Journal History

Click here to go back to the main page.

Thursday, June 2, 2005 9:08 AM CDT

TEARS ARE THE PROOF OF LIFE

"How long will the pain last?" a broken hearted mourner asked me.

"All the rest of your life," I answered truthfully.

No matter how many years pass, we remember. The loss of a loved one is like a major operation; part of us is removed, and we have a scar for the rest of our lives.

This doesn't mean that the pain continues at the same intensity. There is a short while, at first, when we hardly believe it. It is rather like when we have cut our hand, we see the blood flowing, but the pain has not yet set in. So when we are bereaved, there is a short while before the pain hits us. But when it does, it is massive in its effect. Grief is shattering.

Then the wound is healed, so to speak. The stiches are taken out....The scar is still there, and the scar tissue too. As the years go by, we manage, but the pain is still there, not far below the surface. We see a face that looks familiar, hear a voice that has echoes, see a photograph in someone's album, and it is as though the knife were in the wound again.

But not so painfully. And mixed with joy, too. Because remembering a happy time is not all sorrow; it brings back happiness with it.

"How long will the pain last?"

All the rest of your life.

But the thing to remember is that not only the pain will last, but the memories as well. Tears are the proof of life. The more love, the more tears. If this be true, than how could we ever ask that the pain cease altogether? For then the memory of love would go with it. The pain of grief is the price we pay for love.

Author Unknown

Monday, May 16, 2005 5:00 PM CDT

I have been contemplating an update for several days. There is something I have been wanting to share with you all, but I haven't been able to figure out how to say this so that you can understand. Some of you, sadly, will know exactly what I am talking about.

For two and half years this website has been such a wonderful tool. We first used it so that we could communicate with everyone while Tucker was having his transplant. It was a wonderful way for everyone to keep up to date on his progress, and hear it straight from the source. It didn't take long for me to figure out that in a strange way, this site was therapy for me. We looked forward to checking the guestbook daily and seeing who was following our "journey". It was a wonderful place for me to share, not only Tucker's progress, but my feelings. People who we don't even know have become part of our lives. It is through the "caringbridge community" that we too, have followed the stories of families that have been a direct part of our journey and some we have never even met. We have cheered for their victories, and cried tears with them through their sadness.

It was that thought that made me feel the need to share this with you. There are about thirty sites that I now follow faithfully. I check them often, but don't often sign the guestbook. As I said before, some families we have met, some we don't know, but have come to know through other sites. Believe me when I say, it doesn't take long of following a site before you feel like you know a family. The other day when I was dutifully making my daily (okay sometimes it is more than once a day) rounds of our caringbridge list it hit me like a ton of bricks. I was opening pages and looking at pictures of kids, reading updates, when all of sudden I opened Tucker's page and it was MY kid looking back at me. Now, some of you are going to think I've lost it, but truly I can't explain the surreal feeling of staring at the homepage picture and wondering how I ever got to this place. The feeling was overwhelming and hard to explain. Tucker seems to be getting so much further and further away. My heart is still so broken, and I miss him so much, but life seems so normal without him now - how sad.

Updates are so infrequent now. There is so little new to report, but this site continues to be therapeutic for me. Thanks for continuing to stop by and to listen.

Saturday, March 26, 2005 9:46 AM CST

As we celebrate this Easter weekend my thoughts have once again been centered around Tucker and his eternal life. I have also given thought to Christs death on the cross for the forgiveness of my sins so that I, too, can have the promise of eternal life and one day be reunited with Tucker and all of my loved ones. As a parent, the loss of a child has got to be one of the most difficult things I will ever have to endur and yet, God CHOSE to suffer this loss because of his love for us! What a sacrifice.

Hope you all have a blessed Easter and are spending some time with those you hold dear.

Happy Easter - and happy spring!

Thursday, March 3, 2005 9:45 AM CST

I was reading through the journal for these first days of March two years ago and it made me so sad to think how optomistic we were on these days because things were really on an "upswing" for Tucker. It still amazes me how quickly things turned and that just a few days later we would spend our final hours with him.

I have always loved the "Footprints in the sand" story. I have read it many times throughout my life. It appeared on the back of Tuckers funeral program because we really felt that was a time when there truly was only one set of "footprints in the sand" and they were certainly not ours! During this season of lent we are again using the "footprints" story as we journey with Christ from Gethsemany to Golgatha. I am again reminded how many times in the past two years the footprints have not been mine. Thank goodness for a faith that promises that one day I will again be reunited with that gentle little soul that I miss so very much!

"Footprints in the sand"

One night I had a dream. I was walking along the beach with the Lord, and across the skies flashed scenes from my life. In each scene I noticed two sets of footprints in the sand. One was mine, and one was the Lord's. When the last scene of my life appeared before me, I looked back at the footprints in the sand, and, to my surprise, I noticed that many times along the path of my life there was only one set of footprints. And I noticed that it was at the lowest and saddest times in my life. I asked the Lord about it: "Lord, you said that once I decided to follow you, you would walk with me all the way. But I notice that during the most troublesome times in my life there is only one set of footprints. I don't understand why you left my side when I needed you most." The Lord said: " My precious child, I never left you during your time of trial. Where you see only one set of footprints, I was carrying you."

Sunday, February 13, 2005 9:31 PM CST

Wow, what an emotional day. Rod and I walked in the first annual "Walk for Wishes" that was held by Make a Wish of North Dakota. All of our friends and co-workers were so generous and supportive of our efforts as we collected pledges. We even had some special friends that walked with us. Thanks to you all for helping make this day a success.

You have all heard us talk many times before about how very precious our six days in Florida for Tuckers wish trip were to our entire family. We wouldn't trade them for anything!

Anyway, here comes the emotional part. Just before the walk started two boys from Grand Forks who have been on trips talked about what they did and what they thought was fun. One of the boys went on his trip because we encouraged their family to look into the program. They went to Disney about a month after Tucker died. It was very much deserved by them! The other young man has been very sick with cancer and has not been expected to live several time throughout his treatment. As he stood there and talked I cried. I cried because of the fact that he was there, and healthy enough to do that. What a miracle! And then I selfishly cried because my boy wasn't there to tell his story. Sometimes I really wonder why things work for some and not for others. It's days like this I really miss Tuck.

Tomorrow, on Valentines Day, don't forget to tell those around you how much you love them an appreciate them in your life. Heck, don't wait for Valentines Day, do it now and everyday!

Thanks for letting me ramble, and please don't forget to sign the guestbook if you stop by.

Friday, February 4, 2005 8:00 AM CST

Well, we have once again entered the time of year that will mark the short days from the beginning to the end. It is, again this year, intense and emotional. We continue to miss Tucker so much each and every day, but he continues to send us little reminders that he is still very much a part of our lives.


A Face in the Clouds

I looked toward the clouds today
and for a moment I saw your face.
I wondered just where you have gone,
with the hope it's a better place.

Did you show yourself to me today
to tell me your alright?
Or was it just a daydream
playing tricks upon my sight?

Then I thought of when you left us.
You could not say a word.
Yet, the look you gave us said it all.
In our heart, your goodbye was heard.

You have changed our lives forever.
Your time here was not in vain.
We hope you know we tried it all
to keep you safe from pain.

We will always feel a void inside
because you are not here.
But each new thought you send our way
reminds us your always near.

So, until our journey nears it's end,
and we hear the angels sing.
We'll face each new day as it comes,
and live off the love that you bring.

Author Unknown

Tuesday, December 21, 2004 6:04 AM CST

Happy birthday to you. Happy birthday to you. Happy birthday dear Tucker. Oh, how we miss you!

Dear Tucker,

Happy 12th birthday. What a very special day this was, the first day of winter, in 1992. Your dad and I were so excited to meet you and welcome you into our lives. It was one of the three most beautiful moments of my life. The other two are when I married your dad, and when your sister was born.

Today, on a day that is a day for celebrating you, I want you to know how very blessed I am to have had you in my life. You brought so many smiles and so much laughter. Your sense of humor and the funny things you were always doing are what continue to bring smiles to our faces a year and a half since you have been gone.

Allyson is growing into such a wonderful young teenager. I know you would be so proud to be her little brother and to be giving her a hard time about so many things. It makes me sad to think about the things you two will not have the opportunity to share.

I hope your celebration is heaven is a grand one. I can only imagine and look forward to the day when we will all be together again. That will be a celebration like no other. In the meantime, thank you for letting me be your mom, it is one of the greatest gifts in my life, and please continue to send us little signs that you are still all around us.

I love you my sweet boy - Happy Birthday!

Love,
Mom

Sunday, December 12, 2004 11:16 PM CST

Tonight we did our annual round of Christmas caroling with the group from church. It was extremely cold - with wind gusts of up to 50mph - but we braved the weather to bring some cheer to those in need this holiday season. We were tempted not to go due to the weather and then thought that we could do "just a bit". It was a wonderful time spent with friends. After we finished singing we met at church for treats and some visiting. It was during that time that Rod and I slipped into the sanctuary, in the dark, and lit a single candle at 7:00p.m. for the Compassionate Friends candlelighting day. It was so quiet and still and such a beautiful sight as that flame flickered to honor our son. I, of course had tears, as we thought about that wonderful little spirit and how very, very much we miss his presence in our lives.

We love you Tucker!!

Thursday, December 2, 2004 10:09 AM CST

December is here, the house is almost completely decorated, but there is still so much to do. What a crazy, crazy month this is. I seem to have lost my drive to get everything done in the past two years. Actually, I kind of could care less about it, but it's good to have Allyson to keep me on my toes. In all honesty, when it's done and up I so enjoy it, but oh my gosh the extra work!!

We have a little snow and it is getting pretty cold around here, but we are looking forward to a winter getaway. We leave for Honolulu Hawaii on December 27th. This is my year to work Christmas, so I will work days the 24th, 25th, and 26th then we hop on the plane for sunshine the 27th - woohoo!!! We will be going with my Mom and Dad, my sister-in-law, Claire, and my three nephews. My Mom and Dad are taking us all to celebrate their 50th wedding anniversary. It should be a wonderful time together.

As we embark on the holiday season again this year, we are still trying to figure out how to make our way through without Tuck. Kids bring such a different perspective to your celebrations. One thing remains clear, we have so much to be thankful for and so many blessings in our life, but most of all through this whole experience we have learned to appreciate each and every day that we spend together. Sappy, I know, but it is so true.

Again, thanks for continuing to check in on us, and please sign the guestbook when you stop by.

December 2, 2004 @10:00a.m.

"Grief is not a sign of weakness, nor a lack of faith. It is the price of love."
Anonymous


Yes, it has been a long time since my last update. Lack of them does not mean we are not doing well, it has just been a very busy fall. Rod is enjoying the transition to his new job at church, Allyson is loving the 8th grade, and the birthing center (in post nine months since the holidays fashion)has been keeping me busy too. I guess busy is a good thing because this grief journey doesn't seem to get a whole lot easier, it changes, but it's not necessarily easier. I would have to say that the day to day sadness is better, though we still miss Tucker terribly each and every day, but there is just this dull ache deep at the core of all that we do. I can't even explain the feeling I have knowing that he just keeps getting further and further away and yet if I believe in our eternal life like I do, in a weird way each day that he gets further from me, he also gets closer again - if that makes any sense at all. Fall is just an intensly emotional time for us because it was the fall of 2002 that lead us into the four months that would change our lives forever.

We are looking forward to lots of noise and laughter around here on Saturday evening. Allyson is hosting a Halloween party with 20 Middle School kids - GIRLS AND BOYS UGH!- so we should have a lively time. I'll try to update sooner than two months from now and let you know how it went.

Hope you all have a safe and fun Halloween weekend filled with more treats than tricks. Thank you for continuing to check in on us. Even though the updates have become less frequent we still come here daily to see who has stopped by. If you do, please sign the guestbook, we enjoy hearing from you.

Friday, October 29, 2004 8:36 AM CDT

Yes, it has been a long time since my last update. Lack of them does not mean we are not doing well, it has just been a very busy fall. Rod is enjoying the transition to his new job at church, Allyson is loving the 8th grade, and the birthing center (in post nine months since the holidays fashion)has been keeping me busy too. I guess busy is a good thing because this grief journey doesn't seem to get a whole lot easier, it changes, but it's not necessarily easier. I would have to say that the day to day sadness is better, though we still miss Tucker terribly each and every day, but there is just this dull ache deep at the core of all that we do. I can't even explain the feeling I have knowing that he just keeps getting further and further away and yet if I believe in our eternal life like I do, in a weird way each day that he gets further from me, he also gets closer again - if that makes any sense at all. Fall is just an intensly emotional time for us because it was the fall of 2002 that lead us into the four months that would change our lives forever.

We are looking forward to lots of noise and laughter around here on Saturday evening. Allyson is hosting a Halloween party with 20 Middle School kids - GIRLS AND BOYS UGH!- so we should have a lively time. I'll try to update sooner than two months from now and let you know how it went.

Hope you all have a safe and fun Halloween weekend filled with more treats than tricks. Thank you for continuing to check in on us. Even though the updates have become less frequent we still come here daily to see who has stopped by. If you do, please sign the guestbook, we enjoy hearing from you.

Tuesday, August 17, 2004 8:28 AM CDT

Dear Tucker,

Well, there's lots of flurry around here as we prepare for Dads big day on Friday. I chose the new background in honor of him. You would love all that is going on. You were always in your glory when our house was full of people for you to entertain, and this weekend it will be bursting at the seams.

People start arriving tomorrow. Great Grandmother Reamy and Uncle Otis get here tomorrow afternoon. Thursday is the big travel day. Grandpa and Grammy will be returning from Ohio with Grandma Mickey. Uncle Stephen and Aunt Susan fly into Minneapolis and then drive to Grand Forks. And Auntie Claire, Brian and Ross will be driving in from Montana. Whew, I hope I don't get mixed up and leave anyone sitting at the airport or something. It will be fun to have the Reamys and the Martys together. That doesn't happen very often.

Dads ceremony is Friday afternoon and then we are having a party downtown on Friday evening. Dad and Jeff Shallman spent hours on Sunday putting together the music. I'm sure there are even a few of your favorites. I think I heard Lenny Kravitz! Your Dad has had such a remarkable Military career and we are going to celebrate big time. I know you would think this was all so cool. You were always so proud to be a military kid!

School is starting in a few days too. Remember how I used to hate to shop for school supplies and Dad loves it? Well, we went on Saturday and guess what, nothing has changed. I still hate it - four stores later we finally had everything on the list - ugh!! I have been really sad thinking about school starting this year and feeling cheated because this should be your year with Ally at Schroeder. I guess there will be many times that I feel cheated through the years, but this just happens to be the thing I'm pouting about right now. You wouldn't believe how your friends have grown. Jace is almost as tall as Miss Robin. I wonder how tall you would be and how you would be changing.

