Thursday, June 3, 2004 6:58 PM EDT

In my last journal entry I forgot to tell you about the "birthday list" tradition at Bishop Hendricken High School. Each month students' names and years of graduation are listed under their birth dates and posted in the cafeteria along with a message from Brother Leto, the school's president, about an individual's specialness. It was heartwarming to see Tom's name (followed by RIP) on the list. Tom had mentioned this list to me once, and in true "guy" fashion, had not made a big deal of it. I'm sure that Tom was smiling in Heaven knowing that he was still considered a "Hawk" and part of the Hendricken family.

Memorial Day Weekend 2004 was a special time for reflection for me. On Friday Paul and I went to St. Ann's Cemetery and placed fresh flowers at Tom's gravesite. Afterward we went to the stonecutter's to make arrangements for a headstone for Aunt Dot's grave and for Paul's mother's date of death to be inscribed on her headstone. (Aunt Dot was Paul's godmother and maternal aunt.) While we were there, we inquired about the status of Tom's headstone. We learned that it had been delivered earlier that afternoon and we were invited to view it. Although the stone was still in its crate, Tom's name and his date of birth were clearly visible through the crate's wooden slats. What an emotional moment! I cannot begin to describe how I felt. Later Paul and I tried to put into words and share how we felt at that moment. We agreed that it was difficult to find the right words to describe this particular event.

In spite of a sore throat and a slight cold, I did go to Tom's gravesite every day over the holiday weekend. This was something that I needed to do. Many people had chosen to visit their loved ones on this weekend and the floral displays were quite colorful. Driving through the cemetery, I couldn't help but notice those visitors whose loss was recent. As I passed by, I could see the recently disturbed soil at the gravesite and the faces of those for whom time had just begun its healing process. This scenario certainly gave me some "food for reflection".

Please remember Marshall, his sister Amelia, and their family in your prayers.

Ann

Tuesday, May 25, 2004 10:47 PM EDT

In my last journal entry on May 13 I left out two things that Tom told me made his 16th birthday very special. The first "special event" happened when his physiology class at Bishop Hendricken High School went to the IMAX Theater at Providence Place Mall. Ms. Falcon, Tom's teacher, had arranged for a field trip so that her class could see "The Body Human". Tom thought of this trip as a special birthday present since he had to be in school on his birthday. The second "special event" happened when I surprised him by coloring my hair. You see, Tom would always tell that the gray in my hair made me look soooo old and why didn't I color it! Well, I would tell Tom that my gray hairs were my badge of honor for living this long and that I was sure that he was responsible for at least one of them. I would tell him that these were the reasons I liked my gray hair and didn't want to color it. We would then laugh and laugh. While he was out for supper that night, I colored my hair and then waited for him to come home. Of course, Tom didn't notice my hair right away. When he finally did notice the change, Tom gave me a hug and simply said, "Thanks, Mom."

On Friday night Paul and I went to a Spring Pops Concert at Bishop Hendricken High School. The evening's program was wonderful. Tom would have enjoyed the music so very much. He loved big band and swing music as well jazz, classical, showtunes, and rock and roll. Tom would have loved Seabhac, the newly formed Celtic ensemble. When the Young Men's Chorus (new name, same great people) came on stage, I caught myself looking for Tom. Although it must have been my imagination, it seemed as if there was a space left open where Tom usually stood. In any event, certain songs brought a smile to my lips and tears to my eyes. "Deo Dicamus Gracias" and "When You Believe" brought back wonderful memories of Tom and his days at Bishop Hendricken.

Tonight we attended the Arts Honors Convocation at Bishop Hendricken High School. It was great to see so many of Tom's friends receive awards. The Thomas Konikowski Memorial Scholarship was awarded tonight to E. Justin Simone, a graduating senior and talented musician. It was such an honor that we, the members of Tom's family, were called up to the stage to present the scholarship award. Afterward, we spoke with some of Tom's friends and viewed the beautiful art exhibit in the cafeteria. All in all, it was a memorable evening and I am happy that we were able to attend.

Please remember in your thoughts and prayers all those who are facing life's many challenges. In particular, pray for Marshall and his family. They are going through some very difficult and worrisome times right now.

Ann

Thursday, May 13, 2004 7:45 PM EDT

Today would have been Tom's 17th birthday. Tom often asked me what May 13, 1987 was like. I would tell Tom that it was sunny and bright and that the temperature was in the high 50's to low 60's' that day. Tom enjoyed hearing my story about going into labor at about the time that the Mapleville, RI postmaster asked me when I was due. When I told him that I was three days overdue, he told me that he hoped I wouldn't have my baby in his post office. Little did he know what was happening to me at the time! Tom understood just how happy his arrival had made his father and me as well as both sides of our families.

This morning a Mass was offered for Tom at St. Dominic's Chapel at Providence College. This Mass on Tom's birthday gave those of us who attended an opportunity to reflect on Tom's life and how he had touched our lives and still continues to do so. It seemed so very appropriate to be in the Chapel on Tom's birthday.

Paul and I stopped at St. Ann's Cemetery on our way to Mass this morning. We placed a fresh bouquet of flowers on Tom's grave and were each lost in our own thoughts and prayers for a while. The silence at the gravesite was broken only by the sound of a lawn mower in the distance. Such an everyday occurrence served as a reminder that our place is in the present.

Please pray for all those families who are facing life's challenges at this time.

Ann

Monday, May 10, 2004 7:47 PM EDT

I hope that all of you checking in had a happy Mother's Day. Yesterday was my first Mother's Day without my beloved Thomas. Since his death on February 17, I have experienced a series of "firsts" -- my birthday, Easter, Mother's Day --and I know that there are more to come. These are not the easiest milestones to mark, but they become a bit more bearable with prayer and memories of Tom.

I went to Mass yesterday at St. Francis of Assisi Church here in Warwick. During his sermon, Father spoke of the importance of saying, "I love you," to our mothers and to our children. This really hit home with me. You see, Tom and I had a nightly ritual of hugging and saying good night to each other followed by me saying, "I love you, Tom" and Tom saying, "I love you, Mom." As long as we were sleeping under the same roof and no matter how we were feeling, this ritual never varied.

Whenever Tom was hospitalized and/or about to undergo surgery or a procedure, we also performed our "I love you" ritual. Tom needed to be intubated before he went down for his lung biopsy on February 6 and this procedure was to be done in his room. When the anesthesia team arrived, I knew that I had to leave the room so that they could take care of Tom. Tom and I hugged each other tightly and then I said, "I love you, Tom," and Tom said, "I love you, Mom." Although this memory is somewhat painful, I do find comfort in knowing that these were the last words my beautiful son spoke to me.

Paul and I went to St. Ann's Cemetery yesterday afternoon. There were so many people visiting their deceased loved ones. It seemed as though nearly everyone had come bearing flowers and the gravesites were so very colorful. We placed a vase with red roses and one pink carnation on Tom's grave. The roses were being sold after Mass by the Respect Life Committee and the carnation was given to me in celebration of Mother's Day at the restaurant where we had breakfast that morning. I know that Tom would have been amused by this splash of femininity in an otherwise "masculine" bouquet. I can hear him saying, "Aw, Mom...."

Please remember the many families out there who are facing challenges and obstacles in their lives. Your prayers can help them more than you will ever know.

Ann

Friday, May 7, 2004 1:45 PM EDT

I'm writing this update a little earlier in the day than usual. I feel as though I must seize this moment right now. You see, I'm remembering Thomas so very clearly at this moment in time....

It was the Friday before Mother's Day 1993 and Thomas was five years old (almost six) and in Kindergarten at St. Pius V School in Providence. After work that day I had stopped at my parents' house to have supper with Tom and my family. Tom's father picked him up from day care at school and was dropping him off around suppertime. I wish you could have seen Tom's face when he got out of Dad's car. He was grinning from ear to ear and proud as a peacock because he had a very special Mother's Day gift for me that just couldn't wait.

Miss Sadowski, Tom's kindergarten teacher, had planned a special project for her students. Tom's class had baked miniature spice cakes for their mothers, wrapped them in plastic wrap, and decorated them with ribbons. A smiling Tom ran into Grandma's house to present me with this very special gift. Of course, after much genuine and heartfelt praise, we just had to sample Tom's first culinary effort right then and there. It was absolutely delicious!

When Tom was on the BMT Unit at Fairview-University Medical Center in Minneapolis, he often asked me to tell him stories about his childhood. I would happily oblige and Tom and I loved this time together. This particular story is one that I told him many times over the years. Tom never seemed to tire of it. Each time I repeated this story, I told Tom about how proud I was of him that day and about how tears had filled my eyes at the thought that my little boy was growing up. This always made Tom smile and seemed to comfort him when things were difficult.

I can't tell you how important these times were to us. Right now I'm smiling through my tears remembering my son. He was truly special and is missed so very, very much. These memories are so very important to me and I like to think that Tom is sharing them with me from Heaven.

Please create your own memories with your children and share them together often. It is so very important.

Ann

Sunday, May 2, 2004 9:26 PM EDT

Paul and I left Florida on Wednesday afternoon and returned to Rhode Island on Friday evening. It was very interesting to see the landscape change from green and lush in Florida and Georgia to varying shades of "springtime" green from South Carolina through New Jersey and New York. Once we reached New England, how things changed! The forsythia and ornamental pear trees were in bloom, but the other trees and shrubs were just budding. Since it has been fairly warm (70's) over the last two days, other trees have now come into bloom or have started to "leaf out".

As I look out on this beautiful spring landscape, I can't help but remember my friend Bette. She would say that when she saw the forsythia in bloom, she knew that she had made it through another winter. Bette died in April 1996 before the forsythia had bloomed; however, they were in full bloom at the time of her memorial service and a large arrangement of them adorned the sanctuary.

After Tom was diagnosed with FA in 1998, I was able to really relate to Bette's statement about the forsythia. Since I often was a little early in picking up Tom from school, I had the chance to sit and watch the trees around me come into bloom while waiting for him to be dismissed. I couldn't help but remember Bette's words and think that now that the forsythia and trees were in bloom, WE had made it through another winter. This spring's beautiful show of color and fragance is bittersweet for me knowing that only I have made it through another winter.

Paul and I went to St. Ann's Cemetery today to visit Tom's gravesite. A steady rain began to fall and our tears mixed with the raindrops. It was very peaceful there and we saw many other people visiting the graves of their loved ones, too. We found that we were able to find comfort in our visit this afternoon. We plan to return this week and on Mother's Day and on Tom's birthday (May 13).

Please remember in your prayers the many families who are facing physical, mental, and emotional challenges.

Thank you for checking in on us.

Ann

Monday, April 26, 2004 9:33 AM EDT

It's another beautiful day here in Florida. Paul and I are at the library where I am using a computer to update Tom's site. We have a meeting today with our builder and should be able to finalize our construction details. Then we'll clean the condo and pack our suitcases. It's funny, but I never really unpacked my "stuff" so my packing shouldn't be overwhelming.

I am finding that, with the passage of time, things get easier in some ways and harder in others. Life can and does go on after the loss of a loved one. My role in life has changed and I must learn to make the most of it as it is in the present and look forward to the future. The important thing for me is to keep Tom's memory alive in my heart. In this way he will always be with me.

I keep remembering how Tom and I enjoyed springtime in New England and how beautiful the trees looked in bloom. The lawn directly across the street has flowering trees and shrubs and when in bloom the view is beautiful. We would look out our window while having one of our candlelight suppers at the kitchen table. It helped to make our time together even more beautiful.

Ann

Friday, April 23, 2004 9:36 AM EDT

Paul and I will be staying and enjoying Florida's warmth and sunshine just a little longer. We signed a contract with our builder yesterday and Paul is meeting with a mortgage originator at this time. We have a meeting with the builder's office manager on Monday afternoon to finalize the house plans; select paint colors, appliances, plumbing fixtures; ask questions, etc. It is certainly an exciting process! I'm almost afraid to speculate on when we will start on homeward journey. Perhaps Tuesday or Wednesday of next week looks good now.

When we get home, I certainly have a lot to do. I have put off sending many thank you cards until we get back home. I just felt that I needed some time away from the "death and dying issue" for a little while. As it turned out, we continued to receive cards and spiritual bouquets at home and these were forwarded to us. There are so many wonderful people out there who continue to remember Tom and us.

Personally, I plan to return to school. This was something that I had decided on before we left for transplant in Minnesota. Tom thought that it would be cool for us to be attending college together, but hopefully not at the same school. He told me, "A young man has got to have his own life, Mom." I assured Tom that my plans were to earn a degree in nursing and that course of study was not offered at Johnaon & Wales University where he wanted to study culinary arts. So now, I need to find out just what my bachelor's degree in psychology is worth in terms of what requirements I have already met. This should prove to be interesting. I'll keep you informed.

Please remember all the families out there who are facing physical, emotional, and mental challenges. They need our prayers and support.

Ann

Wednesday, April 21, 2004 1:22 PM EDT

Paul and I are still in Florida working out the details on a home we are building. Our original plans called for us to be home by now, but, as luck would have it, we have been thrown a few curves and must address them now while we are still in Florida. We hope to start our homeward journey this weekend.

Not a day goes that I do not think of Tom and wish he were here with us. I see so many things that remind of him. My thoughts sometimes drift off to where we would be now and what we would be doing. Although this does not change the fact that Tom is gone, it does help me face this profound change in my life with a little more optimism.

I know that there are some of you out there who are wondering just what in the world it is I am doing by continuing to update this journal. Personally, I have found comfort and reassurance in the journals of others who have traveled this road. I have learned that it is very normal to be reminded of Tom in many ways and that's it's OK to remember him with love often. Tears might come to you from seemingly out of nowhere and it's OK to cry. Afterward, you just need to dry your eyes and move forward because that is what Tom would have wanted. I've also learned that my role in life has changed considerably and that it will take me a while to readjust. Perhaps someone else might be able to learn something from our family's experience.

Please remember the many families out there who are facing physical, mental, and emotional challenges in their lives. They need our prayers every day.

Ann

Friday, April 16, 2004 1:15 PM CDT

Tomorrow marks the two-month anniversary of Tom's death. It has not been an easy time for those of us who loved him. We are all trying to return to life and remember Tom with smiles and not tears. This is what Tom wanted us to do.

Over the past few days I keep hearing a familiar voice in my heart. It's Tom saying, "Heeeeyyyyyy, Mommy!" He always said "Hey, Mommy!" this way whenever he wanted to do something somewhat special or different especially on a schoolnight. It was often followed by "How about a pizza?" or "Can I go to Galaxy Games...just for a little while?" or "Let's go to the mall." I smile as I remember his voice and wipe away a tear at his loss.

I wish you all peace.

