ICU is no place to be on a beautiful sunny day.

Please continue to pray for Matt. We are taking baby steps toward getting him off the machine. That is what we hope for.

- Noelle

Wednesday, June 19, 2002 at 10:26 PM (EDT)

Transplant Day +33

I know that all of you have been checking the website each and every day to follow Matt's progress. We are so grateful for all of your support and concern. Today has not been a very good day for Matt. His numbers on the ventilator all went in the wrong direction. He was not able to maintain the decreases that he had been tolerating up until now. He is back on 100% oxygen and a pressure of 8. In order to get off the machine, he will need to be at at least 50% oxygen or less and a pressure of less than 5. It is difficult for them to turn the machine down because each time they do, he has trouble oxygenating his blood.

The doctors are a little closer to determining the underlying process that is causing him so many difficulties. Today, they took another CT scan of his lungs. The results tomorrow will yield an answer one way or another. They are relatively sure that it is not fluid, blood hemmorage, or PCP Pneumonia that is to blame. They are not really sure what it is but some test results will be back tomorrow. So we sit and wait and pray.

David and I were lucky enough to get a sleeping room here at the hospital tonight. It is based on a lottery system and our number got called. Last night, I slept bedside but didn;t get any sleep. Too much going on. We lost our room on 8N, so we will not know from night to night where we are sleeping. We feel like refugees.

We are very tired. Aunt Chris is tired. The kids are tired and most of all, Matt is tired from fighting so hard in this battle. He does not deserve this at all. Thanks to all for pitching in - we are really grateful for all the help.

- Noelle

Tuesday, June 18, 2002 at 11:58 PM (EDT)

Transplant DAY+32

Matt is making progress. His numbers on the ventillator are going in the right direction. The docs are slowly weaning him off of the machine. His lungs actually look a bit better on the xrays and the fevers are going down. He seems to be getting better but nobody knows why or what he has!

The good news today is that Matt does NOT have PCP pneumonia. This is a very serious infection of the lung and not a good thing if you are allergic to all the treatments, like Matt. So they discontinued the drug, which was very toxic. The doctors will continue to look for an answer, but it may very well be that there is no answer for this. Perhaps it might have been a virus. There is a chance it could have all been caused by fluid overloads from the procedures he had under anesthesia. We may never know. However, if Matt gets well, we won't care.

David, Aunt Chris and Alex came to visit this evening. Alex did such a great job visiting with his brother. I am so proud of him. He held Matt's hand and talked to him. He was very brave walking through the ICU. David's sisters came into town today. Kate visited this afternoon and Aunt Amy came this evening. It is nice to see them. Our wonderful friend from 8N, Sarah, also came. Her son, Chris, is doing very well off treatment. I loved seeing her too.

We hope to have another good day tomorrow. Matt looks really good and we hope that he is on the road to recovery. Only time will tell. Thanks for all your prayers and messages. It is very isolating here in the ICU and I am thrilled to report that our room has internet access so I can always have my trusty computer access to the outside world. Thanks for supporting us.

- Noelle

Monday, June 17, 2002 at 10:45 PM (EDT)

Transplant DAY+31

Matt is still on the respirator. His lungs continue to rest and hopefully, improve. There were at least ten different doctors in his room today, and each seems a little bit puzzled. They are still not sure of the cause of Matt's pneumonia. They seem to feel that it is the PCP but unless they can isolate a sample, they do not want to leave him on the potent drugs used to treat it. So they decided to do ANOTHER bronchoscopy today to get a sample.

Unfortunately, we do not have any results back yet. They did find some bleeding when they went in, which they are unsure about. They are not sure whether they are causing the bleeding by doing the procedure or whether the lungs are oozing blood for a different reason. Either way - it is unsettling.

Matt is so strong. He really looks good - his color is good and his numbers are good. We are hopeful because things seem to be going in the right direction. The docs said today that they might never know what caused this problem but it may get better. I said that we would be happy with that outcome. However, if he doesn't get better and they don't know what has caused this...then I will be mad.

We are exhausted. It is terrible for families at Children's Hospital in the ICU. There is no support, like on the unit, no sleeping arrangements, nothing. I cannot believe how terrible this all is. I really miss our "support system" on 8 North. They are so great. Several of the nurses have been down to visit Matt.

I am home tonight with the kids. I missed them so much - hadn't seen Alex and Anna in over a week. Back to the hospital in the a.m. - hopefully we will know something soon. Thanks for all your encouraging wishes. Please continue to keep us in your prayers.

- Noelle

Sunday, June 16, 2002 at 01:23 PM (CDT)

Transplant Day +30

Night Update

OK, we made some progress today! Matt's vitals remained steady all day and they have been slowly reducing his oxygen requirements (from 100% last night to about 65%). Hopefully when we see him in the morning it will be below the 60% that the docs want to see. They also stopped the paralyzing agent so by the evening he could move and acknowledge us. I can't tell you how good it felt to have him squeeze my hand!

The docs now feel pretty strongly that he has "PCP" pneumonia. They haven't got a culture yet (they may do that tomorrow if he is strong enough), but the evidence certainly points to it. They have started him on a strong antibiotic and because he has reactions to the two main antibiotics used against this bug, they are also giving him the same main chemo drug he has had for his chemotherapy - it does to fast-growing bacteria what is does to fast-growing cancer cells! It may also introduce the same side effects, mainly mucositis. Oh well, we've "been there done that" so we can deal with that!

Also, by the end of the day the kids were getting along better. Megan came out this evening to visit Matt, and I think they both were happy to see each other.

Chris just arrived I hear and Megan and Alex are very happy!

We'll take the small wins today, and hope and pray for more tomorrow.

----------------
Morning Update

Matt had a good night I guess(?) - he is heavily sedated and they put him on a continuous dose of the paralyzing agent. He is unconscious and unable to move with just the rise and fall of his chest from the respirator giving any indication of life. Still no word on the cause of his fevers. His BP, heart rate, and oxygenation are reasonably good which is what they are all about in the ICU. His white count is continuing to rise and his temperature remained steady at 104 through the night(rather than falling as they had in the past). They now have him lying on a mat on his bed that runs cold fluid through it in order to get his temp down.

Mom and I are hanging by a thread...

I am at home to see the other kids and get some stuff done around the house (laundry started, errands run, etc.). It is clear that this is taking its toll on them. Alex burst into tears when I picked him up from his friends house. Anna is whiny and Megan snaps at her and Alex at the slightest provocation. None of them are getting along. Chris can't get here soon enough.

Saturday, June 15, 2002 at 11:11 PM (EDT)

Transplant Day +29
Nightmare Day +3

After another rough night Friday night, Matt ended up on a respirator (breathing machine). His blood oxygen levels fell very low, and he had a lot of fluid in his lungs. They went in with a scope and extracted some of the fluid in his lungs to try to determine what was going on. The preliminary results back this evening are negative, meaning they haven't found any germs yet. They did find a little blood in the fluid which was not totally unexpected given the low platelet levels he has had. Fortunately the blood could explain the breathing problems and the coughing that he has experienced. Unfortunately, that still does not explain the fevers that he has been experiencing for a week now. Hopefully tomorrow will bring that news.

The plan is to slowly wean him off the respirator over the next couple of days. He is resting very well as he is heavily sedated tonight which he needs - it's been a few nights of no sleep for him.

I can't say how upsetting it was for us to see him on a respirator. It really hits home just how sick he is right now. We (Noelle and I) are both in his room on 8N for the night - they won't let anyone stay with him when he is on a respirator. This is really hard on Noelle, as this is the first time in 140 days of hospitalization that one of us has not been at his bedside at night.

We have some very good news in that Aunt Chris is once again flying here from Mexico to man the homefront while we do battle here. We can't thank Chris, Greg and their kids enough for what that means to us.

Much thanks goes to Lisa who is always there for us (it's so nice to have a good friend who is a stone's throw away from the hospital), and to Franci who mans the phones for us back home in Lebo, and many thanks to the moms that take in Alex as one of their own, and of course special thanks to Goompi who takes care of Anna!

- David

Friday, June 14, 2002 at 09:27 AM (EDT)

Transplant Day +28

UPDATE#2, Friday 10pm: Well, dad is home and mom remains behind at the ICU with Matt. He is doing well with his blood pressure and his pain and is trying to rest (it's awfully hard in an ICU). His lungs are clearing of fluid but he remains on oxygen. We met with a new set of doc's today - the infectious disease folks (which is where we started 8 months ago!). The hope is that they may see something the oncology, gastro, and ICU docs are missing.

Noelle got a much needed nap and a shower this afternoon, so she feels a little better. One nice thing about the ICU - can you believe I said that? - is that they kick all visitors out between 7 and 8 during the shift changes (so they can exchange information freely), so Noelle and I got to go out to dinner. It felt good but we struggled to dance around what we are really thinking and feeling...

Well, I need to get back to Alex who is anxiously awaiting my much needed attention!

Until tomorrow,
David
------------------------------
UPDATE, Friday 3pm: Matt's pressure is back up and he is resting comfortably in the ICU. He has had lots of tests, pokes, prods, and questions (without any complaints - he is a trooper!). Next they will slowly try to remove the excess fluids in his system which should clear out his lungs. He will stay the night and hopefully be back home on 8N tomorrow morning.
------------------------------------
Matt did not have a good night. The anesthesia for the endoscopy and colonoscopy were very hard on his weak immune system. He was not able to handle the drugs and the fluids the way that most people can. Because of this his blood pressure dropped and his lungs filled with fluid. The great nurses (thanks Heather!) of 8N were able to keep his numbers as stable as possible but this morning they decided that it is best for Matt to go to the ICU. We will be moving there in a short time.

Once again, ICU is the best place for Matt right now. One-to-one nursing and the ability to monitor blood pressure and oxygen levels are what they do best there. It is very difficult for us to go there again, but if it helps Matt, then that is where we must go. Hopefully, we will only be there a short time while they get him stabilized.

We won't be as in touch there. There are no phones. We will try to update the site as much as we can. Please continue to pray.

Thursday, June 13, 2002 at 11:04 PM (EDT)

Transplant Day +27

I guess I'll start with the obligatory facts...

The CMV blood test came back negative (no nasty virus) - hooray! The CT
scan from yesterday did not show much of anything - hooray! The
endoscopy and colonscopy Matt had today went well and showed no sign of infection - hooray!? (so where are his fevers coming from?...) The
doctors noticed that he had a "slow" colon, and that would explain his occasional vomiting and cramping that he has had since the transplant.
When he got back to his room, though, he was pretty sore (mainly from the two bone marrow biopsies, one from each hip) and he gave himself a lot of
Dilaudid (morphine) from his PCA. Coupled with the residual effects of the
anesthesia, his blood pressure dropped to 80/40 tonight. Needless to say,
they are monitoring him closely and it will mean another relatively sleepless
night for mom and Matt.

He is still cycling through high fevers, but the doctors have noticed that they
are attenuating over time, so maybe the various antibiotics, anti-fungals,
and anti-virals he is on are working. Still, this is too close to how he started
out back in October...

So now to the emotional and spiritual realm...

We're tired. We're full of questions. We're angry (why Matt?). We're
worried. We're scared.

This "be patient" stuff is starting to wear very thin. I think six weeks in the
hospital is taking its affect on all of us. The not knowing, the quickly
changing conditions, the waiting for tests, doctors, and more tests...

Pray for strength. Pray for answers. Pray that God would make himself felt
in all this.

- David

Thursday, June 13, 2002 at 11:04 PM (EDT)

Transplant Day +27

I guess I'll start with the obligatory facts...

The CMV blood test came back negative (no nasty virus) - hooray! The CT scan from yesterday did not show much of anything - hooray! The endoscopy and colonscopy Matt had today went well and showed no signs of infection - hooray!? (so where are his fevers coming from?...) The doctors noticed that he had a "slow" colon, and that would explain his occasional vomiting and cramping that he has had simce the transplant. When he got back to his room, though, he was pretty sore (mainly from the two bone marrow biopsies, one from each hip) and he gave himself a lot of Dilaudid (morphine) from his PCA. Coupled with the residual effects of the anesthesia, his blood pressure dropped to 80/40 tonight. Needless to say, they are monitoring him closely and it will mean another relatively sleepless night for mom and Matt.

He is still cycling through high fevers, but the doctors have noticed that they are attenuating over time, so maybe the various antibiotics, anti-fungals, and anti-virals he is on are working. Still, this is too close to how he started out back in October...

So now to the emotional and spiritual realm...

We're tired. We're full of questions. We're angry (why Matt?). We're worried. We're scared.

This "be patient" stuff is starting to wear very thin. I think six weeks in the hospital is taking its affect on all of us. The not knowing, the quickly changing conditions, the waiting for tests, doctors, and more tests...

Pray for strength. Pray for answers. Pray that God would make himself felt in all this.

- David

Wednesday, June 13, 2002 at 12:06 PM (EDT)

Transplant Day+26

I could not update the server last night - it was down. So yesterday's update follows at the bottom of this page.

Matt needs your prayers. He is not doing well and the fevers continue to spike higher and higher. Most have been above 105 degrees. His night was not good and he has severe abdominal cramping and nausea that comes and goes. The doctors have two theories. He either has an infection or this is a sign of a relapse. We are desparately clinging to the hope that it is an infection of some sort. However, even that news is not all good. Some infections, for example bacterial, respond very quickly (within a few days) to antibiotics. If there is no response and the fevers remain, then they feel it must be fungal or viral. These are much harder to treat.

If it is fungal, it will be covered by starting him on Amphoceterin B, an anti-fungal he was on last week. This should take care of any fungus in the gut. If it is a virus, then what kind? There are so many and each has a specific blood test to determine it. The serious one is CMV. We are still waiting on those results from yesterday.

If it is neither bacterial, fungal or viral, as determined by blood tests and response to medicines, the next step is to get a biopsy from inside the lining of the stomach. So tomorrow, Matt will have an endoscopy and a colonoscopy to get a tissue sample to determine the origin of the infection. In addition, while he is under the anesthesia, he will have a bone marrow biopsy to see if there are any detectable lymphoma cells.

This is all a waiting game. It is agonizing for all of us and Matt grows weaker by the hours. I am asking for everyone to please pray for us and for Matt to be strong and brave in the face of this adversity. Please pray for his CT scan today and the tests tomorrow - that they go smoothly and there is no bleeding. He has very low platelet counts and that can be dangerous. Thanks for caring. We couldn't do this without all of you.

- Noelle

Yesterday's update (in case you didn't get the email update)

Transplant Day+25

What a day! Matt continues to battle against an unknown enemy. In a
way, it looks like his immature, young immune system is really stepping
up to the challenge. His white cell count went up today. (7.4) That
indicates that there is an active infection somewhere in his body and
the white cells are preparing for a fight. However, the doctors are
still not sure what it is that Matt's body is fighting. It can be a
bacterial, fungal or viral infection, most probably located somewhere in
his GI tract.

Today's test was an abdominal ultrasound that examined his liver
(normal), his gallbladder (normal), and his pancreas (normal). This was
good news. The blood cultures from yesterday all indicated that there
is no sign of infection in the blood - like sepsis. That is good. But
why the fevers and the nausea? That is the question.

Matt spiked a fever tonight of 105 degrees. This is dangerously high
and scared me. It is the same kind of fever he had when he first got
sick. After a tepid bath and some tylenol, his fever is around 101.
Thank God. Hopefully, we won't see that again. They must find the
cause of this infection soon.

Tomorrow, Matt is scheduled for another round of tests which include a
CT scan and perhaps, an endoscopy to collect a tissue sample. Another
blood test was taken today to look for the CMV virus, a common culprit
in transplant cases. It is a nasty virus that is very difficult to
treat. However, it is best to know as soon as possible if he has it to
give him the best chance of fighting it.

Please continue to pray for Matt and our entire family. He is strong
but he has had to endure so much over the last 35 days. It is time for
him to get a break. Please pray that they find an answer to his problem
soon and that he gets back on the road to recovery.

