History

Journal History

Thursday, September 21, 2006 9:57 PM CDT

Jeffrey would feel very proud of his little brother today. Luke turned 1 and the world is such an amazing place for him. He takes us outside and points to the birds, planes, swaying trees, and "barks" when he hears the dogs bark outside. He is walking more and more each day and is so excited to explore the world around him. He reminds me so much of his siblings and especially Jeffrey. Jeffrey loved to be outside and to examine everything. The littlest bug would catch his eye and the adventure would begin. Jeffrey was a little rascal as well with his teasing and his "taunts" at his sisters. I see that little mischievous behavior with Luke and it really makes me laugh (not always out loud since I don't want him to think that hitting his sisters or snubbing his nose at you is appropriate behavior). Luke keeps us busy and lifts our spirits. It is nice to have our children to keep us focused on what is truly important.

Random thought:

The day that Grammy and PaPa brought home Beau will always be a treasured memory. That little two pound puppy was scared and so very shy but after a little while it was Jeffrey that he came to cuddle. (I wonder if Jeffrey hid treats in his pocket just to make his sisters mad?) Without a doubt a bond had been made between the two boys. A few days prior to Jeffrey's passing, he asked to see Beau before he "went home". I believe in my heart that Jeffrey had a heart to heart with Beau and asked him to take care of us. Beau has done just that. He is a sweet puppy and a constant reminder of our loving little guy. We miss you, Jeffrey!

Tuesday, September 19, 2006 11:59 AM CDT

I have made the decision that this week of entries will be my last. Caring bridge and all of the people who have visited this site have been such a huge part of our lives that I find the decision to be a difficult one. I never envisioned that I would write my own personal thoughts down for the world to see and that I have kept this up for 5 years. We have greatly appreciated the guest entries and all of the support that they have provided to us but I think it is time to say farewell. As a friend said in her own website, "the three year anniversary or the twentieth year--the feelings remain. What changes is how we lead our lives." Stephen and I have chosen to move forward with our lives and hold onto each of God’s glorious moments. We have Luke’s first birthday upon us, two girls who are excelling, family and friends that love and support us and the love of God. We will take each day as it comes.

Random thoughts:
My head has been going in circles that last couple of days with thoughts of Jeffrey, his diagnosis, his days here on earth and then his death. One memory that surfaced today was the day that he was diagnosed. It was October 31, 2001. I will always remember the doctor's words after Jeffrey's bone marrow aspirate. "Your son has leukemia but it is the good kind." I wanted to ask- Could you please define good for me because Cancer is far from good? It is not like my son has a rash and with a little ointment it will go away. He has to be on chemotherapy and possible radiation. WHO ARE YOU KIDDING?!!!

Life takes many twists and turns. Today I find myself thinking about our little angel and the task that he was given while here on Earth.

Luke 12:48b, “From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked.”

Thursday, August 17, 2006 8:30 PM CDT

Today I visited another website and found these quotes and I wanted to share them. "Finding Joy No Matter What" by Kay Warren---

JOY is:
“The unshakeable assurance that God is in control of all the details in my life. It is the quiet confidence that ultimately everything will be alright; and the determined purpose to praise God in all things.”

She went on to explain that there are 5 steps to put JOY in your life . . .
1. Find the humor in each day and take time to laugh.
2.Be thankful and practice gratitude
3.Be a "giver" and not a "taker"
4.Live in the moment
5.Find the "bless in the mess"

And she went on to explain that "Grief is inevitable but misery is optional." And we need to trust God that we are going to be joyful . . .
- in spite of
- in the middle of
- even if!

I had the opportunity to meet up with one of my dear friends from high school. We had not seen each other in a long while and she was unaware of our loss. Through her tears, she said, you are doing so well but I am sure that you have been through Hell and back. It struck me that we are doing well but a lot of that has to do with how we CHOSE to handle things. It was a conscience decision to get up each morning and to find the beauty of each day, it was our choice to shield our pain and try to make a difference, it is our choice to smile at the memories of Jeffrey and speak of him openly and speak of him often. We choose to live and love and not let the grief take us down to our knees. Trust me, it flattens us at times but we have learned to get up, brush ourselves off and move forward. Thank you, God!!

As we look forward, October 7 brings us our FIFTH Light the Night that we will be participating in. Wow! We hope you will join us in making a difference in the lives of others either by joining our team or making a cash donation. We are still hopeful to help find a cure.

Jeffrey we love you!!

Sunday, June 11, 2006 8:58 PM CDT

I thought I better update everyone about Angel Kisses. Our event this year was again a huge success. Thank you to our organizers, our sponsors, our participants and also to our families who helped us pull this off once again. We had over 500 participants and raised $20,000. It amazes me each year but I know that the Lord is making it happen. Thank you!!

My next update will be about Light the Night. I hope you will mark your calendars for October 7 in Reston for another great event.

My heart is so heavy today. I have been reading some other websites of families walking this terrible journey of childhood cancer and my heart aches for these families and also for my son. I would do anything to hold him in my arms and know he is ok. There is not a day that goes by that I don't think about him and wonder. I MISS HIM TERRIBLY!!! Please continue to keep us in your prayers so that we may face each day with strength and dignity. We appreciate your support.

Wednesday, April 12, 2006 4:27 PM CDT

Luke had his first haircut on Sunday. I had promised myself that I would wait longer with him than with Jeffrey but I did not make it. He is such a beautiful baby (just like my other 3) and people kept calling him a girl. I got tired of it so I caved. Oh well, I can now way that both of my sons had their very first haircut at 6 months.
I have included a picture of Jeffrey and one of Luke at the exact same age (each after their first haircut).

Our Angel Kisses 5K is getting closer so mark your calendars for May 14th!

Tuesday, April 11, 2006 4:11 PM CDT

Luke had his first haircut on Sunday. I had promised myself that I would wait longer with him than with Jeffrey but I did not make it. He is such a beautiful baby (just like my other 3) and people kept calling him a girl. I got tired of it so I caved. Oh well, I can now way that both of my sons had their very first haircut at 6 months.
I will try to include a picture soon.

Our Angel Kisses 5K is getting closer so mark your calendars for May 14th!

Sunday, March 5, 2006 1:35 PM CST

Luke has turned over and is now trying desperately to sit up. He is also interested in food and wants to try everything. He is growing much to quickly for our taste.

Angel Kisses is only 2 months away and we are really underway with the planning and executing of this event. If you are interested in sponsoring this event or would like to register to participate, please visit www.angelkisses-5k.org Hope to see you there!

Wednesday, March 1, 2006 1:08 PM CST

Luke has learned to roll over from his back to his stomach. Wow!!!

Angel Kisses is only 2 months away and we are really underway with the planning and executing of this event. If you are interested in sponsoring this event or would like to register to participate, please visit www.angelkisses5k.org Hope to see you there!

Tuesday, February 7, 2006 12:31 AM CST

Today is Tuesday and I still find myself thinking of Tuesdays as clinic days. I miss Jeffrey constantly but find that some moments are just harder than others. The days were long and tiring but I would give anything to be taking him to his appointment today.

Life is continuing with new adventures. Luke is learning to raspberry and loves the sound of his puckered lips. What a sight! The girls look forward to coming home to him each day and love his little sounds and his big smiles when he notices them. Luke is also beginning to try to sit up in his carseat. I guess it will only be a couple more months before he is sitting up unassisted. Wow, time really does go quickly! We are comforted by our many blessings.

The Third Annual Angel Kisses 5K will be held on Mother's Day, May 14. If you are interested in participating or would like to become a sponsor, please contact us at angelkisses5k@verizon.net or visit us at www.angelkisses-5k.org. We look forward to another successful event.

Saturday, December 31, 2005 2:15 PM CST

Happy New Year! As we celebrate the end of 2005 and the beginning of a new year, Angela and Meghan decided on a few blessings that they are thankful for:

1. Luke's birth
2. Daddy's job with Sprint
3. Time at the beach
4. A successful Angel Kisses
5. Jeffrey's Journey being #1 in Reston ( Again!)
6. Time spent with family and friends
7. A successful move for MomMom and PopPop
8. A clean bill of health for PaPa
9. A new house
10. Love of God

We are truly blessed and look forward to 2006 where we can continue to spread God's Word through our many activities. We look forward to another Angel Kisses this Mother's Day ( May 14) and are anxious to see Luke's development. It should be an exciting year of firsts.

Tuesday, December 6, 2005 9:06 PM CST

Today is the Feast of St. Nicholaus. The girls and I discussed that he became the Patron Saint of Children and it made me wonder if Jeffrey spends any time with him. I have so many thoughts about Jeffrey during my days. Ever since Luke's birth, I have been inundated with memories of Jeffrey and I find myself wondering what it is like to be in Heaven and what feelings Jeffrey feels, if any. Does he miss us? Does he get scared, angry, sad, etc? I also find myself looking at Luke and wondering if he already knows Jeffrey. It is sad and also joyful that we have someone new to tell Jeffrey's story to but I also feel anger. We will be introducing Luke to grief and loss at such an early age. Our journey of faith continues. Grief is like an onion and we have just peeled off another layer to reveal something even deeper. I thank God for his wisdom and support to help guide us through this journey. We know that we couldn't get through it all without Faith.

I have put new pictures on the website for all to enjoy.

Sunday, September 25, 2005 4:42 PM CDT

Today has been filled with many tears- some of sorrow, some of joy. My heart aches for Jeffrey. It makes me sad that he will not be here physically to help guide and nuture Luke as a big brother should - We know that he would have been a great big brother. We, however, know that Jeffrey is still very much a part of Luke's life and will forever be his Guardian Angel. Luke is a lucky boy to have two sisters to love him and an angel brother to watch over him. He is loved!

We look forward to Light the Night knowing that we are making an impact in the fight against blood cancers. Come join us or if you are unable to- donations are still greatly appreciated.

Wednesday, September 21, 2005 2:21 PM CDT

Luke Charles was born today at 11:00 a.m. He is 22 inches long and weighed 8 lb. 3 oz. He looks exactly like his big brother, Jeffrey. Look on recent pictures.

Wednesday, August 31, 2005 8:26 PM EST

Only 1 month to go and Jeffrey's Journey is already rockin!

If you would like to walk with us on October 1st, in Reston Virginia, for our 4th Annual Light the Night Walk, please register at www.lightthenight.org and be sure to type in "jeffrey's Journey" to the team name. It is shaping up to be a memorable evening. Hope to see you there!

Donations towards Light the Night can be made either by check or by online donations. Please visit www.lightthenight.org and access our website. You just type in my name (Tasha) and the location (Reston). It is fast and easy!!!

The Golf Tourney will take place at South Riding Golf Club, South Riding, VA, on October 1 beginning at 1 pm. Please come, bring a foursome and join the fun! All proceeds will benefit Jeffrey's Journey. You can contact Ken Isaacman at KIsaacman@cox.net for additional information.

Keep up the good work!

Wednesday, August 31, 2005 8:53 AM CDT

The countdown begins! October 1 is just around the corner with many exciting events surrounding it.

If you would like to walk with us on October 1, in Reston Virginia, for our 4th Annual Light the Night Walk, please register at www.lightthenight.com It is a rewarding evening. Hope to see you there!

Donations towards Light the Night can be made either by check or by online donations. Please visit www.lightthenight.com and access our website. You just type in my name (Tasha) and the location (Reston). It is fast and easy!!!

The Golf Tourney will take place at South Riding Golf Club, South Riding, VA, on October 1 beginning at 1 pm. Please come, bring a foursome and join the fun! All proceeds will benefit Jeffrey's Journey. You can contact Ken Isaacman at KIsaacman@cox.net for additional information.

More updates later!

Thursday, August 18, 2005 3:14 PM CDT

Only 6 weeks to go until our big events!! We are really counting down the weeks until Baby Virostek arrives. Today the girls and I put together the mobile and ironed the dust ruffle. Having this blessed event in September is a Godsend. My mind begins to wander to the sadness and anger of Jeffrey's death and then the baby kicks. We are very thankful for the "distraction". The pain remains but we are able to smile in the midst of it. I believe that is what it is all about.

The second event is Light the Night. We are making a lot of progress and appreciate the support from our family and friends. We welcome you to walk with us (To register - visit www.lightthenight.org) or make a financial donation. There are two ways to donate:
1- Send us a check at our home address or
2- Make a donation at www.active.com/donate/ltnAlexan/ltnTVirostek
It is fast and EASY!!!

We look forward to updating the website with exciting information about the baby and our success with Light the Night. Stay tuned!

Monday, August 8, 2005 7:28 PM CDT

There is never a day that goes by that our little guy is not in our thoughts. I find that as this summer whizs by that my thoughts of September are bittersweet. We will welcome a new member to our family but life will still be so incomplete. We know these feelings will not end and we grieve for that reason. I recently read an article that talked about the weight of ones grief. It can be described as a load of feathers, a load of wood or a ton of bricks. As one gets stronger, the grief gets lighter to hold. I have thought long and hard about this analogy and have decided the weight depends on the moment. We have grown stronger but we still fall to our knees. It is hard to believe that this fall will bring about the second year without him physically present with us. It brings about a heavy heart and also a great frustration. I am ready for him to come home!

The girls are preparing for a yard sale this weekend to benefit the Leukemia and Lymphoma Society. Angela and Meghan have each set a goal this year for Light the Night and they are determined to reach those goals. Light the Night will be held on October 1 and our team is getting established with our fundraising goals. We hope to be the #1 team again this year. Way to go, Jeffrey's Journey!!

Friday, July 15, 2005 4:27 PM CDT

Today marks two weeks since our move to a new home. We have been living under drywall dust due to work being done on the basement but other than that we are getting settled. The house is becoming "HOME".

This Sunday, we will have a team KICK OFF to get excited about this year's Light the Night. "Jeffrey's Journey" will once again be represented on October 1 in Reston, VA. Our goal will be to raise $20,000 in Jeffrey's memory. I know that he would be smiling so we will do it with a smile :) Maybe our new little one will be present at the walk - due date is September 29 so it could be close.

Angela and Meghan along with Stephen participated in a Swim-A-Thon to help raise money for the Leukemia and Lymphoma Society. Angela swam 84 lengths, Meghan 52 lengths and Stephen 110. It was a lot of fun for all of them and they raised about $800 for the Society. Way to go, Virostek Swimmers!!
Last night, Angela and Meghan held an ice cream social for our team and raised about $120 so we are well on our way to meeting our personal and team goals. Angela has set a goal for $1000 - Whoa, Nelly! I wish her lots of luck in meeting her goals. Good luck, Angela.

Please check back for future updates on Light the Night and the arrival of Baby Virostek. :)

Tuesday, June 7, 2005 10:26 AM CDT

It has been a month since Angel Kisses and it seems like a year. I can only speak for myself but I miss the planning and negotiating that surrounds the event's preparations and the day was again PERFECT!! The committee and our many additional volunteers once again achieved success with a smooth and fabulous race. We had over 600 participants again this year and raised over $20,000. WHOA!!!! Thank you to everyone who contributed to the success of the event. I hope you will mark your calendars for next year - Mother's Day 2006.

Life in the Virostek Household is never dull. We are in the process of packing, planning for the new house, softball, swimming, piano recitals and end of the year activities at school. I am exhausted just reading what I have written. Life is keeping us very busy right now.

Along with all of these activities, we are once again preparing for LIGHT THE NIGHT 2005. It will be held on October 1, 2005, in Reston, Virginia and "Jeffrey's Journey" will be participating. Mark your calendars and get ready for another fun and inspiring evening.

Saturday, April 30, 2005 1:16 PM CDT

We are gearing up for the 2nd Annual Angel Kisses Run/2K Walk on Mother's Day. We are looking forward to another spectacular day with friends and family while raising money to help other families fighting cancer. The local paper did a great article about the event. You can view the article at www.connectionnewspapers.com You can also access our website at www.angelkisses-5k.org to register for this event.

This Spring brings about a lot of joy mixed with continued sorrow. Jeffrey is talked about daily and the girls constantly express how much they miss him. I am glad that they continue to talk and express their feelings about their loss. Angela has written many poems and stories about her brother--expressing his influence in her life. Meghan talks about his presence in her life with quirkly little stories about him and their experiences together. We get a lot of "remember when" or " do you think Jeffrey is doing...in Heaven". It brings me comfort to know that they feel comfortable talking about him. He is their inspiration.

Other dates to remember:

Light the Night: October 1, 2005 in Reston, Virginia.

Saturday, April 30, 2005 1:01 PM CDT

We are gearing up for the 2nd Annual Angel Kisses Run/2K Walk on Mother's Day. We are looking forward to another spectacular day with friends and family while raising money to help other families fighting cancer. The local paper did a great article about the event. You can view the article at www.connectionnewspaper.com You can also access our website at www.angelkisses-5k.org to register for this event.

This Spring brings about a lot of joy mixed with continued sorrow. Jeffrey is talked about daily and the girls constantly express how much they miss him. I am glad that they continue to talk and express their feelings about their loss. Angela has written many poems and stories about her brother--expressing his influence in her life. Meghan talks about his presence in her life with quirkly little stories about him and their experiences together. We get a lot of "remember when" or " do you think Jeffrey is doing...in Heaven". It brings me comfort to know that they feel comfortable talking about him. He is their inspiration.

Other dates to remember:

Light the Night: October 1, 2005 in Reston, Virginia.

Monday, April 11, 2005 4:42 PM CDT

Easter was a joyous time for us this year. It was a reminder that Jeffrey has a new beginning and his heavenly life has just begun. We miss him terribly and the pain never goes away but we can feel the joy of life and the love that surrounds us. We also talked a lot about Jeffrey and his love of Easter egg hunts. A few that occurred in the hospital are still some of our favorites. Our moments together continue to bring us smiles.

Along with the many Easter activities and adventures, the Virosteks have embarked on another new adventure. We have purchased another home in our neighborhood and will be moving in the beginning of July. We will also be bringing a new addition into this home in September. God really had a plan and we are thrilled. Angela, Meghan and Jeffrey will have a new sibling to love. Stephen and I will have another blessing to adore and we are esctatic! Please keep us in your prayers for a healthy pregnancy and the birth of a healthy and happy baby.

Saturday, April 2, 2005 9:54 AM CST

I love this picture of Jeffrey and Austin, our wranglers rustling up some grub. They were always so cute together- the very best friends. What a team!!!

Wednesday, March 9, 2005 3:18 PM CST

I have had so many thoughts on my mind but just have not been able to articulate what I am feeling. This month marks 18 months since Jeffrey went to Heaven. It fills me with a lot of anger to think that he has been away from us for so long. I am not really sure why the anger crept in at this point, but it has. I know that the past few days both girls have talked a lot more about missing Jeffrey and wishing he were here to explore life with. That makes me sad too. I wish that I could wave a magic wand and bring back their little brother. I hate for them to feel such pain and sorrow.

It is true that time helps the heart. Stephen and I do not continue to spend hours after the girls go to bed talking, crying and wrestling with our emotions and the why of it all, but the topic is still brought up frequently with great pain in our hearts. Jeffrey will forever be missed. I would like to say that I long for a day where all of my feelings are of complete joy but I am not sure that would ever feel right. I want to remember my son and his journey because that is who we are and that is who he was. We are forever changed and I pray that we will continue to persevere and endure. I think that is what we have been called to do.

I am glad that people continually bring up Jeffrey. It is such a relief to be able to openly talk about him and also hear that he is on other people's hearts as well. It comforts the broken soul to be able to let out those feelings and know people understand. Thank you.

Friday, February 11, 2005 7:06 PM CST

This week has been a hard week for poor Angela. She has been home from school with all of the syptoms of the "flu". It has not been fun for her, but we have had some quality Mommy-Angela time. I think she is stir crazy now, but doesn't quite have the energy to do anything except lay around. It has brought back many memories of taking care of Jeffrey. My days really do slow down and my focus is on my sick child. I thank God that it was just the flu and nothing serious.

My heart has been very heavy with memories. There are days were our loss really catches me off guard. I will be walking back from school and think I am missing someone, I will turn around thinking I hear Jeffrey's voice or I will catch myself looking at a picture and realize that a picture will never be taken again with my little boy. I realize that this is "normal" for a mother to grieve for her child, but it doesn't make the pain any better.

On a lighter note, our Angel Kisses preparations are on the way. We have already started getting sponsors and are very excited about this year's race. I am sure it will be fabulous again this year. Come out and join us on May 8, 2005.

Friday, January 14, 2005 12:30 AM CST

It is that time again to update everyone about some dates to write on your calendars:

May 8, 2005 at 8 am the SECOND ANNUAL ANGEL KISSES 5K Run/2K Walk will be held in our Poplar Tree Community. Come out and join us for a great cause-- Helping Families Fighting Cancer. If you would like to help sponsor this event, please contact Tracy Rickard, Angel Kisses Coordinator, at 703-815-5805 for more details.

October 1, 2005 Reston Light the Night. We will be forming a team and hope you will join us for a great night of food, fun, and entertainment. More details to follow.

Wednesday, January 5, 2005 7:14 PM CST

January 6, 1999, Jeffrey Douglas Virostek entered this world. It saddens us all that we will not celebrate his 6th birthday with him. We will honor his birthday, however, by attending Mass, eating some whop-op and cake cakes ( pancakes and syrup as Jeffrey would say at the age of 18 months) and cake and ice cream after school with some of Jeffrey's favorite neighborhood buddies--Austin, Georgia, Brooke, Alexandra, Alex, Emily, Emily T, Jenna and Ashley. We will honor a little boy who stole our hearts and will be forever remembered as a fun-loving and special little friend, brother and son.

Happy Birthday my sweet angel!

Tuesday, January 4, 2005 10:50 AM CST

I thought with Jeffrey's birthday coming up on Thursday, I would change the background. I hope to get the slide show back on by then as well.

Christmas and New Years were spent quietly with family and friends. At one point, Meghan said that it didn't feel like Christmas because Jeffrey wasn't present. Our hearts still ache with his absence but we move forward.

Today, I have a very heavy heart. Please pray for our friend, Carol. She has just been diagnosed with uterian cancer and will be going in for surgery next week. Please pray for God's healing and love to surround her and her family during this difficult time.

Friday, December 24, 2004 8:31 AM CST

I wanted to wish everyone a Blessed and Merry Christmas!

This year finds us home celebrating with family. This season brings us joy but also much sadness. Our routines and traditions seem incomplete without our beloved little Buddy Boo. Today we will place a wreath of remembrance at the gravesite. We have also placed items under the Christmas tree that bring us feelings of happiness about the time spent with Jeffrey. We have a motorcycle, a helmet, pennies, his Redskins baseball cap, a cowboy hat, a baseball mitt, goggles, and a watch. He is a very special angel and we are thankful that we were chosen to love and care for him.