Ann

Monday, April 12, 2004 4:07 PM EDT

Easter Sunday was a beautiful yet somewhat difficult day for Paul and me. At church, the hymn "Jesus Christ Is Risen Today" brought tears to my eyes. I remembered one Easter Sunday morning at Mass in Our Lady of Good Help Church in Mapleville when Tom jumped up and down on the kneeler in time to this hymn. I think that Tom was all of four or five years old then. It seems like yesterday and yet also like it was an eternity ago. When "Amazing Grace" was sung, Paul and I remembered the last time we had heard this hymn. Both of us were reminded of the honor guard and the lone bagpiper playing this hymn at Tom's funeral.

After church Paul and I drove up to Sarasota and visited the Marie Selby Botanical Gardens. We have a family membership there and it is a beautiful place to visit. When we arrived, a concert was just starting. I'm sorry to say that I never did catch the performer's name, but she was wonderful. She is a singer and harpist from Ireland who delighted her audience with songs from her homeland as well as some more contemporary tunes. I thought that Tom would have enjoyed hearing this concert and being out in the warm sunshine and fresh air.

I am still in the "school groove" so to speak. It is April vacation back home and I find myself thinking of Tom. For so many years, we were plugged into an academic world. Although absences due to his illness and the difficulty of some subjects made it tougher for him, Tom had been an honor student. All of us were and still are very proud of him.

Although our world feels emptier without Tom, it is certainly so much richer because of him. Tom truly brightened our lives with his smiles, his songs, and his antics. He is still so very much loved by so many of us.

I wish you all well. I will try to get to the library again soon to use their computer. Until then, peace.

Ann

Saturday, April 10, 2004 1:17 PM EDT

The Campus Ministry Choir at Bishop Hendricken High School held a concert on Tuesday, April 6 to benefit the Thomas Konikowski Memorial Scholarship Fund. Although Paul and I were unable to attend because we are still in Florida, my sisters told me that it was wonderful. (You can read their description of the event in the guestbook.) Another concert is planned for sometime in May and we plan to be home for it.

Tom certainly did love to sing and he enjoyed all types of music, except for rap music. One day after much pleading and campaigning on his part, I let Tom purchase an Eminem CD. I remember telling him that he might like only one song on this CD (the reason he wanted to buy it) and hate the rest of it. The lyrics and themes presented on this CD were questionable at best, but I felt that Tom, who had a good head on his shoulders, needed to learn one of life's lessons for himself. It didn't take long at all for this CD to find its way to the absolute bottom of the pile. Tom told me that he really didn't like it and wondered why and how it could be so popular.

Today is Holy Saturday and tomorrow is Easter Sunday. I find myself remembering past Easters with Tom and missing him very much. The Easter season is a time to focus on the promise of the Ressurection and that is what I will try to do this spring. Although Tom is no longer with me in body, his spirit is with me forever.

Wishing you all a Happy and Blessed Easter,
Ann

Wednesday, April 7, 2004 2:24 PM EDT

It has been a little over seven weeks since Tom left us to go on his eternal pilgrimage in Heaven. This time has been filled with much emotion and many changes.

Paul and I left Rhode Island in early March and headed to Florida for some warmth and sunshine. We were scheduled to close on a house in Florida at the end of March, but we just could not go through with it. Upon Tom's death, the bank's terms for the mortgage changed and were unacceptable. Another important determining factor in our decision was not only financial but emotional. You see, we were purchasing this particular property with Tom in mind. It would have been ideal for the three of us after Tom's graduation from Bishop Hendricken High School. Now Paul and I found ourselves becoming sadder every time we visited this property. Tom's memory was there without his ever having walked in the door. Since we had no memories of Tom living in this house to comfort us, it was truly an empty shell for us. Happily for us, we are now negotiating with a contractor to build a new home for us in Florida.

In this strange new world without Tom I find myself thinking about the words that one father wrote about the grief he felt upon the loss of his young son. To paraphrase his words, sometimes you feel that this grief is a large dark storm cloud looming over you all day and at other times it is like a cloudburst on an otherwise sunny day. From my own experience I can tell you that this is a very accurate statement.

My computer time is just about over here at the library and so I must go. Thank you for checking in on us.

Ann

Tuesday, March 2, 2004 7:46 PM EST

The past two weeks have been especially difficult for all of us. Tom's passing has left an indescribable void in our lives. It just doesn't seem possible that Tom has gone home to heaven.

Tom's Funeral Mass (Mass of Christian Burial) on Thursday was absolutely beautiful and moving. The Campus Ministry Choir led by Mrs. Gambardella was wonderful. If I closed my eyes, I could picture Tom standing in his place among his choirmates smiling, happy, and singing his heart out.

Father Taillon, Bishop Hendricken High School's chaplain, concelebrated the Mass with Father O'Hara of St. Kevin's and Father Reynolds of St. Mary's, an old family friend. Father Taillon spoke of Tom's faith and trust in God on the pilgrimage he had undertaken. Tom had come full circle, if you will, by ending his pilgrimage at St. Kevin's. (Please see our first journal entry for some background.)

Miguel, Brendan, and Tom, friends from St. Pius V School and Gerry, Tony, and Josh, friends from Bishop Hendricken High School served as Tom's pallbearers. Many of Tom's friends from St. Pius V School came to the wake and attended the Funeral Mass. Tom's friends and fellow Hawks from Bishop Hendricken also paid their respects during Tom's calling hours and at Mass. Several of Tom's teachers from St. Pius V and Bishop Hendricken were able to come to the wake and attend the Mass. As we left St. Kevin's, members of the junior class formed an honor guard and "Amazing Grace", played on the bagpipes by a fellow student, floated on the air.

Since our arrival home, the weather has been unseasonably warm and sunny. I often think of how much Tom loved this type of weather. After a long winter, Tom so looked forward to spring. Tom is often in my thoughts. At certain times of the day, I often think of just what we would have been doing then. I find myself putting these thoughts into two separate locations -- Minnesota and home. As we read the many cards that we have received, Paul and I are comforted and humbled by the love and support of so many friends and family members.

Thank you for checking in on us.

Ann

Tuesday, February 24, 2004 8:35 AM EST

Paul and I arrived home in Rhode Island around 8:00 PM (EST) on Sunday. Our dog, Honey, was happy to see us, but she could pick up on our sadness. Honey sensed that something was very wrong and knew that Tom was not with us.

We left Minnesota later than we had anticipated on Thursday and some bad weather in Wisconsin and Pennsylvania and traffic problems in Connecticut held up our travel progress. Along the way we passed attractions that we had noted as places of interest for Tom, Paul, and I to stop at on our homeward journey this spring. Whenever we stopped for a meal, we couldn't help but notice what menu items Tom would have enjoyed eating. We reminisced about his love of steak, lobster, and ribs and how he had relished eating his way out to Minnesota.

Tom's calling hours will be on Wednesday, February 25 from 5:00 to 8:00 PM at the Juhlin Pearson Funeral Home, 754-756 Broad Street, Providence, RI 02907. If you need directions, please call 401-461-1213.

Tom's Funeral Mass will be celebrated on Thursday, February 26 at 10:00 AM at St. Kevin's Church, 333 Sandy Lane, Warwick, RI 02886. If you need directions to St. Kevin's, please call 401-737-2638.

Interment will take place at St. Ann's Cemetery in Cranston, Rhode Island.

All are invited to a collation at Wethersfield Commons Clubhouse, 1 Williamsburg Drive, Warwick, RI following the interment. This will be an opportunity for us to honor Tom's memory by sharing food, drink, and memories together.

Ann

Thursday, February 19, 2004 9:39 AM CST

I've taken a break from packing and cleaning up our room here. We should be leaving Minneapolis in a few hours -- just before a snowstorm hits. This is the last time that I will pack for the three of us. I'm afraid that I'm not moving awfully fast at this point.

Bear with me while I tell you about what happened this morning. I took Tom's suitcase out of the closet and when I opened it, there were complementary packages of coffee, tea, and non-dairy creamer in the bottom of it. It brought tears to my eyes and fond memories of how Tom ("the little old man" that he was) would take these free items from a hotel room for me. He always tried to take care of me in his own way. I was truly blessed to have enjoyed his company for over 16 years.

Marshall is finally back at RMH and I know that Tom is very happy about that. He wanted to meet Marshall and always asked me how he was doing. He prayed that Marshall would get better and God answered his prayers.

Paul and I learned last night that Cade has now joined his brother Cole and Tom in heaven. Cade was another person on whom Tom was always checking. He had a special place in his heart for little Cade. This has been an especially difficult journey for Chris and Amanda. Please keep them in your prayers.

Please pray for us as we head back to Rhode Island. We are taking our time so that we can reflect on everything that has happened. Paul and I are so very thankful to everyone who has supported us and Tom on this very difficult journey.

Please remember all the patients on 4A and 4B. Many of them are facing some very difficult challenges.

Also remember the staff in your prayers.

Wednesday, February 18, 2004 7:16 PM CST

It was a beautiful sunny day here in Minneapolis with temperatures in the high 30's. I can't help but think how much Tom would have enjoyed a day like today after so many cold winter days.

I spoke with Father Taillon today about some preliiminary details for Tom's funeral Mass. As it stands now, the funeral Mass will be held next week (possibly Thursday) at St. Kevin's Church in Warwick, Rhode Island. This is where we attended Bishop Hendricken's Mass of Remembrance and Tom received a rosary and Anointing of the Sick before we left for Minnesota. It will be as if we have come full circle again.

There will be a wake the night before the funeral at the Juhlin-Pearson Funeral Home on Broad Street in Providence. Mrs. Gambardella and the choir (of which Tom had been a member) will sing in his honor. Burial will take place in St. Ann's Cemetery in Cranston. I will post more specific details after we have arrived home in Rhode Island and taken care of the details.

We are leaving Ronald McDonald House sometime tomorrow and will make the drive home over the next three to four days. I will probably not post again until we get back to Rhode Island. I will post specific details as soon as we have made the necessary arrangements.

Life here in Minneapolis has taken on a rather surreal quality. It is just not the same without Tom. He was the light of my life and the apple of my eye. He was my Sunny/Sonny Boy. When I started calling him my Sunny/Sonny Boy, I couldn't decide whether it should be "sunny" or "sonny" (like the song). I thought, "Why can't it be both?" Tom was and still is the sunshine of my life and my son. This will never change.

I want to thank everyone for their prayers and words of encouragement. Tom did read his guestbook pages and did appreciate hearing from you. I know that he is smiling down on us now and watching over us.

Once again, I ask you to pray for the patients on 4A and 4B and those who care for them.

Ann

Tuesday, February 17, 2004 6:09 PM CST

Day +83

It is with the heaviest of hearts that I give you this sad news. Tom entered into eternal rest today at approximately 12:35 PM (Central Standard Time).

Last night Tom developed a massive cerebral hemmorhage (stroke/CVA). We were called to the hospital and Tom underwent a brain CT scan which showed extensive bleeding. The neurosurgeons were consulted and they came in immediately, but their conclusion was that the damage was indeed extensive and inoperable.

Tom was not in pain and appeared to be resting comfortably. We talked to him, held his hand, prayed each in our own way. The hardest decision to make was when to take him off life support. Even if he had continued to remain on the ventilator, the outcome would have been the same. The type of injury that Tom's brain sustained was so severe that had he lived, he would not have been the same. I know that Tom would not have wanted this.

The hospital chaplain came in and performed the Anointing of the Sick. We spent a little time with Tom and then told the doctors that it was time. Tom died peacefully and with great dignity. He was truly special to all of us.

Tom touched many lives in ways that we will perhaps never know. The doctors and nurses on 4A and 4B were visibly moved by Tom's passing. He was always a gentleman.

Funeral arrangements are incomplete at this time. I will update you as soon as the details are know.

Yesterday I jokingly wrote that the smile Tom gave me might have been a grimace. I do believe that it was truly a smile -- one that I will remember forever.

Tom, my Sonny/Sunny Boy, I will love you forever. I miss you terrbily, but I know that you are still always with me.

Mom/Ann

Please continue to pray for the patients on 4A and 4B. Remember also the doctors and nurses who work so hard to help their patients get well.

Monday, February 16, 2004 7:21 PM CST

Day +82

The past two days have been very restful for Tom. He continues to make a little progress each day although he still has a long way to go.

When Tom opened his eyes this morning and looked at me, I thought he was smiling (or perhaps it was a grimace). In any event, he turned his head toward my voice and his eyes focused on me. Tom's nurse was able to get him to open his eyes, turn his head, and squeeze her hand this morning. We are very thankful for these small improvements.

Tom's ventilator settings are being turned down a little bit every day. The nitric oxide was discontinued and those tanks were taken out of the room this afternoon. His oxygen saturation remains stable and within normal limits. Tom has also started to breathe a little bit on his own while on the ventilator.

Tom started his dialysis session later than usual today. Apparently there are quite of few in-patients and out-patients who are on dialysis at this time. Tom's urine output is increasing daily and hopefully he won't need dialysis much longer.

Dr. Orchard is back on service now. We have come full circle. Dr. Orchard was on service in November when Tom was admitted for his transplant.

Please remember Tom in your prayers as well as the other patients on 4A and 4B.

Ann

Saturday, February 14, 2004 9:50 PM CST

Day +80

The past two days have been stable for Tom. Although he is still seriously ill, the doctors feel that Tom has made some small progress in his condition.

The chest tube was removed at 6:30 AM on Friday and Tom tolerated that procedure very well. He still has quite a bit of drainage from the chest tube site which is being collected in an ostomy bag. This method of collection will allow the nurses to accurately measure and record the amount and type of fluid that is oozing from the site. This morning the doctors decided that it would be best not to suture this opening closed.

One of Tom's blood cultures tested positive and so Tom was started on Vancomycin yesterday. This would explain some, but not all, of the fevers that he has experienced recently.

The doctors have begun to decrease Tom's sedation and to lower the settings on his ventilator. This weaning process will take a little time and cannot be rushed. I look forward to the day that Tom is well enough to be extubated!

Tom is still not producing enough urine on his own to warrant be taken off dialysis. He had another four-hour dialysis session today and did very well. Depending on tomorrow's bloodwork, he may get a day off from dialysis. On Tuesday Tom will probably have a shunt placed for dialysis purposes. The femoral line that is now used for dialysis is only meant to be a temporary line.

Tom began receiving physical therapy (PT) on Friday. The physical therapist did some range of motion with him and will return during the week to work more with Tom. PT will be essential to help Tom regain his strength and flexibility as he recovers.

Please continue to pray for Tom. I know that your prayers and encouragement have helped him so very much. Please remember the patients on 4A and 4B.