Well Bub, I'm sure there's some dusting or cleaning of some sort to be done to finish getting ready for everyone. I'm missing you like crazy! Not a day goes by that I don't think of you and all the love and laughter that you brought into our lives.

Love "to infinity and beyond",
Mom

"The only way to take sorrow out of death is to take love out of life." Unknown

Monday, August 2, 2004 9:12 AM CDT

Words From An Angel

I have not turned my back on you,
so there is no need to cry.

I'm watching you from Heaven,
just beyond the morning sky.

I've seen you almost fall apart,
when you could barely stand.

I asked the Lord to comfort you,
and watched him take your hand.

He told me you are in more pain,
than I could ever be.

He wiped his eyes then swallowed hard,
and gave your hand to me.

Although you may not feel my touch,
or see me by your side.

I've whispered that I love you,
while I wiped each tear you cried.

So please try not to ache for me,
we'll meet again one day.

Beyond the dark and stormy sky,
a rainbow lights the way!

--Art Anderson

Thursday, June 24, 2004 9:01 AM CDT

"When you come to the edge of all the light you know and are about to step off into the darkness of the unknown...faith is knowing one of two things will happen; there will be something solid to stand on, or you will be taught to fly."
-Barbara J. Winter

Happy Summer!

Yes, it's been awhile since my last post. We have "survived" our year of firsts and continue on. In many ways this second year seems so much more difficult. Tucker just seems to be getting further and further away. We bought a new house in Grand Forks and have been busy packing and getting ready to move. The move has forced us to make decisions about Tuckers things that so far we have not thought about. Until just a few days ago his room looked exactly like it did when we left for Minneapolis. I have told people many times "Tucker could come sleep there tonight if he wants to, it's exactly the same". Rod and I decided that as long as we live in this house that would be his room and it would stay the same. Packing his things has been difficult. So many memories. So many treasures. It will be hard to leave this house. It is the last place he left his touch.

On the up note, we are very excited about our new house. It will be the first time in ten years we have owned our own home. With Rod's military career coming to an end (29 days from now to be exact, but whose counting) the time was just right for us to buy. The neighborhood is wonderful and Allyson will have many friends close by. As bittersweet as it is, we are thrilled.

We are also looking forward to Rods retirement. He started counting the days over a year ago and it is hard to believe that his last duty day is less than one month away. We are hoping to have lots of family here in August for his retirement ceremony.

Summer is having a rough time coming to North Dakota this year. We woke up in the high 30's this morning - ugh. Hopefully where ever you are you are enjoying the sunshine and special time with family and friends.

I am going to close today by wishing a Happy 50th Wedding Anniversary (June 26th) to my Mom and Dad. What a wonderful example of what a marriage should be they have been to me. I love you both!!

And to my Dear Tucker - Not a day goes by that we don't think of you. Mostly with smiles, but sometimes with a tear. So many changes going on here now, don't forget to come along. I love you Tuck! Mom

Tuesday, March 9, 2004 8:42 AM CST

Hey Bub,

Today at 3:46 p.m. we will mark one year since you drifted out of our lives. That day, and the days leading up to it are still so vivid in my mind. How can it be a year already? We have so many wonderful memories of your time spent here with us, but like I told Sam's mom awhile back, I would like it so much better if we were creating new ones instead of having to always reflect on the old ones.

I have been doing so much thinking lately about your life and God's plan for you. It was then that I realized that you were born during the season of Advent and died during the season of Lent. I can't help but think there is a message in there for us about the fact that you came into our lives while we anticipated the birth of the Savior who would change our lives forever and you died during the same season that He did. The season that will forever remind us that one day, because of our faith and trust in God, we will be reunited with you again. What a day that will be.

I think about that day too. I wonder if you will be the 10 year old boy I remember or if you will have grown and changed. It doesn't matter. I know I will know who you are, and I know you will be the one to greet me, just as I did you when you arrived here. And, even though you are not here with us physically we feel your presence all of the time. It's just not the same as having a big 'ol Tucker hug, but it brings some comfort nonetheless.

And so, my dear boy, as we end our year of firsts and begin our lifetime of forevers, please know that we continue to miss you each and every day and that there is a huge hole in our hearts and in our lives that only you can fill. One of the other moms who recently lost her young son to transplant wrote on their webpage they will never regret the choice they made for treatment, but they will forever regret the outcome. I could not have said it better myself. I will love you and miss forever Tucker.

Love,
Mom

Friday, March 5, 2004 10:16 AM CST

"There is a place that we call Memory. A Province by itself which, though unseen, is home and haven to the heart - and there, in peace and beauty, waiting, are those with whom we shared our yesterdays"

Written by a member of the Compassionate Friends Group

Tuesday, February 17, 2004 9:09 AM CST

It has been awhile since my last update and I apologize for that. In many ways it has been so hard to write. We are having some pretty intense days as we quickly approach March 9th. I said to Rod, "how can this year have gone so fast when we have had so many days that have been long, dark, and endless?" It is unbelievable that we are so close to marking Tuckers death date.

It has been tough to read the journal entries of this time last year. Tucker was feeling so awful and yet, we were so full of hope that what he was going through was only temporary and that he would feel better soon. He was just heading to the bottom on this date a year ago, and Friday will be the one year anniversary of his transplant. Rod commented on Valentines Day that from that day on we no longer had any happy memories of times with Tuck. Only ones we wish could change. How true.

Luckily, we have had the opportunity to spend some wonderful time with family in the last few weeks. We had a fun long weekend in Virginia at the end of January and we were able to surprise Grandmother Reamy and help her celebrate her 85th birthday. It was great to see everyone, even for a brief visit. I just returned home from a few days in Phoenix - and much warmer temperatures than we have here - where I was able to help my Grandma Marty celebrate her 90th birthday. Both of these occasions have reminded us how important it is to stay connected with family, and how full our lives really are. Without sounding like a broken record, I would like to take this opportunity to tell you all, do these kinds of things while you can, because you never know when you may not be able to and what a terrible thing to regret.

A brief update on the friend from GFAFB who was a match to be a BMT donor. He passed his physical and all of the preliminary stuff and was ready to go do his thing any time. Sadly, the gentleman who he was a match for missed his window and is no longer a candidate for transplant.

Not much else to update. We are getting real tired of winter around here and looking forward to spring. This winter has been exceptionally cold and we have so much snow. Maybe our spirits will raise a bit when we have some sunshine and some golf! (Even though sometimes, in fact most of the time, my golf game is nothing to raise the spirits)!

I'll leave you today with a verse from Psalm 147:3 "He heals the brokenhearted and binds up their wounds." We pray for continued healing in our hearts, and the many hearts that have been broken this year. Thanks for your continued support and if you stop by, please leave a message in the guest book. We look forward to hearing from you.

Friday, January 30, 2004 10:53 AM CST

It's a tough day today. On this day last year we had a big send off party with the two fourth grade classes at Lewis and Clark. Tucker was so thrilled to be the center of attention and of course there was plenty of cake. The kids were all so great and made it such a special day! Hard to think it was the last day he would spend surrounded by his friends. He had such a great day, but it was hard for Rod and me knowing how hard the next few months were going to be for him. My heart is so sad.

"Rejoice with those who rejoice; mourn with those who mourn." Romans 12:15

Saturday, January 17, 2004 4:26 PM CST

This caringbridge website is one year old today. It was this date a year ago when Fairview called to say the cord blood they had been testing was indeed a match for Tucker and they gave us a date to head to the Cities to start workup and have the transplant. It was such a great day. We were so excited to finally have a date and a plan and know that we were headed for treatment that was going to release Tucker from the grip of this dreadful disease. As I have said before, we did indeed experience a miracle, it was just not the miracle we had hoped for.

Today, one year later, I am still so thankful for this wonderful tool. A tool that we thought would allow us to keep everyone informed as we traveled on "Tuckers Journey". Yes, it has allowed us to communicate in that way, but it has also given us so much more. This site has brought us support and strength beyond measure. It has allowed you all to lift us up and carry us when we really needed you most. It has connected us with parents we don't even know who are traveling the same journey of grief and have offered us hope. It has allowed us to share our thoughts, hopes, and fears with those of you far away and let us feel so close to you all. Thanks caringbridge, and most of all thanks to all of you who have continued with us on "Our Journey". We appreciate that you are hanging in there with us and we look forward to reading your entries in the guestbook. My devotional today says "when walking through the "valley of shadows," remember, a shadow is cast by light."

Thanks for continuing to shine lights for us!

Thursday, January 15, 2004 9:42 AM CST

Gosh, it just doesn't seem possible, but it has already been 10 long months since we said goodbye to Tucker. Yesterday was the day of Tuckers service here in Grand Forks 10 months ago. Because I was thinking about that I wanted to share with all of you a wonderful tune that Pastor Tom wrote for the service and sang for us. It is to the tune of "My Favorite Things". He did such an awesome job on it, and we are so blessed that he not only knew Tucker, but loved him too because Tucker sure did love him. Here's the song.


A FEW OF MY FAVORITE THINGS

Smiling and laughing and telling good jokes,
Hanging with Ally and hugging my folks,
Dancing to music and loving to sing,
These are a few of my favorite things.

Football and baseball and hockey too,
Redskins and Orioles and cheering the Sioux,
Spaceships from Legos with real cool wings,
These are a few of my favorite things.

Mom and Dad, sister Ally, Grandmas, Grandpa too,
These are a few of my favortie things and they made my life so good.

Biking and running and goofing around,
When playing Sony I never frowned,
Pizza and Kit Kats and chocolate cake,
These are a few of my favorite things.

Friends at school and teachers who taught me,
People who loved me in my church family,
Having a good time, so much joy to bring,
These are a few of my favorite things.

Mom and Dad, sister Ally, Grandmas, Grandpa too,
These are a few of my favorite things, and they made my life so good.


Thanks Pastor Tom for being such a special part of all of our lives!

Sunday, January 4, 2004 4:41 PM CST

We are very excited this week and would like to ask you all for a special round of prayers. Rod's boss out at the Air Force Base has been notified that he is the perfect bone marrow match for someone waiting for transplant. He is a little nervous, but excited at the same time. Having just watched us go through this process a year ago he knows how important this is and what a difference he is making to some lucky family. He left for Georgetown today to have his physical tomorrow. If everything goes as planned he will return home on Tuesday and then travel back for his harvest in a couple of weeks. Please keep him, his family, and the family who is waiting for this special gift of life in your prayers in the comings days and weeks. We will keep you updated as things go along.

Tomorrow is the first day back at school following the Christmas break. We have enjoyed some wonderful time together, but as always are looking forward to getting back into a routine - at least the mom is looking forward to getting back into a routine!

We survived the holidays and have put another notch of "firsts" in our belts. Yes, there were many tears and we missed Tucker so much, but we had some laughs and smiles too. Thank goodness for faith, family, and friends! We have looked to them all for strength not only through the holiday season, but throughout the past year.

Wednesday, December 31, 2003 12:49 PM CST

Happy New Year!

It is with very mixed emotions that we ring in the New Year. Though the year 2003 will always be thought of as the year that brought us such great sadness, it is also the year that was to be the last time we saw Tucker smile, the last time he made us laugh, the last time we looked into those beautiful big brown eyes. It is a year filled with so many treasures that we don't ever want to forget that in many ways it will be hard to say "goodbye" to it.

On the other hand, like with every new year we are looking forward to the promise of new beginnings. A year filled with promise and expectation. A year, as with years past, filled with wonderful times spent with family and friends. Yes, the hurt will still be there at the core of everything we do, but hopefully the healing will begin to melt a bit of the hurt too.

As for Tucker, his healing is complete and we rejoice in that fact. We marvel at the wonder of his heavenly life and know that the "ringing out the old and ringing in the new" of our earthly lives will pale in comparison to what we have to look forward to as we one day meet our King face to face and celebrate our eternal lives where time makes no difference.

We love you Tucker, and miss you everyday. Thank you for the love and laughter you brought to our lives.

Wednesday, December 24, 2003 2:19 PM CST

"...for unto you this night is born, in the city of David, a Savior, tis Christ the Lord."

It's Christmas Eve and we are busy, as usual, putting the final touches on. The shopping and wrapping are done, and we'll be going to church tonight. Even with all of the hustle and bustle it is not hard to tell that there is something important missing. The holiday doesn't quite have the same cheer as usual, but we are doing our best.

So, as Tucker spends his first Christmas with Jesus, and we spend our first Christmas without him here with us, our one wish is a wish for peace. Peace in the world, and peace in our hearts. We wish the same for all of you.

Merry Christmas!

Sunday, December 21, 2003 7:57 AM CST

Happy birthday to you. Happy birthday to you. Happy birthday dear Tucker. Oh, how we miss you!!

Happy 11th birthday Tucker. Grandpa and Grammy are here and we will be spending the day thinking about you and celebrating the fact that we were blessed to have you in our lives. Of course we will be going to church this morning. There is a special candle up on the alter. It is the one we used for the Compassionate Friends candle lighting during the Christmas program last Sunday. It will be lit during church today in honor of your big day. This afternoon we will be delivering the "giving tree" gifts. We all decided that since that is something we have done with your help on other birthdays you would think it was neat if we kept that tradition. It will be fun to see how excited the children are when we show up with our arms loaded with gifts for them. Remember how cool that is? Sometime this afternoon we will be releasing eleven balloons towards the heavens. I hope you'll be able to catch one. We will be topping the day off with a meal at your favorite restauraunt. Everyone has agreed that will probably be the Royal Fork even though it's not Friday night clam night. I hope your having a special celebration with Jesus today. Please look over us and help us out. It's going to be a tough one! I love you, Mom.



You're a Special Person In God's Eyes

On the day you were born, God held the stars within his hands and watched as they twinkled and shined.

He tried to find two of the best he observed, but he couldn't quite make up his mind.

Then suddenly two of them danced in the air, and the rest of them took to the skies.

On the day you were born, you were blessed with the stars that were chosen to shine in your eyes.

Written by Desiree Derosier Kaczor

...and oh, how those beautiful, big brown eyes did shine!!

Thursday, December 18, 2003 9:07 AM CST

You know the old cliche' "what a difference a year makes"? Nothing could be more true! Last year on December 18th we were spending our first full day at the Magic Kingdom on Tuckers fabulous Make a Wish Trip. For six short days we walked away from all the scary thoughts and just enjoyed the company of each other. We have so many great memories of those days, and we look back on them often.