As our prayers end each evening - "I am thankful for a wonderful day, a wonderful day, and a wonderful day. Mommy, you forgot to say you were thankful for your children."

" I am thankful for my children!"

New photos in photo album.

Friday, December 24, 2004 8:31 AM CST

Friday, December 10, 2004 8:59 AM CST

We have had a couple of great moments recently. Jeffrey has been visiting many of us in our dreams and it is such a joy to feel his presence. The holiday season can be especially difficult and we thank God for our strength to get through these days. It is difficult to be away from Jeffrey during this holiday season but we move ahead. We have decided this year to put something under the tree that reminds each of us of Jeffrey. If I could, I would put a swimming pool. He loved swimming with his blue goggles and fabulous long swimming suit. It was a sight to behold. Our summers were always filled with fun and laughter and will always be a great reminder of what life is all about - God's Glory.

There are so many children fighting childhood cancers right now. We pray for Ryan S, Ryan H., Cedric, Christopher, Leah and her chronic GVHD, Catie and her chronic GVHD, Vincent, and all of the families who have lost their children to this dreadful disease. We understand this journey and pray for you, grieve with you, and support you. May God wrap his loving arms around you always.

Sunday, November 28, 2004 12:49 AM CST

Our Christmas Angel has appeared again. We woke up to a jar of pennies - pennies from Heaven - in our mailbox this morning. We knew that some little angel must have been around since there was a big red bow on our mailbox. Meghan ran out and eagerly opened the gift and then put the pennies with the ones sent last year. Advent is about Hope. Thank you to our Christmas Angel - you have put joy in our hearts.

Tuesday, November 16, 2004 6:45 AM CST

Today's update is going to be short but SWEET. (I will be putting the slideshow back up so no worries.)

On Sunday, the National Capital Area of the Leukemia and Lymphoma Society held their "Thank You Party" for the Light the Night team captains. As we all know, the Reston site was a huge success and teamed with the other three sites, we have raised almost 1.3 million dollars to fight blood-related cancers. Amazing!!!

Jeffrey's Journey was the #1 team for overall fundraising--raising over $40,000. Our team is phenomenal!! Thank you again for your support and commitment to helping us find a cure. We could never have done it without you. Jeffrey's Journey Rocks!!

I would also like to announce that not only was Jeffrey's Journey in the top three for fundraising but so was Silvivors (Alicia Silva's team). What an amazing group of people we live with! Congratulations to Alicia and her team!!!

Monday, October 18, 2004 5:40 PM CDT

The past two weeks have been filled with many activities that Jeffrey would have loved to join us on. We went apple picking. Well, we went to the orchard but they were not picking due to the early frost. Oh well, we still bought some yummy apples and have made some apple pies and applesauce. This past weekend, the Virostek Clan attended a Family Retreat in Malvern, Pennsylvania. It was (as one participant said) powerful. It was really inspirational to be with the entire family learning about God's love. Jeffrey was definitely present in our hearts. We know that the Lord has fulfilled his promise to Jeffrey but our hearts ache with our longing to see him and hold him.

I have been reading a friend's website and her words really have touched my heart. She lost her son in July to ALL and her grief is so familiar to me. She mentioned that she has wanted to hole up but then again get out and live. I have found recently that I have wanted to be anonymous, alone, away from it all but also not wanting to be alone. I do want to live and feel free to experience life and its blessings. I feel really conflicted right now. I kept wondering what was wrong with me. Was I sick? I think that the answer is an ache that will never go away. We, as a family, have been so forthcoming with our thoughts and as Lisa said in her journal "forward thinking". We are always looking at what we can do for others, looking at all of the positives, and not allowing for our grief to "get in the way" of our everyday lives. Sometimes I just need to allow my grief to consume me so that I can deal with it. A year has passed and the sorrow is just as strong, the longing just as great, and the pain just as raw, but I keep moving forward. I keep praying and I have hope. I guess that is all we can ask for.

Wednesday, October 6, 2004 8:52 PM CDT

I apologize that it has taken us a few days to update the website. I guess we are still on cloud nine after Saturday's success. Light the Night Reston 2004 has a current balance of $432,000 and counting. It was the largest group and the highest total for this site. What a success. Jeffrey's Journey was also phenomenal once again this year. We had 138 registered walkers and are currently at $32,000 for our total. We are still receiving donations so the total will only rise.

We would like to thank each of you who walked with us and also to all of our terrific donors. We appreciate your dedication to this cause. There is hope for a cure and because of the dollars that you have all raised, we may just see this cure in our lifetime. Thank you!

I have had a few people request my "speech" in writing so here it is. I am humbled by your request. Just remember that it is God who has led me so sing your praises to Him.

Let me start off by saying Welcome to Light the Night 2004. It is encouraging to see so many participants here this evening.

On Tuesday of this week, I had the opportunity to meet many team captains at Bank Day. I was filled with such gratitude when these individuals walked through the door carrying your Walker Envelopes. To me it represented a journey that none of us chose to take but one that we have all embraced. Because of our passion for this cause, we have raised hundreds of thousands of dollars for patient services and most importantly, future research. It is a journey that has become personal to all of us here tonight.

Tonight we all walk to commemorate lives touched by cancer. You may be walking in celebration as a survivor, or maybe it is a walk of hope but for many of us, it is in memory of a loved one. No matter what the reason, we have all come together for one purpose, hope for a cure. I would like to take this time to extend my appreciation to the patients, the survivors, the teams, and to the volunteers. Your participation has made a difference!

Tonight, I walk in memory of my son, Jeffrey. Jeffrey was diagnosed with acute myelogenous leukemia in 2001 at the age of 2 ½. During the next two years he underwent several rounds of chemotherapy, radiation, and two bone marrow transplants. He, sadly, lost his battle to this hideous cancer on Sept. 25, 2003. I am filled with hope, however. With funds that have been raised at Light the Night and other Leukemia and Lymphoma fundraising events, new therapies have been found to fight and hopefully eradicate AML. I am hopeful that Light the Night and future events partnered with committed individuals like all of you here tonight will see a future that is less challenged by blood-related cancers. There is hope for a cure.

This year, I was asked to take on the volunteer position as Chairman of the Reston Walk. It has been a privilege to work with a dedicated group of individuals in the planning of tonight’s walk. To look around is just a reminder of their hard work and dedication. To the Reston Light the Night committee, I would like to say my heartfelt thanks!

I would also like to thank our Corporate Walk Chairman- Dr. Ralph Schrader of Booz Allen Hamilton for his passion and for his involvement in all four walk sites.

Thank you to Murphy and Cash, our wonderful emcees, for their continued involvement with the Society and for the great music.

Thank you to Laura Evans our Honorary Chairwoman from Fox 5 News for her commitment to Light the Night.

I would like to give the microphone over to Blair Welch our Campaign Manager for the Reston Light the Night.

Friday, October 1, 2004 11:50 AM CDT

A tribute to a little angel. We miss you and we will continue to hold you in our hearts forever.

What an amazing team we have for Light the Night. We have currently passed our goal of $25,000 and are creeping closer to our stretch goal of $50,000. Whoopee! Yipee! Yahoo! Wayt to go!! We have 131 registered walkers on our team and we are still growing. We could never achieve all of this without your love and support so again THANK YOU!! Each of you has helped us through this difficult journey and your dedication continues. We are blessed!

"You'll Be In My Heart"

Come stop your crying
It will be all right
Just take my hand Hold it tight

I will protect you
from all around you
I will be here
Don't you cry

For one so small,
you seem so strong
My arms will hold you,
keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand
the way we feel
They just don't trust
what they can't explain
I know we're different but,
deep inside us
We're not that different at all

And you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

Don't listen to them
'Cause what do they know
We need each other,
to have, to hold
They'll see in time
I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know
We'll show them together

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on,
Now and forever more

Oh, you'll be in my heart
No matter what they say
You'll be in my heart, always
Always

Wednesday, September 22, 2004 10:19 PM CDT

A tribute to a little angel. We miss you and we will continue to hold you in our hearts forever.

An update on Light the Night. Thank you to Mary Strait for organizing our Baja Fresh Night for Jeffrey's Journey!! It was a big success - $480.72 for our team. Yahoo!! A big thank you to everyone who came and ate good food while supporting a great cause.

October 2 is only around the corner so please register if you plan on walking. Donations are still be accepted. We have hit out $10,000 mark and we just keep growing!

"You'll Be In My Heart"

Come stop your crying
It will be all right
Just take my hand Hold it tight

I will protect you
from all around you
I will be here
Don't you cry

For one so small,
you seem so strong
My arms will hold you,
keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand
the way we feel
They just don't trust
what they can't explain
I know we're different but,
deep inside us
We're not that different at all

And you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

Don't listen to them
'Cause what do they know
We need each other,
to have, to hold
They'll see in time
I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know
We'll show them together

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on,
Now and forever more

Oh, you'll be in my heart
No matter what they say
You'll be in my heart, always
Always

Monday, September 20, 2004 8:22 PM CDT

As a tribute to our little angel, Kelly Johnson and I spent time today creating a slide show. We hope you enjoy sharing in our happy memories of a special little guy who was full of life and a whole lot of spunk. We love you and we miss you so much, Buddy Boo!

Light the Night is just around the corner. Please email me if you need any information about registering or donating to our team Jeffrey's Journey.

Monday, September 20, 2004 11:13 AM CDT

Kelly and I have just spent the last two hours trying to make a slide show for everyone to see of Jeffrey's Journey. It is beautiful. I hope you will enjoy this Tribute to our Little Angel.

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Sunday, September 5, 2004 9:20 AM CDT

We have safely arrived home from our vacation in Montana (God's Country). It was exciting and relaxing and full of God's creativity. We viewed the Grand Canyon of the Yellowstone, waterfalls, geysers, mountain peaks with remnants of snow on them and lots of wildlife. It was truly amazing to see bison, eagles, elk, long horned antelope, big horn sheep, a black bear and mule deer just yards away. Well, the bison was only about 2 feet away but luckily we were safe in our car. Phew!!

While in Montana, we said a lot of prayers and I did a whole lot of crying. Purging seemed more like it. It is really difficult to replay in our minds this time last year. It was such a dark time with such sorrow attached to it. I think that as we move forward in the next few weeks, our grief will only intensify before getting any softer. I thank you for your thoughts and prayers. It does help!

During our stay at Flathead Lake, Grammy and Papa came up with a beautiful idea to remember Jeffrey and his presence with us. We set orgami boats with candles on them out onto the lake. We watched in amazement at how they just floated on the water and flickered on and off for a very long time. When it was time for bed, Papa went to retrieve the boats. As he came to shore, one blue boat drifted off and floated away. It remained lit until Stephen and I set off to bed. I guess Jeffrey wanted to tell us that he cannot come home with us, but he is always present. Good night, Jeffrey. It was definitely a great sign of love and grace from our little buddy boo.

Just a few reminders about Light the Night:

If you have not registered, please do so at www.lightthenight.org and register under Jeffrey's Journey.

September 18 - Golf Tourney at South Riding. We are still looking for foursomes and anyone interested in sponsoring a hole. Please contact Ken Isaacman @ kisaacman@cox.net

September 21 - Baja Fresh Night from 4 - 10 pm to benefit Jeffrey's Journey. Come and eat good food while supporting our team. We hope to see you there. (Fairfax Location)

September 28 - Bank Day All monies need to be in to qualify for our tent. Please send your walker envelopes to me before this date.

October 2- Light the Night in Reston
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Friday, August 13, 2004 1:44 PM CDT

Today, Angela and Meghan performed in their annual Lively Arts Camp skits, concert, and dance show. It was wonderful. The Johnson's introduced this to us two years ago and the girls have looked forward to it every summer. Jeffrey could not wait until he could be in the show too. I sat through the show desperately trying to hear his voice. I am sure he was present singing right along with everyone.

We are all feeling deep in the valley at this point. I am sure that each year this time of year will bring us many emotions and we are trying to deal with a few more "firsts". I know the emotions will not be any less intense or any less difficult to deal with once the year is over, but dealing with the firsts has been a roller coaster.
We find that our emotions can still knock us down. I opened up our newsletter for our community and was completely overwhelmed with emotions when I saw Jeffrey's picture and our Light the Night letter. I felt completely surrounded by love and support from our neighbors and also a great longing to see my son and to hold him in my arms. I am sure this feeling will never end. It just shows how much we love him and miss him.

The girls have gone back to the grief counselor and are enjoying a safe place to talk about their brother. They miss him so much and bring him into their conversations frequently. I am glad that they feel the need to talk about him because I know I have a great need.

Jeffrey the jokester has been at it again. We have a watermelon that was a mystery plant when we started our garden. Stephen was determined not to plant a watermelon since it takes over. We are sure Jeffrey had something to do with the plant getting into the cart and the phenomenon of the fruit. When we opened it up, it was a light orangey color. What a surprise!! Thanks, Jeffrey, for a great laugh!

We are making lots of progress towards our goal for Light the Night. We are currently at 40 walkers and over $5000 in donations. Way to go, Jeffrey's Journey!!

Thursday, August 5, 2004 2:27 PM CDT

I remember so clearly the first few days of August last year. We had a few days of reprieve from our worries and had gone to the beach. I am forever greatful for the time we had frolicking in the sand, playing with cousins, snuggling on the couch, and just being together as one big happy family. It was such a time of joy. It is memories such as these that make me smile and then wonder why Jeffrey had to go. I miss him so much and I find myself constantly thinking about him. I am bewildered. I know that Jeffrey is always a thought on so many people's minds. Why God didn't know that it was a good thing I don't know. I know what people say - God has a plan-but I will tell you... I think His plan stinks. As I read on another website...This is my cup of life but sometimes I cannot swallow this cup that has been given to me. Please pray for continued support as we approach a very difficult time with school starting and the one year anniversary coming too. We need the prayers.

An update on Light the Night:
Let me say that we appreciate the support and love from our family and friends. The dedication to help us reach our goal brings comfort during our time of sorrow. Thank you.

So far we have over 30 people signed up to walk with us and $5000 in donations. We are half way to getting a team tent and getting closer and closer everyday to our goal of $50,000. Jeffrey's Journey Rocks!!

Upcoming events:

September 18- Golf Tourney sponsored by Ken Issacman and the Poplar Tree HOA. Proceeds to benefit Jeffrey's Journey

September - Bunco Night to support our team. Coordinator Lenny Pacholski

September - The Boy Scouts will host their annual car wash to support Jeffrey's Journey

September - Baja Fresh Night coordinated by Mary Strait

October 2, 2004 Light the Night at Reston Town Center

Tuesday, July 20, 2004 4:24 PM CDT

Teammates for Light the Night 2004:

We recently sent out a letter to each of you inviting you to share with us our goal of reaching $50,000 to help find a cure for blood related cancers. Angela took this challenge very seriously and found a way to raise $500 for the Leukemia and Lymphoma Society. On Sunday and Monday of this week, Angela scooped ice cream and served it up with whipped cream, M&M's, sprinkles, and chocolate syrup to friends, family and teammates. It was a fun and delicious idea thought up by a little girl who wants to make a difference. So I invite all of you to take the challenge to raise funds for the Leukemia and Lymphoma Society in a fun and innovative way. I know I am up to this challenge!

Congratulations, Angela, on a job well done!! You deserve a lot of kudos and I know your brother is sending you hugs and kisses. He is very proud of you!

On Saturday, all of us attended the Mercy Me concert at Nissan Pavilion. What a spectacular night. I was wondering if anyone has come across the song by Mercy Me called Homesick. It really spoke to my heart and I look forward to going out and buying a copy. The song was written after the lead singer's cousin died in an auto accident. Being homesick is a great way to think about the emotions that one has when they are longing to see the one they love and to finally get to Heaven. I know I feel very homesick at times. I look forward to the day that I can finally see my little guy and ask Jesus a million questions. The song gave me some comfort for that moment so I know it must have been Heaven sent. Thank you!

Friday, July 16, 2004 10:33 AM CDT

Dear Jeffrey,

On July 13, Steven Trapp left this world to join you in Heaven. We feel such great sorrow. We truly feel the pain and suffering of a parent who has just lost their child to a devastating disease- leukemia. I hate leukemia! I hate what it has done to our family. I hate that it took you away from us. I hate that the Trapps must feel the pain of a parent in mourning. I hate the questions that your sisters must ask to find some reason in your death. I hate that my tears flow when I see a little boy playing ball with his daddy. I hate that my work on this earth is to carry on your message to others. I would much rather carry on that message with you at my side. We are a good pair, Buddy Boo. Leukemia is evil and I do hope one day that we do find a cure. Children should not die at the age of 4!!!

Due to the overwhelming desire to help find a cure, we will be doing Light the Night again. October 2 is the date for the Reston Walk. I know that you will be there with us. We hope to raise a large sum again this year to go towards helping families fighing cancer and towards research to find a cure! You are our inspiration, Jeffrey.

Please pray for the Trapp Family and the Carrolls in their time of mourning, Leah for continued good health, Delaney for an earthly healing and the freedom from pain, and all other families touched by cancer. Our prayers are definitely with them.

Love, Mommy

Tuesday, July 13, 2004 12:46 AM CDT

Dear Jeffrey,

I wanted to tell you that we love you and we are so very proud of you and the impact that you have made in so many people's lives. I am sure that you are God's little helper just like you were my helper. We miss you, Buddy Boo and always keep you in our thoughts and prayers. You never stray far. We have had a busy summer with swimming, horseback riding, and piano along with lots of playing. We just can't help but think about you always as we are doing so many of our activities. You loved the outdoors and playing at the pool. I imagine you swimming laps back and forth in the shallow end. I am quite certain that you would have been swimming with the other 6 and under boys doing freestyle and kickboard. We root for you in our hearts knowing how proud you would be to receive your ribbons.

We had a pretty boring Fourth of July. We just couldn't seem to find the get up and go to celebrate enthusiastically, but did manage to light some fireworks and play with sparklers. I think PaPa had the same idea and lit sparklers at your gravesite. We did the same. I felt a bit mischievous but hey what the heck. You loved sparklers!

We have had many surprises out of the blue. My car doors have been locked without me doing it, car alarms have gone off in friend's cars, items once lost are found in plain view, watches have gone crazy, and the list goes on. We have decided that it must be "Jeffrey the Jokester". There just isn't any other explanation. It brings a smile to our face and a tug to our hearts, but we find it wonderful to think of you and your presence. You are never far from us and we can sense that.

Steven Trapp is not doing well and will probably be joining you in Heaven soon. Please say a prayer for him and his family. His mommy wrote something on her website about being separated after death. I wanted to share it with you. She told her children that we are all holding hands but you have just taken the first step, but my dear son, please know that we are still holding your hand and we will join you someday. You are never alone. We love you!!

Missing you,
Mommy

Wednesday, June 30, 2004 9:13 AM CDT

I felt that it was time for an update. We are all going about our daily summer lives with pool time, swim team and camps. Angela is currently in horseback riding camp with a friend. It is her first overnight camp and I cannot wait to get some mail from her. I am sure she is in all her glory, but also extremely exhausted. Meghan is having Mommy-Daddy time which comes with some pain. She really misses her brother and feels it the most when her sister is not around to distract her. Jeffrey was always her buddy.

Fourth of July is just around the corner. We are really in a quandry as to what to do. Meghan would like to do fireworks in our court so that may just be what we end up doing. July 4th was one of Jeffrey's favorite holidays. He loved the parade in Fairfax and the fireworks either at home or at the high school. I can remember last summer that he kept asking for sparklers after the 4th. There were none to be found. I hope that all of you will light a few sparklers in his memory this fourth. He will love it!

Please keep our friends the Trapps in your daily prayers. Their son, Steven, is in the last stages of his battle with leukemia and is experiencing a lot of pain. We pray for God's mercy and the relief from his pain.

Monday, June 14, 2004 8:57 PM CDT

I have been thinking about updating the site for several days and I am not sure what to write about. Many good things are happening in our lives like piano recitals and swim team, the end of the school year, and summer vacation, but I find myself feeling very lonely and sad. I thought that after a period of time, walking back from school by myself wouldn't be so painful or walking into Jeffrey's room wouldn't bring me such a sinking feeling in my belly, but the truth is time has not healed these wounds. Jeffrey is missed terribly and moments either late at night, early in the morning or half past 12 bring the same feelings of pain. I miss my son! I understand that we go through these dark moments because we loved him so much, and I would never wish to not have loved him, but it hurts unbearably sometimes that I cannot hold him tightly and tell him he is so loved. His sisters miss him and it really stinks that they don't have him around to play with, joke with, fight with, and just be with as they grow up. IT ISN'T FAIR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Saturday, May 29, 2004 9:35 PM EST

With Memorial Day weekend underway, our thoughts turn to summer. The past 2 summers have been good times for our family because we were together. Now these activities are "wrong" because Jeffrey isn't here with us. He should be here! He should be biking and swimming, and playing with friends. That's how we remember Jeffrey - even when he was sick, he loved to play. We are still experiencing a number of "firsts" and it's not getting easier. But we are finding ways to cope.

On Thursday, Meghan's brownie troop dedicated "Jeffrey's Garden" at Poplar Tree School. Just one year ago, this garden was overcome with weeds but after much work, the garden is more beautiful than we could imagine (Picture). Thank you to our signmaker - George Griswald, and to the Rathburn family, and to the entire Brownie troop #2864.

Thanks also to everyone who visited the Amphora Cafe on Wednesday and helped to raise funds for the Leukemia and Lymphoma Society. Watch your mailbox for our "Light the Night" letter.

Wednesday, May 19, 2004 9:50 PM EST

Last night, the Angel Kisses committee got together to discuss the comments, concerns, and suggestions for next year's race which is scheduled for Mother's Day on May 8th at 8 am. It was a terrific meeting and we cannot wait to begin preparations for next year. With 675 participants and over $20,000 raised, it is no wonder that we are psyched! Way to go Angel Kisses 5K!

I also wanted to mention a few happenings that are on the horizon.

The Amphora Bakery and Cafe at 294 Sunset Park Drive (Sunset Business Park located off Sunset Hills in Reston) will be having their Grand Opening on May 26 from 7 am to 9 pm. They will be donating 30% of their proceeds to Jeffrey's Journey. Stop by for a pastry, sandwich or even a wonderful cake after dinner and help find a cure for blood cancers.