Monday, June 10, 2002 at 09:42 PM (EDT)

Transplant Day +24

Matt continues to fight some kind of infection. The fevers raged last night and he
(and I) had a pretty hard night. Matt also had quite a bit of belly pain and was vomiting bile. The doctors are concerned about this and feel that this indicates some kind of gastro infection going on. Blood cultures continue to remain negative, which is good - no sign of sepsis. Matt will not be on the antibiotics for 48 hours until tomorrow evening so there might not be any improvement until then, if they have chosen the right antibiotic for whatever he has.

Matt received a CT scan of his sinuses today. He has some drainage and has been stuffy for weeks. There is a possibility that they could be infected. The CT results should help to unlock that mystery. The transplant docs consulted a gastroenterologist to help them understand Matt's GI symptoms. An interesting idea that one had was that this may be gallbladder trouble (stones) caused by being on Hyperale, the liquid nutrition, for so long. So tomorrow Matt will have a sonogram of his liver and gallbladder. (he may be following in my footsteps with the gallbladder thing). If they find stones, he could be in for surgery.

So that is the Matt report. I am home this evening. I needed sleep. which I have been unable to obtain in two nights at the hospital. David wanted to spend some time with Matt too. They are coping well as David learns just where Matt wants his tray table and how to run the bath water perfectly. I needed to be here with the other children. I miss hugging them and just talking to them. We will learn more tomorrow about Matt's progress in this marathon. Thanks to Mary Birks for putting it so well in the guestbook. I guess we are further than we thought. We have hit the "wall" of our marathon. We will get past it. Matt will triumph. Good night...zzzzz

- Noelle

Sunday, June 09, 2002 at 1:56 PM (EDT)

Transplant Day+23

WBC - 4.7 (normal 4 - 10)
HCT - 10.8 (good)
Platelets - 59,000 (normal 150,000 - 450,000) * might need more tomorrow
ANC - 3901 (normal >1000)

The road gets bumpy once again. I am sad to report that Matt spiked a fever and had a pretty rough night last night. He is having a lot of draining and stuffiness in his head, accompanied by a headache and nausea. Once the fever spiked, the docs thought that perhaps, he has a sinus infection. A sinus infection in the rest of us is mostly a nusiance, but a sinus infection in a severely immunocomprimised (how do you like that word?) person is serious. If he does not have a sinus infection, then the inflammation in his colon could be turning into an infection.

Either one of those conditions warranted a whole army of folks in our room last night drawing blood cultures, taking blood pressure and temps, passing meds and hooking him up to previously unhooked IV's. The bottom line is that whenever a BMT patient spikes a fever, the world of 8N responds.

In the last few hours, Matt has had an xray of the chest to rule out pneumonia (it wasn't - yeah!), cultures of his sinuses, cultures of his blood, cultures of his urine, more bloodwork and a host of other tests. The doctors have put him on the old standard antibiotic, Vancomyacin, as well as a new one, Timentin, to handle the possible GI causes. There is a distinct possibility that there is no infection and in 48 hours, if no bacteria shows up in his blood cultures, he will be taken off these antibiotics. If something does show up (like the E-coli from Day +2), then Matt will have to complete a course of these powerful IV antibiotics.

What does this mean for us? Well, our plans to come home are certainly on hold. If nothing does surface, then perhaps, we will be able to come home at the end of the week. If not, we are probably facing a couple more weeks in here. I am very sad about this but it is the right decision for Matt and his weak body. They are much better here, than I am at home, taking care of him under these circumstances and I keep thinking that, had we been home last night, it would have certainly been ANOTHER Saturday night trip to the Children's ER (which is no place for an immunocomprimised person). Bottom line: This is the best place for Matt right now and the rest of us will just have to get over it!

Please pray that the blood cultures do not produce any bacteria and if they do, that the doctors have, once again, ordered the "right combination" of antibiotics. Pray for the doctors and nurses who are doing such a great job taking care of Matt (and me!). Pray for David and the rest of the family at home - that we all can get the strength we need to help Matt complete the "marathon." This is just another bit of "cracked pavement" along the way.

- Noelle

Saturday, June 08, 2002 at 04:54 PM (EDT)

Transplant Day +22

Matt's CAT scan results are back. He has an inflamation of the descending colon and perirectal wall. This is not bad news at all. All it suggests is that he is still battling with mucositis. The good news is that the test for CMV virus to this area came back negative. This is a tough virus and if he had it in this area, it is not a good thing. He also has tested negative for the C-DIff bacteria, something he had earlier in the year and is particularly nasty to get rid of. He still has no fever and has excellent counts. So...what does all this mean?

He still has gastro pain off and on and for this, he is still able to use his pain medications. Tomorrow, he will be off all IV pain meds, so they will switch him to oral meds, if necessary. He still has some nausea and vomiting but very infrequently at this point. He is receiving platelets right now.

We will talk to his transplant doctor on Monday to see whether any of this will set him back from going home on Wednesday. If he keeps making improvements, it should not. If however, his gastro pain get worse, the next test for him is a colonoscopy. As a frequent recipient of such tests, I can tell you that I hope he does not have to undergo this invasive procedure. However, if that is what is necessary to diagnose the cause of his pain and nausea, then they will have to do it. Please pray he does not have to undergo this test.

We are so grateful for all of your thoughts and prayers. We are very excited to come home. It is very difficult, especially for me, to sit in this room on gorgeous days like today. I know that sitting on the patio at home would do both of us worlds of good. I also know that I don't want to bring Matt home and have to run right back to the hospital. So we will see what Monday brings.

- Noelle

Friday, June 07, 2002 at 10:47 PM (EDT)

Transplant Day+21

The roller coaster continues. Matt had a terrible night last night and not so great a day today. His counts are still good:

WBC - 20.2 (Neupogen induced this high!)
HGB - 12.5
Platelets - 32 (got a transfusion today)
ANC - 19,190 (WOW!!!)

Matt developed some gastro pain last night accompanied by some nausea and vomiting. It kept him up most of the night. In the morning, he continued to have pain and so the doctors decided to get a CAT scan of his abdomen, some bloodwork and some tests.

After waiting all afternoon, Matt finally had the tests and we just got the results back. They were negative for all the "bad" things that they were looking for. They still suspect that the mucositis could be casuing the pain in the abdomen. The good thing is that around 7:00, Matt started feeling much better, the pain disappeared and he even got up and walked around the unit!

So, the roller coaster continues. Matt has been feeling so well and hopefully, today was just a little "bump" in the road. We certainly hope and pray that this is the case. More tomorrow when we get the CAT scan results.

- Noelle

Thursday, June 06, 2002 at 08:20 PM (CDT)

Transplant Day+20

Wow! Matt is 1/5 of the way toward 100 days today! It seems like we got here so fast and yet it seems like we have so far to go. Matt's counts dropped today. They are:

WBC - 3.1 (normal 4 -10)
HCT - 10.7 (A nice bump up from the transfusion yesterday!)
ANC - 806 (normal >1000 - This fell -they will start Neupogen again)
Platelets - 55 (stayed up)

The drop is to be expected and Matt will most likely need one or two shots of Neupogen each week for awhile to keep the counts up. We have to be more careful now that his ANC has fallen below 1000. He had a good day today - spent most of it awake, which is a change. He did laps around the unit this morning and this afternoon, returned to physical therapy to complete some excercises, work out on the bike, and climb some steps. David took a half day off and spent the afternoon with Matt while I got away for a break. I spent the evening at home with the kids, got pizza for dinner and took them out for ice cream. It felt so good to do some "normal" things again.

Matt has been throwing up a little each day and his doctors were concerned about it, so they did some xrays and ran additional bloodwork. Everything came back ok so they think that the mucositis is still present throughout his intestines. Poor kid - he has not eaten a single thing in over a month! The good news is that because he is on TPN (Total Parental Nutrition) he has not lost an ounce! Amazing.

We are preparing the house for Matt's homecoming. Some friends will help me on Monday clean the entire house and disinfect it. I have carpet cleaners, roofers, air conditioning men - you name it - coming to get it in shape. What a homecoming we will have. The potential day is Wednesday but we will know more on Monday. Stay tuned.

- Noelle

Wednesday, June 05, 2002 at 11:03 PM (EDT)

Transplant Day+19

WBC - 3.2 (normal 4 -10)
HGB - 7.7 * Matt received a red blood cell transfusion today
ANC - 1536 (normal >1000)
Platelets - 56 (stayed up - a good sign!)

Matt had a good day - he slept most of it! He spends almost 18 hours a day sleeping. It is hard to believe that he can sleep so much. His body needs the sleep so that it can be busy rebuilding and regenerating cells. When he is not sleeping, he does physical therapy, walks around the unit, takes a bath and watches ESPN.

The doctors are starting to talk about "going home." It is scary for both of us. It would be nice to go home and be done with everything, but going home is not the "end" of treatment. Matt still has to come to the clinic three times a week, he must have his second catheter removed and he will have to have some follow up radiation to his neck, which the doctors want to do as an insurance against the disease recurring in the area where it first started. So, the end is not as close as we hoped.

A friend remarked today, that Matt's battle has been like running a marathon. He prepared for it, trained for it and started the race. It is a long race, and in order to win, a person must build endurance. Matt has reached about Mile 15 of the race. He has had some setbacks, some falls along the way, and some bumps in the road. However, he is on course and slowly, steadily, he will win through endurance. We must remember, though, that just because he is going home, the race is far from over. He still has the next 11 miles to go!

Matt will spend the next few days trying to eat something and weaning off the pain medication. If he can do these two things, then we should be going home in the early part of next week. This is what we are working toward.

- Noelle

Tuesday, June 04, 2002 at 08:12 AM (EDT)

Transplant Day+18

Matt's counts are great. They are:

WBC - 3.3 (normal 4 -10) * This has fallen back because neupogen was stopped
HGB - 8.4
ANC - 1617 (normal >1000)
Platelets - 57 (good jump due to a transfusion yesterday)

We have been in the hospital almost one month. Matt continues to make excellent progress. The doctors are pleased and I am thrilled to see him getting better every day. The nurses all say he looks great. He really has come a long way. He does physical therapy twice a day and yesterday he walked 17 laps around the unit. I commented to the doctors that 17 laps probably equals the distance from Matt's room to the parking garage - hint, hint!

Today, Matt will leave the unit for the first time since early May. He will go to the physical therapy gym to work on some equipment. This is a very big step for him and will provide a much needed change of scenery. Karen, the PT, is very good with Matt and knows how to get the most out of him. Yesterday she worked on his arm strength, and getting that "pitching" arm back to work.

Matt's mouth continues to be his source of pain. The sores are healing nicely but it will take a few more days until they are completely healed. When they are healed, he will be able to start eating. He is drinking up a storm, which is a good start. I wish he would eat a whole plate of steak and crab legs right now. It would do my heart good to see that!

David and the other kids are keeping things together at home, trying to adjust to Aunt Chris' departure. She sure made things easy for them. They really miss her and so do I. Our continued thanks to all of you who are helping us by running errands, taking care of the kids, cooking meals and visiting us in the hospital. We could not do it without all of you.

- Noelle

Sunday, June 02, 2002 at 09:56 PM (CDT)

Transplant Day +16

Not much more to report today. Matt continues to improve. I kept David's update on the site because it is such a good reflection on this whole ordeal. I want everyone to see it. They discontinued Matt's Neupogen today. His counts will normalize in the next couple of days and we will see what his WBC is then. He has increased his walking time and is drinking tons of fluids! His skin is improving. No one has mentioned a date yet for coming home but i hope to discuss that tomorrow with the doctor!

A great thing happened tonight - a couple of kids from the Mt. Lebanon High School Championship Baseball team stopped at our house to give Matt a hat signed by the entire team! What a treat! He will treasure that hat. Thanks guys! More tomorrow...

- Noelle


Saturday, June 1

Transplant Day +15

I think Matt's got more white blood cells then he knows what to do with! His ANC (the disease fighting WBCs) are now over 10,000, with the normal range of 4,000-8,000. Most of these are immature cells, and most are due to the Neupogen he gets daily that stimulates their production. Still, the fact that his marrow is producing so well is good news.

The mouth is looking much better but is still painful. He is now drinking water regularly which is a good start. Next we move on to juice, Gatorade, or whatever he wants and then onto solid foods. He is doing more physical activities each day so the end of this hospital stay is in sight.

He is tired of being here now and tired of the pain - he is cranky at times! Of course, the morphine is not helping as it makes him agitated and have mood swings.

It's a relief to know that this battle appears to be won, but we still have a ways to go to win the war. Once home (which I think is going to be a hard transition for all of us), we will need to be very careful with respect to infections until 100 days past the transplant (we are at day +15 now). That won't make a fun summer for Matt - no McDonalds, no swimming (maybe they'll take his central line out before the end of summer so he will get to?), no large group of friends, no Kennywood... He'll also be pretty fatigued. We've heard that it can take months and even years to overcome the fatigue due to a bone marrow transplant. It's hard to believe that they basically killed him and brought him back to life... what his body has been through!

Once the 100 days is past, he can start easing into a more normal life. Unfortunately, that "normal life" will not include school. His immune system is shot, so he no longer carries antibodies to anything and will need to get all his immunizations all over again. School is too much of a breeding ground for every and any infection out there. Most kids are immune and have the antibodies to fight them, so its no big deal for them but not for a BMT kid. He'll probably be back to school in January, or so they are telling us.

The war cannot be declared victorious until he goes cancer-free, basically after 5 years. He'll be getting scans and tests regularly - weekly at first, then monthly, then bi-yearly, then yearly. We'll always live with that threat hanging over us...

Well, enough looking into the future. We'll just keep concentrating on this battle, this day, and tomorrow will come on its own.

- David

Saturday, June 01, 2002 at 10:27 PM (CDT)

Transplant Day +15

I think Matt's got more white blood cells then he knows what to do with! His ANC (the disease fighting WBCs) are now over 10,000, with the normal range of 4,000-8,000. Most of these are immature cells, and most are due to the Neupogen he gets daily that stimulates their production. Still, the fact that his marrow is producing so well is good news.

The mouth is looking much better but is still painful. He is now drinking water regularly which is a good start. Next we move on to juice, Gatorade, or whatever he wants and then onto solid foods. He is doing more physical activities each day so the end of this hospital stay is in sight.

He is tired of being here now and tired of the pain - he is cranky at times! Of course, the morphine is not helping as it makes him agitated and have mood swings.

It's a relief to know that this battle appears to be won, but we still have a ways to go to win the war. Once home (which I think is going to be a hard transition for all of us), we will need to be very careful with respect to infections until 100 days past the transplant (we are at day +15 now). That won't make a fun summer for Matt - no McDonalds, no swimming (maybe they'll take his central line out before the end of summer so he will get to?), no large group of friends, no Kennywood... He'll also be pretty fatigued. We've heard that it can take months and even years to overcome the fatigue due to a bone marrow transplant. It's hard to believe that they basically killed him and brought him back to life... what his body has been through!

Once the 100 days is past, he can start easing into a more normal life. Unfortunately, that "normal life" will not include school. His immune system is shot, so he no longer carries antibodies to anything and will need to get all his immunizations all over again. School is too much of a breeding ground for every and any infection out there. Most kids are immune and have the antibodies to fight them, so its no big deal for them but not for a BMT kid. He'll probably be back to school in January, or so they are telling us.

The war cannot be declared victorious until he goes cancer-free, basically after 5 years. He'll be getting scans and tests regularly - weekly at first, then monthly, then bi-yearly, then yearly. We'll always live with that threat hanging over us...

Well, enough looking into the future. We'll just keep concentrating on this battle, this day, and tomorrow will come on its own.

- David

Friday, May 31, 2002 at 11:03 PM (CDT)

Transplant Day+14

Matt's counts continue to improve. The doctors are encouraged by his progress. They have decided to discontinue most of his antibiotics. They are cutting down on his IV nutrition too. The goal is to get him to want to eat and drink. He does want to drink but his mouth is still very sore from the mucositis. Hopefully, in a few days he will be eating and drinking something.

Matt walked 7 laps today around the unit. This is a great start. He is also working hard with the physical therapist to gain muscle strength. The next couple of weeks will be focused on getting Matt strong. In order to leave the unit, he must be able to walk out!

Matt and I had a visit today from those "funny ladies" as they are known on 8N. (Franci and friends) I got to go out to lunch - a real treat. Thanks to Becca for sitting with Matt while I got away.