I'm not sure if it is because of Tuckers approaching birthday this Sunday, the holidays, or the fact that just one short year ago we were having the time of our lives, but the last few days have been really hard. We are missing Tuck more than ever. Just when we were finally finding some even ground, everything feels very unbalanced again. I guess that's how this sea of grief goes. There are high tides, and low tides, but never quite a smooth part. One of my devotions recently said "a smooth sea never made a skillful sailor". It was based on 2 Timothy 4:2 "...be prepared in season and out of season; correct, rebuke and encourage with great patience and careful instruction." I guess maybe right now I don't care if I ever get that skillful, I'd just like some smoothness for awhile.

Monday, December 8, 2003 9:01 AM CST

December is upon us and we are trying to get in the Christmas spirit. Busy trying to strike a balance between what traditions to keep and what to do differently. It's hard, but I think we are doing okay. Tucker loved this season so much I can't imagine ignoring it completely.

I wanted to post this poem. It was sent to me five years ago when my brother, Mark, died very suddenly in December. I loved it then, even though it brought many tears, and I still love it. Somehow through the tears there is comfort. It's how I chose to think of Tucker this Christmas. I hope you like it.

I'M SPENDING CHRISTMAS WITH JESUS CHRIST THIS YEAR

I see the countless Christmas trees
around the world below.
With tiny lights, like heaven's stars
reflecting on the snow.

The sight is so spectacular,
please wipe away that tear.
For I am spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs
that people hold so dear.
But the sounds of music can't compare
with the Christmas choir up here.

For I have no words to tell you
the joy their voices bring.
For it is beyond description
to hear as angels sing.

I know how much you miss me,
I see the pain inside your heart.
For I'm spending Christmas
with Jesus Christ this year.

I can't tell you of the splendor
or the peace here in this place.
Can you just imagine Christmas
With our Savior, face to face?

I'll ask Him to light your spirit
as I tell Him of your love.
So then pray one for another
as you lift your eyes above.

So please let your hearts be joyful
and let your spirit sing.
For I'm spending Christmas in heaven
and I'm walking with the King!

Author Unknown

Wednesday, November 26, 2003 1:58 PM CST

In a year that has been filled with so much change and a sadness that still continues to linger in the core of our souls we find we have so much to be thankful for. As we struggle to figure out what the holidays will be like without Tucker here to share them with us, it is those blessings that we will try to focus on.

We have said it before, but the past year our faith has been pushed to a whole new level, and yet God has proven to us that even in the worst of times he never leaves us. As the "footprints" legend goes, in fact, that is when he carries us. We are thankful for a God that is faithful, loving, and true. We are especially thankful for the promise of eternal life.

We have also learned in the last year that when the going is tough, you find out who your friends are. We have always been blessed with wonderful friendships, but this past year we have pushed our friendships to the limit and we have found out that we are surrounded by some pretty terrific people. What a blessing you are all to us. Those that are a part of our daily lives here in Grand Forks and those we have come to know as we have traveled on "Tuckers Journey". You have all been so faithful, and your support means the world to us.

We wish you all a blessed Thanksgiving holiday and hope that you are able to enjoy some time with family and friends. We continue to pray for the families that are going through transplant and all that brings, and we especially pray for the families that have lost a child this past year.

"The only way to take sorrow out of death is to take love out of life." Author Unknown. Wouldn't it be a sad life if we chose to not love at all so that we would never have to experience sorrow?

Blessings to all,
Rod, Tracy, and Ally

Wednesday, November 19, 2003 6:25 PM CST

On Monday we traveled to Minneapolis to go to a memorial service they hold two times each year for the patients who have died while being treated there. It was a very emotional service, but more difficult just to be at the hospital. It is the first time we have been there since we walked out on March 9th. I think it was good for us to go. A step in our journey of grief. I would like to share a reading with you that was printed in the program for the evening. It was written by an ELCA minister named Dietrich Bonhoeffer. He served in Nazi Germany and died in a concentration camp. He wrote this to his fiance when he was sure his death was soon.

"Nothing can make up for the absence of someone whom we love, and it would be wrong to try to find a substitute; we must simply hold out and see it through. That sounds very hard at first, but at the same time it is a great consolation, for the gap, as long as it remains unfilled, preserves the bonds between us. It is nonsense to say that God fills the gap; God doesn't fill it, but on the contrary, God keeps it empty and so helps us to keep alive our former communion with each other, even at the cost of pain... the dearer and richer our memories, the more difficult the separation. But gratitude changes the pangs of memory into a tranquil joy. The beauties of the past are borne, not as a thorn in the flesh, but as a precious gift in themselves."

Over the last nine months I have read many things about death and loss, and people have said many things in an attempt to ease our sorrow and pain, but nothing has hit the core of how I feel more than this reading. Nothing can make up for the absence of Tucker and nothing, not even God, can fill the emptiness, but if we can just hold out and see it through, in time we will heal. Tucker was indeed a special gift and we treasure our time with him beyond words. That's what makes the pain so deep.

Thanks for continuing to check in on us, we are thankful for your love and support.

Tuesday, November 11, 2003 0:03 AM CST

Tucker would love this new background in honor of Veterans day. He was so very patriotic and he loved the flag. He was also very proud of his Dad's Air Force career and the fact that he goes to work everyday to help protect the freedom we all so enjoy. Thank you Rod, and thanks to all of the Veterans for that wonderful gift.

Today is the day we begin to mark the "one year ago today...." for many things. This is the day, Veterans Day 2002, that Tucker had his MRI and we received the devastating news that there was indeed significant changes in the white matter of his brain. I can't begin to tell you the feeling we had knowing that this was something terrible, and not knowing for sure what it could be. Because we struggled so hard to find an answer to all of the changes we were seeing in Tucker I prayed that the MRI would tell us something. That doesn't mean I had to like what the answer was. It wasn't until a few days later when we met with the pediatrician that we got a preliminary diagnosis of Adrenoleukodystrophy. It was so weird to have such a horrific diagnosis, and at the same time be somewhat relieved because at least we knew what we were dealing with. Rod and I visited on Sunday about the spectrum of emotions we have dealt with in the last year and even more so in the four months from Tuckers diagnosis to his death. There are no words to describe the feeling you have as a parent when you are told your child has a disease that will cause him to deteriorate a little each day until it eventually takes his life. We had no choice but to seek whatever avenue of treatment we could find no matter what the risks because the prognosis of doing nothing was just as dismal. In the end, we lost him anyway, but at least we went down fighting until the end. It doesn't make the hurt any less, and we continue to miss him so much, but at least we didn't have to watch him waste away a little at a time. When I am especially missing him I try very hard to focus on how wonderful it must be for him to be in his heavenly body that is whole and perfect and how very frustrating it must have been to go through the changes he did and not understand what was going on. He was such a special kid.

I love you Tuck.

Friday, October 31, 2003 7:28 AM CST

Happy Halloween Tucker! I know this day ranked right up there as one of your favorites. Nothing like a chance to dress up goofy and collect and eat way too much candy. I missed planning a costume with you this year. I'm sure your Dad didn't miss hearing me complain about my feeble, once a year attempt at thinking I could sew!! Remember your great Stegasaurus costume the year you were with Mrs. Moore at Kiddie Campus? I think that was our best one ever. You made a pretty great Muskateer last year too. I especially liked your mustache. It made you look like Dad - ha.

On Sunday at church we will be honoring you for All Saints Day with a flower and a candle. Your name will be read with all of the Saints who have been baptized this year and all of the Saints who have died. It will be hard for us, but Pastor Tom says it will be hard on many people there too. You were loved by so many people Tucker. It really is incredible the lives you touched in such a short time.

We love you and miss you Buddy!

Love, Mom

Monday, October 27, 2003 8:41 AM CST

No, I am not rushing the season, skipping by Halloween and Thanksgiving and getting right into Christmas - and no, I haven't lost my mind, well maybe, but I'm not going to admit to it. For those of you who aren't familiar with the lovely region we live in, today we are having our first snow. It is beautiful out, and I can just imagine what it looks like from Tucker's view. I hope he can still catch them on his tongue!

I have been having some really hard days and I'm not sure why. The sadness seems to prevail more than ever. I had a mini melt down in church yesterday and I haven't done that since Good Friday service. I told Rod, I am so tired of only seeming to have two emotions left. Sad and mad. It is a pretty tough existence for someone who used to be so happy go lucky. Bottom line - it sucks!

I'd like to share something with you that I garnered from one of the many Caring Bridge websites that we still continue to follow. It pretty much sums things up.

THINGS WE WISH YOU KNEW ABOUT OUR GRIEF.....

*Please say our loved one's name. We desire to hear it.

*We may cry, please understand.

*We love to see photos of our loved one.

*Grief is not contagious.

*We may lose weight, gain weight, and have trouble sleeping. We are not as attractive as we once were.

*We can have highs and lows, but we are not crazy.

*Occasions such as Halloween and Christmas are difficult for us to get through.

*Our loss is not like losing a pet.

*Grief is a slow healer, please be patient with us.

*Grief changes people. We are not the same people we were before his death.

*We need our friends and hope to someday regain our zest for life.

(written by Suzanne Hugueley)



Thanks for checking in on us and for your continued support. In many ways, we need it now more than ever!

Fondly, Tracy

Wednesday, October 22, 2003 9:25 AM CDT

We received an invitation from Fairview for their memorial service. I seems they do a service two times each year for patients that have died there. It is being held on Monday November 17th at 7:30 in the evening and will include all of the patients who passed away between January 1st and April 30th. The timing is not the greatest and our schedules are pretty busy around then, but I think we are going to make every effort to go. It will be very difficult to be in the hospital again and visit the unit, but I think it will also provide some healing for all of us. One of those really tough things we just need to face, and we ask God to guide us. "When I am afraid I will trust in you." Psalm 56:3

On the 28th of October we are also starting to attend a grief support group. Grand Forks does not have a compassionate friends group, but Altru hospital, were I work, does have a kids and teen grief support group. It will meet once a week and the parents get together in a different room to network at the same time. Towards the end of the session both groups converge for some discussion prior to dismissal. I hope we find it helpful. Apparently from all of the research and questions I have asked of those "in the know" it is the right time for us to be starting something like this.

Thank you all again for checking in on us and for your continued support. We are so blessed to have so many wonderful, caring people in our lives. Please continue to drop a note in the guestbook when you visit - it is fun to see who has been here.

May your days be filled with blessings.

Tuesday, October 14, 2003 5:40 PM CDT

Sorry it has been awhile since I have updated. I am really toying with the idea of discontinuing this page. We still get a few "hits" so a few of you are still out there wondering how we are. You know, the intent of this page was to keep you all informed as we traveled on Tucker's transplant journey. My what a bend in the road we have taken. I guess I still find it to be some kind of therapy to log on, see what people have written in the guestbook and catch you up on the happenings around here once in a while. Let me know what you think and I will rethink plans.

It is hard to believe that half of October is gone and Halloween is just around the corner. A year ago at this time we didn't even have a diagnosis, we just knew there were some dreadful changes going on with Tuck. He went trick or treating with his two best friends in the whole world last year. The dads all went with and they came back with quite a hall. It was the first time ever that Tucker didn't stop after one block so he could come home and start eating - ha. I remember thinking how wonderful it was to have a "normal" experience after weeks in the downward spiral. No trick or treating this year, what a bummer.

I am really starting to dread the holidays. We throw Tuckers birthday in on the 21st of December too. Last year we celebrated in fine fashion courtesy of Make a Wish. I still can't begin to tell you what a treasure those six days were for us all! I have done a lot of reading about grief and remembrances and the like since Tuckers death and have come up with what I think is a pretty neat way to include him in Christmas. Santa will put money in Tuckers stocking this year and Allyson will be able to give it to the charity of her choice. Any guesses as to what she will pick? Another of the moms whose website we follow is asking people to release a balloon on her daughters upcoming birthday. I think that is a really neat idea and may even use it if there a some of you out there who check in and would be willing to do that. Thanks for the neat idea Kathie.

In closing, again we would ask that you keep special prayers for all of the children undergoing transplant. There are so many families out there with struggles like ours. And, once again sounding like a broken record, please cherish each second with your loved ones, and as Douglas Pagels writes, "May your days all be blessed with the presence of an angel watching over you." I know my days are.

Tuesday, September 9, 2003 10:22 AM CDT

Wow, where have the past six months gone? I think we can even go as far as to say where has the last year gone? Oh to have some of those precious days back. Maybe not to change anything, but just to savor them a bit more. If we have learned one thing through this whole ordeal that we would like to encourage all of you to do it is to take each day and live it to the fullest. Appreciate all that you have and don't sweat the small stuff - heck, don't even sweat the big stuff. Live it!!!

Okay, enough of my soap box and now for the update. We continue to "hang in there". Some days we feel, as the saying goes, like a duck. Calm on the surface and paddling like crazy under the water. Each day continues to bring some tears and sadness, but we are trying so hard to focus on the here and now and still keep Tucker a part of our lives.

Allyson is loving school and she is very busy. She is playing fastpitch softball and has her first game on Thursday. They practice everyday after school from 3:30-5:00 with games on Thursdays and Saturdays. She is also playing city league Fastbreak basketball. Practice for that is two evenings a week from 8:00-9:30 (what about a 9:00 bedtime?!?) and games are on Saturdays. She played her first games last Saturday morning and I was busy birthing babies so I didn't get to go. Rod was there to cheer and she scored a basket for me. Confirmation will be starting in a couple of weeks and she is still active playing her bass in orchestra. Oh yeah, and then there is school work too. Need I say more. I am loving being able to be part of her days and focusing on her. She seemed to be so lost in the shuffle a year ago when we were up to our eyeballs with Tuckers struggles.

Rod has some wonderful new news. We have known about it for a little while but were not quite ready to make it public yet. One year from now he will be leaving the Air Force after 20 years and has recently been hired as the Youth and Family Coordinator at our church. We could not be more excited. We spent the weekend painting his office and getting it set up. He will serve part time this next year as he wraps up his Air Force career and then go full time next fall. He has so many gifts to bring to that job!

I continue to stay busy at the hospital - we live in a very prolific community! I was lucky to spend the day on the 28th of August at the bone marrow drive here in Grand Forks. A big thanks to our good friends Ann and Ed Grossbauer for all of their hard work in making this day such a success. We were pleased with the turnout and want to say thank you to all that came to be tested and placed in the registry. What a special gift you may one day be able to give to someone.

As I close today I would also like to ask once again that you continue to keep the children and families that we met during our brief stay in Minnesota close in prayer. They have impacted our lives in ways we can't even explain. Just in the past week three more children that we have been following have lost their battles and we know only to well the pain their families are going through. We pray for Gods blessings of strength to the families of Brandon, Mason, and Bret.