Meghan's Brownie troop will be dedicating a garden in memory of Jeffrey on May 27 at Poplar Tree School at 4 pm. The girls, along with another Brownie troop, planted Waxy Bogonias and Impatients this past Thursday and the ladies look forward to unveiling the sign this week. We have invited all of the Girl Scouts that go to Poplar Tree to attend the ceremony. I am sure it will be exciting for the girls who have planned this event. All are welcome.

On May 8, Stephen's grandmother joined Jeffrey in the Kingdom of Heaven. Her life is an inspiration to us because she endured an incredible hardship for 60 years - the death of her husband, Francis. Grandma Yevick is probably cooking kielbasi, ham, and cold dough cookies for Jeffrey and Francis. These were some of Jeffrey's favorite foods.

Monday, May 10, 2004 6:49AM EST

After a good night's sleep, I am now able to sit down and think somewhat clearly on yesterday's event. WOW!! The Angel Kisses 5K/2K Fun Run was a phenomenal event. We had more that 650 participants and raised over $10,000. We are still stunned and in complete shock by the success of this event. Stephen and I honestly thought maybe we would reach 300 participants but that number quickly became a memory. We can only imagine how this event will grow from year to year.

We look forward to the 2nd Annual Angel Kisses 5K next year on Mother's Day.

Since I have 2nd day syndrome, I wanted to say hello to all of the many individuals that came out to join us on such a beautiful Mother's Day. I saw many of you from a distance and never had the chance to say hello. Thank you for coming out and joining our efforts to help others. So many of you have contributed so much to our journey and we feel that we will never be able to repay your generosity. We hope, however, that we can PAY IT FORWARD. Thank you!

Thank you to all of the volunteers who made this event such a huge success. Your efforts are measured in the success of the event, and it was flawless. (Well, almost, Tracy could have done without an overflowing toilet after the event.)

I know that Jeffrey would have loved this event. I can assure you that he was right there with us, running like the wind and giggling his hearty laugh. What an image to hold in our hearts!

Saturday, May 8, 2004 8:57 PM EST

Angel Kisses is tomorrow!

I don't know if any of us will sleep tonight. We are overwhelmed by the generosity of our community. The Volunteers have worked incredibly hard and their efforts paid off with an amazing 650 participants!

We look forward to seeing many of you tomorrow.

Monday, May 3, 2004 8:28 PM CDT

There are only 5 days!!! There is only 4 more days to register so get those forms in quickly!

Angel Kisses 5K- we rock! We were informed tonight that we have over 400 people registered for the event. Is that just fabulous or what! I think the answer is "or what"! This is phenomenal!

Tonight was the fundraiser at Pizza Hut organized by Theresa Snedecker. She did a wonderful job getting the word out and many individuals from Poplar Tree Elementary and Pender Preschool attended and had pizza for dinner. Yummy!

Jeffrey,
You are such an inspiration to all of us! We love you and look forward to running with you on Sunday! We will be wearing our beautiful t-shirts and blowing you angel kisses! We miss you little, buddy-boo!
Love,
Mommy

Tuesday, April 20, 2004 9:36 PM EST

Angel Kisses 5K is coming - 19 days to go!

Angela and Meghan have been terrific throughout our family ordeal. Recently, they attended weekly "Good Grief" sesions along with other children who have had to experience the death of a loved one. The counselors did a wonderful job of interacting with the children and creating a place to express their feelings of sadness, frustration and confusion. The girls honored the memory of their brother in paintings, writings, and picture art. These activities generate family discussion on the topics of Jeffrey's illness and death. The girls compare their experiences to others and wonder "why did this have to happen?"

Our faith doesn't provide definitive answers to these questions but it does require that we respond to the tragedies in our lives. Going about our daily routine is our response... Angel Kisses is our response... Light the Night is our response... helping other families fighting cancer is also our response. These reponses help us pass the time, address our grief, and share our story with others. A song from Selah says it best, "We press on."

Friday, April 9, 2004 9:20 PM CDT

Beware!!! There is a very sneaky Easter Bunny running loose in this neck of the woods. We had just returned from playing on the Poplar Tree Elementary playground and chatting with our neighbors when we noticed that we had been Egged. There were colorful eggs all over our yard. The Easter Bunny had come and dropped them off and they had the most wonderful treasures inside. There were memories from family and friends along with yummy treats. The entire Virostek clan hunted for 118 eggs in the dark. It was an adventure that left us all giggling and smiling from ear to ear.

Jeffrey loved Easter egg hunts. Even in the hospital, where space was limited, we had Easter egg hunts. He would have each of us hide the eggs over and over. Each time we got just a little more creative. Papa even hid one in the folds of the curtain that hung next to Jeffrey's hospital bed. Laughter was contagious. Last year, we even dyed eggs in the hospital. Now, that was a real challenge!! Luckily, Jeffrey was released and we all spent a glorious Easter at home.

We thank the generous and extremely thoughtful Easter bunny (ies) for a egg-stra special adventure.

Wednesday, April 7, 2004 8:44 PM CDT

Angel Kisses 5K/2K Fun Run is only 4 weeks away. I hope everyone is training hard. :)

I thought that it should be my turn to share a memory of Jeffrey. As I was laying with Meghan tonight, I remembered ever so clearly a time in the hospital with Jeffrey at the age of 2 (he was getting his tonsils out). My poor face was smashed up against the railing of the bed. (They had given us a bed instead of a crib). In this very comfortable position, Jeffrey says to me "Scoot over, Mommy, you are squashing Jaguar." What a kid - more concerned about his lovey then his mommy. I also remember snuggling him at night this past summer and he would turn on his side and ask, "Do you know what this means, Mommy?" "Yes, Jeffrey. It means you want me to put my arm around you" What a snuggle bug!! I loved our snuggles.
To end, I would like to share one more little thought. Jeffrey was a jokester from day one. He came into this world ready for adventure and loved every day on this Earth. At 18 months, he tore the wallpaper off the walls in his room. When asked why he did it, he replied "Cause I do." Well, it made sense and certainly brought a smile to my face.

Tuesday, March 30, 2004 6:56 PM CST

Angel Kisses is only 5 weeks away! Get out those running shoes.

Eternitree has some specials for Easter. Check it out at www.eternitree.com/JeffreysJourney

I decided today that we need to be true to our feelings and just say that we really need lots of prayers. It is so difficult not being able to hold and love our little boy actively. We are doing so much in his memory but we would be hypocrites if we did not say that it really stinks. We are so glad that people have rallied around us, but we hate it as well. It isn't fair that our son was the one chosen to leave this earth prematurely. We would not wish this upon anyone, but we have so many unanswered questions that we really wish could be answered clearly. If anyone is listening, would you lift us up in prayer and also send a cute or even a "not so cute" memory of Jeffrey our way?

Angel Kisses is only 5 weeks away! Get out those running shoes.

Eternitree has some specials for Easter. Check it out at www.eternitree.com/JeffreysJourney

Tuesday, March 23, 2004 8:09 PM CST

Only 7 weeks until the big event - Angel Kisses 5k/2k Fun Run.

Dear Buddy boo,
I went by the cemetary today and they were watering. I guess they want the grass to grow and be really green. It was really quite amazing because just in the past couple of weeks, the grass has really grown and is getting green after this winter. The flowers were still there from my last visit and so was the carrot. I am surprised that an animal has not yet claimed it as their own. I guess they understand that it belongs to you.

Saturday night, Mommy and Daddy attending a wonderful event called the Leukemia Ball. This event raised over 3 million dollars for the Leukemia and Lymphoma Society. This money is our hope to find a cure for blood related cancers. We truly hope that in our lifetime we will see advancements with AML. It remains as one of the hardest cancers to treat. We remain committed to find a way. We do this in memory of you, Jeffrey. You were a fighter and a hero. We love you and will forever keep you alive in our hearts.
Love you always,
Mommy

Fundraising for LTN:
I have partnered with a website business called Eternitree that will help us raise funds for our Light the Night Team. They will give us 20% of the purchase price towards our Light the Night team. It is a great company and a great way for us to be the #1 team again. You can visit www.eternitree.com/JeffreysJourney if you have any gift basket, flower, plants, or tree requests for Easter, Mother's Day, birthdays, graduation, etc.

Tuesday, March 16, 2004 12:11 AM CST

Hey my little buddy,
We have an official site for Angel Kisses. If you have a computer there in Heaven look at www.angelkisses-5k.org It is great that Mr. Coose was able to help get this up and running. Speaking of running... the 5k is only 10 weeks away. Whoa!

Mommy went over to your cemetary yesterday to bring you a V-shaped carrot. Your sisters figured that you had sent them a bit of your love when they found it in the carrot bag. I am sorry that I didn't bring the ranch dip that you liked so much to eat the carrot with. Oh silly me! I also brought a garden flag to decorate your site. It made me feel a little bit better being there to visit. I thought we could then changed it for the holidays and the different seasons. Right now it says Welcome! I guess that is exactly what Jesus said when you arrived in Heaven-Welcome!

Today is a dreary and sad day for us. I am not sure exactly why but Daddy and I both woke up really missing you. Our feelings of sorrow are very intense so say a special prayer for us. Also, please say a prayer for Mr. Waybright who passed away on Friday. He had lung cancer. Mrs. Waybright was Meghan's teacher last year and I know that these next few days will be especially difficult for her and her family. I guess my gift to her can be the knowledge of what it is like to lose a loved one. I can only hope that I can reach out to her like those who have been reaching out to us in our sorrow. Today, I delivered the book, Tear Soup, to her home in hopes that it will help her like it has helped us. It is definitely a book that I have read over and over again. I suppose that today our tear soup is bitter than most days. It is forever changing and never complete.

We love you, little guy.

Wednesday, March 10, 2004 8:11 PM CST

Dear Jeffrey,
I just needed you to know that I love you. You have been on my heart so much today (not that you aren't any other time). During Bible Study today, we talked about how we will all one day have an ingathering when Jesus comes again. I talked about how I thought you would probably run to me and knock me down. It was the best feeling and the worst at the same time. We are approaching 6 months and I just want to hold you and be silly with you. It just isn't fair. It has been so long since I have cuddled with you and yet our grief is so new. Please pray for us, buddy boo, because we all need a bit of help.

Keep sending those little messages to us to tell us you are happy in Heaven.

Love, Mommy

Friday, March 5, 2004 9:04 AM CST

I think a little angel must have been making his rounds yesterday. I am sure that many of you do not remember the date from last year, but to us it was a rebirth and a birth. On March 4, my sister was born. A day that I remember so clearly of one that brought me such great joy. I had a little sister to love and be a mommy too. (I am sure she didn't like that too much.)
Last year, Meghan being the great big sister she is, gave her bone marrow to help her brother. What a sacrifice and a blessing! She was brave and gave the biggest gift ever to her brother-a chance. We are forever grateful because her sacrifice did give him life in which he enjoyed to the fullest.
We are so blessed to have had March 4 in our lives as a day of great joy and sacrifice. (I am sure that my mom would agree- happy laboring day, Mom)

We appreciate all of the notes on the website. They are encouraging and uplifting to us during this journey. Thank you for journeying with us.

Wednesday, March 3, 2004 3:23 PM CST

Dear Jeffrey,

Today, I had the privilege to share one of your favorite books with Angela's class. I read the Little Red Lighthouse and the Great Gray Bridge. Her class had purchased this book in your memory for the Poplar Tree Library. It was such an honor to share it with them today.

The weather has been beautiful and we have enjoyed being outside. It is also tempered with sadness. We have so many happy memories of you playing outside with your sisters and riding bikes with Austin. It just is not the same without our little cowboy with his motorcycle zooming around or seeing you speed down our neighbors driveways. I think that always made Grammy nervous. Wasn't it great to feel so alive with the breeze in your hair? I am proud of you, my precious one.

Love, Mommy

Dates to remember:
Angel Kisses 5K/ 2K Fun Run May 9, 2004 at 8 am in Chantilly.
Light the Night October 2, 2004 in Reston.

Monday, March 1, 2004 8:48 PM CST

Dear Jeffrey,

Mommy went on a Women's Retreat over the weekend in Williamsburg. It was good to reflect on my relationship with God and focus on strength to get through my days. I sure do miss you. I felt refreshed when I returned and hope I can now put some of the information we gained this weekend into my daily thoughts and prayer. I thought a lot about you and even talked about you bunches. Imagine that-your mommy likes to talk about her sweet boy.

The girls have started picking you during prayer time to say what you are thankful for. They get such a big kick out of reciting what you always said:

"I am thankful for a wonderful day and a wonderful day. For mommy and daddy and the whole world. I pick Mommy."
I always respond that I am thankful for my children which is exactly the response you craved to hear. I am very thankful for the three of you. I love that the girls have been doing this because it leaves a warm spot in my heart. You are always apart of our thoughts. We love you, bunches!!
Mommy

Keep the date:
Angel Kisses 5K/ 2K Fun Run May 9, 2004 at 8 am
Light the Night in Reston, Virginia on October 2, 2004

New picture added 3/1/04

Monday, March 1, 2004 8:34 PM CST

Wednesday, February 25, 2004 7:31 AM CST

Jeffrey, my sweet boy,
We are getting geared up for the Angel Kisses 5 K. Tomorrow is our second volunteer meeting at our community center at 7 pm. We will have so much to discuss as we more forward with this event. Mrs. Rickard and her lovely assistants have put so much hard work into organizing this and so far everything is just falling into place. Thank you, Jeffrey. We all feel that you must be orchestrating some of our luck.

Daddy and I went to our first Compassionate Friends meeting last night. I think we both decided that we are still at the stage that we want to talk through our grief and not listen to others tell us how the pain never goes away. It was comforting to know that our feelings and actions are not abnormal, but I am not sure if the timing is right for us to attend this type of meeting. We may try again later.

I have received letters, emails and notes on the website from friends saying that they are thinking about us. These letters and encouraging words always seem to come at the right moments. We appreciate it so much. We feel very alone some days with our grief and these well-wishers give us a lift. I am not sure that anyone can do something like this alone. Even with prayer, the hurt remains and you must talk through your sadness. It hurts to want to hold you and kiss you and know that we cannot. We long so much to sit by your bedside and watch you sleep. You are missed little one! Angela wrote you a lovely letter asking you to come and visit. We think you just may have when she found a strawberry in her cereal that looked just like a heart. Thank you for popping in and giving us a smile.

I did find a poem at Compassionate Friends that I thought was good.

Remember Me

To the living, I am gone
To the sorrowful, I will never return
To the angry, I was cheated.

But, to the happy I am at peace
And to the faithful, I never left.

I cannot speak, but I can listen.
I cannot be seen, but I can be heard.

So, as you stand upon a shore,
Gazing at a beautiful sea...remember me.

As you look in awe at a mighty forest
and its grand majesty...remember me.

Remember me, in your heart...your thoughts... and
your memories of the times we loved,
the times we cried, the times we fought,
the times we laughed.

For, if you always think of me
I never have ever gone.

Terry Fitzsimmons 1990

We think of you always, my son.

Monday, February 16, 2004 7:59 AM CST

Good Morning Jeffrey!

You have been close to on our hearts and constantly on our mind this weekend. There have been several visits to your gravesite with your loved ones leaving behind flowers (red, white & blue) and valentines. Your sisters left you a lollipop because they remember how much you enjoyed them. They miss you terribly and they are starting to ask more questions about why God chose to call you home. These are tough questions to answer and we ask that you please guide our thinking on these matters. You were also remembered at St. Mary's historic Church this weekend. And of course, Mommy and Daddy thought of you often as we celebrated 12 years of marriage to each other.

Daddy's retreat to St. Joe's-in-the-Hills was a terrific opportunity to remember your sweet life and to reflect upon my relationship with Christ. When I looked around and saw other fathers with their sons, I could not help but wish that you and I could shared this experience. Though you are not with me physically, I felt your spititual presence. I had to share your amazing faith with the Men of Malvern. I told them about your favorite song and your desire to receive the Eucharist. During my talk, there were few dry eyes in the assembly. As a tribute to our family, Father O'Donnell changed our closing song to your favorite, "Though the Mountains May Fall" He said that we would be joined by a sweet little boy who would be singing from heaven. It was a wonderful and emotional tribute.

Uncle Rob and PopPop were my faithfull companions on retreat - bringing me comfort in a time of deep sorrow. I am so very grateful for their love.

Saturday, February 14, 2004 10:50 AM CST

Happy Valentine's Day!

This morning, Angela, Meghan and I laid in bed for a long time just having some girl talk. It was fun and also therpeutic for all. Angela had a flashback of Jeffrey. Meghan talked about how she wishes that we could have held onto Jeffrey's soul so that he would still be alive. Don't we all wish that we could have seen his soul fly away with the angels and caught it so it couldn't get away. Children have the most simple but yet the most complex thoughts. Wouldn't life be so simple if our dreams could only come true? Many people have asked how the girls are doing and I think that this is a true example of how it affects their lives. They think about Jeffrey constantly and contemplate how life has changed and how they wish they could change it all. Meghan wants to name her first son Jeffrey Douglas. It will be interesting to see if she does. Jeffrey was her pal and she misses him so much. Angela is trying to sort out her thoughts. She feels great frustration that her little brother is not here to bug her, but then feels happiness that he is no longer in pain. Emotions can be hard to sort out. We will constantly be working on our "tear soup". Some days will be better that others so for now we concentrate on loving one another, making a difference and finding hope in our own resurrection. But first, we have lots to do like Angel Kisses 5K on May 9 (Mother's Day) and Light the Night October 2, 2004. There is work to be done!!!

Tuesday, February 10, 2004 9:34 PM CST

Dear Jeffrey,
I found myself feeling very sad today. It is time to go to the grocery store again and I found myself wondering what you would like to eat. We tried so hard to find the right foods that you would eat or things that might boost your immune system. Now, I just walk around in circles buying the same ol' stuff that probably isn't healthy for any of us. I would give anything to be searching for a food that would taste good to your taste buds. Grocery shopping is dreadful but even more so without my little buddy to go with me.

Our days are filled with chores and activities, but we miss you so much. We find ourselves talking about you often and smiling, but our hearts are so heavy. There is not a minute that goes by that we don't wonder what you are doing and wish you were here. Kelly Johnson gave us a book called Tear Soup. It is a wonderful book to help us through our grieving. Our "tear soup" is not finished. I have encountered some that think that one day we will just be all better. I don't know if that will ever be true. How does one just recover from the loss of their child? Sure, we always keep our chins up and we are determined to make a difference but complete recovery seems foreign to me. We are looking for all of the rainbows and any sparkle in the vast darkness. I guess that is God's gift to us and our gift to you. You are our inspiration. We may not understand why bad things happen to good people, but we do hold onto hope that one day we will be reunited with you and our Lord. We are searching for the joy that comes from the sorrow. Here is one example of how you have affected our community.

"I wanted to let you know that this evening the Northern Virginia Alumnae Chapter of Delta Gamma was proud to approve a donation of $2000 to help fund the scholarship in Jeffrey's name.

Please keep us informed as to how the fundraising efforts are going and if there is anything else we can do to help."

Sincerely
Sheila Ryan Carney
President
Northern Virginia Alumnae Chapter

It really is wonderful to see the support that continues to help keep your memory alive.

We love you my angel sweet.
Mommy

Thursday, February 5, 2004 6:44 PM CST

JEFFREY, YOU DID IT!!!!!!!!!!!!!!! Joey Laigle came out of his coma! I knew you could do it! Thank you so much, everyone is happy now. I love you my sweet little brother!
Love,
Angela

Wednesday, February 4, 2004 9:32 AM CST

My sweet Jeffrey,

I just received the most incredible phone call. Jim Challendar, who knows Tony and Gramma Nancy, made a proposal to Visitation Home in New Jersey to paint a room in your memory. This home takes care of disabled youth and is sponsored by the Catholic Church in New Jersey. You have made such an impact on others that they have approved the proposal. A room will be painted (probably blue) in your memory and will be dedicated the middle of May. Wow, little angel you are really working hard through others. We love you, angel boy!

We have a request, Jeffrey. Would you please intercede on the Laigle's behalf? Their 5 year old son went in for surgery last Friday and he remains unconscious. Please pray for his recovery and for strength and peace for his sisters, brother, and parents. They have received some encouraging news, but they still need prayers. We know that prayer is a powerful tool.

Thursday, January 29, 2004 5:51 PM CST

My sweet angel boy,
Ms Tracy and Ms Mary brought over the logo for the Angel Kisses 5K. (Papa said that he was only going to come to run if there was a cool t-shirt.) Well, Jeffrey the artist has made one perfect logo for us. We will definitely have some fab t-shirts. It has an angel fish kite on it and the kite string makes a J that then begins the A for Angel Kisses. I cannot wait for you to see the products that we will put this logo onto. You will be so proud.

Our efforts are underway for the 5K. We have been working hard ( or should I say the great committee) to get things rolling. We have lots to do but I am so excited!

Did you see what DG at JMU is going to do to help with the scholarship? I cannot believe the wonderful support from all over. It makes me so proud that I am your Mommy. I love you, little buddy boo!

Meghan and Angela send you their wishes for a good time in Heaven. They are busy with talent shows and basketball as well as Girl Scouts. They just finished selling those yummy cookies. Remember when we brought down Thin Mints when you had your bone marrow transplant? Once we opened the container, all the cookies had to be eaten. I think that was my diet for a couple of days since you only wanted one or two. I guess your taste buds were a bit off during that time. How could one not want to eat all the Thin Mints in one seating?

We miss you lots and think of you always. We saw a bright star last night out of our windows. We knew it must be you smiling at us. We love you!!!!

Friday, January 23, 2004 1:35 PM CST

Dear Jeffrey,
There are so many things that I want to tell you. I have talked to you every night before bed, but sometimes I wonder if you hear me. Can you hear me over all that fun you are having? We miss you buddy boo and sometimes my heart feels like it will burst because all of my saddness, but then somehow a bright ray of sun shines through. Is that you reminding me of your sunny smile and great hugs? I miss seeing those smiles and feeling those hugs but they are happy memories that shall last forever. You must be working hard through angels on earth because so many wonderful things are happening in your name. It is amazing but you continue to touch people's lives even without being physically present. You are an inspiration and we love you.

Did you know that Kathy Violette and Amy Spurlock have contacted Delta Gamma Fraternity to establish a scholarship in your name? This is something that will have your name on it and will carry on your memory forever. What a wonderful idea-thank you to my thoughtful sorority sisters. (See guestbook for information).