I am home tonight, spending a last night with Aunt Chris. Matt was excited to spend a night with Dad - I think he is getting tired of me. Tomorrow I will take Aunt Chris to the airport and then back to the hospital for me.

- Noelle

Friday, May 31, 2002 at 08:02 AM (EDT)

Transplant Day +13

Sorry for the delayed update! The Caringbridge servers were down last night and I couldn't post an update. I am posting for yesterday. Matt had a great day, though. His counts:

WBC - 8.8
HGB - 8.8
Platelets - 14 *needed two tranfusions today
ANC - 7656

Matt's counts are actually good enough to come home. However, he is not strong enough and is still on pain meds. His goal is now to get off the medications and increase his strength. They are gradually weaning him from the dilaudid (painkiller) by reducing his dose each day by .5 ml. At that rate, he should be off the meds sometime next week. Physical therapy comes every day to help with the muscle tone and basics like walking and moving. Matt's skin is getting better each day. He does not look sunburned any more!

The family came in to visit Matt tonight. Anna had not seen him in over three weeks. She told everyone yesterday that she was going to see her brother. It was a nice visit but the commotion that is our usual family routine overwhelmed him and we cut the visit short. We have to work on getting him (and Mom!) used to this chaos again - the hospital is a pretty quiet place! I enjoyed seeing all of them.

Another weekend looms ahead. They are the worst in the hospital because the world virtually stands still. I will go home on Friday night to be with the children and see Chris, who is spending her last night at our home. She returns (boo hoo) to Mexico on Saturday. Her trip to North Carolina was safe and she is grateful to have been able to see her friend in such a time of need. Thanks for all your prayers!

Thanks for sending messages and emails too. I read every one of them and at times, they keep me going. Matt enjoys the messages on the web site. Thanks for the prayers, meals, childcare and for hanging in this with us. It is a long journey but Matt is winning the battle and in the end, that is all that matters!

- Noelle

Wednesday, May 29, 2002 at 08:46 PM (EDT)

Transplant Day+12

WBC - 7.5 (normal is 4 - 10)
HGB - 9.9 (Normal >9)
Platelets - 14 (Normal 150 - 400) * needed a platelet transfusion today
ANC -5850 (Normal >1000)

Once again, Matt's counts almost doubled today! They are very good and the docs have allowed him to leave the room with a mask on if he would like to. However, he is so wiped out that he could only sit in a chair for about 1/2 hour today. That is a start, though! His skin looks much better and the mucositis is starting to heal. His tongue is not as sore today. The docs are starting to wean him off the painkillers and some of the antibiotics. Matt has not had a fever in two days. This is all really good news.

The goal now is to get Matt strong enough to come home. Yes, come home! It sounds so wonderful. As soon as he is able to get off the painkillers and the TPN (Total Perental Nutrition), he will be allowed to go home. So, it is up to Matt's body to get stronger each day. I know he is up to the challenge.

Physical therapy will be working with Matt to increase the strength in his legs and arms. One of his "homework" assignments is to walk around the unit once tonight. We will see if he can accomplish this task. It looks daunting now, but I bet he will be able to complete it.

Thanks for all the messages, cards and lottery tickets! Matt is having a ball with them! The local store owner thinks I have a pretty healthy habit going here because I turned in 10 winners today! Please continue to keep Matt and our family in your prayers. We appreciate all of them.

- Noelle

Tuesday, May 28, 2002 at 07:17 PM (CDT)

Transplant Day+11

WBC - 4.9 !!!! (Normal is 4 - 10)
HGB - 9.6 (Normal >9)
Platelets - 35 (Normal 150 - 400)
ANC - 3332 (Normal >1000)

The counts are good. They are just about doubling every day. Matt's body is busy making cells. However, he is still in a lot of pain from the mucositis. Every day that goes by is a step in the right direction. His mouth looks better today. He is getting a lot of sleep thanks to the pain killers. Unfortunately, he is not getting much sleep at night. I think this is because he is getting his days and nights mixed up. We are working on this by trying to be a little more active in the days. He sat up in a chair for ten minutes today. This was a big accomplishment.

I got to leave for a couple of hours today and Aunt Chris came to stay with Matt. It did me a world of good to leave in the sunshine after spending all of Memorial Day in Matt's room. David and Megan also came to visit Matt tonight.

Thanks for all your prayers. They are so much appreciated. Please pray for Matt's continued healing, my strength, for David and the other children and for Aunt Chris. Please hold her in your prayers as she travels to North Carolina tomorrow, by car, to attend the funeral of a close friend's 15 year old daughter who was tragically killed in a quad accident. I know Chris' presence will bring some comfort to that family. She will return to us on Thursday evening. Thanks to all of you who are sending email, packages, letter, messages and food. We appreciate your support. Every day is a step towards Matt's new and bright future.

- Noelle

Monday, May 27, 2002 at 09:02 AM (EDT)

Transplant Day+10

Morning Update

MATT HAS CELLS!!! It is true...almost impossible to believe but Matt has a great count this morning. We have been hesitant to report the numbers until we knew if it was a trend or just a fluke. However, here they are:

5/25 WBC- .4 ANC- 44 (normal WBC is 4-10, normal ANC - >1000)
5/26 WBC- 1.0 ANC- 470
5/27 WBC- 2.7 ANC- 1917

These are really great numbers. Matt is on his way and his body has figured out what to do again. It is amazing.

Matt's pain is still bad although it is really only in his throat and mouth now. The abdominal pain has gone. In a few days, with these counts, his body should be able to repair the damage in his mouth and he should be feeling better. We both got some sleep last night. I know that really helps him.

Thanks to all for your prayers. The end of this is in sight now.

Sunday, May 26, 2002 at 10:43 PM (CDT)

Transplant Day +9

It's dad again. I have good news, the same news, and bad news tonight. The good news is that Matt had a great white blood count this morning and a really good neutrophil count (those white blood cells that fight infection). It appears that he has engrafted well and is now producing his own blood cells, but we need a couple more days like this to really know that we are on track.

The "same" news is that he continues to have severe mucositis and his mouth and throat in particular are causing him lots of pain. They again upped his Dilaudid dose (they switched from morphine which was causing him to itch like crazy!), but even so he requested a number of "rescue" doses (a little extra) throughout the day.

The bad news today was that he had a little tongue trouble. As the lining of his mouth sloughs off due to the chemo and radiation, so too did the top layer of his tongue... Good thing mom was not here, otherwise we all would be making trip to the adult ICU. ;^) Fortunately it did not cause him more pain than he already had but it did shake him up a bit. By the end of the evening he was back to his ornery self (yes, he is a teenager and he is getting better!) complaining if his sheets weren't positioned just so or we rubbed creme on his itch too hard.

Thanks to Chris and Lea Ann for planting the front flower bed! Thanks too to all who have been supplying me with dinner all these weeks - I've really enjoyed them!

Grow cells grow!!

Saturday, May 25, 2002 at 06:07 PM (EDT)

Transplant Day+8

Another sleepless night. I am not sure how many more of these we can take. Poor Matt got no rest last night. The medication he is on is making him fidgety. He can only rest for about 15 minutes at a time. His mucositis is severe now in his mouth and throat. His pain in the gut is almost gone. So one thing gets better and another gets worse. He really needs to rest.

We spent the morning sleeping, trying to make up for our night. If you tried to call, I apologize - I unplugged the phone to get some rest. My friend Lisa stopped by with great food for lunch and Matt was feeling good enough to watch a movie so we sat outside on the patio. How wonderful to see and feel the sun!

The docs think Matt is coming along great. He started the amphoteracin - B today, a medicine to prevent fungal infections. This is just a precaution because he is still running fevers. The nurse told me that he is now on every medication they ever use for transplant patients. This makes him quite a popular guy with the nurses. That is also the reason no one can get any rest - he receives meds around the clock.

Tomorrow should be the day. We are hoping that his counts will be on track tomorrow. Hopefully, I will have great news to report. Thanks for the cards and letters. The lottery tickets are so much fun and Matt is up to $100 in winnings. Not bad - I bet you all didn't realize you were so lucky! I am going home for a night's rest tonight. David and I figure that if we take turns, we won't get so worn out.

- Noelle

Friday, May 24, 2002 at 08:25 PM (EDT)

Transplant Day+7

Another day has passed here on 8N, our home away from home. Matt had a pretty good day in spite of his severe mucositis and his "burned" skin. He looks like he stayed out in the sun much too long. His face and eyes are puffy and red. His skin is very tender. This is to be expected since he received Total Body Irradiation (TBI) and a chemo drug that is secreted through the skin.

Matt is on many different meds. It is too much for even me to track. He sure keeps his nurses busy. I am hopping too just getting him things he needs and helping him with skin care and personal needs. I am not sure how am I coping. It is harder now than when he was in the ICU. I think, in a way, I am suffering from a type of Post Traumatic Stress Disorder. That is, he survived the scary part and so did I, but now that he is safe, I am crashing! It is hard, but I know he is getting better. He is much more talkative and interested in his surroundings.

I slept at home last night - thanks David - and I must say, I sure got some good sleep. I planned to take a bubble bath, have a glass of wine and talk to my favorite sister-in-law. However, all I did was pass out on the couch at 8:30!!! Oh well. I am back here with Matt tonight. He is watching TV, which is a good sign. I know our weekend will be quiet as most holiday weekends are. We are planning to spend our LAST holiday in this hospital on Monday. Hopefully, we will have a good report soon!

- Noelle

Thursday, May 23, 2002 at 02:40 PM (EDT)

Transplant Day +6

Matt is finally back on 8 North. We just arrived. We are so glad to be back. The nurses in the ICU were great but it was such a depressing place. Our room in the ICu was way in the back and it was very dark. Because Matt had to be in isolation, it was far from all the activity which just added to our feelings of isolation. Matt's pain comes and goes. He has waves of nausea and abdominal cramping. His fevers are still present but he really looks like he is improving. Each day is a step in the right direction.

Please continue to pray for Matt. I know that he will be ok and as each day passes, he will get a little stronger. I am going home to SLEEP tonight. David will be pulling hospital duty. I also want to see the other kids. I miss them so much.

- Noelle

Wednesday, May 22, 2002 at 07:08 PM (EDT)

Transplant Day+5

We are still heeere...Matt is still in ICU. It seems that once a unit gets a patient they love, they will NEVER let them go. The word is out - the nurses in ICU love Matt. They refuse to let the nurses on 8N have him back.

All kidding aside, Matt still needs to be monitored in a way that only the ICU can do. His blood pressure is still on the low side and he is still having fevers that cannot be attributed to any single bacteria. Even though he had e-coli earlier, they are certain that that bug is covered with the meds he is on. However, they are not so sure that he doesn't have some other bug. And so it goes. They must take blood cultures every 12 hours and see what grows. It is our hope that it is another bacteria. However, there is a possibility that he might have a fungal infection. This is not a good thing, but if caught early, which it would be at this point, it is ok because there is a medicine he can take.

The docs will wait until Friday to start him on the anti-fungal medicine. In the meantime, if his fevers go away or something else grows then he won't have to start that medicine. Matt is still in pain. He really wants to go back to 8N as well. It is a much brighter, cheerier environment and much more conducive to "healing." The ICU is no place for someone who acts as good as Matt. That is the problem - he looks and acts well but the numbers don't agree.

Please pray for my strength to get through this tough time. I am going on very little sleep. Also, pray for the family at home and for Aunt Chris and David to hold down the fort. Thanks for all your messages - I read each one of them to Matt. It is so isolating in that unit that we look forward to any communication from the "outside." Hope to have good news tomorrow, although that is beginning to sound old. Matt's counts are decent thanks to transfusions and hopefully, soon, we will see some cells! Grow cells, grow!

- Noelle

Tuesday, May 21, 2002 at 03:14 PM (EDT)

Transplant Day+4

Evening Update:

Matt's blood pressure has stabilized but he has a pretty high fever tonight. Please keep him in your prayers. They will also be giving him more blood and platelets tonight as his counts continue to be at bottom. He is in a lot of pain but is getting some relief from morphine and benedryl so that he can sleep. If he has a good night, we should be going to 8N in the morning.

Morning Update:
Matt is still in the ICU. The doctors were preparing to transfer him to 8N when his blood pressure started to go down again and they decided to keep him at least another day. This is not a bad thing, it is just a precaution. If Matt gets to 8N and his blood pressure falls again, he will end up back in the ICU anyway. It is not good for him to be moved all over the place so the docs decided to give him one more day of "individual attention" to get him better. As his mother, I have no qualms about them deciding to provide another day of one-to-one care for my child. The ICU is very attentive to his needs.

However, we still really miss the staff on 8N and they miss him. Many have asked about him and seem to genuinely care about him. It is much more difficult for us to be in ICU. I am feeling very isolated. We are in a room to ourselves and it is a hassle for me to even go to the restroom. I only leave Matt between 7-8 am and 7-8 pm when the nurses have report. We are REQUIRED to leave then. Matt doesn't like it, but frankly, that is the only time we get to eat or take a break. He is getting used to it.

Matt is having a lot of belly pain. The mucositis has spread throughout his GI tract. They are trying to make him comfortable but he is still in pain. Hopefully, he will not remember a lot of this part. He has slept through quite a bit already.

Thanks for the cards and letters. Matt wakes up each afternoon to open them. I really appreciate all the email. While it is really difficult for me to respond, I am thrilled to hear from everyone. As I said, this is very isolating and I am looking forward to our return to a more "social" environment.

Hopefully, tomorrow will be the day. Actually, it will be when it is right for Matt. He will be able to tell the doctors and his body will show us that it is healing. In the meantime, all we can do is wait, hope and pray...

- Noelle

Monday, May 20, 2002 at 06:33 PM (EDT)

Transplant Day+3

Thanks to all for your prayers and messages. These have been two very tough days for us. Matt is finally stable and we will be going back to our "home" on 8N tomorrow if all goes well tonight. His blood pressure is stable now and had been throughout the day. They have removed most of the medicines that they used to stablize him and the last will be removed tomorrow morning. If all goes as planned, we will be transferred after that.

Matt has severe mucositis throughout his entire GI tract from the lining of his mouth, to the lining of his throat, all the way down through the GI tract. This mucositis enabled a normally harmless bacteria called E-Coli into his blood stream. Once in the blood, the bacteria multiply rapidly and cause a significant decrease in blood pressure. That is what happened yesterday to Matt. The good news is that the folks here know just what to do. They put him immediately on three different antibiotics, hoping that one would cover the type of bacteria even before they know what it is. They also used medicine called pressors, which help in increase blood pressure. Once again, the approach worked and Matt is getting better.

Matt still has no white blood count. This is expected, for it is early in the game. However, without a blood count and no ability to fight infection, he is really at risk. He is doing well, though. The ICU has been terrific. They monitor everything and a nurse is never more than a few feet away from him.

The down side to this is that neither Matt nor I can get sleep. Because they are so good at what they do, the ICU nurses rarely leave the patient alone and the lights are always on! So, we are looking forward to going back to our quiet room on 8N for some much needed rest.

Aunt Chris is a saint. She has been holding down the fort. Already Anna has figured out that when Aunt Chris is there, Mommy and Daddy disappear. She doesn't like that but Aunt Chris is doing a great job. Thanks to all who are sustaining us right now. The prayers, food, childcare, calls, emails etc. are really helpful.

Looking forward to updating tomorrow from, hopefully, 8N. God Bless.

- Noelle

Sunday, May 19, 2002 at 11:54 PM (EST)

Transplant Day +2

Just a quick update (from Dad this time!). Matt has been in ICU since lunchtime today. After a bad night Saturday night, his blood pressure dropped to 80/20 sending him down to the ICU where they adminstered blood pressure medication to bring it back up, Fortunately it worked and he is stable and relatively calm and painfree (thanks to the morphine). They aren't sure what caused it since it could be due to many things: loss of fluids, reaction to the infection, ... Hopefully they will bring him back up to his room here on 8 North (where I will be spending the night) tomorrow once they wean him off the medication. He is battling some kind of an infection - it will take another 24 to 48 hours to determine what exactly it is - so he is on various antibiotics and Tylenol to keep the fever down. He is also showing signs of the mucositis (the breakdown of the lining of his mouth through his intestines due to the chemo) starting. All of this is to be expected, including the trip to the ICU.