Love,
Tracy

Tucker - you will be in our hearts forever - always missing you - Love, Mom

Tuesday, August 26, 2003 9:14 AM CDT

Today, like many of the days we have spent over the last five and a half months is bittersweet. It is the first day of school in Grand Forks and it was so exciting to take Allyson to the her first day of 7th Grade. She is so into the social piece of school and we did the whole "what am I going to wear, and who do you think I will sit with at lunch" routine - how fun!! I remember those days so well. It was after I dropped her off and I was on my way home to start on some yard work that I lost it realizing how unfair it was that I wasn't dropping Tucker off at Lewis and Clark to embark on his last year of grade school and that next year he and Ally wouldn't be together at Middle School. One more thing among thousands to come that we will never experience with him. How sad and unfair........

Monday, August 11, 2003 10:11 AM CDT

It has been five months since Tuckers death and we continue to experience sadness, and a big emptiness in our hearts, but we are also filled with so many blessings.
We are so fortunate that those around us continue to shower us with love, friendship, and comfort.

We are looking forward to an event here in Grand Forks on August 28th. When we were so anxiously waiting for a match for Tucker for his bone marrow transplant so many people asked how they could be tested. This year the Sertoma Club donated the money they raised from their annual Duck Derby over the 4th of July to have all of the Firefighters and Policeman in Grand Forks tested and placed on the National Bone Marrow Registry. We are hoping to recruit as many other people as we can to also be tested that day as part of "Tucker's Legacy". What a wonderful life saving gift. We know Tucker would be proud.

Allyson is busy enjoying the last days of summer vacation and looking forward to the start of 7th grade. We can't believe how much of a young lady she is - where has the time gone?

Rod and I continue to stay busy at work and try to squeeze in a round of golf now and then.

We ask that you continue to keep the many children that are still struggling with transplant issues in your prayers, and also those families that are dealing with the same grief issues we are.

God's Blessings to All.

Rod, Tracy, and Ally

Friday, August 1, 2003

One year ago today we had our first formal meeting with the ADHD specialist and left her office with a prescription in hand and the hope that it would be the beginning of some very positive changes for Tucker. It wasn't until later in the fall after his behavior and personality continued to change that he would have his MRI that lead to the devastating diagnosis of ALD. How quickly our lives spiraled out of control. What a difference a year makes. Last year at this time our house was in constant commotion, and now it remains so very quiet. Losing that guy sure left a big whole in our lives.

We love you Tuck, and not a day goes by we don't think about you and wonder what your everlasting life is like.

Wednesday, July 2, 2003 2:19 PM CDT

THE LOAN

"I'll lend you for a little time,
A child of mine," God said:
"For you to love the while he lives,
And mourn for when he's dead.
It may be four or five years,
Or twenty-two or three
But will you, 'till I call him back
Take care of him for Me?

He'll bring his charms to gladden you,
And shall his stay be brief
You'll have his lovely memories
As solace for your grief.

I cannot promise he will stay,
Since all from earth return
But there are lessons taught down there,
I want this child to learn

I've looked in the wide world over
In my search for teachers true,
And from the throngs that crowd life's lane,
I have selected you,
Now will you give him all your love,
Not think the labor vain,
Nor hate me when I come
To take him back again?

I fancied that I heard them say:
'Dear Lord, They will be done!
For all the joy Thy child shall bring,
The risk of grief we'll run.
We'll shelter him while we may,
And for all the happiness we've known,
Forever grateful stay.
But shall the angels call him
Much sooner than we've planned,
We'll brave the bitter grief that comes,
And surely understand.'

Author Unknown




I'm not sure that from now to the end of our time we will ever understand exactly what God had planned for Tucker and for us, but we thank him for letting us have that incredible boy in our lives and look forward to the day when we all shall be together again.

We will always love you Tucker!

Monday, June 16, 2003 3:40 PM CDT

Little Angel

I will not forget you
Little angel, precious child
I think about you every day
The love we shared - your smile.

I think about the happy times
And not about the sad
And I treasure every memory
Of the special times we had.

I'm leaning on God's promise
That someday we will be
Together again in Heaven
Where the best is yet to be.

J. Morse


We love you Tuck, and we miss you so......

Saturday, June 7, 2003 8:12 AM CDT

On my way to heaven,
I heard you start to cry.
So I thought that I would turn around,
to tell you all good-bye.

I know that you all love me,
and this is hard for you to understand.
But God came down one afternoon,
and took me by the hand.

It must be real important,
this task that I must do,
to take me home so early,
away from all of you.

I want you all to know
that I miss you very much,
but I'll always remember the love I felt
from your gentle touch.

Just remember God is with you,
and he is with me too.
So whenever you feel sad or lonely,
just know I'm watching over you.

Well, I have to go back home now,
There's so much for me to do.
But I miss you all very dearly,
and I'll never stop loving you!


We love you Tucker, and we miss you so.............

Thursday, May 22, 2003 8:31 AM CDT

What a difficult week this has been. It seems that each day we have been faced with something that has brought so many emotions to the surface.

The ceremony at school on Monday was wonderful, but oh so sad. The student council presented a plaque to Rod and I that will be permanently placed at the school. It has a wonderful picture of Tuck on it, and reads "Tucker was a classmate, a friend, and a student at Lewis and Clark". What a nice tribute. Rod and I were both a puddle after that, and then it was our turn to present our award. The award was given to one of Tuckers classmates whose name is Jimmy Sorum. He was very deserving of it, and was so happy to get it. His mom and grandma were at the ceremony too. We were glad that this is what we have decided to do each year.

Tuesday we finished paying the funeral home. I know that sounds like a silly thing to be upset about, but it was just one of those difficult things in a very unexplainable way. I also found out on Tuesday that I am able to see the geneticist here in Grand Forks on the 30th of June. Hopefully we will have some answers as to how this whole thing ever came to be. Again, one of those things that needs to be done and yet is so difficult to face. This one is big, however, because of the way it can affect Allyson.

Wednesday I logged onto the website of the little boy with ALD that was a week ahead of Tucker. I am here to tell you this child should be the poster child for both ALD and bone marrow transplant. He has soared like an eagle through this whole process. He was discharged to the Ronald McDonald house the day after Tucker died and has never been readmitted to the hospital. His blood counts continue to rise, and the best news of all is that his 100 day MRI showed that his brain is disease free! Remember he only had the very first signs because they have been looking for it manifest throughout is life and were able to treat so early, but what wonderful news for them. They will be going home to Texas on June 12th. We are so delighted for them, but as you can imagine it is a little bittersweet for us. We had such high hopes.

Tomorrow morning we will be leaving on the train for Montana. We will be spending Memorial Day weekend in Great Falls with my mom and dad, and yes, Tucker. His headstone should be in place and my mom and dad said the cemetary is very pretty this spring. I'm sure we will be, as one of my friends in Great Falls says, "watering our faces" regularly through the weekend. We are also taking the golf clubs and looking forward to a little fun, too.

We would ask as you spend your holiday weekend to please keep some wonderful memories of Tucker close, and we would also like to ask you to say some extra prayers for all of the kids on unit 4A at Fairview. We continue to follow many of their stories through their caringbridge websites and so many of them are still in such a day to day struggle, and there are several of the families that will be spending this Memorial Day just as we are. Thinking about and remembering their loved one. What an incredible group of kids and families. We feel blessed to have had them be a part of our lives.

Gods blessing to you all!

Friday, May 16, 2003 5:57 PM CDT

Rod and I have created an award at Lewis and Clark elementary school in memory of Tucker. The award is being called the "Tucker Reamy Student of Character" award. It will be given to a current 4th grader at L&C each year that most exemplifies all of Tucker's best qualities. His sense of humor, his kind, gentle spirit, his willingness to help those around him and his love of school. The first award is being given Monday morning, May 19th. We know Tucker would approve of the classmate that has been chosen and we are looking forward to participating in the ceremony.

Thursday, May 8, 2003 10:38 AM CDT

Well, another month without Tucker is just around the corner. It is so unbelievably quiet at our house especially after the roller coaster ride we were on the last few months. We continue to recieve many cards, calls, and words of support from those around us. We also check the website daily and look forward to the few entries that continue to be made in the guestbook. What a God send! We have said before and will continue to say that we are so blessed with those around us and we would have given up on this journey long ago without the encouragement and support from all of you.

This experience has taken our faith to a whole new level. We continue to marvel at the miracle of Tucker's salvaltion, but are just selfish enough to wish that he was still here with us. Gosh, how we miss him!

"Behold, I am going to send an angel before you to guard you along the way." Exodus 23:20

May your days all be blessed with the presence of an angel watching over you!

Wednesday, April 9, 2003 8:28 AM CDT

It has been exactly one month today since Tucker's death. Sometimes it feels like it just happened and sometimes it feels like so long ago that we last heard his voice, last saw that smile, and last saw the twinkle in those big brown eyes. Each day brings a new tear, but each day also brings a smile, and some healing. We keep busy, and we are all trying to get settled into whatever it is the new normal will be in our lives without Tucker around us. We hold fast to the belief that Tucker is whole and perfect and probably causing quite an uproar in heaven. What a beautiful thought, and how lucky they are to be enjoying his laughter!

Edward Bulwer-Lytton once wrote:
"We are born for a higher destiny than that of earth; there is a realm where the rainbow never fades, where the stars will be spread before us like islands that slumber on the ocean, and where the beings that pass before us like shadows will stay in our presence forever."

What a wonderful thing to look forward to - isn't it awesome that Tucker knows something we don't know!

Sunday, March 9, 2003 6:35 PM CST

Dear Friends and Loved Ones,

Today at 3:46pm our precious Tuckers "journey" here on earth came to a very peaceful end and he has now embarked on the greatest journey of all. The journey to live with our Heavenly Father - the journey to the "Next Place". Tucker was surrounded by Rod and I, Allyson, and Grammy and Grandpa. He was surrounded with love and we are so blessed to have been a part of this day with him. We have, as I stated yesterday, laughed, cried, read stories, prayed, listened to Tuckers favorite music and tried to ease his worries as much as we could. He was a trooper to the end and even outscored God three to one at one point today - we like to think of it as his hat trick. The fourth time down he let God have the final point - what a brave, brave, boy. Now he is soaring with the angels and tonight we will see him as we look at the moon and the stars. We have come to believe that in the end, we did indeed get our miracle. It may not have been the one we thought it would be, but God has taken Tucker to live with him in a body that is whole, and perfect! And to quote a dear friend of mine - I can't wait to meet him when he is perfect. And so, as we are reminded in Ecclesiastes, there is indeed a season and a purpose for everything and this was Tuckers time to die.

Saturday, March 8, 2003 7:20 PM CST

As I write this today we are slowly coming to the end of this journey, and though it has not lasted very long it has been the most difficult thing you can imagine - for all of us involved, but especially for our wonderful son, Tucker. He has been so brave and he was so very unsuspecting heading into this. He so trusted the decision Rod and I made to bring him here for this treatment and that he would again be returned home. We did too. And in a sense he is being returned home. Home to live with Our Heavenly Father - home where he can again be whole and the wonderful, hysterically funny boy that used to live at our house. We have been so blessed to have had him in our lives, if even for this brief time.

The bleed has continued in his head, and he spent another three and a half hours in surgery this morning trying to get that under control. A follow up CAT scan immediately after surgery showed that the bleeding was as bad, if not worse than when he went into surgery. His neurologic status is completely shot. His pupils are fixed and dialated and he did not respond at all to the most intense neurologic testing. All signs that he is choosing to end this horrific struggle. He is, however, very peaceful and he is not having any pain. Rod and I are at his side. We have laughed, cryed, read stories, looked at pictures and listened to Tuckers favorite music. We are waiting for Allyson and my mom and dad to arrive from Grand Forks and we are also waiting to hear from those that may be traveling from Virginia. In the meantime, we are treasuring all of these precious moments and waiting for God and Tucker to make the ultimate decision.

The quote I chose for today could not be more fitting. It is by Kimber Annie Engstrom, "I have a God who hears me. I have a God who's near. I have a God who's waiting with a bottle for my tears."

Saturday, March 8, 2003 2:52 AM CST

Day +16. It is with an absolutely broken heart that I write. In so many ways, it seems like the very outcome we were trying to avoid with this procedure is rapidly beginning to happen. I am sorry for the abrupt entry earlier, but everything was happening so quickly I just felt the need to get the prayer chain going stronger than ever, knowing that the evening is when many of you are checking for updates. It seems that the road on this journey has had some major construction detours. After a steady decline in Tuckers mental status and physical status with regard to his respiratory system on Friday he was intubated at around 3:30 in the afternoon and taken to CAT scan for a repeat scan. Several things throughout the day were leading his physicians to believe that we may be dealing with something other than the cyclosporin toxicity that we thought was the problem on Thursday. It seems that his kidney function had progressively gotten worse as evidenced by a creatinine of 2.7 and a BUN of 135. Much to his benefit he was still making lots of urine, but it was getting more bloody all the time. They also did a blood smear and learned that his body was attacking his red blood cells. They were very fragmented on the smear. This was also confirmed by an LDH level that the high end of the normal range is 700, and Tuckers was 10,000. All of these things put together lead to a diagnosis of Hemolytic-uremic Syndrome and TTP. I still don't understand them enough to share a lot of details with you, but believe me we are learning. Because his coagulation (ability to clot) was also not real great, what they learned on the repeat CAT scan was that sometime in the past 24 hours (since the scan of around 4:00 yesterday afternoon) Tucker had suffered an intracranial (within the brain) bleed. Big, scary stuff! He was rushed to surgery around 6:00 pm for an emergency craniotomy. They were able to evacuate all of the blood and place a device called a ventriculostomy that is draining excess cerebral spinal fluid off of his brain to help decrease some of the intracranial pressure. All of these changes in his brain certainly explain why we saw the rapid change in his mental status over the last few days. They Neurosurgeon was fairly optomistic in that the brain matter was normal color underneath the bleed and the brain moved the way they would expect it to with both heart rate and respirations after the procedure. The have removed the bone from the occiputal lobe of his head and replaced with something more "expandable" for now and we will address that issue many months from now, but I guess he won't be a hockey player after all. Tucker did have some bleeding problems in general while he was in the operating room all related to his inability to clot well. Around 1:30 am the ventriculostomy was not draining like the surgeons felt it should and Tucker was again taken to CAT scan. There was again some changes in the ventricles, but they did not feel he was stable enough to go back to the OR tonight, nor was the situation emergent enough to warrant taking that risk. Needless to say Rod and I are both mentally and physically exhausted, and Tucker looks absolutely horrific. We had a visit from one of my OB co-workers, Liz Malm, while Tucker was in surgery and she was here when the surgeon spoke with us afterward. It was good to have someone with a "fresh" mind hear what he had to say. We have said many prayers of thanks for the otherwise healthy boy with all of his feist, because he is going to need that attitude now more than ever. His heart and lungs are healthy and that is a bonus. This morning (Saturday) he is going to have another central line placed in his groin that they are going to use for a procedure called plasma phoresis. What they will do is draw Tuckers blood off his body, separate the plasma, and replace his with new plasma and then return the blood back to him. So, all you people that sell your plasma in Grand Forks - get busy - you may be a direct part of our journey! The other thing they will be using the new line for is hemo-dialysis. Yes, I mentioned earlier in the week the thought of this makes my really "twitchy", but it seems it is a necessary evil and one we will hope and pray is just a temporary fix just like the rest of this stuff. So, it seems like we have already asked this of you so many times, but the next fews hours, and days are so critical that Tucker needs you all praying harder than ever. I would also ask you to hug one another a little tighter and be a little more forgiving of those around you, and most of all don't forget to laugh. We all live in such a precious balance.