I also attended a meeting for the Angel Kisses 5K. There were some great people there to help organize this event. Everyone is so excited to host this fun event in our community. The money will go to organizations to benefit other families fighting cancer. I know that the Angel Kisses 5K will be a great success. And to think that this is only the first annual - we can only get better year by year. I feel confident that you will be running along side us blowing angel kisses. Hey, no piggy backs!!
This event is going to take place on May 9, 2004. I will tell you more as we get closer.

Mommy is also getting geared up for the Reston Light the Night. Many of us will be walking in your memory on October 2, 2004. We love and cherish you, my angel boy!

I will write to you again but turn on those listening ears so that you can hear me at prayer time. WE LOVE YOU!!!

Love, Mommy

Thursday, January 15, 2004 3:03 PM CST

Dear Jeffrey,
Yesterday I went to view your memorial marker at the cemetary. This was a sad task for me to do. It seems so permanent now. I wish that it didn't have to be that way. Parents should not have to bury their children. It isn't natural. We know in our hearts that you are in a happy place and that you feel our love always, but we miss you dearly! Please know that we will always keep you close and dear in our hearts. We are continuing your journey by trying to help others with their fight against cancer.

On Tuesday, January 20 from 6:30 - 8:30, we will be holding an informational meeting regarding the Angel Kisses 5K/1K Fun Run. This meeting will be held at the Poplar Tree Community Center on Point Pleasant Drive in Chantilly. We hope lots of people will come and want to get involved in such a great race. The money will then be put into a memorial fund to help families that are fighting cancer.

Today it was supposed to snow. We thought that we would come and make you a snowman at your memorial site, but guess what...the weather forcasters were wrong. I hope that you like the snowman that we made for you on this site. I thought he was pretty cute. Maybe the next time it snows we can actually make you a real live Frosty. I remember when you came home from the hospital before your first bone marrow transplant. We got several inches of snow (actually a couple of feet) and we built a huge snowman outside. You really loved doing that with your daddy and sisters. I think we should put that picture on the website for all to see. ( I put one from 2002 and one from 2003- you sure loved when it snowed.) What happy memories!

We love you angel boy.
Love,
Mommy

Thursday, January 15, 2004 1:00 PM CST

Dear Jeffrey,
Yesterday I went to view your memorial marker at the cemetary. This was a sad task for me to do. It seems so permanent now. I wish that it didn't have to be that way. Parents should not have to bury their children. It isn't natural. We know in our hearts that you are in a happy place and that you feel our love always, but we miss you dearly! Please know that we will always keep you close and dear in our hearts. We are continuing your journey by trying to help others with their fight against cancer.

On Tuesday, January 13 from 6:30 - 8:30, we will be holding an informational meeting regarding the Angel Kisses 5K/1K Fun Run. This meeting will be held at the Poplar Tree Community Center on Point Pleasant Drive in Chantilly. We hope lots of people will come and want to get involved in such a great race. The money will then be put into a memorial fund to help families that are fighting cancer.

Today it was supposed to snow. We thought that we would come and make you a snowman at your memorial site, but guess what...the weather forcasters were wrong. I hope that you like the snowman that we made for you on this site. I thought he was pretty cute. Maybe the next time it snows we can actually make you a real live Frosty. I remember when you came home from the hospital before your first bone marrow transplant. We got several inches of snow (actually a couple of feet) and we built a huge snowman outside. You really loved doing that with your daddy and sisters. I think we should put that picture on the website for all to see. What a happy day!

We love you angel boy.
Love, Mommy

Thursday, January 15, 2004 12:42 AM CST

Sunday, January 11, 2004 8:48 PM CST

Happy Birthday to all of the wonderful January people. We have celebrated many birthdays this week and would like to wish all of those having a birthday blessings of joy.

My week must have been orchestrated by a little angel. I did not set out to host a party on Tuesday or to go out for Stephen's birthday, but things just fell into place. Thank you my angel boy for helping us through these past few days.

Next week, there will be a volunteer meeting for the Angel Kisses 5K that will be held on Mother's Day in our Poplar Tree community. I look forward to helping with these preparations.

We have had some exciting news these past few days ( again orchestrated by a blue-eyed angel). $10,000 has been donated to Children's Hospital in memory of Jeffrey by CBIC during their Miracle Day. Wow!!!
Also, a $2000 donation was sent into the Leukemia and Lymphoma Society by Quality Software Services, Inc. This has begun our Light the Night campaign for 2004. Maybe with a start like this, we will be the #1 team again. (Light the Night October 2, 2004). No matter what dollar amount we achieve this year, we will always know that Jeffrey's Journey is definitely NUMBER 1. Thank you to all of our team members!!!

Thursday, January 8, 2004 10:22 PM CST

Tonight I will keep things very short. I would ask each of you to pray for our little friend Leah. She has been battling fevers for the past 3 weeks. In November, she had her bone marrow transplant so she is in a vulnerable stage. The doctors seem to think that she is battling a virus- either meningitis or enchephalitis. Please keep her and her family in your thoughts and prayers.

Tuesday, January 6, 2004 6:41 PM CST

Dear Jeffrey,
Happy 5th birthday. I hope you are having a happy birthday in Heaven.
Love, Meghan

Dear Jeffrey,
Happy 5th birthday. I hope you got all of the presents you wanted. I love you and miss you. We had your 5 year old birthday party today. It wasn't the same without you. We did a short dog show with Beau. I think you really would have enjoyed Beau's new tricks. I miss you and love you.
Love, Angela

Dear Jeffrey,
I will try to spell correctly in this letter. I mizz playing with u and chasing after u. Snuggling was so much fun. I wuv u and mizz u.
Love, Beau

Dear Jeffrey,
Happy birthday my sweet little boy. We celebrated your birthday today by going to church, visiting the cemetary, releasing balloons, lunching with Jacqui(we ordered the Volcano cake and sang happy birthday to you)and eating Happy Meals and cake for dinner. Many people celebrated with us today. It sounds like a good day, huh? It was wonderful to feel the constant love and support of our family and friends. You, however,were missed terribly. There are just no words to express the sadness that a parent feels on their child's special day when they are not present. I have constructed a thousand letters to you in my head, but they never sound as good when I sit down at the computer. You were born on the Epiphany- a revelation. I had often wondered what significance it would have. I guess your life was to be an example to others. What a special gift you have! We received your letter today and your life will go on through us. We know that you will not be forgotten- you have affected so many lives. I am honored that you are my son and I love you. Thank you for sharing with us your love and faith. You are a blessing.
Love, Mommy and Daddy

Monday, January 5, 2004 7:57 PM CST

I think Denise's idea is wonderful. Thank you for suggesting a very simple but appropriate way to memorialize our little angel boy. The girls and I talked tonight about what it would be like in Heaven on your birthday. They were full of lots of ideas and questions. I only hope that his day is full of happiness. We are going to go to Mass in the morning and then I am off to the gravesite with some friends to take him some balloons. After school, friends will come by to have cake. We will make it as festive as we can.

Thank you to all for your well wishes and prayers.

Love,
Tasha

Saturday, January 3, 2004 10:53PM EST

I realize that pink is not Jeffrey's favorite color, but I thought the balloons were appropriate since January 6 is his birthday. Bear with us until after his day.

We have returned from Hawaii and are very thankful to the Carroll family who hosted us. They were excellent tour guides and very gracious hosts. Thank you!!

As we begin 2004, we are called to remember the journey that we have taken. It was a journey of faith, love, courage, and joy. It was also a journey of intense sorrow and pain. We pray for the coming year that we may find compassion, strength and comfort. Our days are incomplete without our son but we look ahead with grace and faith. We thank all of you who have held our hands and who will continue to hold us in your thoughts and prayers through this barren desert. We have found streams in the desert with your support and love.

Monday, December 29, 2003 1:04 PM EST

Our adventures in Hawaii have been wonderful. We have been to the beach, to the pool in Waikiki, visited the USS Arizona, experienced a few rainbows (we saw a double one this evening after a short thunderstorm), attended a luau and hiked at Makapuu Point. We hope to go to the Polynesian Cultural Center tomorrow. The Carrolls have been wonderful hosts! We have seen a lot of beautiful sites and thank God for his creation. We have learned that Mr. Steve makes good mai tais and that Meghan loves to boogie board. See our new picture on the North Shore.

Before church today, I found myself thinking a lot about Jeffrey and my longing to see him. It is sometimes hard for me to believe that he isn't just waiting for us back at home. I guess being away helps the pain minimize for a short time, but the longing to see him is intense. I think he would have loved the hula dancers at the luau, the ocean and the ships in the harbor.

Since being here, Stephen and I have both had some wonderful dreams with Jeffrey in them. Jeffrey was his usual cuddly self with hugs and kisses to share. I guess being here really is close to Heaven.

Sunday, December 28, 2003 9:13 PM CST

Our adventures in Hawaii have been wonderful. We have been to the beach, to the pool in Waikiki, visited the USS Arizona, experienced a few rainbows (we saw a double one this evening after a short thunderstorm), attended a luau and hiked at Makapuu Point. We hope to go to the Polynesian Cultural Center tomorrow. The Carrolls have been wonderful hosts! We have seen a lot of beautiful sites and thank God for his creation. We have learned that Mr. Steve makes good mai tais and that Meghan loves to boogie board.

Before church today, I found myself thinking a lot about Jeffrey and my longing to see him. It is sometimes hard for me to believe that he isn't just waiting for us back at home. I guess being away helps the pain minimize for a short time, but the longing to see him is intense. I think he would have loved the hula dancers at the luau, the ocean and the ships in the harbor.

Friday, December 26, 2003 1:33 PM CST

Hawaii is wonderful. We all had a great Christmas morning with opening presents and then we were off to the beach. I have never in my life seen a beach that is so beautiful. Meghan, Angela, Mary, Joe and Mr. Steve spent a lot of time in the water. Stephen was even able to venture out into the water. Tasha is a wimp and only went into her waist but we can all say that we went into the Pacific Ocean. Meghan had a wonderful time body surfing with Mr. Steve. He has found a surfing companion.

Our adventure to Hawaii has brought us a bit of distraction. We feel just a bit closer to Heaven here in Hawaii. We are all glad that we made this trip.

Sunday, December 21, 2003 3:05 PM EST

Today we decorated a wreath to decorate Jeffrey's gravesite. We included a Thomas the Train Engine, a baseball and glove ornament and two glass Angels. Finally, we added a button with his picture on it. The picture was taken at National Zoo prior to his 1st hospitalization. The button reads, "I am not alone."

As we wrestle with our grief this Christmas season, we know that Jeffrey is with our Lord and that we are not alone. Family and friends continue to remind us of how Jeffrey has touched their lives in a very special way. That means the world to us.

Back at home, we've had a series of visits from a Secret Santa. We hope that he or she reads this website, so that we can say "Thank you."

We are packing our things and getting ready for our trip to Hawaii. We wish you all a happy, safe and Merry Christmas! See you next year.

Saturday, December 13, 2003 11:00 AM EST

Angela and Meghan are getting ready for Christmas. We leave for Hawaii in 8 days. They are wearing their shorts and t-shirts today! They are also be-bopping from last night's concert, Jump5. Tasha took them and Alexandra Johnson. They all loved it!!!

Today we are gathering in the Poplar Tree neighborhood for a hayride, apple cider and cookies. Jeffrey went on the hayride twice last year - once with his family and once with his buddy Austin. As we have described, these seasonal events are difficult, but we need to muddle through them and get ready for Jesus' birthday.

Wednesday, December 10, 2003 7:33 AM CST

I am overwhelmed by emotions. I had mentioned recently that friends are like angels. They are present and ever comforting. When I turn on my computer and read what friends and family have written to us, I cannot help but think that you are angels. You all have stood by us and wept, you have held our hands in the face of tragedy, and at a time that our hearts feel like we cannot weep anymore, you write such wonderful words. We thank you!
We are having a tough time right now missing our little angel boy, but we will get through it. Christmas is a time to rejoice and we are trying hard to stay focused on why we celebrate this season. The presents will not be abundant, but our love for one another will be. Thank you for your prayers and wonderful words!

Thursday, December 4, 2003 9:25 AM CST

As I laid in bed last night, I began thinking about life. What a cruel act of faith this has all been. Jeffrey's memory has really been flooding my mind. Everything that I do or say reminds me of him. I guess with getting ready for Christmas our thoughts are on our family and Jeffrey is missing. This can be utterly maddening at times. We did hang Jeffrey's ornaments that he made with MomMom and at preschool and his stocking is hung by the chimney with care. He is in our every movement.

I found myself thinking about his wake and funeral. I was distraught but was able to get through it with strength. I have wondered where I got the strength. I have to believe that God has been carrying me through with a little help from an angel that is very dear to me. I also must place some responsibility on my family and friends. Your kind words, uplifting notes, and smiles have meant the world to me.

I looked up the word grief in the dictionary and it says - a feeling of great sadness. This may be the definition that Scholastic gives but to us it is a deep longing to see and hold Jeffrey again, a pain that stays with you always, a feeling that our heart is broken, a sense that this is a bad dream, a feeling that this is all so unnatural. It is not right that a child must suffer and die. I have been reading a few books from parents that have lost children. I think that God allows these bad things to happen so that we may feel the pain and love He felt when his own son died. He wants us to love as He loves. Because of this tragedy, we have seen the beauty of friendship, the amazing will of a child, and a testimony to faith. It does not make the pain any less, but it does give us hope. We can hope for a future when we may be reunited with him again. We hold onto that faith and hope.

Thursday, December 4, 2003 9:25 AM CST

Friday, November 28, 2003 8:12 PM CST

Thanksgiving has passed and we are well. We had a lovely afternoon and evening with MomMom and PopPop. We played games, talked about what we were thankful for and enjoyed a wonderful feast of the usual- turkey and all the trimmings. It had its moments of heaviness in our hearts and some tears, but all in all we got through the day with grace. We have much to be thankful for and we continue to count our blessings. We cherish our family, our friends and all of the support of our community. We have been truly blessed with an abundance of love. May your days be filled with the love of Christ and with the hope for tomorrow. We grieve but we have hope.

Tuesday, November 25, 2003 12:57 AM CST

As many of you know, Stephen has a sports injury . On Sunday, he tore his achilles tendon playing raquetball. Due to the kindness of our wonderful neighbor who is an orthopedic surgeon, Stephen was able to have surgery Monday and is recuperating. He will be on crutches for a month and then a walking boot for another month. It is a long recuperation period, but at least he will be up and walking when we are in Hawaii. For a change of pace, we are visiting the Carroll family in Hawaii for Christmas. We keep reminding ourselves that things could be worse, but having an injuried foot in Hawaii still really stinks. Oh well, life gives you a lemon and you just have to make lemonade. This week will be relaxing and spent together. What more can we ask for?!

Angela and Meghan's girl scout troops along with the SCA at Poplar Tree Elementary have been sponsoring a Movie Medicine - video drive. We have had such a wonderful response that my basement currently has 5 boxes of videos in it. The kindness in our community is abundant. Thank you to all!

Sunday, November 23, 2003 2:59 PM CST

Thanksgiving is only 4 days away. I remember last year thinking we had so much to be thankful for. Our family was together and Jeffrey was without his cancer. What a difference a year can make. I write these words, but in truth our family is still together and my son is without cancer. We are thankful for our family, our wonderful friends and neighbors and for the love that we share. The tears flow as I write this that we have much to be thankful for, but I miss Jeffrey more and more each day. I guess the hill gets a bit more steep before it plateaus. Grief is like waves of the ocean. Sometimes the waves are very high and crash down with great force and other times it is a ripple. The only thing is the force changes in a mere second. We are hurting but we also know that we will be ok. Time heals.

I cannot express to you how much it means to us for our friends and family to write and tell us about their dreams and their dear thoughts of Jeffrey. We talk about him constantly around here. A good friend told me one day that dreams are Jeffrey's way to come and play or talk to you. The other day a friend emailed me and told me a story about a child who had passed away. He visited his mommy in her dream and told her not to cry anymore because he was happy and safe and that her tears were getting him all wet. I imagined Jeffrey saying this to me. Grammy and I both responded with "but you love to swim" :) Jeffrey was a kind soul and he never wanted anyone to be sad. We are all trying to remember this and to hold our chins up and to smile.

I am happy to hear that Jeffrey's class continues to feel his presence and even invited him to their Thanksgiving feast. I know Jeffrey felt connected to those little people with their huge hearts even with the few days that he shared with them. Children are so precious.

Stephen and I had the privilege to attend the thank you party and awards ceremony for Light the Night. Our team did indeed come in #1 with the largest donations in the DC area and #5 in the entire nation for this event. We are proud to be "Jeffrey's Journey". We were also given the date for next year - October 2, 2004. Mark your calendars now. We thank you all again for your support and generous donations! I have included a picture of the plaque that we received along with the reason we support this cause - Jeffrey.

Friday, November 14, 2003 9:23 PM EST

Mittens on cold days, leaves to be raked, books to return to the library, feasts to be enjoyed, shopping for Christmas... all these things remind us of our little angel boy. To say that is only half true. I don't think there is ever a moment in our day that our thoughts are not of Jeffrey. He will always be in our hearts.

Several people have shared this song with me so I thought I would write down the words for you all to see. Songs can bring such a flood of emotions but also bring some comfort. One day it will all seem right again when we see Jeffrey in Heaven. Until that day, please continue to pray for strength, peace and courage for our family.

To Where You Are
================

Who can say for certain
Maybe you're still here
I feel you all around me
Your memories so clear

Deep in the stillness
I can hear you speak
You are still an inspiration
Can it be?!
That you are mine
Forever love
And you are watching over me from up above

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you're there
A breath away is not far
To where you are

Are you gently sleeping
Here inside my dream
And isn't faith believing
All power can't be seen

As my heart holds you
Just one beat away
I cherish all you give me everyday
Cause you are my
Forever love
Watching over me from up above

And I believe
That angels breathe
And that love will live on and never leave

Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you're there
A breath away is not far
To where you are

Thursday, November 6, 2003 8:02 PM CST

NEWS!NEWS!NEWS!NEWS!NEWS!NEWS!NEWS!NEWS!NEWS!NEWS!

We have the official total for Light the Night. Due to the hard work and commitment of our team members to be #1, "Jeffrey's Journey" raised $43,923.99 for the Leukemia and Lymphoma Society. We are the #1 team in the Washington DC metropolitan area. Way to go team members!!! We also were informed that we had 206 registered walkers on that night. We know that next year will be a challenge to come close to those amounts, but we hope that each of you will join us for Light the Night as a annual gathering. Thank you again for your support to a very worthy cause!!

Life,however, has been a roller coaster the past few days for all of us. It all began on Sunday when we lit a memorial candle for Jeffrey on All Soul's Day. I guess the reality of the situation just catches you off guard sometimes. We miss him terribly! I find myself smiling and laughing and then crying the next minute. It is those waves of emotions that you just have to let come and pass on their own. I appreciate all of the notes that people have sent and the kind words spoken by all. We are able to move forward because of the faith and love that we have. We know that all of your prayers are being heard since we haven't fallen completely on our faces :) Stephen and I were recommended a book by a pastor who's daughter had ALL. He wrote 4 sermons that he shared with his congregation at the time of her diagnosis, the time of her relapse, the time of her death and then 3 years after. It was a book that really hit home. One of the things that he mentions is that when we ask where is God in all of this, we can answer that He is right here helping us remain standing rather than just fainting. I have to believe that this is true.

Some individuals have wondered what they should say or have mentioned that they don't want to upset us. I will tell you that you cannot make us sad. We are sad and admit that sometimes our emotions get the better of us and tears flow, but you are not the cause. Knowing that you are praying and thinking about us is what carries us through. There are no wrong words - silence is what is wrong. Please don't feel uncomfortable around us, we do not feel uncomfortable around you. We are still the same people who love and cherish our family and friends.

Friday, October 31, 2003 11:36 PM EST

Halloween is a night of complete enjoyment for our children. What could be better than dressing up and begging for candy door to door? However, Mommy and Daddy are not feeling the elation that they feel. It does not seem "right" that Jeffrey was not here to dress up in his Peter Pan costume and "fly" around the neighborhood with us. We miss him so very much. We will celebrate All Soul's Day on Sunday at our church and light a candle in his memory. We take comfort that he is with our Lord and one day we shall be together again.

Angela commented that this was one of her favorite Halloweens. Last year was ranked #1 since we were flying to Orlando on this date. This year, she performed for the Director of the DEA with her fourth grade classmates and they had a Halloween party in her class. The 4th graders have been invited to now perform at the Pentagon for the President. Life is great at this moment for her.

Meghan also had a Halloween party in her class called a Creepy Crawler Critters celebration. What more can a little girl want than to dress up twice in one day? This year Meghan was Spiderella and Angela was a Gothic Vampiress.(See new picture)

Today was our last day to turn in the donations for Jeffrey's Journey. We look forward to seeing what our new grand total is. It should be around $40,000. Way to go team!!!

Friday, October 31, 2003 10:06 PM CST

Halloween is a night of complete enjoyment for our children. What could be better than dressing up and begging for candy door to door? However, Mommy and Daddy are not feeling the elation that they feel. It does not seem "right" that Jeffrey was not here to dress up in his Peter Pan costume and "fly" around the neighborhood with us. We miss him so very much. We will celebrate All Soul's Day on Sunday at our church and light a candle in his memory. We take comfort that he is with our Lord and one day we shall be together again.

Angela commented that this was one of her favorite Halloweens. Last year was ranked #1 since we were flying to Orlando on this date. This year, she performed for the Director of the DEA with her fourth grade classmates and they had a Halloween party in her class. The 4th graders have been invited to now perform at the Pentagon for the President. Life is great at this moment for her.

Meghan also had a Halloween party in her class called a Creepy Crawler Critters celebration. What more can a little girl want than to dress up twice in one day? (pictures will be updated soon.)

Today was our last day to turn in the donations for Jeffrey's Journey. We look forward to seeing what our new grand total is. It should be around $40,000. Way to go team!!!

Monday, October 27, 2003 9:36 AM CST

Let me first say thank you to the wonderful Cub Scouts that organized and held the car wash on Saturday. Their efforts and hard work were well rewarded with $650 being raised for the Leukemia and Lymphoma Society in memory of our sweet Angel Boy. Thank you, Thank you, Thank you! I think that they even plan on doing it again next year. It must have been a lot of fun!! Watching all of those dads, boys, and even some moms out there cleaning those cars with such enthusiasm and pride really made us feel good. I think when the sponge went flying a few times or someone got squirted with the hose, Jeffrey was smiling.