Ann

Thursday, February 12, 2004 7:22 PM CST

Day +78

Tom was placed back on nitric oxide during the night and has been doing well on it. The pediatric resident thought that the nitric oxide would be beneficial since Tom was switched to a conventional ventilator yesterday. While on the nitric oxide the amount of oxygen that Tom gets through the vent can be lower thereby reducing the chance of his lungs/tissue being "burned" by too much oxygen.

Foot splints were placed on Tom's feet this afternoon to prevent foot drop. They look like ski boots without the exterior covering. I don't think that Tom would find them very stylish if he were awake.

This morning's chest x-ray looks worse than yesterday's. The doctors don't seem to be quite sure what to make of it. We're adopting a wait-and-see attitude while watching for any infection to develop.

Tom's chest tube is scheduled to taken out tomorrow before dialysis begins. The chest tube is not draining very much fluid and is a potential point of infection. It's best if it comes out now and Tom's left lung can start to heal.

Ann

Wednesday, February 11, 2004 7:51 PM CST

Day +77

It has been snowing more or less steadily all day long -- sometimes very lightly and sometimes more heavily. I must tell Tom that the trees along the Mississippi River near the hospital were filled with large crows. Tom has enjoyed watching the crows that often fill the branches of the trees in the neighboring yards from the living room window of our room at RMH.

Tom once again underwent dialysis today and tolerated the procedure well. Dialysis will probably be repeated tomorrow once the doctors have gotten the lab results from his morning blood draw.

The nitric oxide that Tom was receiving through the oscillator was discontinued this morning. Then Tom was taken off the oscillator and put on a conventional ventilator. He tolerated these changes well. Hopefully, he will be able to remain on the ventilator and not go back on the oscillator. I can't wait for the day when Tom is taken off the vent and is able to breathe on his own.

At this time Tom is still a very sick young man. He has made some tiny steps in the right direction, but no one can predict just how much progress Tom will make. In these situations you must always be prepared for the unexpected.

Please remember Tom in your prayers and also the other patients on 4A and 4B. Remember Marshall, too, who has now been moved to the 5th floor. Great job, Marshall!

Ann

Tuesday, February 10, 2004 8:17 PM CST

Day 76

Tom continues to be in critical but stable condition at this time. He had another dialysis treatment first thing this morning and tolerated that procedure well.

The doctors are planning to take Tom off the oscillator tomorrow and put him back on the ventilator. This is a very, very small step in the right direction. No one knows just how Tom's body will react to this change and so one can only be guardedly optimistic that he will adjust well to this change.

Ladonna, the chaplain for pediatrics, performed touch therapy on Tom this afternoon. We were encouraged as we watched his blood pressure drop to a more acceptable level during this session. Tom always felt very relaxed and at peace whenever Ladonna did this in the past.

There is not a lot to write about at this time. It's as if Tom is in some sort of "suspended animation" while his body heals. We pray that he will return to us and be himself again soon.

Ann

Monday, February 9, 2004 9:29 AM CST

Day 75

UPDATE Monday, February 9, 2004 8:54PM

Tom continues to be in critical but stable condition.

Dr. Wagner was in this morning and Dr. MacMillan came in this afternoon with news of Tom's pathology report. They cannot pinpoint the exact cause of the lung damage -- radiation, chemotherapy, or infection. They are researching past cases to determine what, if any, similarities and/or differences there are to help them decide on a course of treatment. Tom's tissue samples are also undergoing further testing for this same purpose. Tom may be started on steroids to help his lungs heal.

Tom underwent dialysis again today. He tolerated the procedure well and the swelling that he has experienced from fluid retention went down.

Tom was stable enough to be moved to a new and much larger room. He is still on Unit 4B but in Room 230. There is now enough room for Tom, his nurses, his respiratory therapists, and all of his equipment.

Please keep Tom in your prayers. Remember, too, the other patients on 4A and 4B and especially Marshall, Cade, and Saralee.

Ann

---------------------------------------

Just a quick update before I return to the hospital.

During the wee hours of Sunday morning, Tom's oscillator malfunctioned and he had to be "bagged" for nearly an hour before he was put on a replacement. (Another oscillator was also malfunctioning at the same time and had to be replaced, too. God bless the respiratory therapists and the nurses!) Tom's blood pressure, which had been stabilized, also began to rise and fall dramatically. It was quite a night!

The renal doctors came in on Sunday morning and determined that Tom did need to be placed on dialysis. Another larger catheter (femoral line) was placed and dialysis began late Sunday afternoon/evening. Dr. Wagner was in and said that Tom's condition was still critical but stable. Tom did tolerate a bath and having his bed replaced with one that has a built-in scale for weighing him.

This morning I learned that Tom's pathology report shows no infection but lung damage due to radiation and chemotherapy. Dr. Wagner will be in later and let us know what the game plan is. Although not having an infection is good, I'm not sure what, if any, treatment there is for the lung damage.

I must get back now. I'll update again later on tonight. Paul is coming back tonight and so I'll be at RMH around 10 o'clock to greet him.

Thank you for all your prayers and words of support and encouragement. Although he isn't aware of what is happening at this time, I know that Tom appreciates and returns the love that has been sent his way.

Ann

Saturday, February 7, 2004 6:41 PM CST

Day +73

The past three days have been very busy and stressful for us. Presently, Tom is in critical but stable condition with an ICU nurse caring for him on all shifts.

Let me backtrack a bit and bring you up to date as best I can.

Tom's pulmonary status was no longer improving on Thursday. In fact, it had gotten worse. After consulting with the pulmonary staff, the surgeons, Dr. MacMillan, and others, Dr. Wagner told me that Tom really did need to undergo a lung biopsy on Friday so that we might have some answers to our questions about his lungs. Tom was on an oxygen rebreather mask on Thursday morning, but by that afternoon, Tom was having increasing shortness of breath. He even asked to be put on a BIPAP mask that would force oxygen into his lungs without intubation. The doctors agreed that this would be a good thing for Tom.

By Friday morning Tom was feeling no better. When I left to grab a coffee, he asked me to find the surgeon and tell him to do his biopsy NOW! Unfortunately, that was not to be the case. Tom remained on BIPAP for the rest of the day and he was intubated in the room shortly before he went down to the OR at 3:45 PM. He returned to his room around 5:00 PM and the nurses and respiratory therapist settled him in. Because he was on the ventilator, a nurse from 4B remained with him at all times.

Between 1 and 2 AM today, Tom oxygen saturation levels began to drop in spite of the vent. The pediatric resident was called and the ICU resident was also summoned to Tom's bedside. Nitric oxide tanks were brought in to try to help Tom breathe and it was then determined that he would need to be put on a different type of vent called an oscillator.

Tom is presently under heavy sedation and being very well cared for. Although his pulmonary status is stable now, his kidneys are beginning to give him problems. Dr. Wagner was back again this afternoon and said that the renal doctors will be stopping in tomorrow to see Tom and set up dialysis for him. I can't begin to tell you just how sick Tom is right now. Please pray that his condition improves and that he overcomes these bumps in the road that he has encountered.

Tom has shown great courage and dignity through this whole journey. I am proud to call him my son.

Again, please remember Tom and the other patients on 4A and 4B in your prayers.

Ann

Tuesday, February 3, 2004 7:10 PM CST

Day +69

The sun finally came out today, but it was cold. At 6 PM it was 1 degree and forecasted to get colder overnight. More snow is on the way for later this week. Such is winter in Minnesota.

Tom had another down day after a long night. He vomited several times overnight and he began to cough more frequently. His nurse got an order for cough syrup during the early morning hours and he has been taking it every six hours. Tom has been resting most of the day taking naps between medical interruptions.

Dr. Wagner was in this morning and told me that the pulmonary doctors would be in sometime today to see Tom. Apparently, Tom's lung CAT scan showed worsening of his pneumonia. He thought that perhaps they might want to perform a lung biopsy this week to pinpoint Tom's pulmonary problem. Dr. Wagner did switch some of Tom's medications back to IV and changed some of his antibiotics.

The pulmonary specialist was in this afternoon and examined Tom. He said that he would discuss with Dr. Wagner whether another bronchoscopy or a lung biopsy would be the best diagnostic tool for Tom. Dr. MacMillan also stopped in to check on Tom and explained to me why the lung biopsy might be necessary. In any event, it gave me something to think about this afternoon.

Dr. Wagner returned around 5:30 this evening. He had some good news. After discussing Tom's case with the pulmonary specialists, they decided to hold off on both the bronchoscopy and the lung biopsy for now. Dr. Wagner thought that Tom looked better this afternoon than he did yesterday and that he seemed to be responding to the new antibiotics. As it stands now, we will wait and see what tomorrow brings. Pray that the new antibiotics will continue to work and that Tom will be better soon.

When I left Tom around 6:00 PM, he was feeling better and was going to resume napping while I was away. He, too, was happy that things are looking up for him for now.

I wish you all a peaceful night. Please keep Tom and all the other patients on 4A and 4B in your prayers.

Ann

Monday, February 2, 2004 5:38 PM CST

Day +68

According to the Channel 11 (KARE) meteorologist, it has been snowing in the Twin Cities area for over 30 hours now. We have an official accumulation of 10.1 inches as of noon today with approximately two more inches to come by the time the snowfall ends this evening. The temperatures have been warm though -- 21 degrees above zero!

Tom is not having a good today. It's one of those "bumps in the road" kind of days. He's had intermittent vomiting and just hasn't felt well. Tom asked his nurse for anti-nausea medication before I left today. He told her that it will help him sleep while I am at RMH so that he won't need to deal with any vomiting while he's alone. When I get back, we'll clean up and sit in the chair for a while.

Dr. Wagner was in this morning and we discussed Tom's lung condition. All of us (Dr. Wagner, the nurses, and me) noticed that since yesterday Tom's respirations are shallower and more rapid. Fortunately, his oxygen saturation levels are within normal limits. Dr. Wagner listened to Tom's lungs and said that they sounded clear. He ordered that the lung CAT scan be scheduled for today instead of Thursday. Subsequently, we went down for the CAT scan around 10 AM and the results should be ready in the morning. Hopefully, we will be able to get to the bottom of things soon.

Well, I've got to grab a bite to eat and then take some laundry out of the dryer before I go back to the hospital. Such seemingly mundane activities can often help you put things in perspective and can actually be refreshing.

Please keep Tom in your prayers and remember the other patients on 4A and 4B who are facing challenges of their own.

Ann

Sunday, February 1, 2004 5:53 PM CST

Day +67

It started snowing in the early hours this morning and we have about five inches of fluffy snow on the ground. Presently, there is a lull in the snowfall, but more snow is on the way. According to the forecast, we should get another three to seven inches by tomorrow night -- for a grand total of eight to twelve inches over a two-day period. The good news is that the temperature has warmed up to a balmy 16 degrees above zero!

Once again, I woke Tom to tell him that I was leaving so that he wouldn't be surprised to wake up and find himself alone. He didn't mind in the least, but he did want me to hurry back. I'll be leaving after I finish this update with two Pillsbury tollhouse cookies that you bake fresh. There's a toaster oven on the unit and I plan to bake the cookies in it for Tom.

Tom didn't drink very much Boost supplement today. When I get back, I hope to get some milk, cookies, and oost into him. You just need to play these things by ear sometimes.

Since the physician's assistant and/or nurse practictioner does not work on weekends or holidays, Tom and I get to see the doctors first. Dr. Wagner is now on service and he's pleased with the progress Tom has made. Tom has a lung CT scan scheduled for Thursday and after the results are in, Dr. Wagner will decide whether Tom will be discharged or whether he will need a lung biopsy. Dr. Wagner said that it is common for BMT patients to vomit in the morning on almost a daily basis and that Tom's lalck of appetite is fairly common, too. It's almost as if this is part of the healing process.

Well, I've got to get back. I told Tom that I wouldn't be too long tonight.

Please remember Tom in your prayers and the other patients on 4A and 4B, too.

Ann

Saturday, January 31, 2004 6:44 PM CST

Day +66

The morning dawned cloudy but seemingly warm (around -5 degrees) and a light dusting of snow began to fall around noon. Presently, it is about 5 degrees above zero with only a slight breeze. Tomorrow's forecast promises temperatures between 10 and 15 degrees. You could say that will be a warm day by Minnesota winter standards.

When I left Tom on his own at about 4 PM, he was napping. I woke him to tell him that I was leaving and then he fell right back to sleep. He had gotten Benadryl as part of his premed regimen prior to the second unit of packed cells that he received this afternoon and that always makes him sleepy.

Tom has been drinking about eight ounces of a Carnation Instant Breakfast and Boost nutritional supplement that I mix together for him at mealtime. He seems to like this combination well enough, but I do need to remind to drink it. Tom did eat half of a cheesestick from Pizza Hut last night and it did not cause him any distress.

The doctors are happy that Tom has not had any fevers in several days and is trying to eat something. We are hoping that the pneumonia clears up and his next lung CT scan shows improvement. The road to recovery seems to a long and winding one at this point in our journey.

Tom and I are supposed to take a walk around the unit tonight. I will close now so that I can get back to the hospital.

Please keep Tom and the other patients on 4A and 4B in your prayers.

Ann

Friday, January 30, 2004 6:16 PM CST

Day +65

Was it ever cold today! The high at 8 AM was -24 and it inched up to -19 by 11 AM. Right now it's around -10 degrees or so with lows tonight between -13 and -18. At least it was sunny all day.

Tom had a decent day today. He wasn't in pain and napped for a good portion of the day. When I left him on his own at around five o'clock, he had just woken up from a nap. Tom needs to take a walk and a shower this evening so he'll get a little exercise into his routine.

The doctors have begun to switch some of Tom's IV medications to oral medications to see how he tolerates them. They expect that Tom will be in the hospital for another week or so. He will need another lung CT scan toward the end of next week to check the status of the pneumonia he has. Hopefully, the medications he is getting will have worked and he will not need a lung biopsy later next week.

When Tom is finally discharged, he will be on IV Cyclosporin (CSA). Tom has a real problem tolerating the oral CSA and I can't see where it benefits him much if he can't keep it down and we're not sure just how much he has absorbed. The doctor's prior insistence that we continue with oral CSA just lead to a lot of suffering for Tom not to mention the waste of time and money it ultimately became for all of us.

Tom did have some Carnation Instant Breakfast mixed with chocolate milk for breakfast and lunch today. He managed to drink about ten ounces of this mixture at each meal. He has asked me to pick up some cheesesticks from Pizza Hut for him on my way back to the hospital. His appetite is very slowly coming back. Hurray!

Please keep Tom and the other patients on 4A and 4B in your prayers.