Friday, March 7, 2003 4:31 PM CST

Day +15. The last 24 hours have been our worst yet. At 3:30 this afternoon Tucker was put on a ventilator. The decline in his status is due to many things and we have been told that this is just a "detour" on his journey. I will write more later to give you details, but for now please pray, pray, pray. We need it now more than ever. I will share a prayer with you that was written by the chaplin here that is how I have felt today.

I am so tired and weak.
I don't even have the strength
to try to find the words
to talk with you, God.

I only hope you can hear
the words of my heart and
understand all that is inside of me
in my silence, too.

Amen

Thursday, March 6, 2003 5:00 PM CST

Day +14. There is a Swahili Warrior song that says "Life has meaning only in the struggle. Triumph or defeat is in the hands of God....So let us celebrate the struggle." If we are to celebrate the struggle, then today we should be dancing in the streets because the last 24 hours have been filled with struggle. The first hurdle was last evening when Tuckers central line completely occluded (plugged). I think it had been working up to that for a couple of days because the pumps were filled with alarms the hours leading up to the event. The nurses worked on the line for about 3 hours and used a drug called TPA ( I am more familiar with Urokinase and Streptokinase) and they were finally able to pull a long stringy, what they called, fibrin sheath from the catheter and get it working again. What a blessing. Failure to do so would have resulted in Tucker having to go into surgery to have that one replaced and with a low platelet count I wasn't relishing the thought of that. I am in fact a bit perplexed at the fact that it could clot off at all when his platelet count was so low, but it did none the less. He has also had a low grade temp again, but they truly believe it is related to engraftment (the stems cells digging in and doing their job). Speaking of engraftment, the good news of the day is that his white count was .8, double what it was yesterday - yes! ANC was .6 - it needs to be .5 for three consecutive days and we can walk in halls, another positive. We can do that, if he has a better day than today. All day he has been very sleepy, and just not himself, but we were not quite able to put a finger on what was different. At one point he didn't even recognize who we were. That was pretty scary. The reason this was so perplexing is because he is being weaned from all of the meds that would tend to make him kind of loopy. The pinnacle of this whole episode came at around 2pm this afternoon when he had a seizure. Rod and I were both at his side when it happened and it was really scary to watch. It lasted about two minutes and stopped on it's own before they gave him anything to stop it. They have started him on Dilantin (anti seizure medicine) again on a scheduled basis to help prevent this, but it needs to get built up to a therapuetic level in his blood before it works. We made another trip to CT. They are looking for a number of things including a bleed in his brain, infection such as meningitis or encephalitis, or changes in his brain due to drug toxicity from the cyclosporins. Again, all pretty scary stuff. We are sitting waiting for the results of that now. If the CT is negative, he will have an MRI tomorrow. The Dr. has assured us there are a number of reasons he could have seized, it is common (to them, not to us), and we may not be able to isolate the cause. More downside news is that his platelet count today was only 7. Did I not predict that yesterday? He received platelets again today and this afternoons count was up to 52. His poor body has little fine pinpoint bruises all over it called petichiae. Rod and I agreed, they did a great job with all their teaching prior to this, but absolutely nothing can prepare you for what you see at the bottom. Hopefully there will be more encouraging news tomorrow, in the meantime we know this is all in God's hands and he surely knows the plan better than we do.



Post Script update 5:45 p.m.- Dr. Baker was just in and they confirmed that the seizure was related to the cyclosporin drug that Tucker has been receiving and that there were definite changes in the posterior part of his brain even from the MRI on the 10th of February. The problem with this being the cause it that this drug is very important, especially now during engraftment, to avoid Graft vs Host disease (GVHD). That is when the new cells (graft) attack the body (host) they are living in. The syptoms of this can be mild or severe and even life threatening. One more bump in the road. For now, they are holding the drug and they will reevaluate everything tomorrow. He did assure us that the changes in the brain from this are not permanent - another small positive.

Wednesday, March 5, 2003 3:51 PM CST

Day +13. Do any of you remember the Richard Dryfuss, Bob Murray movie of a few years ago called "What About Bob"? Well, to steal the words of Dr. Leo Marvin (Richard Dryfuss' character) "baby steps, baby steps, baby steps". That is what we are taking. When Dr. Baker was in today he reported it was pretty much the same old, same old. At this point, we are considering that to be very good news. There is certainly none of the major complications that could be going on happening with Tucker. White count today held steady at 400. Platelets hit an all time low at 18 and he was transfused, so it will interesting to see what he rebounds to tomorrow. It is my guess he will have back to back days of transfusion. He has only had that happen one other time. Potassium level was also low today at 3.4. Not a big surprise considering the Lasix he is getting for the "leaky" problem. He had a bolus of potassium this morning, but after they checked it again this afternoon it had not risen a significant amount so they just bolused him again. As of today Tucker has about seven pounds of water weight on this body. All of that extra fluid means his heart is working a bit harder so we "broke" his blood pressure again. It has, however, responded nicely to an extra dose of the anti-hypertensive medication. No fever except for again related to the Amphoterecin run. Again, all things that have been able to be easily fixed, and that, as Martha Stewart would say, "is a good thing".

Tuesday, March 4, 2003 6:20 PM CST

Day +12. Drum roll please - white count today was .4 and rising! The "leaky" fluid issue seems to be the biggest hurdle at this point. They continue to go up on the lasix hoping that if they completely dry out the vessels they will pull the fluid in from other places. Only problem with pushing this too far is that the kidneys tend to take kind of a hit. This is evidenced by a subtly rising BUN and creatinine so they are being very cautious. Tuckers weight is up about five pounds since Saturday which is pretty substantial considering it is all fluid. His feet look like little clubs on the ends of this legs! He has been afebrile (without a fever) for 24 hours except for one brief stint during a run of a really wicked antibiotic called Amphotericin B (nicknamed awfultericin if that gives you any clue how yucky it is). It is another one of those drugs that just makes Tucker shake uncontrollably. Sunday night when he got it for the first time, Rod was sitting on the bed beside him and the bed was shaking so hard the nurse heard it out in the hallway! Tucker is completely wiped out when the two hour run of that is over. Thank heaven it is only given once per day. It is used for fungal and yeast infections, neither of which Tucker has, but just to be safe. He has also only been hypertensive once in the past 48 hours. We continue to slowly wean the haldol because he is taking the Zyprexa so hopefully he will be less sleepy and feel like doing a few things. Remember our new friend Chandler, he is the other little boy with ALD that is exactly one week ahead of us? We are watching his progress like hawks so that we know what we have to look forward to. Well, today his ANC has been over 500 for three consecutive days and he got to walk in the hallway - next week should be our turn. They have started to do some discharge teaching with us, and the Dr. assures us Tucker is right where they expect him to be. We bought him a cheeseburger from McDonalds today and I told Rod I never thought I would see the day when I would love to see him eat McDonalds. He thought it sounded great and held it for about two hours, but in the end, not even a bite. Guess we'll just have to keep trying. I'll leave you today with a wonderful quote by Max Lucado that we received on a card, "you have God who hears you, the power of love behind you, the Holy Spirit within you, and all of heaven ahead of you." Sounds like we have everything we need.

Monday, March 3, 2003 5:53 PM CST

Day +11. 1 Peter 5:7 tells us "cast all your anxiety on him because he cares for you." However, the roller coaster ride we have been on the last 24 hours has made it difficult to heed this word. It all started last evening when I was at the RMH catching up on the laundry. I had the computer hooked up to the phone line because I had been doing the journaling and reading the guest book. I had to leave the room to take the trash out and I was greeted on the first floor of the house by one of the attendants who said, "are you Mrs. Reamy, your husband has been trying to reach you and needs you to call him at the hospital." You can imagine the panic and fear as I rode the elevator back to the room to call. It seems the CAT scan of the day did not show any infection like they thought they might find, but they did find a belly full of fluid. They were concerned that this may be due to a fairly serious condition called venous occlusive disease. Long story short it has to do with the kidneys and the liver and can need dialysis to fix it. Well, just mention dialysis and get a bit "twitchy". It is so hard on your body. So, after a long night of worry and prayer Tucker had an ultrasound today to see if this was indeed the issue and thankfully it was not. Good news, but still didn't answer where this big, round, fluid filled belly was coming from. The last answer we got was he is just "leaky". This was further explained in that the lining of the gut looks just like his mouth, broken down and raw, and is not allowing fluids to absorb like they normally would so they are escaping into the abdominal cavity. More activity and more peeing will eventually cure it - crisis averted. The last 24 hours have been pretty much fever free - or at least only low grade, no higher than 101. White count stayed stable today, platelets were 28 and he was transfused, and the blood pressure issue has stabilized out with the current med regimen - all good things! Perhaps the biggest and best news of the last 24 hours is that Tucker has again resumed taking his Zyprexa (behavior med) by mouth - woohoo!! The haldol, ativan and fentynal combo of the last few days has solved the problem, but he is so unsteady on his feet he walks like a drunken sailor -ha. They will be weaning all of these meds over the next few days. So, dear ones, little by little the improvements are coming and little by little our miracle is evolving.

Sunday, March 2, 2003 6:14 PM CST

Day +10. Finally, a Sunday that didn't break my heart. I got to spend it with family, the only thing missing was church and all of our "family" there. We also enjoyed a visit from Mr. Davis. Tucker was pretty sleepy while he was there, but rallied long enough to have his picture taken and rub each others bald heads! We had some of the same news with regard to Tuckers status today and we had some new news. I'll bore you with the same old stuff first so we can segway into the really big stuff. Fever. Fever. Fever. It just seems to keep rearing it's ugly head. When it hovers around 104 it really zaps that little man - not to mention the people sitting around watching. It takes a small army to get tylenol into him, but when he finally takes it, not only does it stay down, it works well on the fever. If any of my medical friends are reading this I know how we can get really rich. Invent an IV form of Tylenol!!! They did a CAT scan this afternoon because apparently they can see infection sources there that may not be showing up with the blood cultures. After all of the unsuccessful attempts at the MRI this fall because of Tuckers in-ability to lay still, we were concerned about whether they could get a good scan today, but he was pretty cooperative and the tech felt it was accurate. No official result on that yet. His platelet count only rebounded to 28 today after receiving them yesterday so he was transfused again today. Count this afternoon was 52 - yeah! Now for the big news of the day - drum roll please - his white blood cell count was a whooping .3 - hallelujah!! It was .2 yesterday so he is making progress. I told the Dr. today that I didn't need labs to tell me that. I have been really encouraged the last couple of days by how fast his mouth is healing. I know that couldn't be happening unless he was making some white blood cells. Looks like engraftment is well on it's way - one more prayer answered. God continues to work the miracle we are all so desperately looking for. I am especially reminded of his love and how much he gave so that we might have new life as we embark on the season of lent this week.

Saturday, March 1, 2003 9:12 PM CST

Day +9. The relief pitcher has arrived and I am feeling like I have pitched extra innings, the bases are loaded, two down and nobody is out. What a sigh of relief to be taken out of the game tonight. Tucker turned a bit of a corner today. His mouth seems to be getting better. He has been spitting up a lot less blood, has talked more today, and has been drinking more water the last 24 hours. Still not willing to do his mouth cares or take medicine by mouth, but hopefully that is going to happen in the next couple of days. Platelet count was 22 today and he received a unit of platelets. Fever has been the big issue of the past 24 hours. He hung around 104 for most of the night last night and into the afternoon today. Fevers are so darn scary and I just watched him shake and shiver until I thought he was going to come right out of his skin. It didn't help any that the young lady in the room next to us, she is 17 years old and was transplanted in November and then readmitted with complications two days after we got to the unit, coded at around 4 a.m. Her poor mom was so distraught and all I could think of was "what if that was us." After praying and praying I finally got a few more winks around seven. Sadly, she coded again around eight am and that time they were unable to revive here. Gosh, what an awful thing to watch. The families up there really network and become close during our stay and my heart is breaking for them tonight. Allyson went to a great workshop today that was especially for kids her age and it was all about having a sibling with a life threatening illness. I think it was a great thing for her to get to do while she was here and she really seemed to have a good time. We also spent some time shopping at the Mall of America this afternoon while Rod and Tuck spent time catching up with each other. It is going to be hard to see her leave again tomorrow. Thank heaven spring break is just around the corner and she will be returning to spend time down here again in just a couple of weeks. Hopefully Sunday won't be quite as dismal this week when we get to spend at least part of the day with family. We are looking forward to making our way through various care packages that Rod delivered. We are also looking forward to a visit from Mr. Davis. He is Tuckers gym teacher that I talked about earlier in the week. He is in the cities this weekend and is eager to show Tucker his new hair cut. Apparently it has caused quite the stir at Lewis and Clark! Be looking for new pictures in the album tomorrow. Until then, I just can't stress enough how thankful we are to all of you for your continued support not only for Tucker, but for all of us as we make our way in Tuckers Journey. Good night.