The stories that you have shared have really brought joy to our days. Thank you! Stephen and I were watching some video clips and we were reminded of when Jeffrey asked his sisters out on a date. They ate dinner in the dining room with Mommy as the waitress. After a wonderful dinner and dessert, Jeffrey took his sisters dancing. They had the times of their lives, giggling, swinging each other around and just having a blast being kids. Life is so grand.
Stephen also reminded me of the time that Jeffrey was finally able to play with Austin. He kept smiling with great happiness that he could finally play at Austin's house and replied " I just can't stop." Jeffrey approached each day with a positive attitude. I have adopted his saying when someone asks me how I am - Good - that is what Jeffrey would say and what he would want for me to say now. We miss him more and more everyday, but we know that he is safe in the Lord's arms. We just wish it could be our arms that he is safe in. There is a song by Mercy Me titled " I Can Only Imagine". It wonders what response one would have when they enter Heaven. I have in my mind that Jesus got down on one knee and Jeffrey approached and gave him a big hug. It is a happy thought. Happy thoughts are great to have. Thank you for sharing yours with us!

Wednesday, October 22, 2003 3:26 PM CDT

We have really been enjoying the Jeffrey stories that people have been writing. It is great to have special memories of our little angel. Today I was thinking about all of our park trips and how Jeffrey loved to play and explore new parks together. I also was remembering how he would love to play with fire engines that had lights and sounds or the big trucks that his big boy friends like Alex, Will and Josef have at their houses. What great memories of our sweet boy!

Yesterday, Stephen and I visited the cementary and were happy to see that someone special had visited the gravesite. We also took the opportunity to place some yellow flowers at this gravesite and to think about his happy little personality. It continues to be hard to imagine that he is not physically present in our lives, but we know that he is with us always in our hearts. Someone very wise told me today that right now our grief consumes us, but one day it will walk beside us. I know that one day that will be true, but for today it is still heartbreaking.

Grammy and I had the opportunity to lunch with Connie Theroux today and to purchase some books through Usborne Books. EDS is doing their United Way Campaign and the proceeds of the book fair will be exchanged for books and sent to Buddy's Corner at Children's Hospital in memory of Jeffrey. If anyone would like to purchase books for themselves to help EDS's fundraising efforts please visit www.ubah.com/BF12949

Cub Scout Pack 1459 will be holding a CAR WASH on October 25 from 12-3 pm at the Shell Station at 13705 Lee Jackson Hwy. (across from RT 50 Staples in Chantilly) All proceeds will be sent to the Leukemia and Lymphoma Society in honor of Jeffrey. Bring some dirty cars their way !!

Saturday, October 18, 2003 11:28 AM CDT

New addition to update:
Cub Scout Pack 1459 will be holding a CAR WASH on October 25 from 12-3 pm at the Shell Station at 13705 Lee Jackson Hwy. (across from RT 50 Staples in Chantilly) All proceeds will be sent to the Leukemia and Lymphoma Society in honor of Jeffrey. Bring some dirty cars their way !!

TGIF. What a busy week this was! The kids had many activities this week including piano lessons, swimming, soccer practice and viewing the homecoming floats at Chantilly High School. We have a new tree in our backyard - a River Birch. Angela says it is too small, but it is about 12 feet tall and should give us some nice shade near the swingset. This was earnings week at Nextel, so Stephen put in a few late nights to get ready. He is looking forward to a fun weekend; Meghan has a soccer game, Angela and Tasha are going camping, and the Brownie troop is planting a garden in honor of Jeffrey at Poplar Tree Elementary School. No rest for the weary.

The mail continues to be a significant event every day and we thank each of you for your kind words and generous donations. Speaking of donations, have you heard how much money our team has raised for the Leukemia and Lymphoma Society? We received a call today letting us know that as of October 16th, Jeffrey's Journey had raised over $40,000!!!!! Way to go team!!! And we know that there are still a few donations coming in.

The 5K run/1K Fun Walk has been scheduled for Mother's Day (May 9th). A memorial fund is being established. More details to follow.

Friday, October 17, 2003 10:19 PM EST

TGIF. What a busy week this was! The kids had many activities this week including piano lessons, swimming, soccer practice and viewing the homecoming floats at Chantilly High School. We have a new tree in our backyard - a River Birch. Angela says it is too small, but it is about 12 feet tall and should give us some nice shade near the swingset. This was earnings week at Nextel, so Stephen put in a few late nights to get ready. He is looking forward to a fun weekend; Meghan has a soccer game, Angela and Tasha are going camping, and the Brownie troop is planting a garden in honor of Jeffrey at Poplar Tree Elementary School. No rest for the weary.

The mail continues to be a significant event every day and we thank each of you for your kind words and generous donations. Speaking of donations, have you heard how much money our team has raised for the Leukemia and Lymphoma Society? We received a call today letting us know that as of October 16th, Jeffrey's Journey had raised over $40,000!!!!! Way to go team!!! And we know that there are still a few donations coming in.

The 5K run/1K Fun Walk has been scheduled for Mother's Day (May 9th). A memorial fund is being established. More details to follow.

Sunday, October 12, 2003 3:40 PM CDT

I decided today that we needed an update on the website.

Stephen and I drove with the girls to West Virginia to go apple picking after church today. When we arrived at our destination, we found that the apple orchard was not open for picking. The owners decided that after two great years of festival-like activities along with pick your own apples, it was time to stop. What a great disappointment!!! It seems that a new tradition needs to be started. As our days are filled with the routine activities of elementary aged children, we also find that our lives are far from routine. Life takes on a new normal at some point, but we are not there yet. Time does heal, but with such a large gapping hole it will take much time. We do, however, gain strength in the love that we share and the love that surrounds us from our family and friends. Thank you for your encouraging words and your support during this time.

Meghan and I volunteered at the South Riding "Light the Night" along with Auntie and Grammy on Saturday night. This event was attended by approximately 700 people. We were encouraged to see GS Troop 8355 walking in memory of Jeffrey. There were also some other individuals from Pender Methodist Church walking in his memory. Thank you! We should know our NEW total from "Light the Night" at the end of the week. Donations can still be made to the Leukemia & Lymphoma Society until October 31 and will be applied to the "Jeffrey's Journey" total. If you do send in a donation, please make sure that you write on the memo line--"Jeffrey's Journey" -- that way it will be credited to the right team.

Thursday, October 9, 2003 8:55 AM CDT

Today featured a follow-on article in the Washington Post regarding Jeffrey. It can be viewed on line (www.washingtonpost.com/fairfax) or on page 6 of the Fairfax Extra section of the Post.

Monday, October 6, 2003 9:28 AM CDT

Light the Night on October 4 was a huge success. We know that Jeffrey was looking upon us with great joy and enthusiasm. We had more than 150 walkers on our team and we reached an all time high - more than $30,000 for fundraising. Way to go!! The entire event raised over $265,000.

Thank you for your unconditional love and support. We arrived at our tent and found beautiful banners and posters, buttons with Jeffrey's smiling face on them, smiling friends and family members, and a lot of hugs. It was a night to remember.

In May, Poplar Tree Estates will be holding a 5K run 1K Walk in honor of Jeffrey. We hope to see you all there. Check this site (CaringBridge) for further information.

Enclosed is Jeffrey's eulogy.

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

This was Jeffrey’s favorite song. The song that we frequently sang as a family – just before our children would drift off to sleep. I find it amazing that of all the songs Jeffrey could have favored – from pre-school songs to pop songs to Barney tunes - my little boy chose this song as his favorite. The words of this song (our entrance song today) are words of phenomenal hope, faith and love – just as Jeffrey’s life was incredibly hopeful, faithful and loving.

Hope
Hope was an essential tenet of Jeffrey’s life. One example of his hope can be found in our nighttime prayers where each one of us would take a turn saying what we were thankful for. Without hesitation, Jeffrey’s turn would always begin by saying “I am thankful for a wonderful day.” Often times he would repeat this phrase several times. The remarkable truth is that Jeffrey would say this even on days that he was sick, days that he had high fevers, and days in which you and I would never describe as “wonderful.” I am so proud of Jeffrey for his ability to remain hopeful and optimistic in the face of many un-pleasantries.

On the day of Jeffrey’s second transplant, he was feeling particularly cooped up in his room. We turned around that frustration by singing and dancing to MomMom’s pre-school tunes. I’ll never forget this mental image of Jeffrey - with his crew cut and his bright orange “Bob the Builder” shirt – listening to a song about a rolling train ride where he bounced up and down and raised his hand when it was time to blow the whistle – shouting “Toot!”

Jeffrey generously shared his hope with others. I remember one day this spring when he wanted to practice writing his name. So, we broke out the leftover “Batman Valentines” and he wrote both his name and the names of the recipients (family members, doctors, and nurses). He received such joy from giving out those Valentine notes. And this was just one instance where it seemed as if Jeffrey was spreading hope and ministering to us, rather than vice versa.

Faith
Faith played a pivotal role in Jeffrey’s life. It was his idea to receive his 1st Holy Communion. In the profound language of a 3 year-old, he said to Tasha, “If God is all around me, why can’t he be inside of me?” Father Chamberlain encouraged us to be open to his idea and he came out to our house last February for an amazing evening in which Meghan and Jeffrey received the Body of Christ for the very first time.

Jeffrey’s faith strengthened in his final days. This week, he asked us to hold hands at nighttime for what he called “a Blessing.” Obviously, he knew that he was on his way to Jesus.

Love
Jeffrey is an incredibly loving little boy. He would tell Tasha and I “I love you as big as the ocean” or “…as wide as the sky.” Jeffrey loved his sisters, Angela and Meghan, and they reciprocated his love in many creative ways. The kids played doctor with hospital supplies, they colored Easter Eggs together and brought him crafts that helped him forget about his illness for a while. Jeffrey’s spirits would brighten up like a firefly whenever his sisters would visit Children’s Hospital - even if he felt poorly. After Hurricane Isabel knocked out our electricity and left us without television or music players for 24 hours, Angela and Meghan decided for themselves that Jeffrey still needed his morning entertainment. They created a life-size Sponge-Bob from scratch and used it to entertain Jeffrey with songs and dancing. Angela was Sponge-Bob and Meghan was a pirate. The children gave us a great big belly laugh when we needed it most!

Many of you know that Angela and her brownie troop raised money for Children’s Hospital through a Garage Sale. When they delivered the proceeds, the girls dressed up in their clown outfits and sang songs to the patients on 4-yellow (the oncology section at Children’s Hospital). Many of you also know how brave Meghan was in donating her bone marrow to her brother - not once, but twice.

Jeffrey had a special place in his heart for his grandparents. He would tease his Papa by saying “I am gonna kiss your wife!” To which Papa would say “Ohhhh that frosts me!” Jeffrey and Janet would get together for a smooch - even though Papa threatened him with a knuckle sandwich. Papa loved to tease his grandchildren and Jeffrey learned how to tease right back. Jeffrey also loved MomMom and PopPop’s visits because he knew they would bring special crafts, music and sweet cantaloupe. He also relished visits with them at Bethany Beach where he could dig in the sand, fly a kite, picnic on the beach, search for dolphins, and frolic with his cousins in the surf. The ocean is a place where he – and the rest of us – could forget about our worries.

Jeffrey’s love spread to friends and strangers alike through his website – Jeffrey’s Journey. Your messages and words of encouragement mean so much to us.

I’d like to conclude his eulogy by asking us to bow our heads and call to mind Jeffrey’s life. As we do so, let us reflect upon how his life was filled with tremendous Hope, unconditional Love and a strong faith in Jesus Christ. We take courage in his favorite song:

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

Thursday, October 2, 2003 5:15 PM CDT

Information update regarding "Light the Night":

For those individuals walking but who have not registered, please register at 5:30 pm at the registration desk on Market Street in the Reston Town Center.
Fundraisers- please turn in your money by Friday to Kelly or directly to the volunteers at the registration desk Saturday. Make sure you have "Jeffrey's Journey" prominently on the envelope. Look for the only double wide tent with the Jeffrey's Journey sign (we believe it will be on Discovery Avenue). This is where our team will congregate at 5:45 pm on Saturday. Balloons, t-shirts, sweatshirts and food vouchers will be distributed at this time.

Many thanks to our all of our loved ones who traveled great distances and poured out their hearts for us. You made the past few days bearable and, at times, enjoyable. Jeffrey's wake and funeral were a beautiful expression of how he lived his life. Enclosed is Jeffrey's eulogy.

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

This was Jeffrey’s favorite song. The song that we frequently sang as a family – just before our children would drift off to sleep. I find it amazing that of all the songs Jeffrey could have favored – from pre-school songs to pop songs to Barney tunes - my little boy chose this song as his favorite. The words of this song (our entrance song today) are words of phenomenal hope, faith and love – just as Jeffrey’s life was incredibly hopeful, faithful and loving.

Hope
Hope was an essential tenet of Jeffrey’s life. One example of his hope can be found in our nighttime prayers where each one of us would take a turn saying what we were thankful for. Without hesitation, Jeffrey’s turn would always begin by saying “I am thankful for a wonderful day.” Often times he would repeat this phrase several times. The remarkable truth is that Jeffrey would say this even on days that he was sick, days that he had high fevers, and days in which you and I would never describe as “wonderful.” I am so proud of Jeffrey for his ability to remain hopeful and optimistic in the face of many un-pleasantries.

On the day of Jeffrey’s second transplant, he was feeling particularly cooped up in his room. We turned around that frustration by singing and dancing to MomMom’s pre-school tunes. I’ll never forget this mental image of Jeffrey - with his crew cut and his bright orange “Bob the Builder” shirt – listening to a song about a rolling train ride where he bounced up and down and raised his hand when it was time to blow the whistle – shouting “Toot!”

Jeffrey generously shared his hope with others. I remember one day this spring when he wanted to practice writing his name. So, we broke out the leftover “Batman Valentines” and he wrote both his name and the names of the recipients (family members, doctors, and nurses). He received such joy from giving out those Valentine notes. And this was just one instance where it seemed as if Jeffrey was spreading hope and ministering to us, rather than vice versa.

Faith
Faith played a pivotal role in Jeffrey’s life. It was his idea to receive his 1st Holy Communion. In the profound language of a 3 year-old, he said to Tasha, “If God is all around me, why can’t he be inside of me?” Father Chamberlain encouraged us to be open to his idea and he came out to our house last February for an amazing evening in which Meghan and Jeffrey received the Body of Christ for the very first time.

Jeffrey’s faith strengthened in his final days. This week, he asked us to hold hands at nighttime for what he called “a Blessing.” Obviously, he knew that he was on his way to Jesus.

Love
Jeffrey is an incredibly loving little boy. He would tell Tasha and I “I love you as big as the ocean” or “…as wide as the sky.” Jeffrey loved his sisters, Angela and Meghan, and they reciprocated his love in many creative ways. The kids played doctor with hospital supplies, they colored Easter Eggs together and brought him crafts that helped him forget about his illness for a while. Jeffrey’s spirits would brighten up like a firefly whenever his sisters would visit Children’s Hospital - even if he felt poorly. After Hurricane Isabel knocked out our electricity and left us without television or music players for 24 hours, Angela and Meghan decided for themselves that Jeffrey still needed his morning entertainment. They created a life-size Sponge-Bob from scratch and used it to entertain Jeffrey with songs and dancing. Angela was Sponge-Bob and Meghan was a pirate. The children gave us a great big belly laugh when we needed it most!

Many of you know that Angela and her brownie troop raised money for Children’s Hospital through a Garage Sale. When they delivered the proceeds, the girls dressed up in their clown outfits and sang songs to the patients on 4-yellow (the oncology section at Children’s Hospital). Many of you also know how brave Meghan was in donating her bone marrow to her brother - not once, but twice.

Jeffrey had a special place in his heart for his grandparents. He would tease his Papa by saying “I am gonna kiss your wife!” To which Papa would say “Ohhhh that frosts me!” Jeffrey and Janet would get together for a smooch - even though Papa threatened him with a knuckle sandwich. Papa loved to tease his grandchildren and Jeffrey learned how to tease right back. Jeffrey also loved MomMom and PopPop’s visits because he knew they would bring special crafts, music and sweet cantaloupe. He also relished visits with them at Bethany Beach where he could dig in the sand, fly a kite, picnic on the beach, search for dolphins, and frolic with his cousins in the surf. The ocean is a place where he – and the rest of us – could forget about our worries.

Jeffrey’s love spread to friends and strangers alike through his website – Jeffrey’s Journey. Your messages and words of encouragement mean so much to us.

I’d like to conclude his eulogy by asking us to bow our heads and call to mind Jeffrey’s life. As we do so, let us reflect upon how his life was filled with tremendous Hope, unconditional Love and a strong faith in Jesus Christ. We take courage in his favorite song:

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

Tuesday, September 30, 2003 9:59 AM EST

Many thanks to our all of our loved ones who traveled great distances and poured out their hearts for us. You made the past few days bearable and, at times, enjoyable. Jeffrey's wake and funeral were a beautiful expression of how he lived his life. Enclosed is Jeffrey's eulogy.

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

This was Jeffrey’s favorite song. The song that we frequently sang as a family – just before our children would drift off to sleep. I find it amazing that of all the songs Jeffrey could have favored – from pre-school songs to pop songs to Barney tunes - my little boy chose this song as his favorite. The words of this song (our entrance song today) are words of phenomenal hope, faith and love – just as Jeffrey’s life was incredibly hopeful, faithful and loving.

Hope
Hope was an essential tenet of Jeffrey’s life. One example of his hope can be found in our nighttime prayers where each one of us would take a turn saying what we were thankful for. Without hesitation, Jeffrey’s turn would always begin by saying “I am thankful for a wonderful day.” Often times he would repeat this phrase several times. The remarkable truth is that Jeffrey would say this even on days that he was sick, days that he had high fevers, and days in which you and I would never describe as “wonderful.” I am so proud of Jeffrey for his ability to remain hopeful and optimistic in the face of many un-pleasantries.

On the day of Jeffrey’s second transplant, he was feeling particularly cooped up in his room. We turned around that frustration by singing and dancing to MomMom’s pre-school tunes. I’ll never forget this mental image of Jeffrey - with his crew cut and his bright orange “Bob the Builder” shirt – listening to a song about a rolling train ride where he bounced up and down and raised his hand when it was time to blow the whistle – shouting “Toot!”

Jeffrey generously shared his hope with others. I remember one day this spring when he wanted to practice writing his name. So, we broke out the leftover “Batman Valentines” and he wrote both his name and the names of the recipients (family members, doctors, and nurses). He received such joy from giving out those Valentine notes. And this was just one instance where it seemed as if Jeffrey was spreading hope and ministering to us, rather than vice versa.

Faith
Faith played a pivotal role in Jeffrey’s life. It was his idea to receive his 1st Holy Communion. In the profound language of a 3 year-old, he said to Tasha, “If God is all around me, why can’t he be inside of me?” Father Chamberlain encouraged us to be open to his idea and he came out to our house last February for an amazing evening in which Meghan and Jeffrey received the Body of Christ for the very first time.

Jeffrey’s faith strengthened in his final days. This week, he asked us to hold hands at nighttime for what he called “a Blessing.” Obviously, he knew that he was on his way to Jesus.

Love
Jeffrey is an incredibly loving little boy. He would tell Tasha and I “I love you as big as the ocean” or “…as wide as the sky.” Jeffrey loved his sisters, Angela and Meghan, and they reciprocated his love in many creative ways. The kids played doctor with hospital supplies, they colored Easter Eggs together and brought him crafts that helped him forget about his illness for a while. Jeffrey’s spirits would brighten up like a firefly whenever his sisters would visit Children’s Hospital - even if he felt poorly. After Hurricane Isabel knocked out our electricity and left us without television or music players for 24 hours, Angela and Meghan decided for themselves that Jeffrey still needed his morning entertainment. They created a life-size Sponge-Bob from scratch and used it to entertain Jeffrey with songs and dancing. Angela was Sponge-Bob and Meghan was a pirate. The children gave us a great big belly laugh when we needed it most!

Many of you know that Angela and her brownie troop raised money for Children’s Hospital through a Garage Sale. When they delivered the proceeds, the girls dressed up in their clown outfits and sang songs to the patients on 4-yellow (the oncology section at Children’s Hospital). Many of you also know how brave Meghan was in donating her bone marrow to her brother - not once, but twice.

Jeffrey had a special place in his heart for his grandparents. He would tease his Papa by saying “I am gonna kiss your wife!” To which Papa would say “Ohhhh that frosts me!” Jeffrey and Janet would get together for a smooch - even though Papa threatened him with a knuckle sandwich. Papa loved to tease his grandchildren and Jeffrey learned how to tease right back. Jeffrey also loved MomMom and PopPop’s visits because he knew they would bring special crafts, music and sweet cantaloupe. He also relished visits with them at Bethany Beach where he could dig in the sand, fly a kite, picnic on the beach, search for dolphins, and frolic with his cousins in the surf. The ocean is a place where he – and the rest of us – could forget about our worries.

Jeffrey’s love spread to friends and strangers alike through his website – Jeffrey’s Journey. Your messages and words of encouragement mean so much to us.

I’d like to conclude his eulogy by asking us to bow our heads and call to mind Jeffrey’s life. As we do so, let us reflect upon how his life was filled with tremendous Hope, unconditional Love and a strong faith in Jesus Christ. We take courage in his favorite song:

“Though the Mountains May Fall
and the Hills turn to dust,
Yet the love of the Lord will stand.
As a shelter for all who will call on his name,
Sing the praise and the Glory of God”

Friday, September 26, 2003 12:27 AM CDT

Jeffrey Douglas entered the Kingdom of God on September 25, 2003 at 10:30 am after a long journey. His last moments on earth were peaceful and we know that he was ushered directly to Heaven by his guardian angels. Jeffrey is our Epiphany and has shown us grace, hope, faith and tremendous love. We have all been blessed by his short life. We have all been touched by an angel. Our vision of him is blowing angel kisses to everyone who loved him.

The wake has been scheduled for Sunday, September 28, from 2-5 with a prayer service to follow at Adams-Green Funeral Home, 721 Elden Street, Herndon, VA.

Funeral arrangements have been made for Monday, September 29 at St. John Neumann Catholic Parish in Reston, VA at 10:30 am. Interment at Fairfax Memorial. Since blue is his favorite color, let us show our love by wearing blue instead of black.

Thursday, September 25, 2003 3:39 PM CDT

Jeffrey Douglas entered the Kingdom of God this morning at 10:30 am after a long journey. His last moments on earth were peaceful and we know that he was ushered directly to Heaven by his guardian angels. Jeffrey is our Epiphany and has shown us grace, hope, faith and tremendous love. We have all been blessed by his short life. We have all been touched by an angel. Our vision of him is blowing angel kisses to everyone who loved him.