So much for the medical update. Noelle is taking all this as well as one could expect, but it is tough to watch Matt go through all this, and seeing the ICU for the first time is unnerving in itself. The nurses have been great, and with Matt's neutropenia (i.e. no ability to fight infection), he is in isolation and we have a private nurse. Sitll, it's not "home" here on 8N. I left the kids just before lunch not knowing that'd I'd be gone all day and night (I'm trying to write this without my glasses and my contacts are in little cups!), so they are understandably not happy about their life also being turned topsy turvy. We are blessed to have Chris staying with us just for this kind of unexpected event! Thanks to MELB Greg for letting her help us!

A special thanks also to Lynn for bringing us dinner - it was an unexpected but much appreciated gesture! Thanks to all who continue to keep Matt and Noelle and the rest of us in prayer.

Dave

P.S. MELB = My-Ever-Lovin'-Brother

Saturday, May 18, 2002 at 07:29 PM (CDT)

Transplant Day +1

Evening Update:

Matt is very sick. They expected it and are reacting to it. His temperature has climbed to 102.2. He is now on two antibiotics, one antiviral med, an antifungal med, morphine around the clock, tylenol, neupogen to stimulate cell production and TPN for nutrition. He is pretty much sleeping through most of it and seems to be comfortable and out of pain. That is the important part. The doctors don't want his body doing anything other than making cells. They don't want him fighting infection or fever or pain.

The nurses are monitoring him closely. We have one of our favorites, Bridget tonight. Another of Matt's favorites, Amy took really good care of him today. He sure kept her jumping with all the meds. He is in very good hands. Please pray for him tonight. It will be a long night.

earlier this morning...

Counts:
WBC - .1 (almost bottom)
Platelets - 40,000 (normal 150 - 400,000)
HGB - 8.0 (Transfusions begin at 7.5)

As expected, Matt's white count is pretty much at bottom. His platelets are ok so far and his hemoglobin (HGB) is falling. Matt had a very pain-filled night last night. He was asking for morphine almost every two and a half hours. He has developed severe mucositis (inflamation of the mucous membranes) in his throat. This is totally expected when receiving high-dose chemo and radiation. They will start Matt on a PCA (Patient-controlled Analgesic) pump today. That is a pump system which he can control. When he is in pain, he can simply push a button to receive a dose of medicine. He will probably get less medicine this way but be able to control it better. He cannot eat because of the phlegm in his throat so the doctor has ordered TPN (total parental nutrition) for him. This is nutrients through the IV. As the doctor explained it, they do not want his body to be looking for nutrients instead of working on getting better. This will give his body the ability to be at total rest. That is what he needs for the next few days.

In spite of all the pain, Matt really looks good! The doctor even said so. It is hard to believe that he is so sick. His temperature has started to go up a little and this will warrant the docs adding antibiotics soon to his array of medication.

The prayers are working! Please continue to pray for our strength. He had a very restful night in spite of his pain and I was able to get some much needed sleep. Thanks to my friend, Karen, who dropped off some "real food" for me. Thanks for all the meals at home, errands, childcare, etc. Keep thinking and praying - GROW.

- Noelle

Saturday, May 18, 2002 at 11:15 AM (EDT)

Transplant Day +1

Part 1

Counts:
WBC - .1 (almost bottom)
Platelets - 40,000 (normal 150 - 400,000)
HGB - 8.0 (Transfusions begin at 7.5)

As expected, Matt's white count is pretty much at bottom. His platelets are ok so far and his hemoglobin (HGB) is falling. Matt had a very pain-filled night last night. He was asking for morphine almost every two and a half hours. He has developed severe mucositis (inflamation of the mucous membranes) in his throat. This is totally expected when receiving high-dose chemo and radiation. They will start Matt on a PCA (Patient-controlled Analgesic) pump today. That is a pump system which he can control. When he is in pain, he can simply push a button to receive a dose of medicine. He will probably get less medicine this way but be able to control it better.

He cannot eat because of the phlegm in his throat so the doctor has ordered TPN (total parental nutrition) for him. This is nutrients through the IV. As the doctor explained it, they do not want his body to be looking for nutrients instead of working on getting better. This will give his body the ability to be at total rest. That is what he needs for the next few days.

In spite of all the pain, Matt really looks good! The doctor even said so. It is hard to believe that he is so sick. His temperature has started to go up a little and this will warrant the docs adding antibiotics soon to his array of medication.

The prayers are working! Please continue to pray for our strength. He had a very restful night in spite of his pain and I was able to get some much needed sleep. Thanks to my friend, Karen, who dropped off some "real food" for me. Thanks for all the meals at home, errands, childcare, etc. Keep thinking and praying - GROW.

- Noelle

Friday, May 17, 2002 at 03:47 PM (EDT)

Transplant Day!!! Day 0

The big day has finally come and gone without any "surprises." That is such a great thing to report. Matt received his own stem cells - four bags of them - at 10:00 this morning. He was mildly sedated but still aware of what was going on around him. David, Megan and I were present along with Dr. Terszak, Tammi, the Physician's Assistant, Nurse Heather and Becca, the Child Life Therapist.

At about 10:15, Phil, the "keeper of the cells" walked into the room with an ice chest. From the chest he removed a very flat, frozen bag of Matt's stem cells. He put them into some warm water where they quickly thawed and then he transferred them to a large syringe. The syringe (containing about 50 cc of cells) was then injected by Dr. Terszak into Matt's catheter. Matt was hooked up to heart and oxygen monitors. The cells were slowly injected, taking about 10 minutes. This was repeated three times until all the cells were injected. Matt didn't flinch and his vital signs stayed stable. We all breathed a collective sigh of relief because I think many of the docs had expected that Matt, who reacts to many things, would react to the preservative in the cells. He did not and did extremely well throughout the procedure and the rest of the day.

Now the waiting begins. Matt's counts were pretty low today but they expect them to "bottom out" soon. He is extremely tired and in danger of infections without a mature immune system. However, they are prepared for whatever may arise.

Thanks to ALL of you who were praying at 10:00 this morning. Those prayers were felt by all of us in the room with Matt. OK, now all we have to do is think:
GROW CELLS - GROW!!!

- Noelle

Thursday, May 16, 2002 at 09:48 PM (EDT)

Transplant Day-1

Well, it has finally arrived. The day we have all prepared for. Matt is ready to receive his new stem cells tomorrow. It is a really big day in our lives. He is doing just fine right now. He is resting and while he is extremely tired, they have been able to control his nausea today and he is actually nibbling on some food! David is with him at the hospital and I am at home with the other children.

Aunt Chris arrived safely and thanks go to Lea Ann who picked her up at the airport. The children are so excited to see her. So am I. The actual transplant will take place at 10:00 in the morning. Megan will stay home from school because she wants to be with Matt and he really wants her to be there. We will be leaving early in the morning for the hospital. Aunt Chris will run things at home.

There have been many wishes sent our way tonight. Thanks to everyone. Please say a prayer at 10:00 for Matt tomorrow. I know things will go well.

- Noelle

Wednesday, May 15, 2002 at 08:03 PM (EDT)

Transplant Day-2

Time is passing very quickly and at the same time when looking back over the past few days, it seems to have passed slowly. Matt continues to do very well in spite of receiving the TBI. He does seem to be getting more and more tired. Tonight, he is still somewhat nauseous and his appetite is starting to wane. However, his spirits are still high.

We got up very early this morning and went to radiation at 7:15. By 9:00 we were back in our room. Once again, the staff at Presby were great. Nurse Amy, over there, spent the time talking to me and keeping me calm. I like how gentle and caring they are with Matt.

My friend Lynn came to stay with us today. It really helps me to have someone to talk to. She also brought the best food I have ever tasted in the world (ok, it might not have been the best, but to someone who hasn't had home cooking in awhile it sure tasted good) from my friend, Franci. Thanks to both of you.

I talked to the Head of BMT today, Dr. Goyal. He stopped over to see us this afternoon. He is pleased at Matt's progress but warned us that the worst is yet to come and that the next week will be tough for Matt. Please pray for his strength to battle the infections, mouth sores, tiredness, pain and nausea. As soon as he starts showing signs of sickness, though, the staff will put him on painkillers. He will not have to be in any pain. Matt hopes he sleeps through the whole thing. I do too.

I will go home tomorrow to get a much needed night of rest and see the other children. Aunt Chris arrives too. David will get to be with Matt. God bless of all you. You are such a source of support to us. Thanks to all who wrote and told me they appreciated my Mother's Day entry. I am glad you liked it. It was from my heart.

- Noelle

Tuesday, May 14, 2002 at 11:23 PM (EDT)

Transplant Day -3

Today was the first day of Total Body Irradiation (TBI). Matt did very well but it was emotionally draining for me. It took us 15 minutes to walk to Presby to their radiation oncology department. Walking down the corridors was a very surreal experience. It almost played like a bad movie. When we arrived, the excellent staff took over and took good care of Matt. He had to lie very still on a hard bench for 10 minutes on each side. A huge machine aimed its beam at him and we all scrambled behind a lead wall to take cover. This was the hardest thing for me to do. All these years I have tried to protect him from all the little things and here I was letting him lay in the path of a monster of destruction. I can only pray it worked.

The rest of the day was spent on bathing (we are still doing 4 per day) and other routine tasks. It is hard to do anything else. The day becomes filled with these activities. Matt is a little tired and nauseous but they expect him to be. Tomorrow, he will receive two more doses of the radiation.

Thanks to our visitors today - Aunt Belle and Nancy. You cheered us up and I am sorry that we couldn't spend much time with you. Matt is so excited. He received several lottery tickets in the mail but two $2 tickets were expecially lucky! He won a total of $59 from those two tickets. Sure made his day! Thanks to all who sent them.

Please continue to pray for all of us. Matt has developed a cough that they think is related to sinus drainage. They plan to start him on Zithromax tomorrow. Please pray that it does not get any more serious than that. Blessings to all.

- Noelle

Monday, May 13, 2002 at 10:43 PM (EDT)

Transplant Day -4

Matt is done with chemo! We hope and pray that this is Matt's last dose EVER of chemo. He is such a trooper. He got through it with flying colors, as usual. He was able to tolerate most of it without getting sick.

The days are passing quickly, filled with medicine, new routines and anticipation. Tomorrow brings a new challenge for Matt. He will receive his first dose of Total Body Irradiation. I am more nervous about this than he is. The docs told him it will not hurt and that he probably won't get too sick from it right away. So, at 7:00 a.m., we will wheel him over to Presby for his first encounter with radiation. Please pray for both of us - that Matt has no problems with it and that I can relax and stay calm for him.

David and Megan came out today to see Matt. He lights up when she comes to see him. It is nice to see them get along so well. Noone can get him to do things better than Megan. I got to take a shower while they were here and David and I went downstairs for a coffee "date" to talk about things. It was nice to see them.

After a rough start, I am starting to feel more comfortable here. Our favorite nurses are back from a weekend off. It is amazing how much of a difference it makes when you have nurses who know your child, who know you and who take time out of their very busy scheduleds to give a comforting word. I am so thankful for them.

Thanks to everyone for pitching in to help us. It is amazing how people are showing up from all kinds of places to shop for us, cook for us, and take of the little things. I am also so grateful to have found a wonderful babysitter for the summer. Her name is Jen and she is a delight. We are all looking forward to Aunt Chris' arrival on Thursday, especially the kids at home. They need a "mom" to pamper them and to let them know they are loved. I know she will do that.

Thanks for your prayers - we are so lucky to have all of you pulling for Matt. Day by day, hour by hour, we are getting through this.

Sunday, May 12, 2002 at 08:02 PM (EDT)

What a strange place to be on Mother's Day. I felt for all the mothers on this unit. It is sad to be spending another day in this hospital yet this day was very meaningful to me. I felt like I actually was doing all the things for Matt today that we do for our children on a daily basis - prepare food, clean up, do laundry, bathe them, etc. The difference is that I appreciated doing these small things for him in a way I never would or could before his illness.

He must take four baths a day to rid the skin of the toxic chemo drugs. I felt so lucky to be giving him those baths today. As I filled the water, I thought of all the times I filled a tub for him as a baby. I would carefully check the temperature of the water. I would be sure to have a warm room and warm towels. As I washed his skin, I would be sure to get in the creases and tried so hard to protect his delicate skin. I was priviledged today to share those baths with him. How many of us get to be close to our almost 13 year olds? How many of us get to spend an hour, four times a day in a quiet room with them? I felt like the care I gave Matt today was what being a mother is all about. I am blessed. Happy Mother's Day to all of you. I hope you got to spend some of this precious quality time with your children today.

- Noelle

Saturday, May 11, 2002 at 10:52 PM (EDT)

Matt had a pretty uneventful day. The second high-dose chemo drug was started at 10:00 and I am happy to report he had no reactions to it. This is the drug which is excreted through the skin so Matt started taking baths in a special cleansing solution. He has to take four of these a day! So far, no extreme side effects other than he seems a bit more tired than usual.

Cards are starting to pour in and Matt is delighted. Thanks to all of you who sent them. They are cheering both of us up! He has received several from people on a lymphoma group from the internet and they are from places all over the world. It is nice to know how everyone is pulling for us.

Tomorrow is another day of Thiotepa. Four more baths. David will bring in the kids (minus Megan who is at a crew race in Detroit) to celebrate Mother's Day with me. I really miss them. Today, I got to go home and spend a few hours with Alex and Anna. I also got to see Alex pitch at his baseball game. He is so good. It was nice to be out among the "normal."

Please continue to pray for us. The prayers are working. We feel very peaceful and strong.

- Noelle

Friday, May 10, 2002 at 10:56 PM (EDT)

7 days until Matt's Transplant (Day -7)

Matt began his journey today. The first high-dose chemo drug was hung at 10:00 a.m. after a pretreatment regimen of several drugs to combat nausea. Matt did very well in spite of things. He did have a couple of his notorious "reactions" but the nurses were able to get his symptoms under control.

I was grateful to my friend, Barb, for coming to visit us. We took a walk around Oakland to pick up some things for Matt. It felt great to be outside. The rest of the day was very quiet. Matt spent most of it watching TV and sleeping.

Tomorrow, Matt starts a new drug called Thioteppa. Of course, until I see if he reacts to the new drug, I will be on pins and needles. I am really glad because Matt's own doctor, Dr. Wollman, is on rounds this weekend and we will see him. He knows Matt inside and out and can help if he needs some other medicines.

We are one step closer to the end of this long journey. Please keep us in your prayers. It is a very difficult time for us. We are trying to stay positive.

- Noelle

Thursday, May 09, 2002 at 06:01 PM (EDT)

Transplant Day -8

Today was a relatively easy day for Matt. He is still in some pain, but morphene is taking care of that! I want to clarify - yesterday Matt's surgery was to place a new catheter in his chest so that he will have four lines for the transplant. He did not have the transplant yet! I am sorry if I was not clear on that. The transplant will not happen until next Friday, May 17. Until then, he must undergo the "preparatory" regimen. This is the high dose chemo and radiation that kill the bone marrow.

Some have asked why the docs need to kill his bone marrow if it was "clean." The preparatory regimen (also called myleoblative therapy) is necessary because it is the high doses of chemo that are needed to destroy any cancer cells left in his body. However, when someone receives these high doses, there is no chance of their bone marrow regenerating on its own. Hence - the marrow must be "rescued" with his own stem cells. So, that rescue will take place next Friday after he has undergone a week of very harsh treatment.

The hardest part of the transplant are the two weeks after the actual cells are put back into him. This will be Days 0 - 14. These are the hardest because he will have virtually no immune system until the cells "engraft." Engraftment can happen any time from Day 7 - 14. This is a scary time. Many infections can develop although the docs are prepared with antibiotics just in case.

So, tomorrow begins Matt's journey to a cure for this awful disease. He will receive a 24 hour infusion of a chemo drug that he has had before in a very small amount. He is such a brave fighter. He is upbeat, positive and ready to do whatever they ask of him. I am not so sure if we are so brave. We need lots of prayer and support to get through these next few weeks. I know we can count on all of you.