Friday, February 28, 2003 3:57 PM CST

Day +8. Biggest news of today is that we have a new address. Tucker was moved to room 202 on the same unit. The room is about twice the size of the one we had been in. They rarely move anyone once they are in and settled because the cleaning process to turn the rooms around is pretty tedious. The only reason they even considered moving us is because they felt that perhaps Tuckers attitude would improve in a little bigger room where he didn't feel quite so closed in. The new room also has an entire wall of windows to the outside. The view is roof tops and sides of other buildings, but the sunshines in and you can really feel the difference in there. Hopefully this will all be a change for the better. Last evening was pretty awful behavior wise. Tucker was very angry when our company left the hospital to go back over to the RMH for the night. He was especially happy to see Grandpa. They are over at the hospital with him now so I could come over to do some laundry and take a longer break than I have been able to have since Rod left. It was great to shower without the clock ticking - I'm sure the staff will appreciate it too - ha. Tuckers blood pressure has remained high today and they are working on tweeking the meds with regard to that. Labs were good today. Sugar, platelets, and hemoglobin were all status quo so no transfusions today. Amylase and lipase that I told you about yesterday were also normal so it is probably just the irritation of the lining of his gut that is making his tummy so tender. Poor guy, if the inside of him looks anything like his mouth it is no wonder he is miserable. Like I said the other day, good reason to be pretty mad about life in general - next week he should start to turn the corner. In the meantime, I am really enjoying seeing Allyson and mom and dad (Tucker is too, when he's not sleeping) and tommorrow Rod will join us - yeah! It was nice to look at the calendar today and see the last day of February. Hard to believe we have already been gone from home and month. Maybe time isn't going as slowly as it seems.

Thursday, February 27, 2003 5:00 PM CST

Day +7. One week post transplant and so far everything is going exactly as we were told to expect it! I am journaling a bit early today because Tucker and I are sitting here anxiously awaiting our vistors. Pretty much the same as far as Tuckers status today. Still pretty sedate, though angry and a bit combative when he is awake. The Ativan made him hallicinate (he was eating clams if that tells you were his mind is) so we had to discontinue that. They added a second hypertensive med today because his blood pressure continues to hang just a tiche on the high side. They have also drawn some labs just now (Amylase and Lipase) to check the status of his pancreas. Some kids develope a condition called pancreatitis (an inflammation of the pancreas) during this phase post transplant. They are questioning that in Tucker for two reasons. The weird range his blood sugars have been the last couple of days ( the pancreas is the insulin pump in our bodies) and he is also complaining of lots of tummy pain. Dr. Orchard thinks the pain is actually because just like the lining in his mouth is broke down, so is the entire lining of his digestive tract. But, because the sugars are still a bit whacked, they wanted to check just to be sure. His blood sugar remained high most of the night and then stabilized out in the 150's today. I was sure glad they weren't real aggressive yesterday and started insulin right away or we probably would have "bottomed him out." Still no ANC count today ( that is the absolute neutrophil count - white blood cells) so he is not making his own yet. Platelet count was 28 today and he got a unit of platelets and his hemoglobin was back up up today so the red cells of yesterday did the trick. I'm telling you, these people have this thing down to such an exact science that I don't even question when they want to do something, so far everything they have treated has responded beautifully. Who am I to question that. It is a bright, sunny winter day here in Minneapolis and I enjoyed a walk over to the RMH for my shower instead of taking the shuttle - hence my quote for today "Winter is on my head, but eternal spring is in my heart." Author Unknown.

Wednesday, February 26, 2003 8:43 PM CST

Day +6. Tucker has felt so rotten today it is unbelievable. It has been heartwrenching to watch him. It reminded me of a poem by Ann Weems that goes partially like this "...If I could, I'd wipe away your tears and hold you close forever in shalom. But God never promised I could write a rainbow, never promised I could suffer for you. Only promised I could love you. That I do." As a mom, this has been the hardest thing I could ever imagine watching your child go through, and as a nurse, it is so helpless for me to sit and watch and not be able to fix. Today's ailments again stemmed mainly from the mouth sores. The secretions in his mouth are very thick and very bloody. He tries to spit, but doesn't have the energy and then when he swallows them, he gets really nauseated. They have started some new medicines so that he is more sedated. They started him on Haldol, and Ativan to try to help with his agitation and they have increased the fentanyl (pain medicine) dose. The combination of the three of these have kept him pretty sleepy today, when he is not wretching. A couple of other things "broke" today, both are routine with BMT, and they had solutions ready and waiting. First, his hemoglobin was 7.6 this morning, normal range for this lab is 11.7-15.7. To that end, Tucker received two units of red blood cells today. Are you ready for this? They typed him prior to giving cells and he is already the new type (O positive). Pretty amazing. The other thing is that his blood sugar went from running normal since we got here to 532, normal for this lab is 60-115. This is common because of the steroid therapy that he is on. They did not start him on an insulin drip yet, but they have just redrawn it to see where it is at tonight and will make a decision based on that. They have told us this is temporary and does not predispose him to being diabetic later in his life - whew. Lastly, he is completely bald as of this evening. His hair has just been falling out in clumps all day and making him really itchy. He felt good enough to have a shower around six tonight and the nurse went ahead and shaved what was left. He thought that was an okay deal. Rod will post new pictures this weekend after he returns with the digital camera. Mom, Dad, and Allyson arrive tomorrow afternoon. Tucker is especially excited to see Ally. Our care partner volunteer, Pam, is going to meet them and escort them into town so they can find the hospital okay. They are feeling a little bit better about the "big city" driving knowing that.

Tuesday, February 25, 2003 5:31 PM CST

Day +5. I am going to start today with a quote because it is very fitting for the way I am feeling today. It is from an anonymous author that says, "No burden is too heavy when it is carried with love." So, with that as a prelude let me share today with you all. From a BMT standpoint the Drs. and staff could not be more pleased with how things are going with Tucker. Thus far everything has been "text book". That is wonderful news because the transplant is afterall what we are here for and the only thing that there is that can cure this terrible disease that Tucker is afflicted with. The down side again today is the behavior piece of his disease. Because he hasn't been taking oral medication since Sunday morning and because the Zyprexa (behavior med) does not come in an IV form, we are again faced with the challenge of finding something that works for him. Put yourself in his shoes though and ask yourself if you wouldn't be just a little bit angry - perhaps even a lot bit angry! Three weeks ago you were cruising along, going to school with your friends - which he loves, feeling great, and pretty much didn't have a care in the world. Then your mom and dad bring you to this "cubicle" and completely isolate you from everyone and everything and give you this "poison" medicine that makes you feel really, really, bad - remember, you weren't sick before so why would you need medicine - and all of your choices are taken away, and you can't even do the one thing you love the most - EAT! Yep, I bet I'd be a bit mad and frustrated too. The only way Tucker has found to deal with his anger is to yell, throw things, and beat on me. Thank goodness I have been able to keep telling myself that this is not the "real" Tucker, and if we can just get over this hurdle we can get back on the right meds and find him again. Remember I reported yesterday of seeing the old Tucker again, he's still there, we just have to be patient. And so, it is with love and understanding that I stay be his side, even when he's at his worst. Yes, it is a burden, and one I would rather not be carrying at all, but God has chosen Rod and me to be this wonderful creatures parents and we will carry the burden of seeing him through this with love.

Monday, February 24, 2003 5:08 PM CST

Day +4. I have seen a big change, much for the better, with regard to Tuckers behavior. He has still had an inappropriate outburst now and then, but for the most part the old Tucker is back. We even had a bit of fun together today just being silly. It was great to see him smile and laugh after many days in a row of just being angry. One of the things we are enjoying doing is looking at pictures. In all of my organized glory - NOT - I have somehow ended up with about ten years of pictures that have never been taken out of the packages, much less put in albums. If your doing the math, yes, that is most of Tuckers life. I brought them here to work on and he and I have really had some "strolls down memory lane" looking at them as I plow my way through. It is great to see them and remember some of the times more happy than the one we are going through now. Kind of therapeutic for both of us. Nausea has reared it's ugly head again this afternoon, but the biggest challenge of the day has been those ugly mouth sores. His mouth and lips are just raw and getting him to do the oral cares that are required is a challange at best. Even the nurse, Kent, who he really made a connection with yesterday, tried unsuccessfully today. Dr. Orchard assurred me this is just one of the many phases we will go through, it's normal kid behavior, and "this to shall pass". Lastly, Tucker's hair is beginning to fall out. Mostly in the back where he lays on the pillow, but you can get little loose strands out all over. He seems a little upset by all of that even though we talked about it alot before coming here, and he probably even announced to a few of you that he was going to be bald. Mr. Davis, the gym teacher and Lewis and Clark told Tucker that when he lost his hair, he would shave his head. So, Mr. Davis, if you are reading this, go for it. And, as for the students at Lewis and Clark, Tucker is counting on you holding Mr. Davis to his word and reporting when it has happened. :)

Sunday, February 23, 2003 4:33 PM CST

Day +3. Before I completely forget to tell you, don't forget to check out the photo album. Rod has posted new pictures and they include the one I talked about on transplant day of Tucker holding his bag of cells. From a BMT standpoint the physicians and nurses are very pleased with Tuckers progress. His lab work looks exactly like they want it to. His blood pressure is a bit high once in a while so they have started him on a daily hypertension med, and his mouth is pretty painful so they have also started him on a continuous drip of Fentenyl (pain medicine). But, both of those things are very common and very easily fixed. Nausea has been a bit more of an issue today than the past couple of days, but again, the medicine they give him for than seems to be pretty effective. Attitude continues to be an issue, but we continue to search for the right combination of drugs for that too. We have had many phone calls today from family and friends and it has really helped to pass the day. Sundays are the worst for me, and I think for Tucker too. When we are home they are such a family day and we look forward to church and spending time with our friends there. The walls of our little room really seem to close in on the weekend. It will be nice when the week starts again tomorrow and Tucker is busy with PT, OT, Child Life, and the teacher. It makes the day go much faster. We had another visit from Mr. Greene and his wife today. He took some pictures with his digital camera to take back and share with Tuckers school. Even though Tuckers behavior was not the best while he was here, you could tell he was glad to see him. Tucker is especially looking forward to and visit from Allyson at the end of this week. She will be coming down with Grammy and Grandpa on Thursday and then Rod will be back over the weekend too. I, too, am looking forward to seeing all of them. Allyson got new braces on February 3rd and I haven't even seen her with them! Another bit of news that I keep forgetting to share with you, not because it isn't important, I just keep forgetting it. I had a call from one of our friends in Grand Forks last week and he informed me that the Sertoma Club (which is a service organization in Grand Forks) is going to be using money from their big Fourth of July fund raiser to have all of the eligable fire fighters in Grand Forks and East Grand Forks tested to be put into the National Bone Marrow Bank! Wow, how cool is that. It can end up being pretty costly having a large group of people tested at once so I was thrilled to hear that someone stepped up with the funds to do that. Thanks to them for their efforts - surely someone will benefit from this just as we have. One of the things I have been sad about with Tucker using cord blood is that it is an anonymous source. We will never have anyone to thank for this life giving gift. Or at least to thank in person - I say a special prayer of thanks everyday for the mom that said "okay". It was the birth of her child that allowed a re-birth of mine - what a gift.

Saturday, February 22, 2003 3:12 PM CST

Day +2. Wow, it has been an emotional day. Rod left to go back to Grand Forks a little before noon and it was a pretty teary goodbye. Tucker and I will be ok for the next week by ourselves, but gosh we are going to miss him. Tucker feels really rotten today. He has run a low grade temp most of the day, itches, and the dreaded mouth sores have appeared. His face is very swollen and it's all he can do to even swollow his saliva. Thank goodness he is not throwing up. Labs as of today have a white count of 0.1 (normal is 4.0-11.0) so the chemo has done it's job. It will be a minimum of 14 days post transplant when Tuckers body begins to make them on it's own again. That is called engraftment. Failure to engraft is a fatal situation so what a stressful time this will be! The platelet transfusion of yesterday was, as reported, a success. His platelet count yesterday morning was 32 (normal is 150-450) and this mornings was up a bit to 59. See why the possibility of having a bleed is so concerning. Personality wise, he is still not the boy we brought here, but who could blame him considering all he has gone through the past two weeks. Rod and I sat down and had a long talk with him after a less than pleasant time having a shower this morning. We explained to him that it is okay to be mad, and it's okay to say he feels terrible. It's even okay just to ask for a lot of medicine and sleep through this next part of the journey. But it is not okay to scream, yell, and especially not hit anyone who is trying to help him. We again reinforced how every important this whole thing was in order to save his life and that everyone here is only doing what they are doing to help him get better, but that saying no to some things is just not an option. Wouldn't it be great if we could be like I Dream of Jeanie and blink ourselves to the end of May?! My inspiration for today comes from a quote I read by C.S. Lewis that says, "God allows us to experience the low points of life in order to teach us lessons we could not learn in any other way."

Friday, February 21, 2003 6:38 PM CST

Day +1. Hooray, it's a plus day - only 99 more to go until they think about letting us leave Minneapolis. The first post transplant night was really "crappy". Literally! You can't not poop for two weeks and then unload it all in 12 hours without some problems. Poor Rod, he got the wrong end of the stick in that coin toss. He and Tucker were both exhausted this morning when I arrived back at the hospital. All of that brought about another issue in that there was quite a bit of rectal bleeding involved. That is because the lining of your digestive tract is pretty fragile after chemo. Once the bleeding starts it can't stop to easily because your platelet level is so low so he got a platelet transfusion today and that seems to have stabilized everything for now. Tuckers behavior has also continued to be a huge issue. We really dropped the ball with regard to the psychological part of his disease and we are finding out just how well the medication he was taking for that had been working. Suffice it to say he is not very pleasant to be around when he is not getting it. There is alot of name calling and there has even been a few punches thrown. It is a good thing the staff got to meet the charming Tucker during our first few days here because he's not very likeable right now. Psychology is working really hard on figuring out a combination of IV medication that will work on this, but as we found out this Fall, what works one day may not work the next. That's what lead to the MRI in the first place. We have had a couple of visitors today. Bishop Rick Foss, of the EaND synod was in town for some meetings and he came up to the floor. He knows of Tuckers journey through is daughter Naomi. She is one of my once a week lunch buddies in Grand Forks. We thought it was pretty neat that he took time out of his busy schedule to come see us and to pray with us. We also had a visit with Tucker's teacher from Grand Forks, Jim Greene. He has been so wonderful through this whole school year, as has everyone at Lewis and Clark. We are so blessed in that regard. Mr. Greene came with all sorts of cards and goodies from the students and staff at school. Tucker was pretty sleepy while he was here, but he rallied long enough to smile and visit a bit. His behavior was quite commendable during both visits - thank goodness. Guess he knows when to turn it on and off. Tucker was a celebrity in the Grand Forks Herald again today. This is the fourth time that Marilyn Haggerty has written about him in her column. It is fun to see, there are several "hits" in the guest book today from people who have learned about his journey from todays article. He was also delighted with a gift that was received in the mail from the Grand Forks Blues Hockey Club. It is a Fighting Sioux hockey jersey autographed by the coaches and players. It is hanging proudly in Tuckers room - Go Sioux! They love to see all of our UND stuff right here in the heart of Gopher territory. Tucker was wearing a Sioux shirt during one of his clinic visits the first week we were here and one of the nurses there told him she couldn't promise he would get quality health care here dressed like that. We have had fun joking back and forth about the two teams. So dear ones, I leave you today with what I think is fitting verse from Jeremiah 29:11 that says "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future." We know he has big plans for Tucker.