Funeral arrangements have been made for Monday, September 30 at St. John Neumann Catholic Parish in Reston, VA at 10:30 am. Since blue is his favorite color, let us show our love by wearing blue instead of black. The wake is scheduled for Sunday evening also at St. John Neumann.

Tuesday, September 23, 2003 9:38 PM CDT

(New information has been added)
What a terrific turnout at BajaFresh - we raised $754 to be added to our team. Yeah!! We were overwhelmed and overjoyed to see so many of our friends, neighbors, co-workers, soccer members, and complete strangers join us for terrific food and a terrific cause. Your presence brings us joy during a time of distress. May God Bless each and every one of you.

Jeffrey and the rest of us have been struggling thru the past few days. There is no easy way to say this. His leukemia count continues to rise, his spleen continues to swell, and he is in considerable pain. Knowing that our little guy is a real trooper, we switched from codene to morphine in hopes that he will be comforted. Please pray that his pain is taken away from him.

Jeffrey lays down most of the day... sitting up a dozen (or so) times per day to nibble at food, drink, color, or get a sponge bath. He is (understandably) irritable even though his sisters and parents are going to great lengths to comfort him.

We hosted a very emotional mass at our home on Sunday with the extended Ball family, Virostek family, and Father Charles Chamberlain. Even now, our faith strengthens us and helps us to endure.

Wednesday is the chosen day to take Jeffrey to the hospital. Stephen and I will be staying at the hospital with him.

REMINDERS:

October 4 is just around the corner. If you and your family are planning on joining us, please make sure everyone is registered. It takes a few minutes, but it will make it much easier the night of the walk if everyone is pre-registered. All donations should be turned in to us along with your walker envelopes by September 26 so that every effort can be made to have all food vouchers, balloons, and t-shirts to everyone that night.

Our plan is to meet in front of Clyde's at 5:45pm to distribute the balloons. At this point, we have 51 walkers so just look for our banner and a big crowd. :) Kelly Johnson has taken over my administrative role as Team Captain. She will be contacting all those that have registered with any additional information. She can be reached at kellyLJ1@cox.net

Tune in again for more information along the way.

Tuesday, September 23, 2003 11:41 AM CDT

What a terrific turnout at BajaFresh! We were overwhelmed and overjoyed to see so many of our friends, neighbors, co-workers, soccer members, and complete strangers join us for terrific food and a terrific cause. Your presence brings us joy during a time of distress. May God Bless each and every one of you.

Jeffrey and the rest of us have been struggling thru the past few days. There is no easy way to say this. His leukemia count continues to rise, his spleen continues to swell, and he is in considerable pain. Knowing that our little guy is a real trooper, we switched from codene to morphine in hopes that he will be comforted. Please pray that his pain is taken away from him.

Jeffrey lays down most of the day... sitting up a dozen (or so) times per day to nibble at food, drink, color, or get a sponge bath. He is (understandibly) irritable even though his sisters and parents are going to great lengths to comfort him.

We hosted a very emotional mass at our home on Sunday with the extended Ball family, Virostek family, and Father Charles Chamberlain. Even now, our faith strengthens us and helps us to endure.

REMINDERS:

October 4 is just around the corner. If you and your family are planning on joining us, please make sure everyone is registered. It takes a few minutes, but it will make it much easier the night of the walk if everyone is pre-registered. All donations should be turned in to us along with your walker envelopes by September 26 so that every effort can be made to have all food vouchers, balloons, and t-shirts to everyone that night.

Our plan is to meet in front of Clyde's at 5:45pm to distribute the balloons. At this point, we have 51 walkers so just look for our banner and a big crowd. :)

Tune in again for more information along the way.

Monday, September 22, 2003 9:45 PM CDT

Friday, September 19, 2003 9:10 PM CDT

Jeffrey missed his appointment today due to the hurricane wiping out electricity and water in our area. We will be heading down to Children's on Saturday for more RBC and platelets. Jeffrey did not get a boost from the last round of red blood cells. He is very tired and is experiencing pain in his leg. He had a swollen lymph node behind his knee and now the knee is swollen considerably. Walking is a chore and quite painful for him. The doctors believe that it is the leukemic blasts that are causing the swelling and obviously the pain. His marrow is full of those "beasts". We need your prayers that his pain will be lifted up. It isn't fair that this little guy has been through so much and must endure so much more.

Jeffrey's days are filled with couch activities when he is feeling up to it. He mostly sleeps and just lies around. Today for entertainment, the girls put on a show of Sponge Bob for him. It brought a smile to his face which was a positive moment in our day. Jeffrey also did some cut and paste activities. He loves to use scissors! I am thankful that he only uses them on paper.

Only two more days until Baja Fresh and two weeks to Light the Night. We are looking forward to both events.

Tuesday, September 16, 2003 9:42 PM CDT

Jeffrey had his usual Tuesday visit to the clinic. This weekend had been a sleepy one for Jeffrey with him sleeping a lot more than usual and just not feeling up to snuff. Today his CBC revealed that he was once again in need of RBC's and platelets. We had just received RBC's on Friday so it was upsetting to hear that he was in need of more so soon. Bless be to God, though, he had some very kind and generous friends out there that came down to donate so he could have these transfusions without any problems. Thank you!! His CBC also revealed an elevated white count and a higher percentage of blasts circulating in his bloodstream. This probably accounts for his RBC count being lower so soon after a transfusion. The news also came that his spleen is enlarged even more. To say the least, it was not a day of good news. Please pray that Jeffrey will have a brighter tomorrow. We are continuing to pray for healing and strength for all of us.

We are touched and delighted to see our team for "Light the Night" growing. To make life somewhat easier for your team captain, Stephen and I will be collecting Walker Envelopes on September 22 at Baja Fresh. If you are ready to turn in your donations, you can do so at this time. Don't worry if you are not completely done, we can continue collecting donations until the 26th to be applied to our team. If you have late donations, money may be turned in on the night of October 4, but will not be credited to Jeffrey's Journey.

Sunday, September 14, 2003 9:01 PM CDT

Jeffrey's weekend was not as exciting as most, but he did have a few great adventures. Daddy and Jeffrey followed a hook and ladder truck in DC (while traveling to Children's for platelets) and had a blast weaving through the streets of DC seeing what a really long firetruck does. Who had more fun-Daddy or Jeffrey? Saturday night, Jeffrey and his sisters went to their grandparents for a little playtime and dinner with the cousins. Jeffrey was not feeling well, but managed to have some fun with Timmy, Katie, and Beth. They found a salamander in MomMom and PopPop's yard. Sunday, he felt icky again, but perked up long enough to attend a friend's birthday party. He had a scavenger hunt, a pinata, and jeeps to drive around. It was a hit with the little boys. He then came home and slept for 2 hours.

The fevers continue to be a problem, but Jeffrey just hangs in there like a trooper. He gets up in the middle of the night for a drink of water, a cool washcloth, and a snuggle from Mommy and Daddy. It has just become our routine.

There has been some questions regarding Light the Night so let me see if I can address them. First, all donations can be given to us. The checks should be made out to the Leukemia and Lymphoma Society. Secondly, I got onto the website and there has been some difficulty registering online over the weekend. I can get people registration forms- please just email me and I will get those out to you. If you have registered online, you will receive a walker envelope and all the necessary supplies you need to collect donations. Please contact us if you have not received these supplies and we will try to get you set up. If you are going to walk on the 4th of October, please sign up as soon as possible as we need to get all donations into the Leukemia and Lymphoma Society before September 26th for it to count for our team. Thank you to all who have sent us donations and to those that are walking with us. We appreciate your continued support!!

Sunday, September 7, 2003 9:15 PM EST

Today was a good day. Jeffrey woke up without a fever and stayed fever free for most of the day. Your prayers are being heard. Thanks be to God!

Jeffery and the rest of us jumped out of bed and walked/ran in the Fair Lakes 2K. Papa and Auntie ran in the 8K. It was a gorgeous (cool, sunny and no humidity) morning and we were so glad to be part of the fund raiser which increases awareness of Bone Marrow Donors.

Mid-morning, Daddy and the kids drove to the White House in Washington DC where we saw the President land in his helicopter (new picture). George, Laura, Barney and Spot were coming back from a weekend at Camp David. After meeting George W. and getting his autograph, Angela, Meghan, and Jeffrey held a breifing in the White House Press Room (new picture) to discuss their exciting day. Thanks to the Coffey family for a truly spectacular, and patriotic, experience.

Just a reminder - We are gearing up for "Light the Night" event on October 4th. If you have not registered yet, please do so at www.lightthenight.org. Our team name is the same as last year - "Jeffrey's Journey."

We are also looking forward to a great dinner at Baja Fresh in Fairfax on September 22nd from 4-10 pm. If you are looking for a great dinner without cooking, come and join us and support the Leukemia and Lymphoma Society and Jeffrey's Journey!!

Friday, September 5, 2003 8:42 PM CDT

Our past few days have been up and down with some pretty high fevers sprinkled into our nights and days. A week that we thought would be spent just Mommy and Jeffrey time has been spent at Children's rather than at home. Please pray that these fevers will disappear and leave him alone. It just isn't any fun when he feels yucky.

There has been some questions regarding blood donations. Due to Jeffrey's transplant regiment, he was only allowed to receive A- and AB- blood products. However, these restrictions have been lifted and he may receive A, AB and O negative RBC's. He may receive A, AB and O platelets regardless of the RH factor since they spin out all of the RBC's. If you are willing to donate, please make an appointment at Children's for directed donations. Blood at the American Red Cross cannot be direct donated to Jeffrey but is always extremely useful!!

We are gearing up for the Light the Night event and have added more members to our team. We are also looking forward to a great dinner at Baja Fresh on September 22 from 4-10 pm. If you are looking for a great dinner without cooking, come and join us and support the Leukemia and Lymphoma Society and our team - Jeffrey's Journey!!

Tuesday, September 2, 2003 8:03 PM CDT

Happy 1st Day of School!

The children awoke with great excitement today as the new school year began at Poplar Tree Elementary School. The girls were decked out in fashionable clothes (see new picture) and could not wait to get started. Beau and Grammy joined in out traditional family walk on the 1st day of school. Both girls had good days with new teachers and new classmates.

On Monday we journeyed to Mount Vernon to hang out at Martha and George's home. It had been years (perhaps decades) since Tasha and Stephen were there last. They have done so much to make the plantantion more enjoyable like adding a Wharf on the river and air conditioning to the main house. We learned about George's career moves prior to becoming president, his love for agriculture, and his 30-year rennovation project on his own house. Since Angela is getting ready to study Virginia history this year, our trip took on added meaning.

On Sunday we had an excellent trip to Baltimore with Grammy and Papa. We checked out the Science Museum and enjoyed a relaxing boat ride across the Inner Harbor. The weather was perfect, so we feasted on pasta and salad in one of the garden's of Little Italy.

Jeffrey did not feel well tonight and he continues to have fevers. He will get another transfusion tomorrow, so thanks to all who have donated. Your generosity is making it possible for us to enjoy these days together.

Saturday, August 30, 2003 1:46 PM CDT

We are enjoying the final days of summer vacation before school starts on Tuesday. Today is the annual Poplar Tree Picnic complete with Moon Bounce, Burgers and Dogs, Snow Cones and Beer Wagon (not necessarily in that order).

Jeffrey continues to feel OK this week, but his energy level is down. His fevers continue on an intermittent basis, but thankfully he has not spiked a high temperature since Tuesday. We have renewed our efforts in fighting his leukemia with a high-fiber diet and with a Chinese herb called Artemisinin. We recently learned about this treatment through a friend and some handy research on the Internet. We are being advised by a naturopathic doctor who has treated a few other cancer patients successfully (achieved a remission). In addition, there are no known side-effects, so our feeling is "why not give it a try?" Our doctors at Children's Hospital are also supportive. Jeffrey is taking Artemisinin 4 times per day along with Cod Liver Oil to help with the digestion of the herb. Jeffrey doesn't mind since the oil doesn't have much taste to it. We continue to pray for his healing.

We are beginning to accept dontations for the Leukemia and Lymphoma Society's "Light the Night" event scheduled for October 4th at Reston Town Center. Checks can be made out to the Leukemia and Lymphoma Society and sent to our home address. We are also planning a night out at Baja Fresh in Fairfax. Proceeds will be donated to our team. Look here for more announcements.

Tuesday, August 26, 2003 6:17 PM CDT

On Friday, we celebrated Meghan's 7th birthday. Mom and Dad wanted her to repeat her 6th birthday because it was such a huge success. We celebrated with an Oreo cake, our grandparents and Auntie Alison.

This August weather is terrific! (I'm referring to the intervals between the torrential rain and repeated lightning strikes). On Saturday, we met our cousins and aunts and uncles at MomMom and PopPop's house for a day of Badminton, Treasure Hunts, home grown tomatoes from Brian and Mary's garden, and a wonderful ham dinner. On Sunday, we went to Mass, wish Fr. Chamberlain a happy 40th birthday and hurried home to get ready for Meghan's party with her friends. It was fabulous day for a pool party. All the girls played nicely and enjoyed jumping off the 12" diving board and whacking the turtle pinata.

On Monday, we had an enjoyable grilled chicken dinner with Fr. Chamberlain, Fr. Brown and Fr. Dockerty (the 3 priests at St. John Neumann). Our time together makes us realize that Jeffrey's Journey would be so much more difficult without our faith in Jesus and the support of our wonderful parish.

Jeffrey has been a trooper again this week. We are receiving platelets twice per week and we are requiring red blood cells (RBCs) more often also. He has been a joyful little boy this week - even as he is fighting off low grade fevers and a cough. We are trying to improve his (and our own) eating habits by lessening his sugar and carbohydrate intake while increasing his intake of fruits, water and vegetables. Please be supportive of our efforts.

May God Bless each of you for watching our children, sharing a few kind words with us, and bringing us dinner on Tuesdays. We hope that you have a wonderful Labor Day weekend and a safe start to the new school year.

Wednesday, August 20, 2003 8:23 PM CDT

We had a nice weekend. On Sunday, we enjoyed viewing the "Flying Circus" in Bealton, Virginia, with the Bilidas family. The pilots and the WWII era bi-planes were fun to watch for both kids and adults.

On Tuesday, Jeffreys counts were down again and he needed both red blood cells and platelets. The leukemic blast count in his peripheral blood was elevated and his spleen was enlarged. These are worrisome signs, for sure, but they are not unexpected. Jeffrey's spirits and energy level are still good and we are very thankful for these blessings. As for the rest of us, we continue to plug along in our daily lives as best we can.

Blood donations of all types are desparately needed. If you can find the time to give blood this month, it sure will make a difference.

Grammy's dog, Beau, got "Butched" at the Barber shop today. Even though he lost a bit of cuteness, we still love him as a member of our family. On Wednesday, Jeffrey and his sisters got to meet a big puppy named Tucker. His paws were bigger than Jeffrey's foot!

Thursday, August 14, 2003 10:08 AM CDT

Tuesday's visit to the clinic was fairly uneventful. Jeffrey's platelets were non-existent so a platelet transfusion was in order. I am so grateful that he has been tolerating those transfusions well. We were not in need of RBC yet. I think that will be coming soon enough. His spleen has been a bit enlarged due to the leukemia, but has not been causing him any pain. Yet another thing to be thankful for!

Jeffrey continues to be the amazing wonder boy. He is energetic and feeling good. He gets emotional at the end of the day due to exhaustion, but don't we all?! We are so thankful for great days!

Taking care of Beau has become one of our favorite pastimes. Yes, it is true that Mommy loves to cuddle with the puppy and get down on the floor and play with him. He is so sweet. Beau loves the children and gets so excited when they walk in the door. He becomes the dancing dog and leaps into their laps and then performs. He is quite a character!

We are getting geared up for Light the Night on October 4 at 6:30 pm in Reston, Virginia. We will be sending out forms and donation requests shortly. We hope that it will once again be a huge success for our team - Jeffrey's Journey and for the Leukemia and Lymphoma Society.

Tuesday, August 5, 2003 10:24 PM CDT

We have returned from a relaxing and refreshing vacation to Bethany Beach. It was so much fun that no one wanted to return. We picked out all the houses around town that our friends and family could buy so that we would all be together having so much fun in the sand and surf. While away, we made drip castles, swam in the ocean, played Bocce Ball, flew a kite, giggled lots and just had plain fun all around. Thank you to all that made this happen!!

Our visit to Children's went smoothly today. Jeffrey received platelets and RBC today which were both direct donated to him. Thank you to all who have gone down to donate for him!! The results of the marrow confirmed the wrong news. We feel deceived with the news today that we have made little to no progress in the area of beating the leukemia. This was a shock to all of us. It was very easy to receive what we thought was great news after our last visit, but the news today was extremely hard to comprehend. We are all baffled by the turn of events. We know in our hearts that this past week was a gift - we were able to relax and enjoy with no worries on our shoulders. We will continue to remain optimistic knowing that God does work in mysterious ways. We ask that you all continue to pray hard for his healing and for continued strength for all of us.

Wednesday, July 30, 2003 9:22 AM CDT

Today is a beautiful day and one filled with joy in our family! Two weeks ago, Stephen and I were given the news that the leukemia had progressed to a significant level. Jeffrey's blood was almost 50% leukemic cells and his marrow was showing 75% leukemic blasts. News like this is so very devastating, but we chose to think about each day as a gift and enjoy every day that we had together as a family. Well... yesterday the most wonderful news was presented to us. Jeffrey's blood was only showing 7% blasts. The Lord's healing hand sure had something to do in this turn of events. Our heads are still swimming and I don't think that our feet have touched the ground yet. We will go away this evening to the beach with a heavy load being lifted off our shoulders. Tuesday, Jeffrey must undergo more testing to confirm this news, but today is a day to rejoice. Please pray that the leukemia continues to regress rather progress.

Tuesday, July 29, 2003 9:48 AM EST

What a week we had! Our week included many fun activities. Tasha took the kids to see a Veggie Tales movie about Jonah, we had a picnic lunch with Daddy at Nextel, and we saw Cassie and Marcy perform at WolfTrap's Theatre-in-the-Woods. On Friday, our whole family helped Austin and Jared celebrate their 4th Birthdays with a Pizza Party that featured a giant wet slide and a trampoline. Daddy had a terrific time making all the kids POP-up off the trampoline!

On Saturday, we enjoyed watching Angela swim her best-ever time in breastroke and near-best-ever time in the butterfly race. We played with Beau, Auntie Allison, Grammy and Papa in the afternoon before feasting at the Swim Team Banquet. Angela received the "Flip-turn Revolt" paper plate award and Meghan received the "Girl Talk" paper plate award. We have posted a new picture of the girls and their trophies on this site.

On Sunday, MomMom and PopPop treated all their kids and grandchildren to a cruise on the Potomac River! The weather cooperated - not too hot and not too humid! The boat ride was very smooth and we enjoyed viewing the monuments, bridges, airplanes taking off from Reagan National Airport, the President's helicopter, jet skis, a Fireboat, the Coast Guard Patrol boat, sailboats, houseboats, speedboats, and kayaks. Whew! The Brunch buffet on the Nina Dandy was delicious and the children were well behaved.

Jeffrey continues to feel well, eat well and enjoy all of our summertime activities. What a Blessing! We have a routine clinic visit today and we will be driving to Bethany Beach tomorrow evening.

Tuesday, July 29, 2003 9:28 AM EST

What a week we had! Our week included many fun activities. Tasha took the kids to see a Veggie Tales movie about Jonah, we had a picnic lunch with Daddy at Nextel, and we saw Cassie and Marcy perform at WolfTrap's Theatre-in-the-Woods.

On Saturday, we enjoyed watching Angela swim her best-ever time in breastroke and near-best-ever time in the butterfly race. We played with Beau, Auntie Allison, Grammy and Papa in the afternoon before feasting at the Swim Team Banquet. Angela received the "Flip-turn Revolt" paper plate award and Meghan received the "Girl Talk" paper plate award. We have posted a new picture of the girls and their trophies on this site.

On Sunday, MomMom and PopPop treated all their kids and grandchildren to a cruise on the Potomac River! The weather cooperated - not too hot and not too humid! The boat ride was very smooth and we enjoyed viewing the monuments, bridges, airplanes taking off from Reagan National Airport, the President's helicopter, a Fireboat, a Police boat, the Coast Guard Patrol boat, sailboats, houseboats, speedboats, kayaks, other cruise boats and jet skis. Whew! The Brunch buffet on the Nina Dandy was delicious and the children were well behaved.

Jeffrey continues to feel well, eat well and enjoy all of our summertime activities. What a Blessing! We have a routine clinic visit today and we will be driving to Bethany Beach tomorrow evening.

Monday, July 21, 2003 8:51 AM CDT

We have had a very busy week. On Tuesday, I went down to Children's Hospital for some tests. I had been very tired and they found out that my hemoglobin was low so I needed platelets and RBC. If anyone can go donated whole blood or platelets, I can really use them. Thanks!

On Wednesday and Thursday, I went to VBS at my preschool. I had so much fun and was very disappointed that it only lasted one week. It was probably a good idea, though, because I came down with a fever and a cold. My daddy took me to Children's on Friday for more blood and platelets. When we were there, they looked me over. I think I have a cold in the nose. Today, I feel much better!

With all of the adventures, we have still made time for the new boy in our life, Beau. I really love him a lot. He took a nap right next to me yesterday and I sure did love to snuggle with him!

Saturday, my cousins, Amy and Erin, came for a visit. We had a really nice time playing. Amy danced with me and that made me feel very special. On Sunday, the girls did the Water Olympics at our pool. It looked like a lot of fun, but I was too little to participate. When they came home, Daddy put Uncle Brian to work. I could tell that my daddy really appreciated all the help he got this weekend getting the bushes pruned and the garden weeded. Thank you Uncle Brian and Aunt Mary for making my mommy and daddy feel good.

I am sure that the adventures will continue this week. Please pray for me that I will continue to feel well. Also, give blood when you can.
Love, Jeffrey

Sunday, July 13, 2003 9:32 PM CDT

Jeffrey accompanied us to Mass at St. John Neumann this morning. It felt terrific to worship together as a family. Father Chamberlain - the priest who presided over Meghan and Jeffrey's First Holy Communion - was saying Mass today. So it was very special for us that Jeffrey received the Body of Christ again from his favorite priest. When he came back to the pew, Jeffrey was all smiles and he said "Yummy! I want more of that later on!"