- Noelle

Wednesday, May 08, 2002 at 067:45 PM (EDT)

TRANSPLANT DAY - 9

Matt's surgery was a success! He is still at the hospital, however, as he had a little more pain than expected. He also did not go into surgery until late in the afternoon and they would have had to keep us there until well past 8:00, only to return tomorrow morning. I am glad that he stayed because I wouldn't be able to control his pain at home. So, we moved to Plan B. David is with Matt at the hospital and I am at home, packing all the things we will need for the next few weeks.

We are in our "transplant" room - 8627. While it is not as big as the one I hoped for, it is the same room where we spent three weeks when Matt was first diagnosed. Tomorrow is an easy day for Matt - he will be hydrated all day and no chemo. Megan will be spending the day with him which he is excited about. Not much more to report. Thanks to all who helped us today. Coming home to a cooked meal today was so nice because we were unable to eat anything at the hospital. Also, thanks for the childcare for Anna and Alex that we were able to patch together on such short notice. We are blessed to have a support system.

- Noelle

Tuesday, May 07, 2002 at 11:10 PM (EDT)

**I ADDED A LINK AT THE BOTTOM OF THIS PAGE TO A VIRTUAL TOUR OF A STEM CELL TRANSPLANT - for those who want more information**

We are exhausted. It has been two very stressful and tiring days for all of us! Today, Matt had pulmonary function tests to see if his lungs are healthy. He gets the thumbs up on this one. Even with a cold he was able to blow out lots of hot air!!! Matt also met with the Child Life Specialist, Becca, to review all the information in his language that we reviewed yesterday with the transplant team. I like hearing this information from Becca because she makes so much sense. We spent the afternoon over at Presby in their radiation oncology department where we met Matt's radiation doctor, Dr. Deutsch. He is very nice and went over in the most excruciating detail what we can and should expect from Matt's Total Body Irradiation (TBI). It is quite daunting to hear about the early and late side effects but having the TBI is the best chance for a cure for Matt. We signed the consent and came home.

We celebrated Matt's "last night at home for awhile" by going to his favorite - Red Lobster. "Goompy" took us all out. Everyone had a great time and Anna even pigged out on crab legs! For all my "germaphobe" friends, Matt asked all the docs and team members at the hospital if he could do this and they said yes. We went early just to be sure we were the only ones in the restaurant. Watching Matt eat was something I will always remember about this night. He just really enjoyed himself so much.

We are scheduled to be at Children's at 12:00 p.m. for a 1:30 p.m. surgery. Matt will have a second broviac catheter placed and will receive an intrathecal (in the spine) dose of chemo and a bone marrow aspiration. He says that as long as he is asleep he doesn't care what they do to him.

Please keep Matthew and our family in your thoughts and prayers tomorrow. He is a pro at surgery now, but nonetheless, it is still surgery.

- Noelle

Monday, May 06, 2002 at 05:21 PM (EDT)

We just returned from Children's Hospital after spending the afternoon talking to the doctor, signing consents for the transplant, meeting with the social workers, and getting instructions from the nurse coordinator. It was a very scary afternoon for us. They have to review everything that could possibly go wrong and while we are focused on getting Matt better and through this as best we can, hearing how sick he will be makes us all uneasy. Matt is a trooper, though. He has the best attitude in the world. He is ready to go and ready to fight.

His counts today are great. His platelets (which have been lagging behind) are higher than they have been since March (120,000). His white count has fallen but it is still in the acceptable range and his hematocrit is good. Basically, he is really strong going into this.

The doctors expect Matt to be very sick. The combination of chemo and radiation are very strong and they know he will have a rough time. However, they also know just what to do to help him through it. So, we have no choice but to go through it to get him to a cure. And we will.

Some friends sent me a card last week. It said on the front cover - "Let Go. Let God." That is what we plan to do. Matt is in good hands. We will be with him every step of the way.

We had a great weekend. Spent Sunday together as a family for the first and probably the last time in a long while. Megan played violin in church and did a wonderful job. Then we saw her race in her first crew race and spent the rest of the afternoon at our cabin. We ate a wonderful dinner at a restaurant together. I put some pictures of this on the site. Check them out.

Thanks for all your prayers. We will spend Tuesday at the hospital again for tests and Wednesday is Matt's surgery to have a second central line placed. We are admitted on Thursday. Please pray for calmness and peace for the entire family this week.

Friday, May 03, 2002 at 06:12 PM (EDT)

GREAT NEWS!!! MATT IS IN REMISSION!!!

The results are in and Matt's gallium scan reveals no visible lymphoma cells. Even cells which were visible before the last treatment are gone. Matt's doctors are very happy. What all this means is that the transplant is scheduled to begin next week.

Here is our tentative schedule:

Monday - We all meet with the transplant doctor to review consents and talk about the entire process.

Tuesday - Matt goes in to the hospital for tests on his lungs and we all meet with the radiation doctors.

Wednesday - Matt has surgery to place another central line (he needs two of these for the entire transplant time), a bone marrow aspiration, a lumbar puncture, and an intrathecal injection of chemo (in his spine).

Thursday - Matt is admitted to our home away from home, 8North, to begin the preparatory regime prior to transplant. High dose chemo begins today. This is Day -8 (8 days prior to tranplant).

Friday - This is Day -7. Another day of high-dose chemo.

If all goes according to this plan, Matt's new birthday, the infusion of his stem cells will be Friday, May 17. I will update this site each day during transplant to let everyone know of Matt's progress. We are very happy at this latest turn of events. Matt is ready to begin the next leg of his incredible journey.

We are so grateful for all of your prayers. This has been an incredible week. We have truly been blessed.

- Noelle

Thursday, May 02, 2002 at 11:50 PM (EDT)

Not much to report today. It was blissfully "normal." Matt was in good spirits and feeling good. His counts, taken this morning by the home nurse, remain high. His white count, still affected by the double doses of neupogen is 40 (normal is 4 - 10).
Platelets are holding steady at 55,000 (normal 150 - 400,000) and his red blood cells are good too. He seems stronger going into this next week than he has ever been before a round of chemo.

Tomorrow, it is off to Children's (we kinda miss the place) for the Gallium scans. Talked to the coordinator today and he has requested a "stat" read of the scans tomorrow afternoon after their completion. So, we might have our answer sooner than later and can begin planning our week. If it is indeed, the week that will begin Matt's stem cell journey, then I have a lot of work to do to prepare us.

I will update the site as soon as we know. If we have asked for your support in the past, know that we will need your support more than ever beginning next week. Bless you all!

- Noelle

Wednesday, May 01, 2002 at 11:22 PM (EDT)

We are home again. Matt was able to leave the hospital today after they removed his catheter. He was so brave when they pulled it out. It was very long and rigid and hurt quite a bit. Thanks to Becca, the Child Life Therapist, he was able to focus on an "I Spy" book while they performed the procedure. Matt also had an echocardiogram, EKG and a Gallium injection in preparation for his scans on Friday.

We will be anxiously waiting for the results of this scan. The coordinator, Jason, set up our entire week next week as if Matt is all set to go for transplant. It is a little scary, but he could be admitted for the transplant as early as next Thursday. We will know for sure on Monday whether he needs one more round of chemo or not. It is getting hectic - stay tuned.

We are glad to be home and Matt will try to enjoy the time at home as best he can without actually being able to go anywhere. I think take-out food is definitely a possibility. Thanks to everyone for all your prayers. We are so happy about the stem cell collection. We hope there is more good news to report soon.

- Noelle

Tuesday, April 30, 2002 at 10:45 PM (EDT)

200,250,000!!! That is the number of stem cells collected from Matt today!!! It is hard to believe but the doctors were able to collect all the stem cells they need for transplant in one session on the machine. We were prepared for the worst case scenario that would require up to five sessions. Our hopes and prayers were answered today!

The day didn't start off well when we arrived at 7:00 for the catheter placement. Matt was not taken down until 11:00. The docs tried to place the catheter in his neck but they ended up having to use his groin instead. The first try into the right side of the groin did not work and they had to insert it into another incision in the left side. Matt was awake for the procedure, not having received enough sedation. Poor guy.

At 1:30, the pheresis began. The nurse stayed on our room with the machine for four hours. Matt asked many questions and she was very helpful and informative. Matt had few side effects and when it was all over, only required a platelet transfusion to replace some lost platelets.

The stem cells were whisked away to be prepared for storage and a sample sent off to the lab to be tested for the presence of stem cells. At 8:30, we received the good news. Mission accomplished - a bountiful harvest.

Thanks to all of you who were praying for Matt today. We are so delighted. Tomorrow, he will get the catheter removed and after receiving an injection of Gallium, we can come home. The Gallium Scan is Friday.

We will remain home until the doctors decide whether to do another round of chemo or go directly to the transplant. The scans must be clean to proceed. Results are expected next Tuesday.

Tonight we will all sleep a little better.

- Noelle

Monday, April 29, 2002 at 06:27 PM (EDT)

We are home after a very long day at the clinic. Matt needed platelets, as usual, so the docs wanted him to come to the clinic and get as many units as possible to build him up for tomorrow's procedure. The surgeons want him to have a platelet count of at least 50,000 before they will operate. As his mother, I am happy for that. So, since his platelet count was 25,000, off we went to the clinic.

We spent most of the day "waiting" for the actual platelets to arrive. Once Matt got the first transfusion, they tested his blood again after a half hour. His count went up to 60,000. This is a good number but Jason, the coordinator, wanted it to be a little higher, given how much his platelet counts have been dropping each day. So we stayed for another round of platelets. The count only went up to 66,000 but this is still a good number. Tina, our nurse, got us out of there just in time to avoid the big rush hour.

Matt is enjoying his last night before the big procedure. He played one single video game today for all eight hours. It amazes me how he can block the whole world out and concentrate on just that game! He is still playing computer games right now. I am so nervous about tomorrow's procedure but he is amazing. He seems so relaxed and carefree. I get my strength from him.

We have to be at the hospital tomorrow by 7:00 A.M. Please pray for us all morning as he first has the catheter inserted under anesthesia, and then, at 10:00, will undergo the first (hopefully only!) pheresis. Our day will be a long one because he will need additional blood products at the end of the session, so pray for our strength to get through the day together. David and I will be with him all day. Please pray for my dad's strength too as he takes care of the rest of the family. I will write tomorrow at the end of the day. Thanks for all your thoughts and prayers!

- Noelle

Saturday, April 27, 2002 at 08:16 AM (EDT)

We are home!!! We came home around 8:00 last evening. Matt feels much better after receiving both red blood and platelets. He enjoyed a night at home, happy to sleep in his own bed. He especially enjoyed eating his favorite McDonald's meal picked up on the ride home. It is so good for me to see him eat well.

We decided to tone down our weekend plans because his counts are that great and we don't want to jeapordize the collection on Tuesday. So we plan to lay low for a couple of days. We have to go to the clinic on Monday for counts.

It is good to be home. The smell of cut grass and the pretty flowers everywhere sure lift our spirits. Thanks for all the messages, cards, meals and childcare. Please pray that Matt is able to enjoy this time off and that his stem cells are growing, growing, growing...

- Noelle

Friday, April 26, 2002 at 03:20 PM (EDT)

We are still here! The counts were good - WBC of 1.6 (doubled from yesterday) and an ANC of greater than 1000! However, Matt needed a red blood and platelet transfusion. Nothing ever moves quickly around here and so we are still here, hoping to go home around 7:00. Matt had a CT scan this morning which went well in spite of him having to be stuck for an IV. The hardest part was having to be without food or drink until 2:00, however he really enjoyed his lunch after it was all over.

Because of a change in scheduling, Matt will not have the Stem Cell collection until Tuesday now. So, we have the entire weekend off and he has great counts. So, the party begins tonight! Our weekend plans will include a trip to the movies, a Pirate game and hopefully, dinner out at Red Lobster. We want to celebrate when we can and now is the time.

I hope everyone has a great weekend. We plan to. Thanks again for all the help this week and pray that our weekend goes smoothly and that Matt and our family can enjoy his time at home.

- Noelle

Thursday, April 25, 2002 at 06:05 PM (EDT)

Matt continues to improve! We are planning to go home tomorrow. His counts are climbing. The white count is .8 today (4 - 10 is normal) and the ANC is 128 (>1000 is normal). Even those these seem low, they are a great improvement over yesterday's numbers. Matt's spirits are so much better. He had a good day and had such a great appetite that they stopped his TPN.

His cravings were satisfied when his Aunt Belle brought him a steak for lunch. I wish I had my camera when he ate that steak. He had such a smile on his face. It did my heart good to watch him eat with such enthusiasm. He is definitely "back."

The plan is to complete the CT scans tomorrow. The oncologists feel that his counts may be climbing rapidly, so we made plans to come back to the hospital on Sunday evening for a transfusion of platelets (which will probably be necessary) and then we will stay overnight so that on Monday morning the catheter can be placed in Matt's neck to collect the stem cells. The only glitch here will be if Matt's platelet count does not go over 50,000. The surgeons require a platelet count > than 50,000 to do surgery. Please pray that they can get Matt's counts over that number. They will do this, if necessary, with tranfusions, but it is far better to have your own platelets doing the job.

Once the catheter is placed, the actual collection, called Pheresis, will take place. This can take up to four hours. After this is complete, Matt will need more blood and platelets, so Monday will be a very long day. If they collect enough cells on Monday, then we will be done with this step. If not, then it will be back to the clinic on Tuesday to collect some more. Please pray that they get all the needed cells in one pheresis. This will be the best scenario for Matt.

All of this is subject to delays if Matt's counts don't climb fast enough. Hopefully, our plans will not be too far off. It is good to come home for at least a day to get out of this small, dark room. It has been a tough week for the two of us. We missed human contact and our family.

Everyone, hold onto your hats, the roller coaster ride will soon begin. Matt is ready and so are we. Grow, cells, grow!!!

- Noelle

Wednesday, April 24, 2002 at 07:49 PM (EDT)

It was a good day. Matt's counts have started to turn. He actually has a white cell count of .2 (4 - 10 is normal) today and an ANC of 8 (>1000 is ideal). Not too high, but definitely going in the right direction. He received another platelet transfusion (his second for this round of chemo). The fevers have stopped and his appetite is starting to return. He is receiving TPN (IV nutrition) in addition to an appetite stimulant and remains on the antibiotics until he has been fever free for three days.

We are still on track for stem cell collection and are just waiting to see the counts go up. We may be here through the weekend but we are not sure. Matt has CT scans scheduled for Friday to see if he is in remission again. Please pray that he is.

We spent the day in our small room until we felt like we had to get out or burst. So we went to the playroom where we did some crafts with a newly diagnosed family. The patient is an adorable little girl who is only nine years old. She is so cute and my heart just went out to her family. I could tell that they were newly diagnosed and still in that fog that surrounds you when you think you are bringing your perfectly normal child to the hospital for what you think is an infection and they tell you that they have cancer! I was feeling down in the dumps all day but when I met this family I wanted to reach out to them and help them because I know just how they feel. They must have been terrified when they saw Matt's bald head and all of the bags on his IV pole. I hope that I was able to make their day just a little brighter by sharing some hints with them to make their stay a little easier. Somehow, when I was doing this I felt a little better all over. I was FINALLY able to help someone else after all these weeks of all of you helping us!

It turned out to be a great day. Matt is really feeling better and we have such hope that this treatment will be his cure! Thank you God for showing me that there is hope! Thanks to all of you for getting us through this incredibly tough journey.

Tuesday, April 23, 2002 at 12:22 PM (EDT)

Today is Day 13. Matt's counts are even lower than yesterday. Today, he has virtually no counts. His WBC is only .1 and he has no ANC. If he were to encounter a bug, he would not be able to fight it. That is why I am relieved that we are here. He is in a room with filtered air, not around any germs, and resting comfortably. This is the best place for him right now.

Matt has not been eating. Because of this, he has lost almost 5 pounds in one week and the docs are starting him on something called TPN. TPN is a way of getting nutrition through the IV. This will help Matt get stronger and start to feel better, especially as his counts start to come back. This will start today.

There is still no reason for his fever, which is a good thing. Sometimes, kids who have no counts get unexplained fevers. The docs seem to think that's what Matt has. We are glad because that means he is still on track for stem cell collection when the counts start to come back. It looks like we will be here at least through this week.