Ann

Thursday, January 29, 2004 6:25 PM CST

Day +64

It was another cold one today, folks! The high got all the way up to -9 degrees. Tonight's low temperatures are predicted to be between -19 and -25 degrees with highs between -5 and -10 tomorrow. The good news is that the sunshine was very bright and made everything indoors very cheerful.

I left Tom on his own around 4:30 this afternoon and he was feeling better than he had for most of the day. We awoke around 5:00 AM and Tom felt pretty good. However, between eight and nine o'clock this morning Tom began to experience lower back pain. He was given 2 mg. of Morphine three times over the course of the morning, but this didn't seem to relieve his pain very much. The only immediate relief he got was to stand up and hold on to me for support. We did this several times in between sitting in a chair and reclining in bed. He did finally agree to try Tylenol #3 and that seemed to help a lot. The chaplain also stopped in at this time and used touch therapy on Tom. Her technique also brought him relief. The doctors think that the pain was probably caused by his position during and after yesterday's bronchoscopy.

The results from yesterday's bronchial lavage cultures are negative so far. Tom's CMV (cytomegalovirus) cultures are also negative at this time. Dr. Verneris told me that he has seen cases where the cultures come back negative twice and on the third set of tests, they are positive. Since CMV is very dangerous to the immunosuppressed (Tom),I hope that Tom's CMV cultures remain negative. We won't know any more about this until a third set of cultures is drawn.

Well, I must now brave the cold and get back to hospital. Stay warm and toasty.

Please remember Tom in your prayers and the other BMT patients and their families on 4A and 4B.

Ann

Wednesday, January 28, 2004 7:00 PM CST

Day +63

It was very cold today (-9 at 5:00 PM) on my way back to RMH. However, the sun was bright and made it seem warmer than it actually was. Tonight's temperatures should be between -13 and -18 with highs tomorrow of -5 to -13. Tonight's windchill will make it feel like -35!

The pulmonary team performed Tom's bronchoscopy at 1:45 this afternoon. There was a "cast of thousands" and equipment in the room with barely enough room for the nurse and me. Tom did very well and his only "battle scar" was a bloody nose. His nurse, Carol, packed his nose and he was given platelets. The bleeding eventually stopped and Tom felt well enough for me to leave him alone for a while.

We got up at 6 AM today, watched television, and worked on a jigsaw puzzle together. Tom was in good spirits all day and I hope to find him that way upon my return.

Tom has only needed his anti-nausea medication once a day now (before he gets Abelcet).This medication makes him very sleepy and concentrating difficult. I think that Juli, his teacher, will find Tom more awake and able to work on his assignments now.

Well, I must make this update brief once again. I'm off to the hospital in what are now -15 degree temperatures. What fun!!!

Please keep Tom in your prayers.

Ann

Monday, January 26, 2004 3:08 PM CST

Day +61

It has been snowing here since the wee hours of this morning and has not stopped. It is very pretty to watch and at least I don't need to drive in it. The walk to RMH this afternoon was rather nice and the sidewalks are certainly well maintained.

Dr. Verneris stopped in this morning and said that Tom's gastric biopsy did not show graft-versus-host-disease (GVHD). His stomach and esophagus are very irritated. Tom has been started on medication to ease that irritation and his antacid has been increased as well.

Tom is still spiking temps. A CT scan of the sinuses, lungs, and abdomen is scheduled for sometime today -- most likely late tonight. This may or may not yield any new information. Tom also had a chest x-ray this morning but no word on that yet.

Well, I think I've touched base on the pertinent issues at this time. I'm off to take a walk back to the hospital in this winter wonderland.

Ann

Sunday, January 25, 2004 3:20 PM CST

Day +59

It has been cold here the last few days -- very much like back in Rhode Island. Yesterday and today the highs were around 12 and 15 degrees with quite a bit of wind. Snow is predicted for tonight with an accumulation of about one inch with more snow on the way tomorrow (accumulation between two and four inches in the metro area).

Tom is doing about the same today. He's had some nausea and vomiting with a slight fever. In other words, he's just not feeling that great. He sleeps a lot because of the premeds for platelets and Abelcet. The Ativan he gets for nausea also puts him to sleep.

We should have results from Friday's biopsies tomorrow. Hopefully, all is continuing to go well with his bone marrow. The results from his gastric biopsies should tell us what is wrong and the doctors will be able to prescribe the appropriate medications to correct the problem. It's very frustrating for Tom to be this way. So far, his blood cultures have been negative.

It's almost time for me to be heading back to hospital. I've got just a few more housekeeping issues to attend to and then I'll be heading out.

Please keep Tom and the other transplant patients on both 4A and 4B in your prayers.

Ann

Friday, January 23, 2004 6:19 PM CST

Day +57

It was a snowy day in Minneapolis without much accumulation, perhaps two to three inches in the Metro area. It certainly is cold and windy which makes walking to and from the hospital an experience.

Tom was readmitted to the hospital yesterday. He is on Unit 4B, Room 222. The telephone number isn't written anywhere in the room, but if you call the Fairview-University Medical Center and ask for Room 222, you will be connected.

Tom had an abdominal ultrasound this morning around eight o'clock. It was a surprise to us as it had been scheduled very early this morning. Then we waited for the bone marrow biopsy and gastroscopy to be performed in the OR at 11 AM. Due to an emergency in the OR, Tom's procedures were delayed about an hour but went off without a hitch. He tolerated both procedures well and is resting in his room back at the hospital. We should have biopsy results on Monday.

Tom didn't mind that I left alone because I promised to be gone only a short while. It's been a little less than two hours so I should get back to hospital now.

Ann

Monday, January 19, 2004 8:17 PM CST

Day +54

It was another cold one today. The temperatures did not get out of the single digits all day! What a day for Tom to be discharged!

We are now back at RMH and Tom is resting. We got in around 4:45 PM and learned that our telephone was out of order. There was no dial tone. The RMH office called in the repair and it should be fixed by tomorrow.

Tom asked for some chicken tenders from Burger King for supper tonight. He ate only one of them with honey sauce but that's a start. Maybe he'll want something like applesauce or oatmeal for breakfast tomorrow. Every small step that he can take toward eating again is a plus.

Tom has a BMT Clinic appointment tomorrow morning and we'll get back into our routine.

I'll probably write a little more tomorrow. Right now, Tom has quite a few pills to take and he needs me to help him with that.

Please keep Tom in your prayers as well as the other patients on 4A.

Ann

Sunday, January 18, 2004 6:25 PM CST

Day +53

Another bright and sunny day in Minneapolis but oh, so cold! The high today was in the single digits and when I left Tom this afternoon around 4:30, it didn't feel all that bad. Amanda, Cade's mother, asked the shuttle driver to stop and pick me up. So, I hopped in and rode back to RMH. You can imagine my surprise when I turned on the 5 o'clock news and learned that it was only 1 degree outside. Lows tonight are expected to be around -10 with highs tomorrow between 0 and 5 degrees. Welcome to winter in Minnesota!

Tom slept most of the day away. He really needed the rest. When I left him, he had woken up and didn't mind being on his own for a while. Tonight he'll take a shower and I'll change the dressing over his Hickman line. After that, we'll take a walk around the unit.

I met Marshall for the first time today. What a lovely young man! He was out walking with his mother and a nurse. It was good to see him out and about. I told Marshall that Tom is looking forward to meeting him. Tom often asks me how Marshall and Cade are doing and he wants them to get better soon.

The doctors were in this afternoon and told me that they thought Tom could go home as early as tomorrow. His blood cultures have all been negative, the CT scans are OK, and he has not had a fever in a few days -- all criteria for discharge. We'll see what tomorrow brings and pray that it brings us discharge orders.

Well, I've got to take another load of laundry out of the dryer and head back to the hospital.

Please keep Tom and the other patients on 4A in your prayers.

Ann

Saturday, January 17, 2004 5:19 PM CST

Day +52

Today dawned cloudy but became sunny around 2:00 PM. When I left the hospital around 3:15 this afternoon, there was a light breeze with temperatures in the low 30's. According to the weatherman, it is now 28 degrees with low temperatures between 3 and -3 degrees predicted for tonight. I'll be heading back soon with some fresh laundry and "stuff" for Tom.

Tom is feeling a little better today and has been sleeping for most of the day. We did manage to get down and keep down all his medications (even the dreaded cyclosporin!) last night and today. Apparently, Zofran and Ativan are helping with the nausea and vomiting Tom has been experiencing lately.

Tom's lung CT scan showed some improvement of his right middle lobe pneumonia and the abdominal CT scan showed no changes in the status of his liver adenomas. Last night's sinus CT scan had not been read yet when the doctors came in on rounds this morning. Although Tom did have a fever during the night, his temp was down this afternoon.

I must run back upstairs and attend to the laundry. Please keep Tom and the other patients on 4A in your prayers.

Ann

Friday, January 16, 2004 3:51 PM CST

Day +51

It has been a very long time since this page has been updated. A lot has happened since then -- discharge, readmission, discharge, and now another readmission!

Tom was readmitted this morning to Unit 4A, Room 211. His telephone number is 612-273-0228.

Tom had a good clinic visit yesterday -- no fevers, a platelet transfusion, and good post-platelet transfusion counts so all seemed well. However, "Beastus Vomitus" reared its ugly head during the late afternoon. It made Tom quite miserable and unable to keep down his evening medications.

This morning Tom still felt rather queasy, but he did manage to eat and keep down some apple sauce and ginger ale. We went off to clinic hoping to tame "the beast" with something from Dr. McMillan. Unfortunately, Tom had developed a fever by the time we reached clinic. The cut-off for admission is 100.5 degrees and Tom's temp of 100.8 degrees earned him a readmission ticket.

Tom's lungs sound clear and he is scheduled for a CT scan of the lungs, sinuses, and abdomen sometime later today. We hope that we won't be there for very long this time. I'll be getting back to the hospital as soon as I am finished. Tom needed a few things from "home" so I walked back to get them and write this brief update. I'll keep you posted.
Ann

Friday, December 19, 2003 10:33 PM CST

Day 23

Blue sunny skies were the order of the day here in Minneapolis. The temperature hovered around 30 degrees or so but seemed warmer due to a lack of wind. The flags outside Tom's window never seemed to stir at all today.

We have good news to report. This morning's WBC was 5000! This means that Tom's discharge from the hospital is imminent. We just don't have a firm date yet. That depends on several out-patient support services that are being put into place.

The diabetic teaching nurse stopped by and taught me how to use a glucometer to monitor Tom's blood sugars and how to inject him with insulin based on his blood sugar results. This has been a difficult thing for Tom to accept, but everyone keeps reminding him that it is only a temporary situation. Once Tom is off IV TPN and IV steroids, his blood sugar will correct itself and he will no longer need insulin. That will indeed be a happy day!!

The dietician was in this afternoon with some preliminary teaching information. He will return with written information for us to read to help us keep Tom's blood sugar stable.

Once Tom is discharged to RMH, we will make daily visits to the BMT Clinic. These appointments will most likely take all day as they will entail IV medication administration, blood and platelet transfusions, and medical follow-up visits. There will also probably be x-rays and scans thrown in for good measure, too. As you can see, Tom will not spend all his time watching television and eating bon-bons during his recuperation.

It hardly seems possible that we started on this journey exactly one month ago with Tom's admission to the hospital. At this time last month, we were wondering just where this path would lead us and how fraught with difficulties it would be. God has richly blessed us with a fairly straight path and only a few small bumps in the road so far. We are very thankful for that.

Today was the last day of classes at Bishop Hendricken before Christmas vacation. Tom and I have thought of our Hendricken family off and on today. The prayers, support, and good wishes that Tom and our family has received from you has meant more to us than we could ever express in words. We want to wish all of you -- students, faculty, and staff -- a safe and happy holiday season.

Please remember Tom in your prayers as his journey is not yet over. Please keep Marshall, Cade, and their families in your prayers, too, as well as the other children here on 4A.

Ann

Thursday, December 18, 2003 9:50 PM CST

Day 22

Today started out sunny with a dusting of snow on the road and sidewalks. By early afternoon it was partly cloudy and it didn't seem very cold outside -- at least by Minnesota standards. Most pedestrians were not hurrying along eager to get out of the cold.

We did get some good news today. Tom's WBC was 3300 and his ANC (absolute neutrophil count/ability to fight infection) was 3000. The preliminary report of yesterday's bone marrow biopsy indicates early signs of engraftment. There are "baby" red and white blood cells in Tom's bone marrow. We should know more within a few days.

Yesterday's chest x-ray showed that the pneumonia is resolving and the liver ultrasound showed no changes in the adenomas and normal blood flow through the liver. The doctors are now confident that Tom's elevated bilirubin is most likely due to the medications he has been on for the past month and not some disease process or complication. Tom is now being weaned off some of these medications and may be off them completely by the time he is discharged from the hospital to Ronald McDonald House.

The hospital teacher stopped in this afternoon and worked with Tom on his lessons. He was actually somewhat eager to begin getting back into the swing of things.

While Tom was with the teacher, I stopped in at a BMT caregivers support group meeting that meets in the solarium on the unit every Thursday afternoon. Today's topic was "Coping with the Holidays". It was good to talk with others who are caring for someone going through a bone marrow transplant. The others in attendance today all came from the same family whose husband/brother/father/son had just received his transplant only a few hours earlier. We mostly talked about the transplant experience, touched on the fact that all of us felt thankful to be here this year, and that next Christmas would only be better.

Tom was OK about being on his own for a short while around suppertime tonight. Paul and I left the hospital around 5:00 PM and I returned around 6:30 or so. I managed to grab a quick shower, eat supper, start laundry, and walk back to the hospital in what I consider to be record time.
When I got back on the unit, we went for a jaunt around the nurses' station after which Tom rested. He is receiving a platelet transfusion at this time.

Please remember Tom in your prayers. Marshall and Cade also need your prayers very much as well as the other children here on 4A.

Ann

Wednesday, December 17, 2003 6:27 PM CST

Day +21

Today dawned bright and sunny for a change. What a great day! The snow has even melted off those roofs with a good southerly exposure.

Tom's night did not go as well as we would have liked. We spent most of the early morning hours dealing with nausea, vomiting, diarrhea, and clean-up. Tom's last bout came at 5:30 AM accompanied by stomach pain. He had gotten IV meds for the nausea and vomiting earlier. Tom did get IV pain meds and was finally able to sleep deeply.

Tom's first morning activity was to go down for a chest x-ray to check on the pneumonia. Then the bone marrow biopsy was done at about 11:30 or so this morning. Tom tolerated this procedure well and slept until it was time to go down for his liver ultrasound. That happened at about 2:45 this afternoon and we got back to his room around 4:00 PM.