Thursday, February 20, 2003 2:00 PM CST

DAY 0!!!! It has happened. It was originally to come to the floor at around 11:30, but the lab called and said it would be closer to 12:00. In the end, the cells were hung at 12:46 and done infusing at 1:00. Can you believe the whole thing only took 14 minutes from start to finish. We took a picture of Tuck holding the bag of cells prior to them being hung. My comment was "nothing like literally holding your life in your hands." We were told that the actual transplant would be rather anticlimatic, but in all actuality, even though it only took a few short minutes it was very moving to watch those drops drip into that tubing and travel into Tuckers body. Rod, Tucker and I had a really nice blessing ceremony around 11:00 with the chaplin here on the floor. It wasn't the same as if Pastor Tom could have been with us, but it was very nice just the same. She shared some scripture and prayers and annointed Tucker with oil. We were blessed to have Pastor Tom visit us in Grand Forks the night before we left to come here and he performed a healing service much like the one we did today. The people on the unit make a really big deal about the transplant. Tucker was presented with a ballon, a stuffed Husky dog, a poster that says, "Hooray it's BMT day" (autographed first by Dr. Peters), and a really cool Hot Wheels/Nascar thing that shakes, rattles and makes lots of noise. The nausea has been a bit better today, but he has been plagued with diarrhea. Remember it was just a few days ago that we reported exactly the opposite - too bad we can't find the happy medium :) Last night was very long. Tucker really showed signs of not having had his Zyprexa (behavior med) since Monday. He was both aggitated and aggressive. The upside is he drank a whole pitcher of water when he couldn't figure out what else to do with himself, and he never threw up! It was busy trying to keep him out of trouble, but I'm not sure how much sleep I would have gotten in anticipation of todays event anyway. It was a lot like working the night shift, only I wasn't on the time clock. Rod didn't sleep the best either so we are all a bunch of slugs this afternoon. The other big side effect of everything was another high blood pressure. 144/108 - ugh. The medication they give for that has so far been very effective. The only new drug started today was a drug called G-CSF (Neupogen). They liken it to the fertilizer in the garden. It is getting the garden bed ready so the the new seeds (Stem cells) can grow. He will be on it until day +23. So, the much heralded, long awaited transplant is history and now we just continue on our journey to the miracle that is waiting at the end.

Wednesday, February 19, 2003 7:43 PM CST

Day -1. Well, tomorrow is the day that this is all about. We don't have an exact time that the transplant will take place, but we do know that it will be sometime in the afternoon. I will try to post on the website sooner tomorrow so that you will know how it went. Tucker really began to take on the "sick" look during the night last night and when I returned to the room this morning I took one look at him and began to cry. It is so hard to watch him go through all of this and to think of what his body is going through. It gets harder each day to keep faith that we are doing the right thing and this is indeed going to be a success, even though we know it is. The ATG runs have gone a bit smoother than the first one. Tucker has been able to take liquid tylenol and it has really helped with the fever and chills that came with the first dose. They are also running it at a slower rate. The combination of these two things seems to have worked. Nothing new in the medication department today. The "pee routine" thankfully came to an end at noon today and that has been a real blessing. Tonight there will still be vitals and vomiting and pump beeps and medications, but it should allow for a little more sleep than the last four nights. I think part of the reason we are so emotional and having difficulty dealing with everything is merely because of the sheer exhaustion we are all feeling. Tuckers behavior has been a bit more agressive today. It is probably a combination of just feeling really rotten and how he expresses that, and the fact that he has not been taking the medication he has been on since this fall for the behavior piece of his disease. It was oral and he has not taken pills since the morning on monday. There are new pictures in the album tonight, but I would like to warn you before you rush to look at them. They are not the face you are used to seeing. The big brown sparkling eyes are gone for awhile, but we wanted you to be able to see the effects of this journey so you can watch it come full circle with us. We know this goes without saying, but please say an extra prayer for Tucker in anticipation of tomorrows big event. Our love to you all!

Tuesday, February 18, 2003 8:46 PM CST

Day -2. Is it Thursday yet? Guess not, but we don't have far to go - thank heaven. Today was again full of the yucks. First the good news. At about noon today we did the victory dance and the last round of chemo was taken down and thrown away! That part of the journey has ended. The side effects of that toxic stuff is going to hang around for quite some time, but at least we aren't adding new ammunition daily anymore. It was a great feeling to be done with that. We also had some lab work drawn today that let us know the chemo is hard at work doing what it is supposed to do. Tuckers white blood cell count is down to 5.1. Normal is 4.0-11.0 so it is definitely headed down. His Neutrophil count is 96%. Neutrophils are immature white blood cells so this number tells us that the WBC's he does have are immature and his body is still trying to make a few, but it won't be long before it can't. They started two new drugs today and one has some wicked side effects, and Tucker experienced most of them. The drug is another immuno suppression drug called Anti-thymocyte globulin (ATG). Unlike the CSA that they started yesterday and Tucker will take for a long time, this one is given every 12 hours today and tomorrow and then it is done. He had a fever of 102.8 at the highest, shook with the chills until I thought his teeth were going to break, and had hypertension which bottomed out when they treated it and made him dizzy. Throughout all of the new fun he continued to be nauseated and vomited more times today than he has before. It would be nice if they made an IV form of tylenol because it is the one thing that can help the side effects of the ATG. Tucker tried to take a pill, but it came right back up. The other drug they started today was Methylprednisone. This is a steroid that is given day -2 and -1 and then again day +5 to +15. Bless Tuckers heart he just lays there with this pathetic look on his face, his puke pan close at hand, and says "I don't feel so good". He is very calm and doesn't do his pacing routine. I know many of you have asked us prior to coming here how Tucker is doing with all of this and we said, "he's fine, he doesn't understand the concept of your really sick because he doesn't feel sick". Well, guess what, he does now. He received lots of mail today including a big envelope of cards from his class at Lewis and Clark and one from North Fork Baptist Church in Virginia. He loves getting mail and all of the cards and letters really make him happy. Thank you for sending them. We had two "connections" happen today. Our friends, the Massies, from Grand Forks have admitted their son on the fifth floor at the hospital for his cystic fibrosis. We know them from hockey and church. Jeff was one of Tuckers very first hockey coaches. I had dinner at the RMH with Sheila. It was good to see a familiar face. Michaels status is sort of fragile right now so we lift him up in prayer. We were also assigned our care partner volunteer today. This is someone who is assigned to us for whatever we may need during our stay here. She is a very nice woman who said, "just consider me your new girlfriend here in Minneapolis." The dejavue part of that is she and her husband lived in Havre (my home town) in the mid to late 70's and opened the Little Big Man Pizza there. Was she ment to cross our path or what. It will be nice to have her available, especially when Rod starts traveling back and forth a week at a time. He will be heading to Grand Forks on Saturday. I think Allyson is very excited to see him.

Monday, February 17, 2003 5:46 PM CST

Day -3. Can you believe we are three days from the big day! It can't get here soon enough as far as we are concerned. We will still continue to be on the "downhill slide" for about a week post transplant, but barring any infections or other nasty setbacks we should be all up hill from there. Tucker got to leave his room today - hooray. It was just a wheelchair ride over to the clinic, which is all connected by tunnels, to have a repeat pulmonary function test. But, it was nice for him to get out of the "cubicle" for the first time in a week. We went tooling down the halls with his mask on and puke bucket and urinal close at hand. Happy to report neither of the "accessories" had to be called into action while we were gone. The nausea continues to hang around - yuck. When we are done with the peeing every two hours, Wednesday at noon but who's keeping track, he can have more of the anti-nausea medication and sleep through the worst of it. It really knocks him on his fanny so they aren't giving him the full amount right now. A new drug was started today. It is called Neoral Cyclosporine (CSA). It is an immunosuppression drug that is used in BMT patients to prevent rejection and graft versus host disease. He will take it two times a day for the next nine months. They also started giving him all of his medications IV today because it was just making the nausea worse taking them by mouth. He had been taking about fourteen different pills by mouth in the morning and about twelve at night so it is good they have switched. We got a pretty cool pin with a handout from the Childrens Cancer Research Fund today. They bring us all of the cancer stuff because that is what 99.9% of the patients are here for. The pin has their symbol of hope on it and even though it is for the cancer kids it is so cool. It is a butterfly and it represents the changes a child goes through while undergoing BMT. From the cocoon of treatment and isolation, they emerge beautiful and ready to take flight. Pretty neat analogy huh. It is a great way of looking at the dark days of our journey that we are in now and the wonderful newness we have to look forward to at the end.

Sunday, February 16, 2003 6:48 PM CST

Day -4. Tucker continues to feel really rough. He has completely lost his appetite if that gives you any clue how rotten he feels. They will be starting him on IV nutrition in the morning as is oral intake has gone down to all but nothing. He has been getting plenty of fluids, but the IV nutrition (TPN) will provide not only fluid and electrolytes, but protein and other forms of nutrition. Not only is he nauseated, but his mouth is starting to break down too. We are diligent about doing mouth cares, but I'm sure it's pretty uncomfortable. They are still making him pee at least every two hours and giving him Lasix if his output is not what it should be. They are weighing him and drawing labs two times a day and so far everything is looking fine with regard to that. I could be concerning considering how much he is putting out. I am glad it is my night to settle in at the RMH for a full nights sleep. I am exhausted after last night. It reminded me of when the kids were babies and they needed to be fed during the night. Thank goodness Rod is here for this part and we can exchange nights because I think this routine is going to wear us both down rather quickly. The chemo will be completely done on Tuesday and then we go 24 more hours beyond that with this bladder flushing routine. I was very lonely and homesick today, but as I made my way back over to the RMH I looked up at that big, beautiful full moon and realized that even as far apart as we all are, we still look up at the same moon and somehow you all felt closer. I am sure my co-workers on OB are feeling the impact of that moon while I'm sitting around on my duff watching soaps and eating bon bons - ha. I almost forgot to remind you, check out the photo album, there are new pictures. Pretty handsome lad if I do so so myself. And so, as one of our favorite childrens book says - Goodnight Moon.

Saturday, February 15, 2003 6:27 PM CST

Day -5. The new drug cytoxan was started today and with it came many new things. One of the major side effects of this drug is that it can destroy the lining of the bladder. In order to help prevent this they are doing a combination of things. They have a new drug running continuously called Mezna. This helps protect the lining. They have increased the IV fluids to 250cc/hour, and Tucker has a certain amount he has to pee every two hours or they give him a diuretic (Lasix) to make that happen. Needless to say it has been a very busy day with regard to the bathroom. It has not, however, been a busy enough day with regard to the bathroom and the other function. He has not had a BM for about a week and even though they have given him something everyday for the last two days he hasn't had any success. His tummy is so round and hard you could bounce a quarter off of it. He has been really nauseated today and his nurse, Rich, said it is hard to tell if it is from the chemo of just the really full tummy. He has been getting some extra medication for the nausea (Phergran) which seems to help a bit, but it has also made him really sleepy. When he is not up to the bathroom he has spent much of the day in bed sleeping. I guess this is just a foretaste of what lies ahead for us, but things had been going so great that it has been hard to watch him have such a rough day. He has still managed to make us laugh a couple of times though so we are thankful for that. I read a quote today that I thought was pretty cool and I will leave you with it "The soul would have no rainbow had the eyes no tears." Author Unknown

Friday, February 14, 2003 5:30 PM CST

Day -6. Happy Valentines Day!! We don't have much new to report today. Everything is much the same as it has been the past couple of days. This is our last day of the first chemo drug. I was reading my old journal entries and realized that I had a brain infarct when I told you what the drug was called - I said Baclofen, that is a drug I am actually familiar with - when it is in fact called Busulfan. Anyway, the last does of that is tonight at 10:00 pm and then on to a drug called Cytoxan. We have so far survived the Busulfan with no seizure activity - yeah! To that end, we would like to take this opportunity to wish you all a very happy valentines day and to tell you that one this day when we are to give special thought to those we love and hold dear we are doing just that for all of you. You are each special to us and we would not be able to be as strong through all of this as we have been without the love and support you continue to give us. Consider yourselves hugged.

Thursday, February 13, 2003 6:18 PM CST

Day -7. Again, a pretty ordinary day save for the fact that Tucker continues to get some big gun chemo therapy that runs for two hours every six hours. He continues to be himself and has charmed everyone who works with him. He still has quite the attitude with mom and dad now and then, but I guess we will still keep him. Rod said the other day he reminds him of the one great shot in a round of golf that keeps you coming out to the course for more - ha. Today we wrote valentine cards for the rest of the children on the unit and we will pass them out tomorrow. Tucker is not allowed to leave his room so mom or dad will have to play cupid. He was surprised to receive a wonderful, cuddly, teddy bear and a balloon from his Grand Forks Blues hockey team of last year - what a neat surprise. He talks about playing hockey all the time, hopefully again next year. Our new friend, Chase, had his transplant today and all is well with both he and his brother. I told his mom today that they would all be receiving some extra prayers from this huge chain. We had the priveledge, and pleasure, of meeting Dr. Charles Peters today. He prefers to be called Dr. Charlie. He is a very personable fellow. He really didn't have too much new information to give us, but was really able to confirm some of the things we have already learned. He is very positive about this procedure for Tucker. When we talked about how we felt they were very reluctant to accept him as a patient when we were here in December he concurred with that. He went on to say that even though they had to give it some very careful consideration they would not have taken him if they felt he was too far advanced with his disease and they felt this would be more harm to him than good. I guess that is good. He also said that he does not have the results from this weeks MRI. He works very closely with a radiologist named Dr. Loes who is away right now, but they will address it as a priority when he returns. Probably the most encouraging bit of news he shared is that even though frontal disease in so rare he would rather deal with it "hands down" than posterior disease. Go figure. I guess we have to capitalize on the little things, and as I have said all along, find the positives so that we aren't overwhelmed with the negatives. God is still listening and prayers are being answered slowly, but surely, and Phillipians 4:13 reminds us each day that "I can do everything through him who gives me strength."