Please pray for Matt's increased strength and for the family to survive yet another round of uplanned hospitalization. Thanks to all for uplifting us, supporting us and helping in so many ways. The messages are especially appreciated as we have not been able to have any visitors and the email is a great way to stay in touch.

- Noelle

Monday, April 22, 2002 at 09:55 PM (EDT)

Matt still has a fever. The latest temperature was 102.5. The docs have cultured his blood and so far, so good. There is no bacterial infection in the blood. They will continue to monitor his blood for the next 48 hours just to be sure. He also had a chest xray this morning to rule out any possible pneumonia. Since he has not been up and about for almost two weeks and has a slight cough, it could be a possibility. We sure hope not.

We talked to the transplant coordinator, Jason, today. Things are still on schedule for the collection of Matt's stem cells. Hopefully, his counts will start to turn soon. His WBC count today was only .2 (normal is 4 - 10) which is a drop from yesterday. The platelet transfusion he had last night bumped his platelet count up from 8 to 34. (normal is 150 - 450). His counts usually start to turn around Day 13 or 14. Tomorrow is Day 13. We will see...

Anna and the rest of the family came to the hospital tonight to celebrate her third birthday! We sang and had a birthday cake with candles! Matt made Anna a present today. Thanks to Mrs. Schrott and her girls for making Anna's birthday extra special. Thanks to Franci and Barb for picking up birthday treats for the family and for school too! It sure is hard to manage a family from this "ched!" Good thing we have such wonderful folks helping us.

Please pray for Matt's continued strength against this infection and that the docs figure out the cause soon so we can move to the next step. Pray for the family as we continue to deal with being apart. It is so hard for us to say goodbye when they leave the hospital.

- Noelle

Sunday, April 21, 2002 at 11:32 PM (EDT)

I am writing from my "ched" (chair + bed = ched) in Matt's hospital room. He was admitted tonight for a fever of unknown origin. I still can't believe it, but we spent only 2 1/2 hours in the ER, waiting to be admitted. This is a record for us! Usually, we wait at least 6 or 8 hours. Matt was grateful. So many folks at this hospital know Matt now. They truly look out for him and are very kind to us. It is sadly, for him, all too familiar.

Matt will be on IV antibiotics until he remains fever-free for 48 hours. In the meantime, they will culture his blood to see if he has any infection. His counts are pretty low - WBC - .3, and platelets - 8. He will receive a platelet transfusion tonight. They did see some activity in the blood which indicates that he may be turning from his lowest point. I hope so.

We should still be on track for the stem cell collection - I hope. I will update this site tomorrow, after I talk to his doctor. Thanks to everyone who will help us this week, on such a short notice. Please pray for Matt to fight any infection, get stronger and recover his counts quickly. Also, please pray for the family to deal with another hospitalization and keep everyone positive. Happy Birthday to my littlest one - Anna - who can believe that you are 3!!!

- Noelle

Saturday, April 20, 2002 at 07:03 PM (EDT)

**UPDATE**
Just got back from Children's where Matt had four units of packed red cells. I could see him "pinking" up as the transfusion proressed. THe good news is that his severe dizziness and nausea has subsided. He feels and looks much better. This should help him through this really "low" period of counts. We are looking forward to a nice day tomorrow. Hopefully, the weather will cooperate.


Saturday Morning, 7:00 EDT

Matt is still feeling pretty bad. He has not been able to get out of bed since he got home. Today is Day 10 and his counts have pretty much started to plummet. His HCT (red blood) is 7.7, WBC - 0.3 and platelets are 47. With such a low white count, he has started wearing a mask around Anna. We are headed to the hospital this morning where he will receive 4 units of red blood. This should help him begin to feel better. His platelets are holding their own. I was sure he would need some by now, but so far, so good.

I am sure that things will improve for him once he gets this needed blood. The dizziness which has kept him down should subside. More tomorrow...

-Noelle

Thursday, April 18, 2002 at 04:09 PM (EDT)

Not much new to report. Matt still feels pretty bad. The week after chemo is always the worst. For whatever reason, this chemo has really done a number on him. He hasn't been able to go outside at all and has spent most of his time at home in bed. Hopefully, he will will be feeling better soon.

His counts have not bottomed yet, in fact the white count is unbelievably high. That could be because he is receiving a double dose of Neupogen. The double dose is to stimulate his marrow into producing a large number of stem cells to harvest. I was shocked, though, when the clinic called to say his white count was 10.6 (normal is 4 - 11). We will see what tomorrow's counts bring. I am sure they will be more in line with his normals.

In the meantime, we wait. We are getting good (not really) at waiting. I told Matt that soon, the waiting will be over and his new life will begin. What a glorious day that will be! Enjoy the sunshine.

- Noelle

Tuesday, April 16, 2002 at 12:07 AM (EDT)

We are home!!! Thanks to Lea Ann for the ride home. Of course, Matt felt nauseous when we got home - that seems to be the routine. It is a tough drive from Oakland. His counts were great today. White count is 2.6 and platelets are - yea - 112,000. They will being dropping soon but for now, they are good.

Matt is so happy to be home. He couldn't wait to get out of the hospital this time. What a glorious day! The sky is so blue and the birds are chirping. Each day we have is a gift and we plan to enjoy it.

Thanks to all for the meals, childcare, and errands while we were in the hospital.
Next week will be pretty tricky around here - we will have to go to the hospital as soon as his counts rise. Thank God we have all of you to support us. Please pray for a smooth transition from hospital to home, for Matt to be strong as he recives not one but two injections of Neupogen each day, and for the family to enjoy our precious time together.

Oh - since so many folks have expressed an interest in just what Matt will be going through, I have included this link for you to follow which describes a stem cell transplant in detail.

http://www.rush.edu/patients/cancer/bone_marrow/autologous/index.html

Put the address into your browser and when you arrive at the site, click about halway down on the page on Begin Transplant. This tour is the best description of the process that I have ever seen. Thanks!

- Noelle

Monday, April 15, 2002 at 06:11 PM (EDT)

We had another quiet day. Matt just feels plain old "yucky." There are no other words to describe it. This has been an especially difficult course of treatment for him. We spent most of yesterday laying around in a quiet, dark room. I got the taxes and the bills done which was a big accomplishment. David and the other children got up to the cabin and checked things out up there. I am glad they went because it will be a while before we can get up there as a family again. I am really looking forward to the day when we can spend a week up there together. I know it will come.

David and I met with the transplant director today. He is a very smart man who obviously cares about his patients very much. He spent over an hour explaining things and answering all our questions. The bottom line is that Matt needs this transplant and that they think it will provide a cure. We must believe in them and trust that they will provide the best possible treatment for Matt. They have been very successful with others who have the same disease. We are encouraged.

The next step will be to leave the hospital tomorrow (Day 6). They have doubled Matt's neupogen injections - yes, the poor kid will receive not one, but two injections every day. (thanks to nurse Franci!) They doubled it so that his counts will recover more quickly and he will be producing lots of stem cells. When the counts recover, (probably around Day 14-15), we will be called into the hospital for the harvest of the cells. This can be done in as little as one day or could take up to five days. The docs seemed to think it might take the latter for Matt.

This is just the beginning. After the harvest, preparations will be made for the actual transplant. That is "down the road." We have not even talked to the docs about this. They only give you as much information as they think you can handle. So, for now, please pray for Matt's counts to recover quickly, for him to stay infection free (a crucial part), for the harvest to be successful in the least amount of time possible and for all of us to be strong and focused. It is all in the hands of the Lord now.

- Noelle

Saturday, April 13, 2002 at 1127 PM (EDT)

Matt is aleady done with day 3. Today, he only received two out of the three chemo drugs. The "C" in the ICE Therapy is a drug called carboplatin. It is particulary hard on Matt's stomach. He has been feeling pretty yucky all day. The other children came to visit, but he wasn't feeling up to their lively antics. Anna really misses Matt and cannot understand why she can't jump right into his bed! Noelle's friend, Lisa, came by this evening to cheer Matt up. She brought him some "Jewish" penicillin - otherwise known as matzo ball soup. He was able to keep that down.

We are scheduled to meet the Transplant team docs on Monday to discuss the timing of the next few weeks. We have many questions for them and are not looking forward to all the information they will be providing. It will a particulary stressful day.

We are looking forward to coming home soon. Thanks for keeping us in prayer while we are here. Please pray for the nausea to go away, for the family to cope with our absence and for Matt's counts to stay stable.

- - Noelle

Friday, April 12, 2002 at 1:37 PM (EDT)

Day 2 of treatment began with a spinal tap. Matt requested that Ronnie (aka "greased lightning") perform the procedure and about two minutes after she started, it was finished. He slept for a good time after it and when he awoke, he asked "Is it over yet?" I guess it wasn't too bad.

They didn't draw counts on Matt today, so there is nothing to report for his counts. I hope his platelets are holding their own. I talked briefly to the Bone Marrow Transplant Coordinator, Jason, today. This is really the first in a series of meetings we will have. It looks like as soon as Matt's counts come back from this chemo at the end of this month (usually day 18 or 19 from the first day of chemo), they will plan to harvest the stem cells. This can be done outpatient. It may take up to four days to harvest enough, getting about 4 hours a day on the machine.

The biggest problem will occur if Matt gets an infection this time. Any infection might set him back or cause the cells not be ideal for harvest. So, I am getting my Clorox bottle out and look out world! I plan to keep him germ-free.

Matt got his chemo during the night, which he liked because he slept through it. I did not get much sleep, however, thanks to the "dinging" of the IV pump. He enjoyed a visit today from the "Trio", who played Taboo and Password with him. However, he anticipates a rematch this afternoon with the Child Life Therapist, Gail, of Scrabble. He gave her a run for her money yesterday!

Thanks to the Trio for coming in, to Lynn Schrott for sitting in for me twice this week to take my other sick children to the doctors, to Matt's friend Chris for stopping by after he had his Hickman catheter removed (way to go Chris!), for all the meals, childcare and most of all, prayers. We appreciate them.

- Noelle

Thursday, April 11, 2002 at 11:26 AM (EDT)

We are in the hospital. The roller coaster has stopped for now. We are staying for chemo. Dr. Wollman said that Matt's counts (WBC:2.5, ANC:1100, Platelets:50,000) were good enough to go so we are ready to start the second round of ICE. Matt will probably need many platelet transfusions this time, but they know that and can handle it.

We are back in our same room (8637) which should have a plaque with our name on it. It is the smallest room on the unit but it feels comfortable to us. The unit is very empty which is a good thing that there are no sick children, but lonely for us. Hopefully, the six days will go by fast and we will be home in no time.

Matt feels really good going into this treatment. Everyone has remarked how good he looks. He stopped by the library to get a supply of movies and the Pop Stop to get one of their famous sandwiches. He sure knows the routine around here.

Please pray for Matt's counts to keep climbing in the next few days to make him stronger for chemo. Also, please pray for the family to survive the next few days apart and for the other children to stay happy and healthy. Thanks for all the messages, meals, childcare, and errands. Hold tight...the ride starts again...

Tuesday, April 09, 2002 at 03:10 PM (CDT)

Welcome to the Conover family roller coaster. We are back home. They would not let Matt get chemo today because they are worried about his extremely volatile platelet counts. He received 6 units of platelets at the hospital last evening and it raised his count from 4 (normal range is 150 - 450) to 33. They want to wait a couple more days to see if his own bone marrow will start to produce its own platelets. Until now, they think all the platelets have been from transfusions. He does not seem to be making any of his own.

This is all still in the realm of what they expect for Matt on this new chemo regimen. It is particularly hard on the platelet count and the doc this morning even said she was surprised that they planned to do chemo this week - it usually takes 28 days to recover counts after this chemo. However, his doctor is trying to be aggressive and get going with the next round in order to get him into the much needed remission. As always, it is a tightrope that they walk between giving chemo and recovering blood counts.

We will go back to the clinic on Thursday with an anticipated admission to the hospital. I am not counting on it, but the other counts are good and they seem to think that the platelets will come back (they are usually the last to recover).

Thanks to friends who covered us for rides, meals and childcare on Tuesday and who are there with us every step of the way. These are very trying times and we appreciate all of your prayers. We must get through this.

Monday, April 08, 2002 at 11:14 PM (CDT)

We are back in the hospital. Matt had his blood drawn this morning at home and by this evening, they called from the hospital to ask us to come in. Matt's counts were good but his platelets (responsible for blood clotting) were dangerously low. They wanted to transfuse him immediately. So we packed up everything and David and the kids brought us down to the hospital. Matt is resting comfortably right now while he receives two units of platelets.

The plan is to evaluate him in the morning to see if they can proceed with the next chemo. I think the will be able to because his ANC (Absolute Neutrophil Count) is over 5000 and they said they would do chemo if it was over 1000. So, we are betting that we will be staying.

I guess we should be happy - we avoided the rush hour by coming at night. All the plans are set for our week of hospitalization. Thanks to all of you who will cook for us, take care of the children and visit us. We couldn't do it with out all of you!

Sunday, April 07, 2002 at 05:35 PM (CDT)

We are still home. Amazing, isn't it? Matt feels well and is having fun with his new computer game. He also discovered Yahoo games (thanks to Mrs. Eberz) and has been playing pool with his friend, Patrick online. We didn't make it up to the cabin because Noelle got the stomach flu and spent all of Sunday in bed - what fun.

It is still the plan to go into the hospital on Tuesday, however Matt will get counts taken tomorrow to be sure they are high enough to begin chemo. We are hoping they are so we can stay on schedule.

Thanks to everyone for great meals, childcare, messages and prayers.

Friday, April 05, 2002 at 11:52 AM (EST)

We are home again!!! It feels so nice to be here. Matt is doing well and the docs saw no reason to keep him over the weekend. He will be back soon enough - Tuesday. Counts are good this morning - white cells are climbing and platelets are getting there. He had more blood last night which boosted his red count and should help him feel less tired. One thing he has consistently complained about this round is how tired he feels.

We are looking forward to having a great weekend - hopefully the weather will cooperate. Matt still has to be careful around folks because of counts but a day trip to the cabin might be in the future.

We are collecting the movie suggestions. Last night we watched Vegas Vacation which was really funny. Thanks for all the input. Thanks to all for the meals, childcare, cards, letters and emails this week. They really helped us make it. Pray for a good weekend for everyone and for counts to continue to rise.

Thursday, April 04, 2002 at 11:49 AM (EST)

We remain on 8 North, our home away from home. Matt is still not where the docs would like to see him. His counts have not rebounded yet and he continues to have belly pain. His white count is slowly coming back (.5) but his platelets are lagging behind. The platelets are the last of the blood cells to recover so this is not unusual. He is getting his fourth platelet transfusion in as many days right now. They will keep an eye on him until tomorrow when we should be able to come home.

While Matt and mom would rather be home, those of you who know germs know that when his counts are down as low as they are right now, home is not the best place for him. He is too susceptible to infection and alas, with a two year old in the house, he is exposed to many things at home. We are trying to boost our spirits by watching funny movies. If anyone reading this has any favorite movies which always make them laugh, please send us a message and tells us your favorite. We are making a list to watch.

The library at Children's has an extensive movie library available for borrowing. Today we are watching "Las Vegas Vacation." I know, not really one for the great movies category, but funny nonetheless! Please keep Matt in your prayers. Pray for counts to go up, for strength, both physical and mental, and for the family at home. Thank you to all who are helping us on a moment's notice. These unplanned hospitalizations are the toughest! Hope to see you all at home soon!

Wednesday, April 03, 2002 at 078:03 PM (EST)

We are still here. Matt did not feel well enough to go home from the hospital today so the docs are keeping him one more day. They are running a couple more tests to be sure he is ok and are trying to get one of his lumens (from his catheter) to work correctly. It has clogged. It is not a big problem right now but he will need both lumens next week when he receives chemotherapy again. They are trying to "bust" the clot with a drug called TPA. So far, it has not worked. If they cannot get it unclogged, he might have to put in a new line. That would not be fun.

Matt's spirits are good, although he really wants to be home. He is scheduled to come back for chemo on Tuesday, so he really wants some time out of here to enjoy his home and family. Please pray for his recovery from this gastro problem, for his counts to rise (he still has very little white count) and for him to regain strength. He got an additional unit of platelets today. This round of chemo seems to be very hard on his platelet count.