Tom's WBC was 2500 this morning and his ANC was up to 2200. Tom's bilirubin is also up which is not a good thing. Hence the reason for the liver ultrasound. The doctors needed to check the status of the adenomas and make sure that everything is going OK. We should know something soon.

The hospital teacher stopped in this afternoon before we went to ultrasound. Tom was sleeping so she left some assignments for him that his teachers at Hendricken had put together. If he's feeling up to it, we'll have a look at and start on them in the morning.

Paul took me out to an early supper tonight -- to the hospital cafeteria! Tom was medicated for nausea and was feeling pretty sleepy so I asked him if he would be OK by himself while I grabbed a quick bite. He said that he didn't mind so off we went. It was nice to get off the unit for a little while for a non-medical reason.

A little while ago I looked out Tom's hospital room window and watched a few college students packing things into cars. Final exams are winding down at the University of Minnesota and Christmas break is about to begin. I'm sure that there must be a good deal of celebrating going on at the local hang-outs on Washington Street. There are probably quite a few students suffering the effects of the "Budweiser flu" these days.

Please remember Tom in your prayers. He has hit a few bumps in the road. Also remember Marshall, Cade, and the other children who are in the hospital. It is certainly a difficult time for them to be hospitalized.

Ann

Tuesday, December 16, 2003 8:52 PM CST

Day +20

It was partly cloudy around 11:30 this morning as I headed back to RMH. Then the sun did come out about an hour later and helped to soften the inch or so of snow that had fallen overnight.

Tom's day went pretty well. He was rather tired this morning and slept in for the most part. He again took a walk around the unit and felt better for it. Tom's WBC was 1800 this morning! We are hoping and praying for a continued upward trend.

Last night was a long night for us. The nurses were in and out constantly with medications, platelets, medications, packed red blood cells, and more medications. And I didn't even mention the countless number of vital signs that were taken throughout the late evening and night shifts. The nurses certainly worked very hard with and for Tom last night.

Tom had a reaction to the Abelcet, an IV antifungal, last night and again tonight. In spite of premedication, Tom experienced chills both last night and tonight. To counteract the chills, Tom was given IV Demerol and some blankets from the warmer. It really is difficult to watch him suffer like this. Fortunately, there is something that can be done to help him and hopefully his need for this medication will be over soon.

Tomorrow is Day +21 -- a very big day for us. Tom is scheduled for a bone marrow biopsy at 11 AM. Please pray that Tom's biopsy shows 100 percent engraftment with good cellularity and the early signs of his new marrow producing red blood cells on its own. It already seems as though the waiting for results is endless and Tom hasn't even had the biopsy yet. Patience is certainly a learned virtue.

Paul and I took the van back to the hospital tonight around 6:15 and the well-traveled roads were clear. It wasn't overly warm, but it also wasn't bitingly cold either. With the snow blanketing the ground and the RMH lit up for the holidays, it reminds me very much of a Christmas card. I will try to take a picture of this scene and download it to the website soon.

Santa and Mrs. Claus came to RMH tonight. They listened to the children's Christmas wishes, had pictures taken, and gave fleece throws to the little ones. It was very nice to watch the kids gather around Santa and Mrs. Claus while we waited for the shuttle to come.

Please keep Tom in your prayers, especially as Day +21 dawns on us. Also remember Marshall, Cade, and the other children here on the unit and at Ronald McDonald House.

Ann

Monday, December 15, 2003 10:10 PM CST

Day +19

It was once again another gray day in Minneapolis. I left the hospital around 1:30 and returned around 7:45 tonight. During this time away drizzle was falling and starting to ice up on the sidewalks and sidestreets. While watching the 10 o'clock news, Tom and I noticed that there are already several schools that are either on a two-hour delay for tomorrow morning or are closed altogether. Snowfall with accumulation of two to three inches in the metro area is also predicted overnight along with the ice. Winter has indeed arrived!

Tom's white count was 1300 this morning. Great news! Tom is still not very hungry, but he is drinking more ginger ale today than he has in about two weeks. The doctors feel that his appetite will return at its own pace.

Tom went on a walk around the unit this afternoon. He did very well. He said that it did him good to walk around. Tom did take a nap after his walk. He was asleep when I came in and finally woke up shortly before 10 PM. He'll be getting platelets and packed red blood cells tonight so he's been premedicated for the transfusion and this always makes him sleep.

The RMH van was scheduled to take residents shopping tonight. However, because of the weather, the shopping trip was cancelled. Paul and I made a run to Target for a mother who had run out of Pediasure for her daughter. Her shipment would not be in until Thursday and her little girl uses Pediasure to meet most of her nutritional needs. Although the temperature was around 28 degrees, you knew that the roads would probably become treacherous later on tonight. We were glad to get back to RMH and deliver the Pediasure. Unfortunately, I got back to the hospital later than I had anticipated.

More good news...if all goes well, Tom might be able to go out to RMH on a pass later this week. No one knows for sure whether or not this will happen yet. It would be nice if Tom could get out and enjoy a little fresh air and different surroundings for a while. We'll just have to wait and see.

Please keep Tom in your prayers along with Marshall, Cade, and the other children here on Unit 4A.

Ann

Sunday, December 14, 2003 7:35 PM CST

Day +18

It was another gray day in Minneapolis today. When I went out to Ronald McDonald House around 1:30 this afternoon, it seemed like the temperature might have been somewhere in the 30's. On my return trip to the hospital at about 6:30 PM, I was pleasantly surprised that the temperature seemed to have remained about the same. The sidewalks and roads were wet but not slippery and the snow actually looked "heavy" as it lay on the ground and shrubs.

Tom had a so-so day. He is still getting platelets once or twice a day and packed red blood cells every other day or so. Tom has had trouble keeping some of his pills down, particularly Cyclosporin. This medication seems to be one of the more difficult ones to digest.

Tom's doctors feel that he is progressing nicely. His WBC was 1000 this morning! The cultures on the bronchial lavage are not back yet and we must wait another day or so for results. As it is, Tom is taking a broad spectrum antibiotic, an antifungal, and an antiviral so most "bugs" are covered.

Tom is resting right now. I think that it will be an early night for us both.

Please keep Tom, Marshall, and Cade in your prayers. They are all at different points on their respective journeys.

Ann

Saturday, December 13, 2003 6:28 PM CST

Day +17

Today dawned partly sunny but soon turned cloudy. I have no idea what the temperature is actually like outside and I didn't see any weather forecasts today, so I can just guess that the temperature must have been somewhere in the teens today. This is December in Minnesota!

Tom had a so-so day. His bronchoscopy was scheduled for 11 AM today, but it didn't actually take place until noon. Tom weathered the procedure well. The bronchoscopy took place in the room with Tom under heavy sedation. The whole process didn't take long and was no worse than watching it on Discovery Health Channel. I must say that the "Health Channel" on cable here is very mild indeed -- not at all like back home.

Right now, Tom is resting comfortably. He hasn't eaten anything in two days and I'm hoping that he'll be hungry later on. We have a "stash" of soft foods that Tom likes in his closet. The doctors told us that Tom can eat whatever he feels like, whenever he feels like. Dr. Grewall says that he needs to eat something even if he vomits it later. Tom needs to get back into the routine of eating so that he can be discharged.

Some of Tom's medications were switched from IV to oral today. Tom takes one pill at a time until he finishes what is in the med cup. Using this method, he has tolerated all his pills well so far. (I hope I haven't jinxed him.)

I have a Hickman line teaching class tomorrow morning. This class will teach me about Tom's Hickman catheter and how to care for it when Tom leaves the hospital. Since Tom has a portacath in place, there is a chance that he will be able to have the Hickman line removed before we reach the six-month post-transplant mark. We think that would be great.

Please keep Tom in your prayers. Also remember Marshall, Cade, and the other children here on 4A.

Ann

Friday, December 12, 2003 8:13 PM CST

Day +16

It was a cold one today. Although the sun was out, the temperature did not seem to climb very high. The weather forecast at 7 AM said that 13 degrees would be our high in the Twin Cities metro area today. I left Tom on his own around 5 PM and when I was heading back to the hospital around 7 o'clock, there were some fluffy snowflakes falling gently. The wind had died down so it didn't feel as cold as it must have been. I do wear a hat, gloves, and scarf and walk briskly so that the cold doesn't usually feel too bad.

Tom had a quiet day. His WBC was 700 this morning! The doctors did try to schedule a bronchoscopy for today, but the schedule was full. Tom will undergo a bronchoscopy tomorrow morning. The doctors will have the bronchial washings from this procedure cultured so that they can tell just what is causing the pneumonia. Sensitivity tests will be done so that the appropriate antibiotic or antifungal can be prescribed. Tom is presently on a therapeutic dose of an antifungal medication and his antibiotics have been changed to broad spectrum for the time being.

The doctors are still encouraged by Tom's progress. This is just one of those "bumps in the road" that we were told to expect. It is not unusual for transplant patients to have some sort of problem along the way. We are still hoping for discharge to Ronald McDonald House before Christmas if possible. We are taking things one day at a time.

Please remember Tom in your prayers. Also remember Marshall in your prayers. His journey has been long and difficult so far. Cade, too, needs some special prayers. His journey has just begun. May it be as smooth as possible.

Ann

Thursday, December 11, 2003 7:06 PM CST

Day +15

It was a sunny but cold day here in Minneapolis. I don't know what the high and low temperatures were today, but I can tell you that it was quite chilly when I walked back to Ronald McDonald House. Paul was having problems getting to the car because of slippery conditions in the parking lot and we had documents that needed to be overnighted to Providence. So I left Tom and rushed off to make a quick run to the post office before closing time. All in all, everything went well. The documents were sent on time, the car was moved to a closer parking spot, and Tom rested while I was out.

Tom had a small setback. He now has right middle lobe pneumonia. He has had not any fevers, coughing, or congestion, but he did develop some right back pain. I told the nurse practicioner about it this morning and she ordered a chest x-ray. The chest x-ray showed pneumonia and Tom had a chest CT scan around 6 PM. Tom was started on IV antibiotics to combat the pneumonia and we were told that it should clear up quickly and not hold up discharge plans.

Tom's WBC was 400 today and we hope that it will soon start climbing so that he can get out of this room and walk with me in the halls. It would be nice for him to have a change of scenery.

There are no signs posted all over the hospital telling people not to visit patients if they have flu symptoms. Visitors with scratchy throats, runny noses, etc. (but no fevers)are told to wash their hands and wear a mask when visiting a patient and to keep their visits brief. There are also signs on restroom doors at the hospital reminding people of the importance of good handwashing and just what flu symptoms are. I don't ever remember seeing anything quite like this back home during flu season.

Tom and I saw on the news that there seems to be a shortage of flu vaccine in the Twin Cities area. People are traveling many miles to get a flu shot that may or may not protect them against an outbreak of the flu. Good handwashing is being promoted as one's first defense against catching/spreading the flu.

Please remember Tom in your prayers. Marshall has suffered another setback with his kidneys and he and his family need your prayers very much. Paul and I were talking with Marshall's father,who was to have returned home today, and they are praying very hard for Marshall to get better and be pain-free. Marshall faces renal surgery again sometime tonight. Please remember Cade who was admitted today. Cade will have radiation tomorrow and chemotherapy will start on Saturday. His bone marrow transplant is scheduled for next week.

Ann

Wednesday, December 10, 2003 8:34 PM CST

Day +14

The view from Tom's window this morning revealed a winter wonderland. The sun was shining and everything was so very, very white. The accumulation in the Metro area where we are was only four to six inches. Just south of Minneapolis more snow fell -- about 12 inches.

Tom's WBC rose to 400 today. This news is very encouraging. Tom and I watched a BMT discharge video that Teresa dropped off this morning and then we met with her this afternoon to review its contents. This doesn't mean that Tom will be going home real soon. He does have a chance at being discharged to Ronald McDonald House at some point after his bone marrow biopsy on Day +21.

Tom was OK about staying alone this afternoon. I left the hospital around 4 o'clock while it was still light out to buy a loaf of bread. Tom wanted to try a tuna sandwich on white bread tonight, so I braved the somewhat slippery and slushy sidewalks of Stadium Village (Minneapolis' version of Thayer Street) to make my purchase at the local convenience store. Then it was back to Ronald McDonald House for a shower, laundry session, and supper.

AFter supper Santa came to Ronald McDonald House. It was so nice to see all the young children and the young-at-heart talking with Santa Claus. Paul and I had our picture taken with Santa, too. Santa gave us each a candy cane and one for Tom, too. I don't know how he knew who we were. You could say that it was almost "magical". I spent a little more time away from Tom than I usually do (about four hours). It was nice to get away for awhile and return refreshed.

Please keep Tom in your prayers. Marshall and Cade also need your prayers. They both are facing many challenges in the days and weeks ahead.

Ann

Tuesday, December 9, 2003 7:10 PM CST

Day +13

When I looked out the window at around 11:30 last night, the lawn was bare and the pavement appeared wet. I couldn't see any snowflakes falling and I hoped that the roads would not get too slippery. This morning there was a light snow falling and it looked very pretty. At this time it is still snowing and there is an accumulation of about three to four inches. It's certainly nowhere near "blizzard" conditions here in Minneapolis.

Although he hasn't felt completely on top of the world today, Tom continues to do well. The doctors are pleased with his progress. His WBC dropped to 200 this morning and this, too, is to be expected at this point. We hope that tomorrow's WBC is higher and that they will reach normal limits soon.

Tom was channel surfing today and happened upon the hospital channel. Santa Claus was reading letters submitted by patients. Tom heard Marshall's request for a shotgun and ammunition to go hunting and for a cure for Fanconi Anemia. Tom was touched by Marshall's second request.

Tom didn't want to be left alone today so I'll be staying here until some time tomorrow afternoon. Tom needs a few things from Ronald McDonald House so I plan to walk over when he is feeling better tomorrow.

Please keep Tom in your prayers. Also, please remember Marshall and his family in your prayers. Cade, who is eight months old and has Fanconi Anemia, will be admitted on Thursday for a bone marrow transplant next week. Please remember him and his family, too.

Ann

Monday, December 8, 2003 8:08 PM CST

Day +12

One gray day follows another out here in Minneapolis and still no snow! As I watched passers-by on the sidewalk today, most people seemed to enjoy walking to their destinations. Some were hatless and some had their winter jackets unzipped or unbuttoned. Although a light snowfall is in the forecast for us tonight, nothing has happened yet. We'll see what tomorrow brings.

Tom had a very good day today. This morning's WBC was 300! Tom was up at 6:30 AM and he wasn't going to school. He did get packed red blood cells late last night and he is presently getting a platelet transfusion. The doctors feel that his mucositis is finally peaking and should go away soon. They are pleased with Tom's progress so far.