After Mass we were in for a big surprise. Grammy and PaPa have a new, apricot toy poodle. His name is Petit Beau, or Little Handsome, but the kids call him "Beau" for short. There were many giggles, cuddles and smiles in our family today. It was good medicine for all of us.

Tuesday, July 8, 2003 8:48 PM EDT

We had a terrific July 4th weekend. On the 3rd, we took in the sights of Washington DC with Uncle Don, Aunt Sherry and Grammy. It was fun playing "tourist" in our own home town and we saw many sights including the Viet Nam Verterans' Memorial, Korean War Memorial, Union Station, the Supreme Court, and the Capitol building. We also enjoyed visiting Scotland, Mali, and Appalachia at the Folk Life Festival on the Mall.

On the 4th of July, we enjoyed watching the marching bands, color guard, and motorcycles in the Fairfax Parade. We hosted a BBQ at our house with the Coose's and the Ball's. After dinner we had a blast playing wiffle ball. Daddy got rocked by those heavy hitters. We topped off the day with a fireworks show in our own cul-de-sac.

On Saturday, Angela swam well in her meet and placed 3rd among 9 & 10 girls in Butterfly. That afternoon, we drove to Lancaster County, PA. On Sunday, July 6th, we all went to Mass at St. Anthony of Padua's and we explored Amish country via Buggy ride. Then we journeyed to nearby Starsburg to ride the Strasburg Railroad and visit the Pennsylvania Railroad Museum. We ate lunch while riding the train - all the way to Paradise and back. All of us learned a whole bunch about how trains work and how they evolved over the past 150 years.

Today was a clinic visit. We knew that Jeffrey's platelets were very low because of all the brusing on his body. Sure enough he required yet another platelet transfusion. All other blood counts were pretty stable. We are asking for platelet donors of any blood type to visit Children's Hospital to donate platelets or whole blood. The phone number is 202-884-KIDS.

Thank you to all who are praying for us. Your support is invaluable to our family.

Wednesday, July 2, 2003 7:57 AM EST

This week’s visit to Children’s Hospital was a little different. On Monday, we infused Jeffrey with t-cells (again) and added a drug called Interluken-2 to help “activate” the t-cells. Tasha stayed overnight with Jeffrey and the infusion went well. It is our sincere hope that these t-cells will have an effect on the “bullies” that sadly still remain inside his body. As many of you know, Jeffrey has undergone several bone marrow aspirates over the past two months. We were seeking to explain why his platelet counts had fallen after his 2nd bone marrow transplant in March and why he continues to bruise so easily. The results of the aspirates confirmed our worst fears - the acute myelogenous leukemia (AML) had not been completely obliterated with the last round of chemotherapy and radiation.

Obviously, we were not eager to share this devastating news. Since Jeffrey was feeling healthy, our decision to share this news was postponed. Much has transpired during the past few weeks, but what remains constant is that Jeffrey is feeling well. He is active, happy and without discomfort. The only outward signs of the leukemia are the bruises on his legs and forehead. Some of you may have seen him swimming at the pool or biking with his sisters in our cul-de-sac. It is truly a blessing that we have had a semblance of normalcy when his body is in so much turmoil. We have taken advantage of this time to celebrate at Hershey Park, at Bethany Beach and we are planning to have an active and fun summer.

Many of you will undoubtedly ask “What can I do?” Please continue to pray for our family because we have derived so much strength from our faith. Please donate blood as often as you can. There is an Inova Blood Drive this weekend at Reston Town Center (Saturday 10 am to 3 pm) and Springfield Mall (Sunday 11 am to 3:30 pm). Call 1-866-256-6372 to make an appointment. We may also be asking some of you to help care for our children at different points in time. Please continue to treat us with the warm friendship and compassion that you have shown throughout our family ordeal. It is important that we feel cared for, but please respect our choice not to dwell on this news or on the “what if’s” concerning Jeffrey’s treatments or prognosis. We will update you on the web site as we see fit. During this time, it is very important to us that our support group remains hopeful and faithful, not fearful.

Another thing that everyone can do for our family is to support the Leukemia and Lymphoma Society through their annual fundraiser called “Light the Night.” Your choices are 1) to make a financial contribution or 2) to collect financial contributions from your friends, neighbors, and co-workers. Our event is scheduled for October 4th in Reston at 6:30 pm.

Thursday, June 26, 2003 8:37 PM CDT

We had a nice weekend at Bethany Beach. The weather cooperated... well, sort of! Jeffrey, Angela and Meghan enjoyed playing with their cousins, aunts, uncles and grandparents. We enjoyed a 100-day dinner celebration complete with large spiced shrimp and Bootsies BBQ chicken. We also went golfing at "Down Under." We made friends with the local kangaroos (new picture).

We came home in time to have Meghan and Angela swim in the Monday night swim meet. Both improved their race times which made Mommy, Daddy, and Jeffrey very proud. The girls are enjoying their summer vacation. Sure is nice that it is actually starting to feel like summer!

Tuesday, June 17, 2003 10:12 PM CDT

Jeffrey's clinic visit was routine today. He received his cytogam infusion. This was the last one! Yipee!! Our visits should be quicker from now on HOPEFULLY!! The visit to Children's may have been a smooth one, but the ride home was grueling. It took us 2 1/2 hours to get home. I thought I was going to have a temper tantrum right there at P and 23rd. Thank goodness for the Benadryl that they had given Jeffrey because he slept for an hour of our "parking lot" experience.

Again, we want to thank the wonderful chefs in our lives that bring us meals on days such as today. Thank you!!!!! You are definitely angels.

Sunday, June 15, 2003 9:20 PM CDT

We have posted 3 new pictures from our trip to Hershey Park. What a fantastic 100-day celebration!

We had a busy weekend complete with swimming time trials, 2 soccer games, and a relaxing Father's Day. The kids "helped" Mommy prepare a delicious breakfast of biscuits, sausage, and fruit salad. MomMom and PopPop stayed with Jeffrey while the rest of us went to Mass to celebrate Trinity Sunday. We finished our day with golf, baseball, and a cookout at Doug & Janet's house. There was lots of hugs, kisses, and laughter. What a blessing it is to be all together!

Saturday, June 14, 2003 8:37 AM CDT

Day 100+

We have had a delightful time the last couple of days. On Wednesday evening, we made the announcement to the children that we would be going to Hershey Park for Jeffrey's 100th day celebration. To say the least, they were excited! We arrived at our hotel late on Wednesday and got to the park right when it opened on Thursday morning. I am not sure what was more exciting for Jeffrey - being on all of the rides or not having to wear his mask. We rode as many rides as we could and had many treats. When the rain started (around 6:00 pm), we headed out and had dinner while the pouring rain soaked people. As we left, they gave us a handful of chocolate kisses ( the best we have ever had). What a treat!!

Friday, we swam in the pool and then went to Chocolate World. At the end of our tour, we received a chocolate bar and then wandered around the shops. I have never felt so overwhelmed by so much chocolate. There are so many sizes, shapes, and kinds. Where to begin?! We arrived home just in time for swim team practice which the girls ended up missing due to an ant population that took up residence in our home while we were gone. This is just another reason that the rain must stop. We got everything cleaned up and then had Angela's birthday party. We went to the Clay Cafe to paint pottery and then returned home for cake, ice cream and games. The girls had a lot of fun and even had a food fight with whipped cream ( outside luckily). I have to admit, I didn't know if I should laugh or cry at this point. I think exhaustion had set in.

We are all well this morning and are still talking about our favorite rides. I highly recommend Hershey Park to all ages.

Tuesday, June 10, 2003 8:54 PM CDT

Only 2 more days to Day 100!!

We are on the threshold of day 100 and we are slowly getting back to some normal activities. We took the kids to the zoo this weekend and enjoyed a few hours of sun and animals. We especially enjoyed watching the octopus and the baby gorillas who were mixing it up.

Today's visit went fine. Jeffrey received the DLI and has resumed smelling like buttered squash. His physical exam showed nothing unusual, so we are thankful for that. We continue to pray for his healing and we are heartened by our friends and family who are praying along with us. This has been a tremendous journey of faith.

Later this week, we look forward to testing the water at the swimming pool and maybe doing something fun for Jeffrey's 100th day. Tune in on Friday for more details.

Wednesday, June 4, 2003 9:05 PM CDT

Only 8 more Days!!

Today was another dreary day outside, but a cheerful day inside as Jeffrey and Mommy played "Cooties" after getting their chores done. Jeffrey was Mommy's little helper.

We had a long day at Children's Hospital on Tuesday. Jeffrey made it thru the bone marrow aspirate with few complaints. I realize that we have said this before, but he is a TROOPER! Daddy and Jeffrey passed the time by reading stories, coloring and doing his "scissors Workbook." We ate a picnic lunch outside and after shivering for 20 minutes, we were rained out. We played with pickup stix for 30 minutes - so you know that we were bored! Then it was on to the CT scan which is "old hat" for Jeffrey. The preliminary scans looked good and we hope that the doctors will give Jeffrey the OK to be taken off the anti-fungal medicine. We are definitely stopping the Ursidiol which was to protect his liver during this delicate time. While we were waiting for the meeting with the doctors, Mommy, Jeffrey, and Daddy had a good game of volleyball in the waiting room. :)

When we came home, Grandma Cherry Cola had fixed us a tremendous roast beef dinner complete with all the trimmings and a fantastic berry pie for dessert. Thank you to Grandma CC and all who make our clinic days a bit easier by bringing us meals.

Thursday, May 29, 2003 10:13 AM CDT

Two weeks until day 100.

Yesterday, the girls had swim practice and actually got into the water. They looked liked icicles when they came out, but they swam well. I am surprised that they did not sink to the bottom with ice blocks tied to their legs. Jeffrey desperately wanted to get in too. Who do these crazy children belong to?

For those that receive the Washington Post in Fairfax County, there was a wonderful article about a precious little boy who has gone through two transplants- JEFFREY. It really is a great article and I hope everyone gets to see it. ( It is in the Fairfax Weekly section).

This weekend, there will be a bone marrow drive in Franklin Farms from 10 to 3 on Steel Pond Drive off of Franklin Farm Drive. If you haven't gotten on the registry and would to do so - this is the time. Also this weekend, is the marathon in San Diego. Several nurses at Children's are going and Chip Hulbert who is running in honor of Jeffrey and in memory of their dear friend - Hannah. Good luck to all of the runners!

Mommy decided that today was a good day to workout on the treadmill ( treadmeal as Jeffrey calls it). While I was working out, Chef Jeffrey was working out in the kitchen. He made wonderful ginger scones with his grammy. What a talent he has!!

Tuesday, May 27, 2003 9:01 PM CDT

It is hard to believe that we only have 16 more days until the infamous day 100. Jeffrey cannot wait until he can go swimming and I am just hopeful that the weather warms up so that the water is warm. You will not see me in the pool until the water is warm and so is the air around me. Yes, I am a pansy when it comes to being cold.

Our clinic visit went well today. His counts are steady and his physical exam looked great. He had his cytogam infusion and there is only one more infusion in two weeks. Yipee!! We are also trying to get him off some of his medications over the next couple of weeks. We will have a CT scan next week to see how his lungs look and then we may stop taking the voriconazole. Jeffrey really feels like a champ when he can stop taking meds. Since we are closing in on day 100, we will also have a bone marrow aspirate to check and see how his marrow is functioning. This is pretty standard at this time, but none the less, is a pain in the rump (literally). Hopefully, this will be the last one we will have to endure.

We will be cheering on Chip Hulbert and all of the other marathoners this weekend in San Diego. Many of the runners are raising funds for the Leukemia & Lymphoma Society. Thanks to all of your hard work and dedication to a great charity!! We really appreciate all of your efforts.

Thursday, May 22, 2003 8:36 AM CDT

Yesterday, we decided that having fun in the puddles was the way to go. When Stephen got home, he found his three children outside riding their bikes in the puddles at the end of the driveway. They were so excited to get out for the few moments while the rain had stopped. Jeffrey also enjoyed his day with Austin. They ran around pretending to be cowboys. Whoa! Their horses really run fast!!

I have entered a new picture of our little baseball player. Notice the great footwear that one must sport while using an indoor field. :) The weather really must cooperate soon so that Jeffrey can practice his batting - OUTSIDE!!!

We have received our Light the Night information for this year. It will be October 4 at the Reston Town Center. We hope you will mark your calendars for this event. More info to follow.

Another event - Carabbas in Centreville will be opening up on Monday. If you order your favorite family meal, they will donate a portion to Make a Wish. If you are looking for something to do on a rainy Memorial Day- try it out!!

Wednesday, May 21, 2003 9:40 AM EST

The next time someone asks me what I do for a living, I am going to respond with a long list of jobs. Keeping a 4 year old entertained 24/7 while the weather has been frightful is more than just a full time job. We are having lots of fun, but I am ready for a vacation.

Yesterday was our donor lymphocyte infusion. We arrived at the hospital at 8:45 to be told that our infusion would not take place until 2 pm. There is so much to do in DC besides go to Children's so we turned around and went to the zoo until noon. It was the perfect time to go. We had the zoo and its animals to ourselves until the school buses arrived around 10 or so. We saw zebras, camels, elephants, the pandas, a giraffe, gorillas, snakes, birds, a black squirrel, a wolf and many more fun animals. The tigers were asleep unfortunately. We dined at McDonald's on the way back to Children's and then played and watched a movie while the infusions were going in. Jeffrey needed fluids before and after receiving the cells so that is what takes the most time. We made it and he is fit as a fiddle.

We thank everyone for their continued prayers and for the wonderful meals. We are extremely grateful for all that you do for our family!

Friday, May 16, 2003 9:44 AM EST

As we approach Day 100, Jeffrey is getting more and more excited about being able to go swimming, play with friends at their houses, and just be a normal 4 year old. We are all looking forward to that day!

Jeffrey is doing well. He had a non-eventful clinic visit on Tuesday. It was a long visit with infusions, but as always, he was a trooper. Next week, we will go in for our scheduled donor lymphocyte infusion. It seems that the rash was probably due to the amoxicillan so we now will take the next step in our plan. The infusion only takes about 2 minutes but we will be there all day. We will take lots of books, movies and games to keep us occupied.

Jeffrey received a new and improved bike from PaPa and Grammy yesterday. Before taking it outside, he rode around Grammy's kitchen like a motorcross man. He had a lot of fun. We brought it home and Jeffrey found that going up the driveways was a bit harder, but going down was just as fast and fun! He and his sisters are going to give me gray hairs.

This weekend is Timmy's First Holy Communion. Daddy will be home with Jeffrey doing boy things but the girls will attend. Just a bit longer and all of the cousins will be together.

Monday, May 12, 2003 9:53 PM EST

Our weekend was fabulous! We decided that despite the weather in Northern Virginia (which was rainy), we would go to Bethany Beach for a little R&R. It was great! As soon as we got over the Chesapeake Bay Bridge, the rain stopped. It wasn't sunny and warm, but none the less, we had a super time with MomMom and PopPop. Thank you for getting the condo ready for our visit. It really was a wonderful Mother's Day! The children played in the sand, got their feet wet, raced down the bulldozer tracks, and walked around the town of Bethany. It was perfect with only a few other people around. Jeffrey's favorite part of the entire weekend was digging sand chairs with his daddy.

Today, Jeffrey and Mommy spent most of the day outside. Jeffrey also had the opportunity to play with
Austin today. They are great buddies! Grammy stopped by and we had a tea tasting with all of the differend teas that she received for Mother's Day. It was a fun-filled day.

Wednesday, May 7, 2003 9:14 PM EST

Our visit to Children's went smoothly but we are still in limbo regarding Jeffrey's GVHD. It seemed that he was showing some signs of a skin rash (which would be a great sign) but now we are not so sure. He may be having a rash due to the amoxicillan we put him on to keep him from getting strep. Oh, the life of a post transplant patient. We sometimes don't know which end is up. :) We will watch the rash over the next few days and biopsy it next week if it continues to worsen. That, unfortunately, is the only way to definitely diagnose GVHD. We will also be on the lookout for any gastro-intestinal ailments. Our counts are stable but do show a slight dip in the white blood cells. Nothing to be alarmed about at this point - probably just an indication of some GVHD going on. It is hard to know exactly what is going on in his body. I am sure that Meghan's cells are getting down and getting sassy:)

Jeffrey has been having a blast playing catch with PaPa this week. Stephen was in San Francisco for a couple of nights so PaPa was the relief pitcher. What a great time had by all!! I really enjoyed all of the laughter.

Sunday, May 4, 2003 2:24 PM CDT

Reading from all the entries, I guess you all know that Jeffrey has been the doctor around here with Mommy and Angela both coming down with strep. Luckily, the medication has made us all feel better.

Little Tex, otherwise known as sprout, little buddy boo, pal, and etc. is feeling well these past few days. We had been a bit concerned about his eating habits, but things seem to be picking up. He made some really yummy pancakes for his "fans" yesterday and was at the blender today with Daddy whipping up some triple thick milkshakes. McDonald's has some competition!! We tried some nutritional supplements and he just turned up his nose at it all. I guess Stephen and I will be getting a boost in our diets.

Jeffrey has found a new sport to try. He has been thoroughly enjoying playing catch with his dad. He asks Stephen to go play ball with him whenever there is a chance. It is adorable seeing Jeffrey with a baseball mitt on - what a great game for little boys and their dads to play. Now, girls don't get offended - it is a great game for you too, but there is just something special about a little guy and his hero out there playing ball.

We continue to appreciate the meals and the daily prayers! Thank you!

Wednesday, April 30, 2003 10:59 am EST

Tuesday went by quickly for Jeffrey. We had our usual clinic visit and he took a nap. He probably was tired due to the Benadryl that they gave him before his cytogam infusion. We did not have the video/TV cart so it was a great idea for him to snooze. He had many visitors that came to visit him and they were stuck with me. I am sure they were disappointed. Jeffrey's weight was down a little so we are going to try some high fat shakes for him. He just hasn't felt like eating a whole lot these past few days. I have been having some allergy problems so maybe the pollen is affecting him too.

PaPa came back from Texas and brought Jeffrey two cowboy hats and some Wrangler jeans. He looks adorable! Angela received some new cowboy boots- they are red! Meghan got a Strawberry Shortcake doll. To say the least, all of the children were delighted with their treats! I will include a picture of the new cowpoke in our home. Jeffrey looks like he is ready for the Rodeo circuit.

Saturday, April 26, 2003 7:26 AM EST

Jeffrey's infusion went without a hitch yesterday. He actually had two small infusions because the first was so minimal that they felt we should just go ahead and do another with lots of great immuno-boosters. If it had not been for a two hour nap that Jeffrey took in the hospital, we would have been home around 3 pm, but instead we got home at 5 . No biggy, it was still a short stay!!

Tuesday, will be our usual infusion of cytogam so that too will be a long day but still a short stay!

We have been calling Jeffrey sprout because he has all of these wonderful little hairs growing all of his body. If you look at him with the light shining, you can see these little hairs on his lip and chin. It is adorable. You don't realize how much hair is gone until it starts to come back. He is also getting thick eyebrows. I know I am bias but he sure is cute!!

Meghan has lost another tooth so both front top teeth are missing. I need a picture because I think that is one of the cutest smiles around! Look soon for updates.

Friday, April 25, 2003 8:55 PM EST

Day +52 Infusion Day

Jeffrey and Mommy woke up early today to drive to DC. They fought their way thru traffic and were admitted around 9:30. The infusion went smoothly and quickly. After reciving Benadryl, Jeffrey took a nap. When he woke up it was time to go home!

We had a wonderful spaghetti dinner tonight and watched our weekly TV show "America's Most Talented Kid." There were singers, dancers, and even a 5 year old with a yo-yo act! The kids love tallying up the names and scores and cheering for their favorite performer.

Tonight we said a special prayer for Angela, Meghan and Jeffrey's cousin, Amy, who will receive her 1st Holy Communion tomorrow. Congratulations Amy, we are so proud of you!

Tuesday, April 22, 2003 10:14 AM EST

Day +49

Wow! We are just one day shy of half way there to 100! This time has passed quickly with so much to do and all of the fun we have been having.

Our little hospital stay was just a minor nuisance and we are back home and doing well. Jeffrey was thrilled with Easter and loved finding eggs hidden everywhere. The Easter Bunny even hid a few eggs around for Auntie to find. The kids thought that was fabulous. We had Mass said at home (which was wonderful) and then had a yummy brunch complimentary by Auntie, Grammy and Mommy. It was a beautiful and fun-filled day.

Today is our regular visit to the clinic. I am sure that they will find Jeffrey in good health as he has been active, eating, and sleeping well and quite happy to be back at home. (He had a hunger strike when he was in last week.) In addition, we will discuss the next course of treatment. When we retrieved the stem cells from Meghan, the doctors took a few more cells needed at the time and froze them. The cells that they have frozen were to be used in the event that Jeffrey did not show signs of GVHD. We have not seen any GVHD so the time has come to give him a t-cell boost. We are going to be infusing him with these additional cells on Friday in hopes to rev-up his immune system. By giving these cells, we can also have the potential of graft vs. leukemia. Depending on if he shows effects of GVHD will determine how many infusions will be necessary. We have enough for three infusions. Please keep him in your prayers as he goes through this procedure. It is an easy procedure for all since we already have the cells and it is only an infusion for him.

Saturday, April 19, 2003 7:20 PM EST

We are all home under one roof and it feels great! We are looking forward to a wonderful Easter Celebration tomorrow. Thank you for all of your prayers. They must have worked.

Thursday, April 17, 2003 9:05 PM EST

Jeffrey has enjoyed having his sisters home all week. They are terrific playmates! He enjoyed an Easter egg hunt today with his Mom-Mom and Pop-Pop.

He took a nap this afternoon, which is most unusual for him. We understood why around 5 pm - when he came down with a fever. Tasha and Jeffrey headed off to Children's Hospital for some blood tests. They will spend the night and maybe two nights. Please join us in praying for Jeffrey's health and that he will be able to come home to celebrate Easter Sunday with the rest of us.

Tuesday, April 15, 2003 6:52 PM CDT

Many of you read that we did have to do the aspirate today to help us determine why Jeffrey's platelets are declining at this point. No one ever said that a Mom and Dad's job is easy but this is just pure torture. We are sending the aspirate out for testing and will receive results in the next few weeks. In the meantime, we are exploring some new medications to help alleviate or at least calm the decline at this point. We will be able to share more details when they come available. What we need right now is prayers for peace, strength and healing at this point. Thanks for all of your love and support!