Wednesday, February 12, 2003 7:20 PM CST

Day -8. Tucker has once again had a really good day. He has kept his sense of humor and we have had some laughs. Still no nausea, or fever, and most of all no seizure activity and we are nearly 48 hours into chemo. Everyone assures us this honeymoon phase will indeed come to an end, but for now we are counting each passing day with no wicked side effects as a blessing. We finally had the opportunity to meet another family of a boy with ALD. It was quite by accident while I was putting on lotion at the nurses station last night - my hands are raw from all of the scrubbing. Another patients dad was out there and he asked me how it was going and how far into treatment we were. Then he asked what my son or daughter had. I told him it was our son and he had a rare disease that he probably had not heard of called Adrenoleukodystrophy. He looked at me in disbelief, smiled, and said that's what my son has. Their story is far different from ours in that the mom has two uncles with the adult form of the disease and she had amniocentesis with each of her pregnancies - they have a 7 year old son who is fine - and they have known this boy, who is now 4 has carried the gene since before he was born. They have had serial MRI's every six months since he was 1, and the real kicker is that his MRI that first showed changes in his brain, he has posterior disease, was November 11, 2002. The very same day as Tuckers!. Even though they have a far different story than ours we feel very lucky to have crossed paths with them. You see, since they have had the benefit of being able to prepare for this for the last four years they have been to several leukodystrophy conventions and have met several of the medical experts in the field. They know Dr. Mosher - the big guy at Johns-Hopkins; Augusto - Lorenzo's dad (of the Lorenzo's oil fame); Dr. Charles Peters - the big gun here; and the Dr. that we contacted at Duke. They have worked very hard on putting their medical team in place in anticipation of this and have come to the same place as we are. It really helped confirm to us that we are in the right place. They will be a wonderful resource for us. Their son, whose name in Chandler, will get his transplant tomorrow. Their 7 year old, whose name is Chase, is a 6 of 6 match and will be his donor. Please say an extra prayer for them. One week from tomorrow will be Tuckers big day!

Tueday, February 11, 2003 6:31 PM CST

It is day -9, that is how they countdown to transplant day with it being day 0. Chemo therapy started at 4:00a.m., yes, six hours earlier than I told you it would. As the mom, I was of course a bit put out that I was not there to witness the event. So far, so good. They keep an anti-nausea drug (Zofran) running continuously and it has really done the trick today. He has the appetite of a horse, as usual. He was very sleepy and pretty quiet all morning, in fact he even took a mid-morning nap. That is something he hasn't done since he was about two. I'm not sure if he was already feeling a little punk from the chemo, or if he was just catching up from his big day yesterday and his first night of every two hours of interruption, you know how those night sift nurses can be - ha. Rod could have used a mid-morning nap also so I am thinking it is the later. Things spunked up a bit this afternoon, but still not quite his pacing, tap dancing self. My turn for the night of fun tonight and Rod has headed to RMH for some rest. We have had several furniture rearrangings today and are trying to make the most out of our small space and still be comfortable. The thoughts of 30-40 days in this small area is a little dismal, but we will survive. One of the possible side effect of the chemo drug that is running now is seizure activity. The staff talk about it like it is not a big deal, but it scares me. Tucker is getting an anti seizure medication (Dilantin) to help prevent that, so we are keeping our fingers crossed. Rumor has it the dirt is blowing in Grand Forks, we have new snow again today. It is a winter wonderland here. :)

Monday, February 10, 2003 8:22 PM CST

Many of you have commented in the guest book about heros and let me tell you, today Tucker really was a brave hero. We got to the hospital at 9:00 as scheduled and he went to the OR around 11:15. We didn't see him again until 3:30. During the time he was in the operating room each Dr. came out to talk to us after they were done with their part of the procedure. Everything went great and the central line is being used to give IV fluids tonight. The only report we did not hear about, and the one we were the most anxious to hear about, was the MRI. I'm sure we will get an update on that tomorrow. During that whole process Tucker never complained, okay maybe once or twice about missing his breakfast, but he did just what he was told and we were so proud of him. He really showed some sense of understanding what was going on and told Rod he was scared and "this isn't fair". As lame as this may sound we were glad to hear him say things like that. We have been so concerned that he just doesn't get the big picture, but I guess maybe he does. Rod was chosen, by the flip of a coin, to be the one to spend the first night in the hospital so they are all tucked in over there and I am back at the RMH. Rod and I will tag out in the morning in time for him to come back over to shower and be back at the hospital for the first chemo run at 10:00. Tomorrow begins a chemo drug called Baclofen which will be given every six hours for the next few days when we switch to the next drug. Dr. Ramsay told us that the drugs they give to help with the nausea and vomiting have come a long way from what they used to be and he will getting those along with the chemo so hopefully he won't be too uncomfortable. One big leg of the journey over without a hitch - many, many more to come.

Sunday, February 9, 2003 7:52 PM CST

Tucker has his "buzz" cut and looks like he is ready for the summer at Elks pool. My, how we wish it were that simple. Tomorrow is going to be a big day for us all. It is truly the start of what we have been waiting for since November. We check into the hospital and 9:00am and surgery is scheduled for 11:00. All of us are a bit anxious, but we trust that God will guide us just as he has these past few months. Sometimes we break the days down into minutes and even seconds, but we have made it this far and we shall surely finish this race. Please keep the prayer chains going as we head into the bumpy part of the journey, we need them now more than ever. Don't forget to check out the photo album, it has been updated with some new pictures. The next time you hear from us it will be from the hospital, so until then............

Saturday, February 8, 2003 9:45 PM CST

It has been a very relaxing day. We didn't have to get up to any alarms and did not have a time schedule. It was nice. Spent most of the day at the Science Museum of Minnesota. Pretty cool place. It will be a fun place to share with Allyson when she has a chance to come visit. They have a neat dinosaur exhibit. Rod and I were sad that Tucker does not have the interest in them that he used to because he would have been in heaven a few years ago. Tucker was pretty tired when we finished there so we headed home to hang out at the RMH. Rod and I played some Rummy, which by the way I won, and listened to the Sioux hockey game, which by the way they did not win - ugh! We are a little leary that Tucker may be catching a cold, not what we need right now, or any time soon for that matter, but we also think he may just have a cough now and then because of all of the new medicine the pulmonologist put him on to get his lungs cleared up. Who knows. Poor guy, he can hardly pass gas without one of us over analyzing it! Tommorrow it's off to the Mall of America for one last day of "freedom". Tucker is going to get a buzz cut so it's not such a big deal when he starts to lose his hair. He wears it that way all summer so he is looking forward to it.

Friday, February 7, 2003 6:35 PM CST

Our week of non-stop clinic appointments has finally come to an end, and what a week it has been. Today we toured the BMT unit at the hospital and got to see what the rooms up there look like. Tucker has not been assigned a room number yet, but we will have one on Monday. He seemed okay with all of that and had been looking forward to seeing the unit. Following the tour - which was given by our social worker - we had our "exit interview" with Dr. Ramsay. No real surprises, mostly things that had all been addressed throughout the week. We signed all of the permits for everything to start and once again talked about the fact that we really have no alternative even though the list of risks is very very long. Tucker will be admitted at 9:00 am on Monday morning and go right to surgery. While under anesthesia he will have his central line place, repeat the MRI, have a broncoscopy, and have a lumbar puncture (spinal tap). After recovery in the PACU he will be admitted to the BMT unit and that will be "home" for about the next 40 days. Chemo therapy begins on Tuesday. We are looking forward to a quiet next couple of days with no appointments and just being together - minus Allyson of course and she will certainly be missed!! Thanks to all of you who have been following the "journey" through this site. We look forward to checking it several times throughout the day to see how many times it has been visited and read the new enteries in the guest book. Just as this provides a way for you to feel connected to us, we also feel connected to you. The love and support that we are receiving from each of you helps to lessen our load as we travel down this very uncertain path. You are all special to us!

Thursday, February 6, 2003 1:22 PM CST

Each day as we plow our way through the bazillions of appointments that we have we are faced with more challenging news. Todays appointments included an ophthamology work up. If you remember learning about ALD, most boys present with posterior disease and one of the first things that happens to them is they go blind. Though Tuckers disease is almost primarily frontal he does have some scatterings of degeneration throughout other parts of his brain so they wanted this workup - again as a baseline. The Dr. was very personable and we learned that right now everything is great, however he did tell us that one of the side effects of BMT in boys with ALD is changes in their vision. They don't have alot of statistics, and are gathering them retrospectively, but it is a possibility that the BMT itself could cause blindness. He feels that because Tucker has frontal disease it is less likely, but a concern non the less. If this is to occur it will be within the first few weeks following transplant. One more thing to worry about, but we still have to forge on and believe that this whole thing is in God's hands, not ours. The Dr. concurred that even though the list of risks is mounting daily the alternative of going home having done nothing presents an even more dismal outcome. We also had the consult for Tuckers central line placement today. I'm feeling very lucky to have had my experience as a nurse on the Med/Surg unit and to have, at one point in my career, been chemo certified. Neither one of us can imagine being presented with all of this information if you weren't somewhat educated - ugh!
Tucker has had a much better day and we are celebrating his successes with videos and pizza at the RMH tonight. Those of you who know Mr. Pizza can understand what a wonderful treat this will be for him!

Wednesday, February 5, 2003 4:56 PM CST

What an incredibly long day this has been. We have just returned to the RMH after leaving for our first appointment at 9:30. We gobbled down some lunch in about 15 minutes between appoinments and other than that it has been non stop. We started the day meeting with an RN named Pat Fiedler. She lead us through the steps beginning next monday when Tucker is admitted to the hospital and talked alot about the different drugs that will be used. She also explained more about why he will not need radation - he is receiving a chemo drug that will do the same thing. We are still considering this a good thing. She told us that Tucker will be on up to 20 different medications with up to 40 doses/day post transplant - WOW. The other thing that we found out today that is different from previous information is that his day of transplant will be on the 20th of February not the 17th as they originally told us. This is not because of anything in particular, I think it was just mis-information to begin with. We also learned somethings about where the cord blood came from. It is from a baby girl somewhere in the Eastern part of the United States ( it came from the big bank in New York). Tuckers new blood type post transplant will be O positive. He is currently A positive which is mine, quite by accident the new type is the same as Rods, go figure. After the meeting with Pat we went to the research center to enter Tucker there so they can follow different systems of his body post transplant. By drawing more blood and doing a bone scan they will have a baseline to measure from. He also had some pulmonary function testing done and we met with a pediatric pulmonologist named Dr. Reggelman who we both really liked. He was somewhat concerned about Tuckers asthma and did some extensive testing. The lining of the lungs is like the lining in your mouth and can be very damaged with chemo so they want him in tip top shape going into this. Another bit of good news is that post tranplant we probably won't deal with asthma any more - we have to keep finding the positives! So, needless to say after the rounds today and the barage of new information we are mentally exhausted. Tucker has been very challenging today - again, I think it is the way he presents when he too is overwhelmed. Early to bed tonight.

Tueday, February 4, 2003 7:49 PM CST

Today was yet another busy day. We didn't have to start quite so early today as our first appointment was not until 11:00 so we were able to get some light housekeeping done before we left for the clinic. We met Dr. Ramsay today at the BMT clinic she is the head of the pediatric department for bone marrow transplant. She was very kind and we all liked her very much. One of the most important pieces of information that she shared with us is that because Tucker is receiving cord blood and because of the type of disease he has he will NOT be receiving radiation therapy as part of his pre-transplant preparation - hooray!!! One less thing to be concerned about while it is happening and even more so, one less thing to worry about the secondary side effects of in the years to come. We will learn more about why this is during our exit interview with her on Friday prior to admission, but for now we are just considering this an unexpected blessing. Following that appointment Rod and Tucker went back to the RMD house and vegged out while I attended a caregivers orientation class. It was held by the social workers and provided some good information. It seems that there are three other families here right now, all in varied stages of the treatment, with boys who have ALD so we will be anxious to be able to connect with them and have a support system there. This disease is so rare that often times we feel like we are out there all alone. Tucker remains his happy go lucky self, though his demeanor changes somewhat when we go to the clinic. Even though he is not very good at verbally expressing his feelings I think this is his way of expressing his fears and letting us know he understands more about this whole thing than we sometimes give hime credit for.

Monday, February 3, 2003 8:06 PM CST

It's been a long day. We started bright and early today in the BMT (Bone marrow transplant) clinic where Tucker was weighed, measured, and had about 55 gallons of blood drawn - okay maybe not quite that much! He was brave as usual thanks to the wonder of EMLA cream. We joked the whole time we were at Disney World that Tucker was not very brave and adventerous but we have since learned that only applies to airplanes and theme park rides. Needles are no sweat! I'm sure he will have many more moments through the journey when brave and adventerous will come in handy. After the BMT clinic he had a chest xray and EKG done. Everything there was fine. Just something they have to check before they proceed with the transplant. When they are dealing with patients who have cancer and other diseases that are treated with transplant often time they have other systemic problems - that is not usually the case with ALD, but the workup procedure is the same none the less. After lunch we saw Dr. Lockman. He is the neurologist we saw here in December and we really like him. After a neuro evaluation he concluded that Tuckers status has not significantly changed since we were here - yeah, good news. Tucker and Rod then headed back to RMD house for some Ninetendo and movies while I attended an orientation class on BMT. Go figure, it was taught by an RN who grew up in Grand Forks and his mother has been following Tuckers story in the Herald and he was waiting to meet us. Small world eh. After that it was off to the Mall of America for some walking and dinner at the Rain Forest Cafe. We are trying to do a few fun things this week before hospital admission on Monday. Evening prayers have been said and Tucker is in dream land so - until tomorrow.

Sunday, February 2, 2003 9:30 PM CST

Well,we are here in Minneapolis at the RMD (Ronald McDonald House). Our departure from Grand Forks was pretty teary, Allyson is being so very brave about all of this. The 5 hour trip here was pretty uneventful, though we did run into wet, heavy snow about the last forty miles and it continues to snow as I am writing this. We were greeted at the house by a woman named Teresa and given the grand tour. It is very nice with everything we could need during our stay - laundry, kitchen, gym, excersise room, video library, game room, school room - get my drift. It seems like a maze right now, but Teresa assured us that by the end of our stay we could be giving the tour. Meals are served by a service organization each evening at 5:30p.m. if we wish to do that and twice a week there is a shuttle service to shopping if you want to go buy groceries, etc and don't want to drive. We are only about two blocks from the hospital and clinic so we could walk if we want to - and the weather allows - or hospital security runs a shuttle back and forth. I think we will be very comfortable in the weeks and months ahead. We are pretty well unpacked and getting settled, Tucker is sleeping and we are looking forward to tomorrow mornings appointment at 8:00a.m. Both of us agreed it was very surreal to finally be on our way today and actually beginning this part of "Tuckers Journey".

Friday, January 17, 2003 at 1:30PM (CST)

Finally, the news we have been waiting for. Fairview University Medical Center called to say the cord blood they have been testing is indeed a match - yeah!!!! We will traveling to the U of M to begin Tuckers outpatient workup on Monday February 3, 2003.

Click here to go back to the main page.

----End of History----