The hospital teacher stopped in today and wants to start working with Tom soon. The hospital chaplain was in and did some therapeutic touch work with Tom this afternoon. Tom said that he could feel the negative energy leaving his body and that he felt very relaxed afterward. Tom also had a nice chat with his social worker today. All in all, he had a busy day.

I finally did get a chance to leave the hospital around 5:15 this afternoon. It felt good to walk back to Ronald McDonald House under a cloudy but dry sky. When I got back to the hospital around 7:30 PM, Tom said that he had had a good time by himself. He had gotten up and sat in the chair for a while and hadn't felt sick at all while I was gone. I'm hoping that it won't be long before this hospital routine is history and Tom is able to be at Ronald McDonald House again.

Please keep Tom in your prayers. Again, remember Marshall and his family, too.

Ann

Sunday, December 7, 2003 7:10 PM CST

Day +11

It was another gray day here in Minneapolis but no precipitation. Judging from the way the flags were flapping outside, it was rather windy today.

Tom was having a "down" day today. He didn't feel very well all day and this continued until around 6 PM. Tom slept most of the day and is feeling a lot better now. At this moment he is talking on the telephone and feeling fine. What a good sign!

Tom's white blood cell count (WBC) was 200 again today. Dr. Grinwall thinks that this may not be correct and that tomorrow's count should give us a better picture of what is going on.

Tom was having quite a bit of mouth pain starting early this morning and lasting all day. This evening, however, the pain went away. Craig, Tom's nurse, thought that this might be a sign that his WBC is starting to come in. Tom and I certainly hope so.

All in all, things are going much better tonight than they were earlier today. I expect that Tom will have some "down" days along the way, but I hope that they aren't too often or last too long.

Well, I plan to get outside and into the fresh air tomorrow. It will be nice to stretch my legs and walk over to Ronald McDonald House. I've been here with Tom since last evening. I didn't want to leave Tom by himself today and he didn't want to be alone either. Tom and I can't wait until he is able to walk in the hall here on the unit. That will be a "first step" toward walking out of here and into the real world.

Please keep Tom in your prayers. Remember Marshall and his family, too. The doctors have found out what caused some of his problems, but other problems have yet to be solved. Marshall's condition remains serious.

Ann

Saturday, December 6, 2003 8:56 PM CST

Day 10

More of the same weather today -- cloudy but dry. When I left the hospital around 12:15 or so, it was cold and windy. However, when I walked back to the hospital around 6:30 tonight, the wind had dropped and it felt warmer outside. Compared to what everyone is going through at home, the weather in Minnesota is relatively mild at this point. I don't think that this will last for very much longer.

Tom had another good day. He got platelets this morning and hasn't needed anymore so far. Tom's WBC was down to 100 this morning, but this is to be expected at this point. His WBC should start climbing steadily over the next few days. Once Tom's ANC (absolute neutrophil count) is 500 or above for three consecutive days, Tom will be allowed to go out in the hall wearing a mask.

Tom's spirits are good. He met a new nurse today named Sylvia and they seemed to hit it off rather well. Tom asked her to be on his nursing team when she works on this unit. I'm glad that he is getting accustomed to the routine and is taking a more active role in his own care.

Right now, we're watching "Ernest Saves Christmas" and after that it will be time for a quick shower and bed change. We are planning to watched "Unwrapped" and "Top Five" on the Food Network before we go to bed. I'm hoping that Tom will want to try a small bedtime snack tonight.

Please keep Tom in your prayers. Marshall also needs your prayers. Although he has made some progress, Marshall is still in serious condition.

Ann

Friday, December 5, 2003 8:18 PM CST

Day +9

Another gray day dawned in Minneapolis with only a dusting of snow overnight. By noon the snow was melted and patches of bare lawn were everywhere. When I left the hospital around 2 PM, it was not as cold as I expected, but when I came back around 5:45 this afternoon, the temperature had dropped and it was windy. From what I've been told, it can get very windy in Minnesota.

Tom had another good day. The Zofran that he was started on yesterday worked very well. Tom only vomited once around 6:30 this morning and this episode was not like the ones he had been having over the last few days. Although Tom is feeling better now that he is on Zofran, he is a bit concerned about getting sick while talking on the telephone. He does like to know that family and friends have called and I think that he'll be able to talk on the telephone without any problems within a few days.

Tom's mouth sores are still bothering him. His morphine drip has been increased, but the doctors told us that he is taking about 1/5 the dose that most patients take at this time. The doctors reminded Tom to ask for pain medication when he needs it and to not be shy about it. We all have different pain thresholds and Tom is the best judge of what his threshold is.

Tom did get a platelet transfusion and two units of packed red blood cells today. His counts were at the cut-off points this morning so he got these blood products. The doctors want to make sure that Tom's liver adenomas do not hemorrhage so he gets blood products more frequently than other FA BMT patients.

Well. it's getting late for us and we're both a bit sleepy. Time to relax and perhaps call it a night.

Please keep Tom in your prayers and remember Marshall, too.

Ann

Thursday, December 4, 2003 7:21 PM CST

Day 8

Today dawned bright and sunny. However, it became cloudy during the afternoon and now the night sky is white just like one giant cloud. This morning's weather forecast did say that there could be snow or rain falling this evening or tonight.

Tom is continuing to do well. His white blood cell count (WBC) was 200 this morning! Although it may drop over the next day or so, the doctors are happy that Tom's new bone marrow is making white blood cells. As his WBC increases, Tom's mouth sores should heal and his appetite should return. Dr. Grinwall predicts that Tom's appetite will be voracious.

The doctors have ordered a Zofran drip to combat the frequent nausea and vomiting that Tom is experiencing. This medication should prove more effective because it will run in continuously rather than be given in response to an episode of nausea or vomiting. This medication will let any sores that might be lining Tom's esophagus heal and Tom will also avoid developing esophageal tears. It's much easier to prevent problems than to fix them.

Tom was up early (6:30) this morning. We watched some TV and then Tom dozed off. He did receive some platelets around 7 AM and then again this afternoon. Of course, he did get Benadryl as a premedication so he has been sleepy and sleeping quite a bit today.

Please remember Tom in your prayers. Please keep Marshall in mind, too. Although he has shown some improvement, Marshall is still considered to be in serious condition.

Ann

Wednesday, December 3, 2003 8:10 PM CST

Day +7

It has been somewhat cloudy all day, although not as dreary as yesterday. The daytime temperatures remain around freezing but fall close to the teens during the night. Still no fresh snow and what has been on the ground is slowly receding.

Tom slept on and off most of the day. He received platelets very early this morning and then packed red blood cells later on. Presently, he has another platelet transfusion finishing and is sleeping peacefully.

Dr. Grinwall stopped in this morning and continues to feel that Tom is progressing nicely. His mouth sores have not yet begun to heal, but that will change as soon as his white blood cell count returns. The mouth sores are still painful, but Tom says that they're not as painful as they were yesterday.

Tom also doesn't have any real appetite right now. He does enjoy sipping on ginger ale or iced tea throughout the day. Apparently ginger ale is not a big seller in this area -- even at the holidays. Paul went on quite a search in Cub, a local warehouse-type supermarket, in order to find some ginger ale for Tom. Even the dietary department doesn't stock it in the unit's kitchenette and it doesn't always get put on Tom's tray when requested. It's much easier to just bring our own in for Tom.

Tom's hair loss is becoming more apparent now. I brought over a couple of hats for him, but Tom wants to wait until he is completely bald before wearing a hat. It is so strange to see him like this. He does understand that this condition is only temporary.

Please keep Tom in your prayers. Also, remember Marshall in your prayers. This afternoon his grandfather told us that Marshall is responsive, but he is still in serious condition.

Ann

Tuesday, December 2, 2003 8:15 PM CST

Day +6

First of all, I want to thank everyone who has written in the guestbook and/or sent cards. I can't tell you how much your prayers and messages of encouragement mean to us, especially Tom. You bring a big smile to Tom's face whenever he reads your entries or gets the cards you've sent him.

Today was truly a gray day. The sky never seemed to brighten up one bit, but no snowflakes fell today. The temperatures hovered around freezing but it wasn't windy so it didn't seem very cold.

Since Tom didn't want to stay alone this afternoon while I went back to Ronald McDonald House to take a break and do some laundry, I signed up for a Care Partner volunteer to stay with him . You can sign up for a Care Partner to stay with your child for a maximum two hour block of time. However, there were two Care Partners available this afternoon on the unit and not many families had asked for a break so Tom's Care Partner was able to stay a little longer and finish watching "Lord of the Rings: The Two Towers" with Tom. He and Tom seemed to hit it off. They have some similar interests.

Tom had a good day today. He was up early and on the Internet by 6:30 AM. In spite of being premedicated for a 7:00 AM platelet transfusion, he was pretty perky all day. He does have a hard time talking to people on the telephone for any length of time. He gets nauseated and often vomits. His nurse has just given him some Ativan to counteract the nausea. This usually works for Tom and he should be able to take his shower soon.

Dr. Grinwall, the attending physician on the unit this month, says that Tom is doing fine. Everything is going according to plan. Tom has begun to lose his hair, but he is taking it in stride. It certainly isn't fun watching Tom's hair fall out, but the temporary hair loss is a small price to pay for a new chance at life.

Please remember Marshall and his family in your prayers. Marshall is an eight year old boy with Fanconi Anemia who is 74 days post-transplant. He has had complications along the way and just had his third surgery in two days.

Please keep Tom in your thoughts and prayers as he travels on this journey.

Ann

Monday, December 1, 2003 7:02 PM CST

Day +5

Another day dawned bright and sunny here in Minneapolis. Since I haven't been out of the hospital or seen the weather forecast, I have no idea what the temperature was like today. However, I did watch people walking by and they were neither hunched over nor scurrying along to get out of the cold.

The doctors were in this morning and said that Tom is looking just fine. He is where he should be -- discomfort and all. Tom's mouth sores are really bothering him and he is now on a morphine drip for mouth pain. He really hasn't been able to eat and only takes sips of water or ginger ale. He has vomited several times today and he finally agreed to some IV Ativan to ease his stomach. He is sleeping right now and I don't want to disturb him. This should pass in about a week to ten days when Tom's white count begins to come in full force. Right now, that seems so very far in the future.

Tom was vomiting this afternoon and didn't want to be left alone. Since there were no Care Partners available on the BMT unit today, I didn't go back to Ronald McDonald House to grab a quick shower and do laundry. Since Tom doesn't want to wear hospital pajamas (who would?), he wears his own shirts and PJ bottoms. This means that I must try to keep up with it as best I can. Tomorrow is another day and hopefully Tom will be feeling better.

Tom received platelets this morning and his platelet count was 71,000 at 4 PM. So he won't need platelets today, but perhaps early tomorrow morning. His hemoglobin and hematocrit were fine and so he won't need any packed red blood cells tonight. Tom blood sugars have been stable so his insulin drip has not needed any adjustment. Tom can't wait until he can finally be unplugged from all these IV tubes.

Please keep Tom in your prayers. Please remember the other children here on Unit 4A. Some of them are facing some real challenges and need your prayers, too.

Ann

Sunday, November 30, 2003 9:08 PM CST

Day +4

It was sunny and relatively warm today (high 30's-low 40's). The snow was melting and lawns were now visible. Apparently a warming trend is predicted for this week, but the weather in Minnesota, like New England, can change in a flash.

We want to thank everyone who has left messages in the guestbook. Your love, support, and encouragement mean a lot to us. Please bear with Tom if you find that he hasn't answered his e-mail. He often doesn't have much energy to spare at this time.

Tom had a decent day. Dr. Orchard was in and again said that things are going in the right direction. Tom does have mouth sores, but they still are not so painful that he requires pain medication. We can be thankful for that. Tom's weight is going down due to the diuretic (Lasix) he is being given intravenously. The puffiness that he had has decreased significantly.

Tom received platelets around 6 AM and then was transfused with two units of packed red blood cells this afternoon. Linda, Tom's evening nurse, just hung more platelets. Tom is sleeping because of the Benadryl premedication he received. He also got some Ativan (IV) because he vomited earlier this evening. Ativan also makes him very sleepy and sometimes he gets it if he is having trouble falling asleep after waking to go to the bathroom.

Katie, another FA/BMT patient, was discharged today. Paul and I saw her at supper at Ronald McDonald House. She is 13 days post-transplant. Fortunately for Katie, her brother was her perfectly matched donor. We hope that Katie will continue to improve and return home with her family soon.

Although it's not very late, I'd better get some rest before I need to help Tom to the bathroom several times during the night.

Please keep Tom in your prayers.

Ann

Saturday, November 29, 2003 9:25 PM CST

Day +3

The sun was out all day today and the temperature made it into the 30's. It was a nice day to take a walk back to Ronald McDonald House for a break and to run some errands for Tom.

Tom continues to progress according to schedule. He has developed mouth sores and these are becoming more troublesome. The mouth sores are now more painful, but Tom feels not painful enough to warrant pain medication. He had a tablespoon of ice cream tonight and said that although it didn't have much taste, it did soothe his throat. Right now, all he feels like eating is only a spoonful or so of anything. From what I've heard, this is to be expected at this point.

Tom received a platelet transfusion this morning around 6:30 and another tonight around 7:30. The doctors want to keep his platelet count between 50,000 and 75,000 so he needs more frequent transfusions than most Fanconi Anemia BMT patients.

Paul and I went out this afternoon and picked up some small cans of Chef-Boy-Ar-Dee ravioli and spaghetti rings. Lately, Tom has enjoyed eating a can in the evening. With his mouth sores beginning to give him problems, I'm not sure that he'll be able to enjoy them. At least they'll keep until he feels better.

Tom also wanted some vegetable lo mein and pork fried rice today. Paul and I picked that up while we were out. Tom was only able to eat a few bites, but that's OK. Since I'm usually at the hospital 21 to 22 hours a day, the leftovers will provide me with several nice meals.

Tom has been sleeping a lot lately and he wishes that he could sleep through this whole experience. I can't say that I blame him! It will be so good to get home and sleep in our own beds in our own home. Our lives have certainly been turned inside out and upside down by this illness. When you talk with other families that we have met along the way and listen to their stories, you realize that you don't have it so bad. We find ourselves to be among the more fortunate in so many ways.

Well, it's getting late and I know that Tom and I will probably be up several times during the night.

Please keep Tom in your prayers.

Ann

Friday, November 28, 2003 8:16 PM CST

Day +2

It was a gray day here in Minneapolis again. Unlike back home at this time of year, the snow has not melted. Thankfully, the sidewalks are very clear and so walking is not a problem at all.

Tom received one platelet transfusion this morning and did not need any packed red blood cells today. He was quite sleepy from the 50 mg. of Benadryl that he received as a premedication so he slept quite a bit late this morning.