Thanks to all the folks who have sprung into action once again to help us on such short notice. We couldn't do it without you!

Tuesday, April 02, 2002 at 08:00 PM (EST)

Here we go again...Matt is back in the hospital. While getting a routine platelet transfusion this afternoon at the clinic he developed an acute attack of abdominal pain and started throwing up. They were baffled. Not knowing if this is a reaction to the platelet transfusion or an infection of his bowel or colon, they admitted him to do a work up of the symptoms.

He is resting comfortably now on iv hydration and soon will receive two wide-spectrum antibiotics in case there is an infection. The good news is that he has no fever which would indicate an infection. If he does, indeed, have an infection, it is very early and hopefully, can be treated easily. we will know more tomorrow.

Until then, we just have to hope and pray that the doctors have erred on the side of caution. Please pray for our entire family. We need it.

Sunday, March 31, 2002 at 07:34 AM (EST)

We are home!!! We came home at 1:30 a.m. because Matt wanted to be with his family on Easter morning. There was a big mix-up in the hospital and we did not even start Matt's transfusions until 7:00. As usual, Matt didn't complain. We missed our Easter dinner with Marion, David's stepmother, but they brought it to the hospital instead. The whole family spent the evening together while Matt got his blood.

Matt's temperature was elevated all evening, but it came down right before it was time to leave. That is a good thing because they have to keep you in the hospital if it is elevated. I think Matt willed it to come down because he wanted to come home so badly.

The family (minus Mom and Matt) are going to church and then we will search for Easter baskets, a tradition Matt loves. We are so grateful to be home together on this blessed Easter day.

Saturday, March 30, 2002 at 02:29 PM (EST)

I am writing this from our familiar home away from home, 8 North at Children's Hospital. Matt's counts are very low so we had to come in for red blood and platelets. The good news is that we didn't have to come in through the ER. When you need blood you can go directly to the floor. That is good because we spent nine hours last time in the ER.

We are hoping to go home this evening after Matt receives the blood products. He really wants to be home for Easter. If he develops a fever at any time when we are in here, they will have to keep us. So, I pray that this goes well and that he doesn't get a fever. Our Easter dinner, which we were having with David's stepmother today has to be cancelled. They are leaving tomorrow. But if we get home for Easter, Matt will be happy.

I will keep everyone posted...

Friday, March 29, 2002 at 1:20 PM (EST)

Matt still feels pretty good. However, his counts have taken a dramatic plunge. He is neutropenic, which means he has absolutely no defenses against any kind of infection. We have taken precautions today to try to ward off infection. Poor Matt has taken up residence in our bedroom. It is a large, sunny room, where we have a VCR, computer, stereo, couch and reading material. If folks want to visit him, they are allowed in with a mask on. This is how we plan to get through the next few days. His platelet count is also low and we will probably be headed for Children's in the next couple of days for a transfusion.

In spite of all of this, Matt is in good spirits. He is looking forward to Easter as we all are. A time of new beginnings. Hopefully, we are on the road to recovery. Many blessings to all of you this Easter weekend.

Wednesday, March 27, 2002 at 05:01 PM (EST)

Matt continues to amaze us. He is really doing well and the nodes continue to shrink. His counts are not bottoming yet, so he feels pretty spunky. David's stepmother, Marion and her daughter, Laura have arrived to spend Easter with us. Noelle is happy because Marion already starting cooking. Matt is happy because he has already printed off several recipes from the Internet for things he wants her to make (she is a gourmet cook!). Anna is happy because "Grandma Marion" paints Anna's toes and fingers red!

Thanks to all for the prayers, messages, cards, meals, childcare and Easter goodies. Thanks to Franci who comes every day to give Matt his shot and to Lynn who took Anna "Easter" shopping today. We couldn't do anything without such a committed, caring bunch of people. Bless you all!

Monday, March 25, 2002 at 07:28 PM (EST)

***CHECK OUT THE NEW PHOTOS***

We are home!!! It feels so good to be home, away from that hospital. Matt had a great day today - no sickness! We are settling back into our routine. Matt will be getting neupogen injections over the next two weeks to boost his counts so he can look forward to seeing Mrs. Eberz every day. In addition, he will be seeing the visiting nurse every other day to check the counts. They expect them to go down so we are bracing.

Thanks go out to Mrs. Schrott for helping Noelle dispose of a very nasty mouse! That was a real spectacle. It made Matt laugh, at least.

Thanks for all the prayers, messages, cards, meals, and childcare. We are looking forward to having a quiet Easter at home. Please pray we make it!

Sunday, March 24, 2002 at 11:16 PM (EST)

Matt is ready to come home. They told us that he could leave tonight if we wanted but I want to see his doctor in the morning, so I told them we would go then. I want to be sure that Matt will come home on IV fluids so we can help him stay strong while we wait for his counts to recover. He will also need one more day of antibiotics. The good news, though, is that he feels pretty good - not nearly as bad as he did on the other treatment protocol. Hopefully, he will stay this way for the next two weeks.

We want to send our thanks to everyone who attended the prayer service this evening for Matt at our church. We understand that it was a beautiful service and very touching. We wanted to be there but felt we were not strong enough emotionally to handle it. We are anxious to hear the tape .We are so grateful for all of your support. This is going to be a very difficult road for our family but we know you will all be there to support us every step of the way. We have begun to read the transplant literature and it is frightening. We will go on our faith that Matt will get through this.

I look forward to writing the next entry in this journal from our home.

Saturday, March 23, 2002 at 06:10 PM (EST)

Matt had a very uneventful day - what a blessing! He received his fourth round of chemo at noon and spent a great deal of time sleeping. The "reaction kid", as they have nicknamed him on 8 North, reacted again last night to a drug. The reaction is called a "paradoxical" reaction. He scared the daylights out of me as he started getting very hyperactive after they gave him a new drug. He started twitching, hopping, jumping and acting very strange. After a dose of benedryl, he was able to calm down and go to sleep. Needless to say, he has another allergy listed on his chart!

Tomorrow is Matt's last day of this round of chemo. The plan is to come home on Monday. We hope to keep him healthy enough to stay out of the hospital until April 9, his next scheduled admission.

Thanks for all the cards, messages, prayers, meals, and childcare. We are truly blessed.

Friday, March 22, 2002 at 03:12 PM (EST)

Matt is doing well today. He just finished his third day of chemo and so far - no bad side effects. He is very tired, though. The trio (minus one who is sick) of Noelle's friends showed up today to play a lively game of the $25,000 pyramid, which Matt enjoyed. They also brought signed pictures of Matt's teachers and principals to tape up all over the room. We had fun. After all that excitement, Matt is sleeping now - he was truly worn out!

We had great news this morning - Matt's bone marrow is free of all lymphoma cells. This is great news because it means that we can move forward with the plans for a stem cell transplant. Because the stem cells are made in the bone marrow, the docs wanted it to be clean and free of disease. We still plan to get the family typed though, in case they decide in the future that a stem cell won't work.

They are saying that we might come home early next week. While we hope this is the case, we are in no hurry to get out if Matt is not feeling 100%. So we will see. Thank you to all for prayers, gifts, cards, visits, calls, meals, childcare - etc. We are truly blessed to have all of you pulling for us. Matt can feel the love and support from all of you.

The prayer service for Matt is on Sunday, March 24 at the Mount Lebanon United Presbyterian Church. They would like to extend an invitation to all our friends to join them for worship on Sunday evening at 6pm in the sanctuary.This service will be dedicated to prayer for Matthew and his family. All are welcome. Please, spread the word! Go to www.mlupc.org for contact information and directions.

Thursday, March 21, 2002 at 07:45 PM (EST)

Matt is doing well. He had a very busy day today with many, many visitors. His day began with a galium scan that took over 2 1/2 hours. He had to lay perfectly still on a bench for that long. He did great, though. He then got his three chemo drugs and a bunch of antinausea medicine which really knocks him out. So he slept for much of the day and mom visited with all the visitors. What a bonus for mom!

The doctors are very pleased at the progress of the chemo already. The nodes are shrinking. That means he is responding to the regimen and we are on our way. We just hope he doesn't suffer from any serious side effects.

Thank you to everyone for all the encouraging prayers and messages. We read them every night together and Matt looks forward to each and every comment. Thanks to all the children at Mt. Lebanon UP Church for the beautiful butterflies that are taped to Matt's walls. They remind us that the first day of this treatment was on the first day of spring - a new beginning! For those of you who would like to attend, The family of faith of the Mount Lebanon United Presbyterian Church would like to extend an invitation to all friends of the Conover family to join us for worship on Sunday evening, March 23, 2002, at 6pm in the sanctuary. This service will be dedicated to prayer for Matthew and his family. All are welcome. Please, spread the word! Go to www.mlupc.org for contact information and directions.

Wednesday, March 20, 2002 at 02:56 PM (eST)

Matt began "Plan B" today. That's how we are viewing this - it is simply "Plan B." We will fight this and we will win this battle. Matt had a very busy day. After his spinal this morning (chemo to protect against spread to the central nervous system), Matt took a trip to audiology where he had his hearing tested. This is to establish a baseline because one of the new chemo drugs can cause damage to the hearing. It was established that outside of the normal "teenager" selective hearing, he has perfectly normal hearing!

The chemo regimen he is on this time includes two drugs he had last time and the addition of a new one, the heavy hitter, called carboplatin. His treatment will be over five days and then he will go home to wait for his counts to recover. Two weeks later, he will return for another round. Hopefully, it will only take two rounds to get him into remission. Once in remision, we can plan for the bone marrow transplant.

Matt received several other drugs today, so he is very groggy. The good news is that the spinal was no problem - it was the best one he ever had. The nurse was great and we already requested her for the next one. He finished the chemo drugs for today and he had no reactions. That is a good thing.

Our spirits are being lifted by all the calls, messages, and prayers. Matt is ready to fight this battle and we are right there with him. Please continue to pray for our strength.

Tuesday, March 19, 2002 at 8:14 PM (EST)

Sadly, things have taken an unexpected turn for us. Matt has indeed, relapsed on treatment. Relapsing on treatment is worse than relapsing after treatment, as you might expect. He is very sick again and the lymph nodes are growing quickly. Dr. Wollman has decided to do another chemo regimen to get him into remission again. They think this will only take two cycles.

Once he is in remission again, he will be a candidate for a Stem Cell Transplant. This kind of a transplant involves Matt's own bone marrow. By using high-dose chemo and radiation, they will destroy all of his bone marrow after they harvest some of his "stem cells", young blood cells, to grow again. Once they start growing, he will be in treatment and under observation for 100 days.

The transplant will probably take place in June. Matt (and mom) will be hospitalized for 4 -6 weeks! If all goes well, Matt will be cured and free of the disease.

Right now, it is our goal to get him through the next two rounds of chemo. He begins tomorrow on a 5 day treatment protocol. The doctors are trying to move quickly to get ahead of this. Matt also has an infection but he will receive antibiotics during the chemo.

We ask for your prayers for Matt and the family as we deal with this setback, that Matt will get through this round and the next, infection and side-effect free, and that we can successfully fight this battle.
.

Monday, March 18, 2002 at 10:56 PM (EST)

It is late and it has been a very long day. Matt is resting comfortably after his biopsy. The surgeon thought it went well and they were able to get the tissue they needed to identify the sample. They were also able to get some of Matt's bone marrow to examine. Now the waiting begins. Possibly, results will be back by tomorrow afternoon. We can only hope and pray.

In the meantime, we are preparing for the worst. We met members of the Bone Marrow Transplant team today who started to provide information. It is too soon for us to think about this, so I am sure they will come back when we are ready.

Thanks for all your messages, thoughts and prayers. Also thanks to all who are helping with meals and childcare. They are so appreciated.

Monday, March 18, 2002 at 1:29 PM (EST)

We are in the hospital and things have taken quite an enexpected turn. Matt's doctor came in the morning and announced that he was sending him this afternoon for a surgical biopsy of the swollen lymph nodes. Until this morning, everyone believed that Matt's swelling and pain were due to infection. Now, everyone is not so sure. Dr. Wollman wants to be extremely cautious and wants to work fast to decide just what this is.

So we are waiting for surgery to call. In addition to the biopsy, they will be aspirating some of Matt's bone marrow to see if there are any abnormal cells there. If Matt's problems are due to the disease progressing, the next step for him will be a bone marrow transpant. They will begin typing his bone marrow today. Then they will need to find a match.

The best source of a match for Matt's bone marrow will be Megan, Alex or Anna. They will get tested soon. If they do not match, then they will go to the Bone Marrow Registry at the Blood bank, a database of potential donors. If you are interested in being a potential donor, call Central Blood Bank and ask for information about getting on the Bone Marrow registry.

The doctors are working fast because Matt's chances are greatly increased if things are caught early. Hopefully, tomorrow we will find out that this is just an infection. That is our prayer.

Please pray for us, the doctors and nurses who are taking care of Matt, and the folks who have rushed in to help us. We appreciate your thoughts and prayers..

Sunday, March 17, 2002 at 08:46 AM (CST)

Arghh!!! Matt (and Mom) are back at Childrens as of late Saturday night. Matt had developed some swelling of the lymph nodes in his neck toward the end of the week - talk about scary - and had a slight fever. Luckily, they think it is an infection of some kind but we won't know until all the tests, x-rays, etc. are completed. Why he always manages to get sick late on a weekend night remains a puzzle - nothing worse than being stuck in an ER that is overcrowded and understaffed. Noelle and Matt went in at 10pm and did not get into their room on 8 North until 6:15am! At least we feel better knowing that he is in good hands now in their "home away from home".

What this means for his next chemo round which was (is?) supposed to start Monday is unknown. It has been a long time since the last one with all his setbacks and that has us worried. They tell us it is not a concern but when his lymph nodes swelled up we certainly began to feel differently.

Thanks for the prayers, messages, cards and letters. They mean more to us than you will ever realize - especially the last few weeks.

Saturday, March 16, 2002 at 12:05 PM (EST)

**CHECK OUT THE NEW PHOTOS!**

Matt's counts are good. He had a ball playing games yesterday with Noelle's friends. He has started warming up the pitching arm too! It is amazing how well he can still throw!

Looks like we will be going in to the hospital on Monday - we hope! (I know - I have said it before) He has had a bit of a fever the last few nights so we are not sure what is going on there, but hopefully, they will be able to give him his fifth round of chemo so we can get this over with!

Life has really been difficult in the past two weeks. It is hard to live life in limbo. We are thankful for the good times we have had though, like playing outside in the sunshine, getting take-out food and watching great movies! Matt has spent a great deal of time on his schoolwork so he is not feeling pressured to keep up.

Thanks for the prayers, messages, cards and letters. They mean more to us than you will ever realize - especially the last few weeks.

Tuesday, March 12, 2002 at 10:25 PM (EST)

Well, we aren't go in as planned on Thursday. Frustration just doesn't even describe our feelings today. We are so close. This roller coaster has to stop soon. The good news is that Matt feels great! The GI problems haven't gotten him down and he sees this as another "vacation." Noelle, on the other hand, sees this as another setback on the road to recovery. We try to remain positive though, and concentrate on the good things.

Because they caught this early, he will only need medicine until Monday and hopefully, will be admitted for treatment # 5. The docs are really following his case and are optimisitic that he will remain strong for this round.

Please pray for us. We need to remain strong and focused on getting Matthew through this. Thanks to all of you who are so flexible with meals, childcare, etc.

Tuesday, March 12, 2002 at 07:03 AM (EST)

Good news - Matt's counts have improved and they are better than they have been in over six weeks! If we can just keep him well until Thursday, he will get chemo for sure. He has been suffering from a GI illness the last couple of days. Because of this, he had to miss the Penguin game yesterday. His family went without him, but he understood that the best place for him was at home. Noelle and Matt watched "Mickey Blue Eyes" in the home theater, instead.

Matt's spirits continue to be great. He has been spending a lot of time catching up on his schoolwork and playing new video games. He won't be doing any rollerblading for awhile!

Please pray that his counts stay high, that his GI symptoms abate, that his spirits remain high and that we "sail" through the next round. Thanks for all the cards, letters, messages and prayers. They are always appreciated.