Dr. Orchard stopped in and said that Tom is doing well. He is starting to get some mouth sores, but he says that he is not in any pain from them. Dr. Orchard cut Tom's Benadryl order down to 25 mg. so that he isn't so sleepy all the time. (The teacher at the hospital will start working with Tom sometime next week so he will need to be awake when she comes.)

Around 11:30 this morning I took a walk to get Tom some chicken strips at Papa John's. When I got back, he was feeling pretty sleepy from the Benadryl, but he did manage to eat one strip. For supper he had half of a package of Ramen noodle soup and Gatorade. We need to work on improving his intake, but we'll take what we can get for now.

Although it's not very late, we are both tired. Tom is already asleep and I think that I'll go take it easy on the recliner.

Please keep Tom in your prayers.

Ann

Thursday, November 27, 2003 11:15 PM CST

Day 1

Happy Thanksgiving!!!!!

Today was bright, sunny, and not overly cold. When I went for a coffee in the cafeteria around 7:30 this morning, you could tell that it was a holiday. There were very few people about and the breakfast menu was limited.

Tom had a good day today. He didn't have any fevers and his blood sugars were within normal limits most of the day. Although he didn't like the turkey dinner from dietary, he did eat half of a slice of pumpkin pie.

Paul and I had Thanksgiving dinner at Ronald McDonald House. A team of very generous volunteers cooked a complete Thanksgiving dinner for the families at RMH. The food was delicious, but Paul and I missed Tom at supper. We knew just how much he enjoys a good turkey dinner. We did bring him some turkey and fixings and Tom just finished eating a slice of pumpkin pie from RMH's Thanksgiving dinner.

Although we are away from home this Thanksgiving, we do have a lot to be thankful for. Thanks to a very generous man, Tom now has a chance at a full and healthy life. We are thankful for the love and support of family and friends. We are also thankful for the friendliness and companionship of people we have met while in Minneapolis.

Please continue to keep Tom in your prayers.

Ann

Wednesday, November 26, 2003 9:03 PM CST

Day 0

Today was just a perfect day -- bright and sunny. It was certainly perfect for Tom's transplant. At this point, it has been snowing for about an hour. I have no idea what the weather forecast is for tonight or tomorrow. I'll just have to look out the window and see what's going on.

I finally met Dr. MacMillan today. She stopped in to meet us, but Tom was sound asleep. She thought that Tom was doing well. The radiologist reported that one of the adenomas on yesterday's ultrasound appeared slightly larger. He wasn't sure whether it truly was a little larger or whether the camera angle was misrepresenting its size. Dr. MacMillan said that since they were already aware of the adenomas and are keeping his platelet counts and hemoglobin up with transfusions, this should not be a problem. Any bleeding that he might possibly be having will resolve itself on its own.

Tom slept most of the day away. He received two units of packed red blood cells and platelets before his transfusion. He is premedicated with Tylenol, Benadryl (IV), and hydrocortisone (IV) before every transfusion and he gets very sleepy. I think that he is also trying to catch up on the sleep he lost while he was on chemo.

Tom was awake when Father Taillon, Bishop Hendricken High School's chaplain called. Father told me that Tom was remembered in the school's Thanksgiving Mass today. Then Tom spoke with Father for a little while. It was wonderful to hear that Tom was remembered in prayer by his classmates and teachers.

I went out for a pizza this afternoon around 2:30. It must have been somewhere in the high 30's this afternoon. It was really quite pleasant outside. Tom got a medium deep dish cheese pizza from Domino's. He ate about half of a slice, but at least it was something. Dr. Orchard, Tom's attending physician on the unit and the dietician want him to eat anything -- sugary goodies, junk food, and of course, real food. He needs to put something in his stomach every day so that it will be used to solid food when his TPN is discontinued.

Tom's transplant was scheduled to happen somewhere between 4 and 5 PM. It actually began around 5 o'clock. A Blessing Service was held before the transplant began. Tom read two passages from Scripture, I read the Family Prayer, and LaDonna, the chaplain performed the rest of the service. As part of the service, Paul, LaDonna, myself, and Carolyn, Tom's nurse, anointed Tom with oil. It was a brief but moving service. The transplant infusion began and was over very quickly. Tom received gifts and balloons from the staff on Unit 4A. He can certainly use the CD carrying case and Target gift certificate he received.

Uncle Ray called just after the tranplant had infused. Tom was feeling pretty good and was able to talk to Uncle Ray, Aunt Sarah, Sharon, and Ray Ray. He enjoyed hearing from them and was happy that they had called.

Sadly, one of the children on 4A died this morning. His name was Max and he was only 16 months old. Max had Hurler's Syndrome, a rare genetic disorder. Max lacked an enzyme that digests sugar and so sugar would deposit itself as calcifications on his major organs. He was 104 days post-transplant, but he had had many complications. Paul had gotten to know his grandmother over at RMH and this morning Paul met Max's grandfather who had just arrived in Minneapolis. Paul made him some toast and coffee and they had breakfast together. It seems as though many of Max's relatives arrived at RMH over the weekend to be with him and his family during this difficult time. Our thoughts and prayers are with them.

Tomorrow is Thanksgiving Day. We certainly have much to be thankful for, especially this year.

Enjoy the holiday tomorrow. We are with you in spirit.

Ann

Tuesday, November 25, 2003 10:01 PM CST

Day -1

The weather yesterday was sunny and nice. It had been overcast for so many days that I was wondering what the sun was looked like.

Tom's day was not the greatest. He wasn't able to sleep very much because of numerous bathroom visits and he was very tired all day. On top of that, yesterday was his last day of chemo and he was nauseous and/or vomiting until about 5 PM. Fortunately, he was able to take naps throughout the day.

Tom did miss a call from his cousin Suzanna and his aunts because he was sleeping due to the medication he was given to combat any reaction that might occur from either the platelet transfusion or the ATG he received. However, Tom was able to speak with Mr. Collicci, his French teacher from Bishop Hendricken High School. Tom was very happy to hear that he is being remembered in prayer by so many of his friends and classmates.

Paul took the shuttle over and stayed with Tom while I went back to Ronald McDonald House, showered, and did laundry. When I got back, Paul left to grab some supper at RMH and then hop a ride on the van to Target to pick up a few things for Tom. Although we came out with plenty of T-shirts and sweatshirts, it's easier for Tom to wear a button down shirt with his Hickman catheter. So Paul bought a couple of them for Tom to wear while he's in the hospital. I think that, once we are given clearance to leave the hospital, Tom will be more accustomed to his Hickman line and it will be easier for him to wear some of his favorite T-shirts and sweatshirts.

Today is Day -1. Tomorrow is known as Day 0. Thanks to the generosity of a total stranger, Tom will have the opportunity to live a normal and productive life. He will eventually no longer need transfusions, medications, and endless clinic visits. I don't know how rough or how smooth this road will be now, but Tom and I have talked about how we'll stick through it together.

Tom started his morning with a liver ultrasound to check on the blood flow in and around his liver. We don't know what the results are yet, but I guess you could say that no news is good news.

Tom had another sleepy day today. Although he is done with chemo, he still got ATG and platelets which required premedication with Benadryl. So he was very sleepy most of the day and didn't really "wake up" until about 7:00 PM.

I went back to Ronald McDonald House around 4:30 today for a quick shower and to pick up some of Tom's things. Before I left, I asked Tom if he was comfortable staying alone for a little while. He told me that he'd be fine since he would probably spend most of the time sleeping. Paul and I came back, checked in on Tom, and then went upstairs to the cafeteria for supper. We came down and Paul visited briefly and then returned to RMH.

Tom will start on TPN tonight. He hasn't been able to eat as much and as well as he should. By starting TPN now, Tom will not become weak because of inadequate nutrition. His blood sugars have not been as high as they were on Sunday, but he has needed IV Insulin today. At one point, his blood sugar was within normal limits so the insulin drip was stopped. Once he is on TPN, Tom will probably experience a rise in his blood sugars and need an insulin drip once again.

Please keep Tom in your prayers. Tomorrow is a very special day for all of us. I can't tell you what time the transplant will take place, since no one has that information yet. Pray for good weather so that Tom's donor's marrow can make it here without incident.

Ann

Sunday, November 23, 2003 8:52 PM CST

Day -3

It snowed yesterday afternoon into the evening. At times, the snow was wind-driven and at other times, it fell softly on your face.

Tom had a so-so day yesterday. Nausea and vomiting began to rear their ugly heads. They were kept at bay by medication, but that made Tom drowsy. However, he was pretty much awake when Aunt Sarah called. They had a nice chat and he even talked with his cousin Sharon.

Tom wanted an Arby's roast beef sandwich for supper last night. The hospital food just didn't appeal to him. Since he hadn't had very much to eat all day, I took a walk to Arby's to get his sandwich. He ate half of it and that was OK. His appetite is not the same since he has been on chemotherapy. This was his second day and he has only a few more to go.

Since Tom didn't want to be alone, Paul and I had a quick supper in the cafeteria. There were no Care Partners on the unit last night (due to the snow?) so Paul stayed with Tom while I took the shuttle back to Ronald McDonald House, picked up some of Tom's things, and had a quick shower. I walked back to the hospital amid a gentle snowfall. It felt wonderful just to be outside.

Today started out OK for us. It was snowing a little more heavily this morning, but the streets were plowed and the sidewalks were shoveled. I suppose that because of the weather forecast no Care Partners volunteered today. I asked Tom if he would be all right if I left around 11:30 this morning to get brunch, shower, and do his laundry back at Ronald McDonald House. He said that he'd be fine alone while I did this. The nurses told me not to worry and that they would keep an extra close eye on Tom while I was gone. I walked amid the snowflakes once again.

When I returned, Tom asked me for Cheesesticks from Papa John's. He said that he'd be OK by himself but "Don't take too long, Mom. I'm hungry." So, off I went. As I walked along, I could see that this storm was not going to be anything like the meteorologists had predicted. Even now, there's not much more than four inches on the ground and I can't believe how quickly the snow is being cleared away.

Tom ate only two of his cheesesticks and was exhausted. He is on medication to keep the nausea away and Benadryl and hydrocortisone to prevent a reaction to ATG and blood products. These medications are making him very sleepy. He is also taking a diuretic because his urinary output is down. Tom's evening nurse drew some blood and his blood sugar was 450. A repeat sample was taken and it was 330. So, Tom was started on IV Insulin. Since his diabetes is due to Methylprednisolone (an IV form of Prednisone), he will only need to remain on Insulin while on this medication. As I understand it, these problems are very treatable, temporary, and to be expected during his course of treatment.

Tom is sleeping now, but I must wake him to do mouthcare and to urinate. Mouthcare must be done at least four times a day and he must urinate every two hours -- even during the night. I know he won't like this, but he has been trying to do everything that is asked of him with very little fussing. I'll keep you informed.

Please keep Tom in your thoughts and prayers as we face the tough part of our journey.

Ann

Friday, November 21, 2003 3:13 PM CST

Day -5

First day of chemo.

Tom OK.

Ann

Thursday, November 20, 2003 7:51 PM CST

Day -6

This morning dawned bright and sunny in Minneapolis. Although it turned out to be partly cloudy later in the afternoon, temperatures soared into the low 60's! The weather forecasts are for much colder weather from now with snow making its appearance over the weekend. Minnesotans that we have talked with say that the weather does change very quickly so it's not really too different from our New England weather -- only colder and snowier for longer.

Tom received his one dose of radiation this morning. We went down around 11:30 AM (CST) and returned around 12:45 PM (CST). As I watched the technicians take repeated measurements and match them against the measurements that were taken last week, I thought of how strange this experience had become. Here we were destroying Tom's immune system, something that we had always been guarding and trying to build up. On face value, it doesn't seem at all logical, but in the larger scheme of things, it makes sense. Tom tolerated the procedure well and we settled in for the afternoon.

Around 2 o'clock Tom felt nauseous, vomited, and repeated this process several times. He was given Zofran before we left for radiation and then had Phenergan when he started vomiting. Nicole, one of the Care Partners on the unit, came in and asked if I wanted to take a break. I checked with Tom and he said he'd be OK with Nicole while I was away. So around 5:30, I took the shuttle back to Ronald McDonald House, ate supper, and did a load of laundry. I was back by 7:15 and Tom was resting. He was no longer nauseous and had not vomited while I was out. In fact, he's asked me to get him a snack when I'm done updating the journal.

Dad called while I was out and Tom was sleeping. Nicole took a message that said Dad wishes Tom well and hopes to see him tomorrow. I did speak with the social worker (who has been out since last week because of injuries suffered in a fall at home) to see if there was a way to check on Dad since we hadn't heard from him and were concerned about his health. Ellen had called us last night because she, too, hadn't heard from him and was worried. We need to work out some system that if Dad is sick, he can let us know. By not letting us know what is really happening with him, it can cause unnecessary worry.

Tomorrow is Tom's first day of chemotherapy. We are a bit apprehensive about this. We hope it goes well and that Tom is not too sick from it. I read a book by Tony Melendez called "A Gift of Hope" today. During Tom's freshman year, we attended a concert by Tony Melendez at Hendricken. The concert was very uplifting and this book is inspirational. It certainly helped me feel hopeful about this journey that we have undertaken.

Thank you for your thoughts, prayers, and words of encouragement.

Ann

Wednesday, November 19, 2003 6:04 PM CST

Day -7

We made it to Unit 3C and the OR today at 6:40 AM. We had a whole five minutes to spare! Actually, Tom was checked in and seen by a parade of doctors and nurses, so he didn't get into the OR until 8:06 AM. He did get platelets on his way to surgery and everything went well.

What a shame to waste a sunny day with temps in the 50's by being in the hospital for surgery. Tom was offered a pass to go out tonight, but he declined. He just wasn't feeling up to it. I'm back at Ronald McDonald House now updating this entry and I need to get back to Tom. I'll be picking up a steak for Tom at Applebee's which is near the hospital. He's looking forward to that.

Dad hasn't stopped by the hospital yet. The information desk and the switchboard know where Tom is because he's gotten telephone calls. If we don't hear from Dad soon, I think I'll talk to the social worker and see if there is some way to check and make sure that he's OK.

Tomorrow Tom receives radiation therapy. I was told that it would take place in the morning. We don't have a time yet and may not know exactly when until just before the session.

If you want to call Tom, his number is 612-273-0228. Tom's new address is posted on the front page of this website.

Please keep Tom in your prayers.

Ann

Tuesday, November 18, 2003 9:21 PM CST

It was a bright and sunny day in Minneapolis with highs in the 50's. Tomorrow and Thursday promise to bring us a warming trend with temperatures in the high 50's and even possibly 60's!

Well, our friends Donna and Mark left this morning for New York. We will miss their company but are happy that Mark is feeling better. They plan to look us up when they return at the end of December.

Before we left for clinic, I called the out-patient surgery department for any instructions regarding Tom's surgery tomorrow. I was told what he needed to do and that we needed to be on Unit 3C at the hospital by 7:30 AM. About 5 or 10 minutes after my call the telephone rang and Tom's OR time had been changed. We now need to be on Unit 3C by 5:45 AM! Tom is not the easiest person to get up in the morning, so this does indeed provide me with a challenge.

Tom went to clinic at 1:00 PM today to get platelets and a GCSF infusion. Everything went well and we were out of there very quickly. While at clinic Teresa Kivisto, our nurse coordinator, came by with some forms that needed to be signed. She told me that Dad was supposed to meet with her this morning for a BMT teaching session. He hadn't shown up and she was wondering if we had heard from him. I told her that we hadn't and she thought he might possibly stop by later in the day.

Tom called Dad around noontime or so and left a voice mail asking him if he wanted to join us at the Red Lobster tonight. Dad did call us around 4 o'clock or so and said that he liked that. We said to come by around 6 o'clock and we would go from here. (We needed tonight to be an early night for Tom since he must get up around 4:30 tomorrow morning.) Dad called us around 5:45 PM and said that he couldn't make it because he'd been busy on the phone and hadn't had a chance to shower and shave yet. Dad said that he would meet us on Unit 3C tomorrow morning at 5:45. To quote Scarlett O'Hara, "Tomorrow is another day."

Tom will go the BMT Unit post-op. I'm not sure if he will be able to leave the unit to go out for supper one last time before he begins the preparative regimen. Paul and I seem to recall being told that this was OK. We'll need to see just how Tom is feeling after surgery and plan accordingly. Tom will have a one-time dose of radiation therapy on Thursday, After this treatment, his immune system will be destroyed and he will not be able to leave his room on the BMT unit until after his ANC is within normal limits for three days post-transplant.

I will post Tom's new address at the hospital tomorrow. All of us appreciate your prayers and encouragment. Tom is holding up pretty well and has a good outlook. A positive attitude, strong faith, and optimal health will see him through this difficult time.

Thanks for checking in.

Ann

Monday, November 17, 2003 10:27 PM CST

Another gray day in Minneapolis! It was raining when we left for Tom's Dexascan this morning, but by the time we left the hospital at 12:30 or so, it had stopped. After all that he has been through so far, the Dexascan was a piece of cake for Tom. Some blood was drawn from his port and then he was scanned. The whole procedure took about 15 minutes from set-up to finish. Then we were off to the x-ray department for a left wrist x-ray to determine bone age.

We stopped at the BMT Clinic and asked Teresa about Tom's GCSF injections. You see, when Tom's Hickman line placement was originally scheduled for Tuesday, we had enough GCSF to last until then. However, because it has been rescheduled for Wednesday, we don't. So, Tom will go to clinic tomorrow at 1 PM to have the GCSF injected intravenously and to receive platelets. His platelet count today was 13,000 and his hemoglobin was 9.5.

Dad was supposed to get together with Tom today, but it didn't happen. When we got back from the hospital, Paul told us that no one had called and there were no messages on the answering machine. Since Tom really needed new sneakers and boots, we decided we had better go back to the Mall of America and buy those items. As it turned out, Dad did call after we had left. One thing that I have learned from this experience so far is that you don't just wait around for something to happen. You grab the bull by the horns and make it happen.

About the sneakers and boots -- it turns out that Tom really did need them. We had his feet measured at the shoe store and learned that he now takes a size 10 shoe. The boots and sneakers that he brought with him were a size 7 1/2 or 8. They were obviously way too small! Tom said that they didn't bother his feet, but I don't know about that.

We ate at the Stampede Steakhouse at the Mall of America. Tom had a 12 ounce ribeye steak and said that it was great. I am so happy that he is eating well and is able to do the things that he wants to do right now. In fact, he is downstairs shooting pool with Mark, a very nice 14 year old young man from New York. Mark and his mother Donna are leaving for home in the morning. We have been hanging out with them and will miss their company. Mark needs to come back at the end of December for follow-up and they will stop in to see Tom on the BMT unit.

I plan to call Dad tomorrow morning and see if he would like to join us at the Red Lobster for supper tomorrow night. Tom really wants to go and have a nice big lobster before his transplant. This will probably be the last time he will be able to be out for a long time and I want him to do exactly what he wants to do. Tom certainly loves his lobster and going to Red Lobster would make him very happy. I don't see how anyone could want him to do otherwise.

Tom has shown considerable courage and maturity through the work-up process. I am confident that he will continue to do so during transplant. He needs our love, encouragement, and support now more than ever. This will not be an easy process, but with God's grace all will go well.

I'll keep you posted.

Ann

Sunday, November 16, 2003 8:58 PM CST

It was another gray day in Minneapolis. Although it didn't rain, it was cloudy and damp. As a damp weather spirit-lifter, St. Joan of Arc Church's Youth Group served us homemade soup, grilled cheese sandwiches, and salad for lunch. There were four different hearty soups -- tomato, chicken rice, chicken noodle, and wild rice. The meal was delicious.

Dad didn't come by today because the weather forecast predicted a damp and drizzly day. He has to walk a couple of blocks to get here and then he and Tom would have to walk that distance to get to the Washington Street area where "all the action is". Dad felt that it would be better to stay in and see Tom tomorrow.

At this point, Paul and I decided that the three of us should take the opportunity to go the Mall of America again. It was not very crowded this afternoon so I didn't feel as though Tom's health would be compromised by being in a crowded environment. We did a little shopping and had supper at the mall. The mall closes at 7 PM on Sundays so we didn't get a chance to look at some new sneakers and boots for Tom. We will try to go back tomorrow or Tuesday to pick up these items for Tom.

Tomorrow Tom will have a Dexascan as part of a study to determine how much bone loss he has as a result of being on steroids. At first Tom didn't want to participate in this study because it was just one more thing to do and "he didn't have to if he didn't want to." I reminded him that he and many others could benefit from this study. I told him that it was better to find out now if he has suffered any bone loss and to correct it while it is a small problem rather than wait until it becomes a major issue. In any event, we will be at the Masonic Day Hospital at 9 AM tomorrow for the Dexascan and then the day is our own.

Please keep Tom in your prayers.

Ann

Saturday, November 15, 2003 12:28 PM CST

First of all, I want to thank all of you who have written in our guestbook. Your messages of love and enocuragement mean so much to Tom and all of us. It's a cloudy and somber day here in Minneapolis with rain/sprinkles predicted for later today. The projected high temperature is between 43 and 47 today -- very much like home.

On Thursday, Tom had pulmonary function tests (PFTs) done followed by an echocardiogram. He also had blood drawn for a CBC and type and cross-match. We did a lot waiting between events, but by showing up ten to fifteen minutes earlier for each test, we were able to be taken a little sooner rather than later. So, we got to come back to RMH that much sooner.

Dad arrived sometime during the day on Thursday. He is staying at Dinnaken House, which is very close to the hospital. He was supposed to take Tom out for supper, but that fell through because he was trying to acclimate himself to Minneapolis. However, he did say that he would take Tom out after clinic on Friday.

On Friday, we met with Dr. Baker and Teresa Kestivo, the nurse coordinator to go over the "game plan". All Tom's tests came back negative for any problems and there were no surprises for any of us. The three liver adenomas are still there, but the doctors have a plan for any bleeding that may occur because of them. The usual transfusion cut-off point for platelets during transplant is 10,000. In Tom's case it will be between 60,000 and 75,000. The higher cut-off point will lessen the chance of major hemorrhaging due to the effects of the chemotherapy and radiation. Tom will most likely be transfused more frequently than most Fanconi BMT patients, but that is OK with me.

Tom's hemoglobin was 7.5 on Thursday, so he was transfused with two units of packed red blood cells in clinic yesterday. The red cell transfusions are run in over one to one and a half hours here in Minneapolis. It cuts our waiting time in half. It was nice to get out of the clinic at 3 PM with the sun shining and the temperatures in the high 40s.

During Tom's transfusion, Teresa Kestivo told us that Tom's admission date has been changed to Wednesday, November 19. On that day, he will have his Hickman catheter placed and will be admitted to the BMT unit post-op. We will let you know what Tom's new address and phone number will be as soon as we find out.

This weekend is a free weekend! Tom has nothing scheduled medically. He is supposed to go with Dad today, but we haven't heard from him yet as to when and where. Tom wants to go back to the Mall of America and we plan to go there on Monday or Tuesday during the day. The infectious disease doctors don't want Tom in among crowds much and we figure that a day at the mall during its slower time would be perfect.

I'll update again tomorrow.

Please keep Tom in your prayers.

Ann

Wednesday, November 12, 2003 9:27 PM CST

It's been quite a while since I last updated this journal. The days since our arrival in Minneapolis have been very busy. It's incredible how time flies by when you have a full schedule.

On Monday we had our first visit to the Bone Marrow Transplant Clinic. Everyone was very friendly and competent. We moved right along through the initial part of Tom's work-up. We met Dr. Baker who is the staff doctor who will see Tom in clinic and also several of the nurses who will be take care of Tom when he comes in to clinic. We met with Theresa, the nurse coordinator who explained what will be happening this week. There were numerous vials of blood drawn and an EKG and chest x-ray were taken. We also had a consultation with a nurse from the cardiovascular surgery department. A doctor from this department will be placing Tom's central line (Hickman catheter) in next Tuesday and she went over what we will need to do prior to admission.

On Tuesday Tom had more blood drawn and a bone marrow aspiration and biopsy done. He came through the bone marrow biopsy with flying colors. Tom slept for two hours after the biopsy and when he awoke, he said that he felt fine. He didn't complain once of any pain and that it unusual. He said that whenever he has a bone marrow biopsy done at home, he always has pain for several days and often needs Tylenol for it. We were all so very pleased that he had no pain and was walking normally (not hunched over) right away. As he's gotten older, this procedure seems to bother him more.

While Tom was in the OR, we met with our social worker, Stacy Stickney-Ferguson. It was nice to finally attach a face to a name. We had a nice chat and she told us to come to her with any questions or concerns we might have while we are here.

Today was another full day at the hospital. We started out with an Infectious Disease consultation at 8 AM and then on to Radiation Oncology for another consultation and measurements at 10 AM. Tom's sinus, abdominal, and lung CT scans were sheduled for 1 PM, but we went early (12:30 PM) and were able to get them done sooner. Then it was back to clinic to meet with Theresa. She gave us an entire looseleaf notebook filled with the tentative "game plan" for Tom. I also had to fill out numerous consent forms, some of which I had filled out five years ago for studies with Dr. Auerbach at Rockefeller University in New York. It seems as though they have a habit of losing things in New York -- blood and consent forms.

This afternoon we got a call from Dr. Baker at the BMT Clinic who told us that Tom doesn't have to go in for an MRI tomorrow. The CT scans that were done today gave the doctors enough clear pictures that an MRI is not necessary. Tom was ecstatic when I gave him the news! He really hates getting up in the morning and he did not relish the thought of getting up early enough so that we could get to the hospital by 7 AM for this test.

Well, that's all for now. Thank you for your prayers. Please check in again.

Ann

Saturday, November 8, 2003 8:55 PM CST

Well, we finally arrived at the Ronald McDonald House in Minneapolis around 4:45 PM CST. We started on our journey on Thursday morning and had a great, but tiring, trip. It rained intermittently on Thursday, but it was sunny on Friday and Saturday. The traffic was not bad at all. We passed through the Chicago area last night and there was quite a bit of traffic though. I suppose that goes with the territory of every large metropolitan area.

We were warmly received here by Desiree, the weekend house manager. RMH is a very nice facility. Our room is great and we are very pleased. Tom really likes the facility and would rather stay here post-transplant than in an apartment. We will let our social worker know this when we meet her next week.

Tomorrow we are off to the Mall of America. It should be a very interesting experience. At least Paul has his scooter with him so he will be able to negotiate the mall concourse easily. He'll probably leave us in the dust more than once!

On Monday we have our first consultation appointment for Tom. I can't imagine exactly what that will be like. I pray that all goes well next week.

Good night.

Ann

Tuesday, November 4, 2003 11:14 PM EST

Today was Tom's last appointment at the Tomorrow Fund Clinic at Hasbro Children's Hospital in Providence before we begin our journey to Minnesota for transplant. Tom's platelet count was 11,000 and so he received his weekly platelet transfusion. His hemoglobin was 10.1 so he will not receive any packed red cells at this time. His ANC was 2400 today and we are thankful for that.

I can't tell you how supportive everyone at clinic has been over the last five years. It was a happy-sad occasion as we said our good-byes to this group of wonderfully dedicated people. Tom and I are happy to be taking a break from what has become our routine and look forward to what will become a better life. On the other hand, we are sad to be leaving our friends and family members and face a time that will prove to be the most challenging that we have yet experienced.

Please remember Tom in your prayers.

Ann, Tom's Mom

Monday, November 3, 2003 9:21 PM

This morning we attended Bishop Hendicken High School's Mass of Remembrance at St. Kevin's Church in Warwick, Rhode Island. It was a sunny morning with temperatures in the 60's (very, very unusual for November in New England). It was quite a sight to see 1000 young men and their teachers walk in silence and with reverence the half mile from the school to the church.

As part of the Mass, Father Taillon, the school chaplain, asked anyone in the church who was facing any physical challenges to come forward for the Anointing of the Sick. Tom and several teachers came forward and were anointed and received a special blessing. Then Tom was given a rosary to take with him and pray with as he journeys into the unknown world of a bone marrow transplant.

As I sat in the church, I watched the faces of Tom's classmates register shock and surprise that he is so sick. Until today, Tom had not told any of his friends at school that he has Fanconi Anemia and needs a bone marrow transplant. Tom's friends from elementary school do know of his diagnosis, but they only learned of his impending transplant this past weekend.

Tom was very moved by the outpouring of support and promises of prayers for him that he received from his fellow students. This experience certainly made Tom feel loved and uplifted by his "Hendricken family". Actually, I think that those of us who were in attendance had these same feelings.

Paul (Tom's stepfather) and I will continue to tie up loose ends here. Tomorrow is our last clinic day at Hasbro Children's Hospital in Providence. Tom will receive platelets and "get tanked up" before we leave on Thursday. Hopefully, he will not need any packed red blood cells until we are in Minnesota. Since today was his last day of school until after transplant, Tom will now enjoy some time with both sides of his extended family in Rhode Island and Connecticut.

Our journey is about to begin and we take that first step with faith, hope, and trust in God.

Ann Anderson, Tom's Mom

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