CHECK OUT THE NEW PHOTOS. Our pastor, Bob, brought over a quilt for Matt that an anonymous quilter made especially for Matt with a drumset on it. Matt is there too - with his sling!

***DON'T FORGET THE PRAYER BEEPER***

To call it, dial 412-949-0059. At the tone, enter 772-9464 (PRAYING). We really appreciate hearing the beeps when we are in the hospital!

Saturday, March 09, 2002 at 10:46 AM (EST)

OK - They told Matt to be "normal" and do "normal" kid things. So what did all the normal kids do yesterday when the temperatures soared to above 70 degrees on an almost spring day? He rollerbladed. Now, keep in mind that he is weak, hasn't rollerbladed in over 4 months and still has his catheter in his chest. Well, Matt got up on the blades, but only for a minute. Just enough time for Noelle to see him fall flat on his face (luckily he was wearing a helmet) and catch his fall with his wrist to protect his catheter!

Well we visited Children's Hospital last night and Matthew has a possible fracture of the scafoid bone in his wrist. He has a splint to immobilize it until the bleeding stops so they can do another xray. He must wear a sling too. He is some pain, but at least we got to come home from the ER last night instead of our usual admission.

This does not set him back for chemo. He will still be admitted on Thursday. It just makes it harder for him to play video games. At least it wasn't his left hand - he can still do schoolwork!

Please pray for our family as we try to keep them healthy! It certainly has been a challenge.

CHECK OUT THE NEW PHOTOS. Our pastor, Bob, brought over a quilt for Matt that an anonymous quilter made especially for Matt with a drumset on it. Matt is there too - with his sling!

***DON'T FORGET THE PRAYER BEEPER***
To call it, dial 412-949-0059. At the tone, enter 772-9464 (PRAYING). We really appreciate hearing the beeps when we are in the hospital!

Thursday, March 07, 2002 at 12:32 PM (EST)

WE'RE BAACK!!! They did NOT admit Matt this morning again due to low counts and a cold. He also has an infected toe that they worry is a possible staph infection. He will be on anitbiotics for 6 days. (That makes five of us on antibiotics). We were so happy that he didn't get strep, thinking he could receive chemo with a cold, but they really want him to be in top shape for this next round after what happened to him after the last round. So the roller coaster continues...

Matt is happy to be home for another week. The thing is that he really feels good and is not looking forward to feeling crummy again. However, we want them to get these last two treatments into him so that we don't have to worry about relapse. It is such an emotional roller coaster for us. However, we will take our cues from Matt and celebrate another "vacation" week with him.

Hopefully, we can get up to the cabin sometime this weekend. This gives Noelle more time to play with her new birthday present - a digital camera! Matt will also get to go to a Penguins game on Monday night, courtesy of the Mt. Lebanon Rec dept. and the Penguins!

Our biggest challenge this week is keeping Matt free from infection and germs. It is so hard for him to understand that he needs to stay clear of all germs right now. He has to get chemo next week so we have to be very careful this week.

Please pray for our strength to get through this. It is much harder because we can see the end. Pray for the family to get healthy and for Matt to stay clear of all infections, viruses or germs. Thanks to all for your messages, prayers, food, childcare and especially to those of you who made Noelle's birthday such a great day!

Tuesday, March 05, 2002 at 08:58 AM (EST)

Good news to report today - Matt's counts are good. They have recovered and it looks like his next round of chemo will begin on Thursday. He is not happy about this but we do want to get this over with! He is still enjoying his "vacation" from chemo.

The rest of the family continues to struggle with illness. Anna is feeling better, thanks to an antibiotic, and Alex will see the doctor today for fever, cough and sore throat. We hope it isn't strep. Megan's thumb is healing.

As I write this on my 42nd birthday, I look forward to better birthdays, but am truly grateful for the past birthdays when I had four healthy children. I know better times are ahead for us.

Sunday, March 03, 2002 at 02:28 PM (EST)

Matt is having a great time doing all the "normal" stuff he likes to do. We have spent much time together as a family, playing games, watching movies and eating out. It is hard to imagine that we still have two more rounds to go. This feels like normal again. I know Thursday will be hard when we go to the hospital but I am so grateful for this time we have had to be together!

Anna is sick. She has croup and a UTI. Megan hurt her thumb and can't play the violin for awhile. Alex played four hockey games in two days for the playoffs and lost in the finals. He had a great season, though. Life goes on for the Conover family. Thank you for all your cards, messages, childcare, food and prayers. We really appreciate it.

Thursday, February 28, 2002 at 12:34 PM (EST)

We are back home. Matt's counts were not good enough for his doctor to feel safe about starting the next round of chemo. Matt is as happy as I have ever seen him. Imagine, an unexpected vacation at home with a new home theater! I am not as happy because I worry about delaying chemo and the effects it might have on his prognosis, but the doctor seems to feel that it is fine to wait another week.

The doctor wants Matt to be in his best "fighting" shape by next week. Hopefully, the counts will go back up. Already today, the white cell count is up. Our next admission is scheduled for next Thursday, March 7. Hopefully, all will go as planned and he can be admitted for round #5.

This will delay the next round and it looks as if he will be in the hospital over Easter. I will discuss this with the doctor and hope to have that moved just a little bit to let him enjoy Easter at home with us instead of in the hospital. But if it has to be, we will make the best of it. So far he has spent Thanksgiving, and Valentine's Day there and squeaked home in time for Christmas.

Thank you all for your continued support of our family. This roller coaster ride should soon be over.

Thursday, February 28, 2002 at 07:02 AM (EST)

Here we go again. We are getting ready to leave for the hospital. Matt is hoping that they say his counts are too low and can't get chemo for another week. I am not sure what to hope for. I want him to get through this but understandably, I am nervous this time. I want him to be strong when he gets the chemo and his counts have not been great. So we'll see...stay tuned.

I will update later this afternoon from the hospital or from home? Who can plan? Our lives are so up in the air.

Tuesday, February 26, 2002 at 08:54 PM (EST)

It's here! Matt got his wish today!

CHECK OUT THE NEW PHOTOS!!!

Matt continues to amaze us with his strength this week. Although his counts are pretty low, he seems very strong, is eating all the time, and back to the old Matt - bouncing all over the place. When they came today to install the theater, he almost bounced out of the house.

Matt is scheduled to be admitted on Thursday for the fifth round of treatment, however, with counts so low, this may have to be postponed another week. While Matt is hoping for this, so he can enjoy his new system, we are hopeful that we can get him back on schedule so we can be done with all of this by Easter!!!

Stay tuned for more information. We must prepare for the hospital and if the counts aren't good on Thursday, we will just come back home.

Thanks to all for your calls, good wishes, prayers, food and errands. It has been so nice being home for two weeks. I almost feel guilty enjoying a "normal" life. We also want to thank Make A Wish and all those involved in the fundraising for Matt's Home Theater. It is really nice and he is so happy.

Thursday February 21, 2002 7:26 PM EST

** Check out the new photos **

Another good day to report. Matt worked with his tutor, did a science project, had another Big Mac for lunch, and did normal stuff. Matt even has started to do some of his medical care. He impressed the nurse when he flushed his own lines today. I see a medical career in his future!

Tomorrow, he will meet the Make a Wish staff at the stereo store to choose his Home Theater. He is excited.

Things are good again...breathe...breathe.

Wednesday February 20, 2002 10:31 PM EST

Matt had yet another good day. We are so grateful for these kind of days. He did "normal" things all day like eat pizza at Pizza Hut, go shopping and do schoolwork. He continues to get stronger and his appetite is AMAZING!!!

He remains on antibiotics through next Monday. He will get blood counts tomorrow so the numbers will determine what kind of weekend he can have. The word from Make A Wish is that he will meet them on Friday afternoon to choose the system. He plans to ask a lot of questions as he has really researched Home Theaters and knows what he wants. We will take the video camera to capture the moment.

He is also excited because he helped Noelle plan a Disney trip for early November today. Just looking at the place online made us long to go right now. We are really looking forward to going to such a "magical" place as a family - we need it!

Thank you for your messages and prayers.

Tuesday February 19, 2002 1:37 PM EST

Matthew is doing great. He is starting to get some energy back. He even cracked the books today! I am trying to feed him every couple of hours. We have stocked the fridge with his favorites. His white count is still on the low side, although he is able to go out if he is up to it. We are hoping that over time it will get higher. At this point, the docs wouldn't start chemo on him because it is too low (2.7).

The antibiotics are helping. He will remain on them now until February 25. They added the extra days for protection. David has learned how to administer them too, giving Noelle a needed break from all the medical care. We continue to be amazed at Matt's progress and are so thankful for all your prayers, messages, food and childcare. Special thanks to those of you who have dropped off a little something here and there. They really brighten our day and make us so thankful to have such a supportive, caring community of family and friends.

Monday February 18, 2002 7:17 AM EST

Matt is doing much better! Home is a great place to be. He is enjoying being in his own bed, having his own "stuff" around him and eating good food. My goal is to help him gain some of the weight he lost last week. His goal is to eat a Big Mac every day to help. The IV antibiotics are working fine and Noelle has added IV antibiotic pump connection to her newly aquired set of nursing skills.

Thanks for all the messages, prayers and meals. We are very grateful. I am hoping the next two weeks will be great for Matt as he gets strong enough to head into the next round.

Saturday February 16, 2002 5:51 PM EST

MATT IS HOME!!! He is tired and wiped out but is sure glad to be home. One week ago tonight he began an incredible journey that I cannot even begin to describe. We are so thankful to be bringing this boy home. He will remain on IV antibiotics for the rest of the week and will have almost two weeks to recover before he gets his next round of chemo. I will be watching him like a hawk for any signs of the infection returning.

Matt loves to hear from everyone so words of encouragement are appreciated. We are going to put some new pictures out there soon for everyone to see. Thanks for all your prayers. Prayer is keeping us going!

Friday February 15, 2002 9:05 PM EST

The news is good. Matt had another CAT scan today and the preliminary results are good. The scan was done to makes sure that there wasn't any infection in any of his organs that they couldn't see. They will take him off all antibiotics except for one IV drug called Zosyn.

He should be coming home tomorrow! He will stay on antibiotics for 10 more days and rest at home. Make a Wish is ready to grant his wish so when he feels stronger, he will be helping to pick out his home theater. He is ready to come home and so is mom. David spent Friday night with him to give Noelle a break.

Thursday February 14, 2002 9:32 PM EST

Matt continues to fight the infection. We found out yesterday that he has Clostridium Septicum. Even the name sounds nasty. This is a very serious bacteria that is present in many people's gastrointestinal tracts. However, because Matt has been receiving high-dose chemotherapy that is extremely aggressive, he is prone to a condition called mucositis - inflammation and ulceration of the mucosa or lining of the mouth, esophagus and intestinal tract.

His problem began when the mucositis started, his intestinal tract ulcerated and the Clostridium bacteria entered his bloodstream. Usually when this happens, it is extremely important to get antibiotics immediately. Matt was lucky to receive antibiotics in the emergency room which covered this bacteria, among others. We now know that the situation was very critical and that Matt was very sick. Many people die from this type of infection.

When asked why Matt got better so quickly, the doctor replied, "he received antibiotics quickly, he had a little bit of a white count, and you must have had people praying for him."

We are overwhelmed by this and very grateful for all the prayers being offered for Matt. He continues to improve each day, although we are not certain exactly when he can come home. The docs are weaning him from morphine and taking him off two of the four antibiotics. The goal is to send him home on only one IV antibiotic and one oral drug.

Matt's 5th round of chemo will be delayed one week, until February 28, to allow his body to regain strength. His counts must remain high for them to begin treatment once again. They will monitor him closely during the next two rounds to prevent a similar situation from developing.

Thanks to everyone for your notes, messages, meals, childcare and prayers. We are so thankful to be bringing our boy home. It has been a very scary time for us.

Wednesday February 13, 2002 2:59 PM EST

Matt continues to improve!!! His counts are better than yesterday and this means that he has turned the corner. The docs are starting to take away some of the antibiotics in an effort to get him down to just the ones needed for the bacteria he has. They are also starting to reduce the morphine. He is not in any pain any more, which is great, but he extremely weak and has not eaten.

The highlight of Matt's (and Mom's) day was a visit from Anna. She stormed into Matt's room and took over, climbed into his bed and pushed all the buttons to make it go up and down. We really enjoyed having her here.

We are still hopeful that we can get home over the weekend. His next treatment should not have to be delayed if we get home soon. Please pray that he continues to get stronger each day and that we get home soon.

Tuesday February 12, 2002 5:24 PM EST

Matt continues to improve. His counts began to turn today and he actually has a white cell count. This is necessary for his body to help fight the infection. He continues to receive five different antibiotics continuously around the clock. We are not getting much sleep because of this but we are napping during the day to make up for it.

Matt got to meet a former Steeler, Steve Avery, today. He autographed a football and I took a picture. Look for it soon on this site. Matt is still too weak to get out of bed but he is reading about the Olympics and enjoying watching them on TV.

It is our hope that we will be able to get home for the weekend. This is a long shot, but they might be able to send him home on IV antibiotics. Please pray that they decide to do this. Of course, it all depends on how strong Matt gets over the next few days. He has not eaten and needs to get stronger. Thanks for all your prayers, messages and notes.

Monday February 11, 2002 11:47 AM EST

Good news - Matt is feeling better. The antibiotics are working and the doctors are encouraged. It turns out that Matt has a bacterical infection of the gastrointestinal tract and if he had normal counts, like you and me, would be able to fight the infection without large doses of strong antibiotics. However, the doctors are relieved that he has this type of infection because they have medicines that can treat it.

His fever has gone down, his heart rate is normal, all the monitors have been removed and he is resting comfortably. He is still on morphine for pain. There is a good chance (WE HOPE!!!) that once they identify the actual bacteria and he starts to respond to the medicines that we will be able to home on iv antibiotics. He and all of us will be glad for that. It is so hard to be apart from the family.

Thanks for all the messages. Matt is SO encouraged by your thoughts and prayers. Please continue to pray that his counts recover so he can fight this infection, that the doctors continue to be encouraged and that we get to come home soon. This may set his next round of treatment back but the inportant thing is to get his body strong enough to handle the LAST two treatments.

Sunday February 10, 2002 4:40 PM EST

Well, we are back in the hospital and Matt is putting up a good fight against a very nasty infection. He was admitted last night after suffering from severe abdominal pain and a fever of 103. He is currently on five different antibiotics as they try to race against the rapidly spreading infection. The doctors seem to think that this is just another version of the mucositis that he suffered after the first round of chemotherapy. The only difference is that instead of appearing in the mouth, it is appearing in the gastrointestinal tract.

He is on a morphene drip and is comfortable. The docs are a little worried about his elevated heart rate. They would like to see it go under 100 but it has been hovering at 135 or so (down from 190 last night).

Tests and cultures have been done to determine the exact kind of bacteria. They need to be sure that they find the right medicine to treat this. When Matt's white counts come back, they told us to expect a lot of pain as he heals. We are preparing for the worst, as he had the same kind of pain after the first round of treatments.

Matt's attitude continues to be positive as he faces this setback. We are tired from spending the entire night in the ER, waiting to be admitted.

Please pray for our strength to deal with this, for the family's strength to deal with yet another hospitalization, and for the doctors to conquer this infection quickly. Thanks for the calls and notes and for your prayers. They mean so much to us. Matt is really fighting and he will win this battle.

Friday February 8, 2002 3:40 PM EST

GOOD NEWS!!! ---

Matt's first CAT scans since the beginning of treatment (11/15/02) show no visible sign of any abnormal growth. They are clear!!! This is very good news and the doctors are delighted.

Matt simply said, "I knew it was gone." His attitude is amazing.

We are looking forward to a great weekend. He continues to get stronger after his fourth round of chemotherapy. He is starting to have an appetite. His counts are in the normal range and he is looking forward to having a good week and a half before he gets his fifth round.

Make a Wish has contacted us and they are working on granting Matt's Make A Wish, a home theater system. He is very excited.

We would like to thank everyone for their thoughts, prayers, good wishes, meals, childcare, errands and support. Matt is blessed to have so many thoughtful supporters!

Friday February 8, 2002 3:14 PM EST

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