Tuesday, April 15, 2003 6:47 AM CDT

As many of you know, today is our day to visit Children's to have a physical and to have bloodwork done. Today, we will also get our infusion of cytogam. However, there is also a possibility of having an aspirate performed today. As you can imagine, Stephen and I are a bit panicked about the reason for the aspirate. I think I mentioned that over the course of the past two weeks, Jeffrey's platelet count has been decreasing. The doctors kept telling me when I brought up this "trend" that it was probably due to GVHD or just that his little body was getting settled. After a more careful look at this "trend", they admitted that they were surprised that his platelet count was so high from the very beginning and that they did believe that it was just getting into a more normal groove, but... The but of this is that if his platelets show a drop today, they want to do an aspirate to see what the marrow is doing. It doesn't seem normal to them. WE REALLY NEED PRAYERS TODAY! We need to see a steady platelet count or a rising count. If for some reason the platelets are lower, pray that the marrow looks normal but just a bit slow right now. Stephen's chat today was PLATELETS, PLATELETS CRAM FOR YOUR TEST!! Needless to say, I am extremely nervous today.

Friday, April 11, 2003 10:48 AM CDT

Day +38
Jeffrey's daily routine has changed just a bit these past few days. He has been sleeping until 9:30, eating, watching Sesame Street and Mister Rogers and then doing a little baking or cooking. Today, he has informed me that he would like to take a nap so that he can then grow even bigger. I keep teasing him that if he keeps sleeping this long that he will grow out of his bed. He found a remedy for that problem and is sleeping from about 5 am on in my bed. It is good to wake up and see his little angelic face next to mine. Meghan has also decided that waking up next to Mommy is a treat. Although, a war over the covers seems to be going on between the boys and girls. Boys- they can be such hogs. :)

Wednesday, April 9, 2003 3:24 PM CDT

Just a quick update on day +36

We received the results of the CT scan and more improvement with the lesions can be seen. There is just one small lesion remaining. The transplant team is going to discuss the results and determine if Jeffrey should stay on the anti-fungal medication. We will talk to one of the doctors later today and find out what the consensus was.

Jeffrey continues to take his medicines like a champ and has had no complaints. We will just keep taking each day as it comes and thank God that Jeffrey is feeling good.

Monday, April 7, 2003 5:51 PM EST

We are not sure what clothes to wash next. Mommy has to wash all of my clothes twice in hot water and this weather is so topsy turvy that one day she washes shorts and then the next my long sleeves. What to do?!

My clinic visit today went fine. They told Mommy not to worry that the dip in my platelets over the past two weeks. It is probably my body just getting settled and making my own platelets. Thanks sis, but I guess I am on my own now.
What's that song? - "I get by with a little help from my friends. I get high (platelets) from a little help from my friends (really my wonderful sister). :) I feel really good and Dr. Kamani was also un-phased by my bruise on my shoulder blade. I guess I just hit it from all the playing and forgot. Moms, they can be such worriers. Dr. Kamani also decreased my cyclosporin by .1 We will see what that may do to my skin or GI tract regarding any GVHD. We will see. I also had a CT scan today of my chest. They wanted to check on the status of the lesions. We will probably get the results tomorrow. I am sure that the scan will show great progress. This is one thing my mommy and I agree on.

I will go next week for another round of cytogam which is a medicine that gives me extra antibodies against the CMV virus. I hope that it won't take as long, but it probably will.

TaTa for now!
Jeffrey

Saturday, April 5, 2003 6:38 PM EST

So far this weekend has been as normal as normal can be. Jeffrey has had a lot of energy and feeling well. He has been playing with his sisters and having a great time playing with his daddy. It is so grand to be together!!

Being home has been a lot of fun but worrisome at times. I guess it is my place to feel a bit worried now and then. When giving him a bath last evening, I thought he felt rather hot so I took his temperature. It was normal, but who would think that taking a child's temperature could make a parent nervous.??!! I was grateful that it was normal or I think we would all have cried. We also found an unexplainable bruise on Jeffrey's shoulder blade. I really never worried about bruises last year after his transplant, but this one just threw me for a spin. I guess I will worry a bit more this time around. We are more cautious now knowing that this beast can rear its head at any time. I do, however, think that we accomplished our goal this time. Let's keep praying that we are right.

Angela and three others from her Brownie troop travelled to Children's today to entertain some patients with their clowning. We were invited to take part in Project Champ that invites outpatient clinic patients in for respite care. The event was a lot of fun and we also had the opportunity to visit 4 yellow. The unit was quite empty but a few patients enjoyed seeing the girls and the nurses definitely enjoyed the skits. We were also stopped in the cafeteria by a gentleman who commended us on a job well done. It felt great to know that we made a difference in a person's life today.

Tuesday, April 1, 2003 10:37 PM EST

Today was a long and slow day at the clinic. Good thing Jeffrey likes to watch movies, read books and talk to his friends at the hospital. Jeffrey had his cytogam infusion today which is supposed to take a couple of hours. We had to slow it down to a snail's pace because he started having the chills. His heart rate and repiration were normal so no further action needed to be taken. What a pain, though.
His counts are a bit stagnant right now and his platelets were a bit lower than the last time. It has Stephen and I worried but so many factors can contribute to blood counts dropping. One simple explanation can be slight GVHD or even starting on Bactrim again. It is unfair to make a Mommy worry, though. The doctors, however, are not concerned.

Our plan to give Jeffrey a boost of "Meghan cells" is on hold right now. Recent studies have shown possible risks of chronic GVHD when giving t-cell boosts. Jeffrey's doctors are compiling as much information as they can before moving forward which we are extremely grateful for. We are trying to sit back and comprehend everything.

Jeffrey continues to have a great appetite, energy level and attitude. We are having a lot of fun being silly and playing throughout the day. He looks forward to the school day to be over so that he can have lots of fun with his sisters. He is so disappointed when they have homework or playdates at friends's houses. Wednesday is a day that everyone is home after school and Jeffrey has it all planned out. He received a new fireman's hat today from PaPa and it has a siren on it. He has found all of the other firemen hats around the house so I guess we will be putting out fires tomorrow after school. It sounds like a lot of fun!!

Sunday, March 30, 2003 2:47 PM EST

This is one Happy Family!

The past few days have been the biggest blessing we could have ever asked for. Being together has brought many smiles (see the new pictures), much laughter, and has increased our love for each other.

The girls have enjoyed having both parents home. On Wednesday, they experienced the Circus at George Mason University. They slept over at the Johnsons' on Friday and enjoyed the Poplar Tree School fair on Saturday.

Jeffrey gave his sisters' a motorcycle ride to school on Thursday - much to everyone's delight! He has been playing cranes with Mommy, riding his bike, playing whiffle ball with Daddy, clowning around with his sisters, rhyming with Mom-Mom, playing with Grammy, and being a joyful reminder of God's love for all of us. He continues to take his medicines w/o complaint - even the acyclovir at 4 am! His doctor's appointment on Friday went well and we continue to see ANC growth and we are watching for GVHD.

Tasha and Stephen are also enjoying getting re-acquainted. Last night we made mud slides and watched "The Bourne Identity." It was hardly a good movie (VERY different from the book), but we were just glad that we could relax together. Our experience definitely has made our marriage stronger.

Yesterday, the kids concocted 4 different potions made out of spices, water, flour, Ranch dressing, mustard, vanilla, etc. No one had the guts to taste what they made (too much brains). After that the kids had a 3-way date of riding bikes, dinner in the dining room w/o parents and a dance party featuring the best songs of the Beatles. Rock-on!

Wednesday, March 26, 2003 11:30 AM CST

Before Mommy and Jeffrey left the hospital, we removed the NG tube. His nurse was surprised when she came back in to do it. It certainly felt great to get it out. When we arrived home, there were balloons and a sign and even some drawings on the driveway. It was exciting for all of us to see. Jeffrey was so estatic to be home and to see his toys. We are eating, drinking, playing and doing a lot of giggling.

Jeffrey woke up at 6:30 this morning to start his new day. He couldn't wait for his sisters to get up so that they could play. It really is a wonderful day in the Virostek Home!!

Tuesday, March 25, 2003 7:56 AM CST

Day +21

Jeffrey and Mommy made too much noise and have been thrown out of this place. Can you believe it?!!!! How rude! :)

Sunday, March 23, 2003 9:42 PM EST

Jeffrey is proud to announce that he is able to write his name. He is feeling very proud of this accomplishment. Thanks to Daddy and the box of Batman Valentines, he was able to practice his name a lot this weekend. I am sure it was a fun activity for the boys to do while the girls were home recuperating and getting the house ready for Jeffrey's return home. Thank you to all of the helping hands this weekend! I am certain that we are now ready.

Our goal was to be discharged Monday, but I am being told that it will probably be more like Tuesday or Wednesday. My hopes are dashed and 90% of our toys, games and movies were sent home so the next couple of days may be long. Jeffrey is feeling great and is getting bored in this room. I don't blame him. I informed the nurses that we cannot stay after Tuesday because I did not pack enough clothes for myself, but they just laughed. Not a good enough excuse? Oh well, we will see what the doctors have to say tomorrow. Jeffrey has already tried on his shoes to walk out of here so I hope that we don't find him AWOL. :)

Saturday, March 22, 2003 8:35 AM CST

What a wonderful day in the neighborhood, what a wonderful day in the neighborhood, won't you be mine, won't you be my neighbor? What a great song that Mr. Rogers would sing. It is certainly a wonderful song for the way everyone is feeling today. Mommy, Meghan and Angela woke up to bright sunshine and a bright disposition. We are feeling much better and know that by Monday, we should be good as new. Jeffrey, on the other hand, is 100% today. His ANC is 235 and platelets are 160K. Yipee!! He ate some breakfast and is feeling fiesty. In preparation for a possible escape, Grammy has had her washing machine on for over 24 hours, we have had the children's rooms painted, the garage and van cleaned, the cleaning crew in to sterilize the walls and the carpets cleaned. It must be Spring, because we sure are spring cleaning around here. Can you feel the excitement?!!

Thursday, March 20, 2003 2:42 PM CST

Today has been another wonderful day! Jeffrey's ANC was 93! Yahoo!! It is true that right now that little guy is the healthiest of all of us. Mommy, Angela, and Meghan are all sick and still running fevers. The Ball Clinic with Dr. Dougie Ball as chief resident is full. We must get well over the weekend because they are threatening to send Jeffrey home early next week. I don't know if I should be excited or absolutely panicked. I guess the Lord does not give you more that you can handle. Right?!

We would like to thank all of you who have sent over meals, contributed to the housekeeping fund, entertained the girls, sent gifts, and most of all those that have kept us in your daily thoughts and prayers. We appreciate all you have done.

Tuesday, March 18, 2003 11:23 PM EST

When Mommy went downstairs to take her shower today, Jacqui made a sign that said that my ANC was 40. I was so excited to show Mommy when she returned. When Doctor Brett came to visit me, I showed him my sign too. He was really excited for me. I also have 125K platelets. My counts just keep going up, up, up. Since they used stem cells, they expected my counts to recover more quickly and they certainly are. They are even talking about sending me home next week. Mommy is a little nervous that the graft vs. host disease that they want me to get may delay us but...the plan is to get me off my pain medications and to reduce my time on the feeding tube so I can go home soon. I even ate two bites of yogurt tonight and had a few sips of chocolate milk.

I had a great day today, but my NG tube came out again. I did not like having it put back in, but I was a brave boy.

Please keep the Coyle and Virostek families in your prayers. My Aunt Kristy's daddy passed away today.
Also, keep my sisters in your prayers. They are both sick right now with scarlet fever and strep throat. I am glad that tomorrow is a new day. I hope they feel better soon.

Monday, March 17, 2003 3:01 PM CST

Happy St. Patrick's Day!!

I am having a wonderful day. Unfortunately, my sister, Meghan has strep throat that has turned into scarlet fever. MomMom is taking good care of her. Meghan told me that MomMom does a great job because she had three boys that she always took care of when they were sick. Thank you, MomMom, for taking care of my favorite Meghan!!

Today, Grammy came to visit and we had a great time playing with playdoh and the barber shop. I am a fabulous barber. Everyone leaves bald. We laughed and laughed. When my PT came in to play, we threw the ball around and it was alot of fun. I have also watched a new video Wee Sings in Sillyville and I love it.

Today, I don't have any neutrophils so my ANC is 0 but the doctor says not to worry. I think they are playing hide and seek and will come back tomorrow for a visit. I hope they stay this time. :)

Sunday, March 16, 2003 10:13 PM CST

I will say good morning since I am sure that most of you will see this entry on Day +13. There must have been a lot of prayers for Jeffrey on Sunday because the placement of the NG tube went very well! The Lord certainly kept Jeffrey from feeling too much pain and guided the nurse through this procedure.

I will also tell you shh! Jeffrey has lost all of his hair except a few blond tufts in the front and a small circle of dark hair right on the crown of his head. He looks so handsome. I was taken by surprise when I arrived that it was all gone, but I have to admit- it is wonderful. God knew that I needed another sign that the radiation and chemo had done its job and He sent it for all to see. I wish Jeffrey would let me take a picture, because I really think he looks terrific.

Jeffrey is sound asleep so I am going to do the same. I was washing his green shirt for St. Patrick's Day and it just came out of the dryer. If anyone sees Jeffrey's Grammy ( my sweet Mommy) give her a little squeeze because March 17 is her birthday.

Sunday, March 16, 2003 11:18 AM CST

Today Mommy is home with Meghan. She has an icky bug that is making her have a fever. She has been resting most of the day but then every once in awhile she has a spurt of energy. I think that the Tylenol helps her just like it helps me. Thank goodness for medicines that make us better! I am having a good weekend with my daddy, MomMom and PopPop. I also have some great news... I have a neutrophil count. The engraphment really is happening in my little body. Now we wait to see how Meghan's cells and my cells work together as a team to get me back into shape.

My tummy hasn't been cooperating fully and the NG tube came out this morning. I really don't want to put it back in, but the doctors say that I must. We are going to take a little break and then give me more morphine. Maybe that will help so it doesn't hurt.

Mommy has taken down all the things in my room so that it can be painted. I will have a brand new room when I finally get to come home. Mommy predicts it will be the first week of April. I hope so!!

Bye for now!

Friday, March 14, 2003 10:21 PM EST

Grammy arrived on Thursday to a happy little boy who was ready to have some fun coloring, making icky sticky bugs, watching movies and just lollygagging around. Unfortunately, the little man kept this up until midnight. Do you notice a trend here? Grammy was very kind and let him get his beauty sleep and then they enjoyed some more movies and snuggling. The truth be told, the little guy then took a small nosedive and was experiencing pain and went to sleep in Grammy's arms in the late afternoon. I guess all good things must come to an end. I think with the morphine drip running, he will be back to his old self by tomorrow.

Jeffrey's weight has been up so they have now introduced yet another drug into his system. They had been giving him periodic diaretics but they feel he needs one that is more constant. They have also found CMV ( a virus) in his urine the past two weeks during the regular Wednesday cultures. They proposed putting him on another anti-viral but they are trying to hold out since the drug is an immuno-suppressant. We don't need any immuno-suppressant meds to go against what is happening in his little body already. They are going to wait and see if the CMV is detected in his blood before putting him on the new medication. The testing for this is so sensitive that it is safe to wait for some more signs that the virus has kicked in. The upside of all the testing that they do daily is they are also seeing some preliminary signs of engraphment. We may see some neutrophils by later this weekend. Grow Cells Grow!! His stay last year was 36 days (26 days past the transplant. We are now at day +10 so maybe only 2 more weeks to go. It could be a roller coaster, but the thought of him coming home has all of us excited.

Wednesday, March 12, 2003 11:52 PM EST

It is almost 11:30 pm and I am still awake. One of my nurses said that I should stay up all night so I could sleep all day. That way, when she comes on Friday night we could just play all night long. I don't think Mommy thinks that is such a great idea. She seems to think that 8 o'clock is a better time for a little boy like me to be in bed. I have been singing (really quietly so Mommy doesn't know I am awake) and tossing around my bed. Mommy found out I was still up when I accidently disconnected one of my lines. It made a really big mess and I don't think Mommy was happy with me but she didn't get mad or anything. She just said "Good night, Jeffrey and no more monkey business". I think that she meant "go to sleep now young man or you will not be a happy camper!!"

My PaPa and Auntie came for a visit tonight. I had a great time seeing them. I like when my family comes to visit. I can't wait to see my sisters. I called them tonight, but they were already in bed. I don't know why they went to bed so early. :) I wanted to tell them that I ate one half of a Thin Mint today.

Mommy and I pretended to be real monkeys today and groom each other. Something really weird happened. I was pulling on my hair and it started to come out. It was so fun watching it fall on the floor and then it donned on me that I had created a bald spot on the top of my head. You could say I wasn't too happy with myself after that. Mommy claims that I am really handsome, but I don't want anyone to know that I am going bald. She has promised me that no one will even mention it.

I should go to bed now. Love to all of you!!

Wednesday, March 12, 2003 2:34 PM CST

Last night proved to be a challenge for Mommy, but it was not due to Jeffrey’s pain or even vomiting. Jeffrey did not go to sleep until after 11 pm and Mommy was falling over herself with exhaustion. Since he went to sleep so late, he also slept in until almost noon. I hate to wake my child when he sleeps so I may be paying for it this evening. Oh well, it was a relatively good night after that. He seems to be tolerating the NG tube feedings and we are able to unhook him during the day. Being unhooked makes him very happy!

Jeffrey seems to be experiencing less pain today so maybe we are getting over the hump. He even drank a few sips of root beer and a few sips of hot chocolate. Way to go, Jeffrey!

Tuesday, March 11, 2003 4:30 PM EST

Today has been a much better day. Jeffrey woke up about 9:15 am in a great mood. You can even say that the “Monkey boy” is back for a visit. He has been playful and even a little crazy J We all hope that his days continue this way. Our nights are more difficult, though. We are going to increase his morphine drip during the night so he can have more relief and sleep more peacefully.

We are waiting around to see when the engraftment will begin. During the first transplant, it was around day +11. The doctor mentioned today, we could even see some engraftment this weekend. Wouldn’t that be a miracle! We are beginning our preparation just in case he can come home at the end of this month. Again, wouldn’t that be a miracle. We are certainly ready to leave this place and never return!

Monday, March 10, 2003 8:04 PM EST

Jeffrey's was miserable last night but after a long hibernation, I think we may be over the hump. I hope I don't jinx us by saying that today was a good day. Jeffrey woke up about 11 am and was going strong until about 8:45pm. He interacted with the clowns, hid under his "reading tent", pretended to be a cat, watched some videos, and had a visit from Grammy and a surprise visit from PopPop. He had just a few bouts of discomfort, but managed very well overall. I think that he may be overtired now because he is being a little defiant at this point. I hope his "active" day doesn't cause problems for him tomorrow. It is no fun when he is not feeling well.

Monday, March 10, 2003 8:50 PM EST

Sunday, March 9, 2003 9:43 PM CST

Today has been much of the same. Jeffrey continues to have throat pain and has needed some extra "pushes" with the morphine. He did get up around 1 pm and take a bath and have a few minutes of "out of bed" time. After a long nap, Jeffrey was then up again around 8 pm. This time, the medication seems to have really worked and he was painting and even joking with some of the nurses. It was the ol'Jeffrey around for a minute and it was wonderful. Before retiring for another period of hibernation, he even sang songs about all of his favorite families. As you can imagine, the song went on until he was really tuckered out. It is now 10:30 and I think he is still singing the song in his head. The sad thing is that he didn't even get to his most favorite part - his own sisters and parents. Oh well, we can wait until tomorrow to be remembered in his song.

Jeffrey was unable to see his sisters today due to his sleepiness, and possible viruses on their front. I am sure the girls are perfectly fine, but with his immuno-suppressed condition we can take NO chances. Keep your fingers crossed that he will be up for a visit soon. Having his sisters around is great medicine.

I will put the info. regarding the clinic with the Washington Freedom on the site again. It seems that there is some interest. Great!

Jeffrey is beginning to need blood products again. Thank you to all of the people who are scheduled to come down this week and next to give platelets. If anyone is ready to give whole blood again, we will probably need more donors next week or the following. Thanks in advance!!

Saturday, March 8, 2003 1:02 PM EST

Jeffrey had a decent night sleep, but woke up in quite a bit of pain :( He has mucasitis (sores) in his throat -a side effect from the chemotherapy and the radiation. Needless to say that he doesn't want to eat or swallow anything. He is tolerating his mouthcare, though. Just another sign of the Trooper that he is. We pass the hours by cuddling, napping, watching videos and painting with his new art kit.

PopPop came to visit today and we were glad to see him. Mom-Mom sent awonderful lunch and dinner for Daddy, and sent chocolate cake to share with others on 4-yellow. Thanks Mom-Mom!

I wanted to mention: On April 27 the Washington Freedom will hold a soccer clinic at the RFK Stadium Auxillary Fields from noon to 3 pm. You can come and learn new techniques and skills, scrimmage and have lunch with the players and coaches from the team. Participants must be between 6 and 16. The $100 tax deductible fee will benefit Children's Hospital. Participants will receive an official soccer clinic t-shirt, gift bag and a voucher for the Freedom game against Atlanta on April 26 at 7 pm. Contact: The Washington Freedom Soccer Clinic c/o Andre Chreky, 1604 K Street NW, Washington, DC 20006. Additional tickets may be purchased by calling 202-547-3137. All reservations must be received by April 15 and will be confirmed upon payment receipt.

Friday, March 7, 2003 12:55 pm EST

Day +3 has been much of the same. Jeffrey has been medicated with some anti-nausea meds that have made him very sleepy and he really does not feel very well. We have begun giving him morphine for the pain in his throat and he is on antibiotics due to a fever that surfaced last night. This is all to be expected, but is difficult none the less. Resting is what we have done the most of this morning. The doctor told me this morning that what we are seeing is probably a cummulative effect from all of the treatments that he has had over the past 18 months. He also said that things will probably get worse before they get better. Didn't I mention that I hate that. :( I am praying that he will bounce back quickly.

I wanted to mention: On April 27 the Washington Freedom will hold a soccer clinic at the RFK Stadium Auxillary Fields from noon to 3 pm. You can come and learn new techniques and skills, scrimmage and have lunch with the players and coaches from the team. Participants must be between 6 and 16. The $100 tax deductible fee will benefit Children's Hospital. Participants will receive an official soccer clinic t-shirt, gift bag and a voucher for the Freedom game against Atlanta on April 26 at 7 pm. Contact: The Washington Freedom Soccer Clinic c/o Andre Chreky, 1604 K Street NW, Washington, DC 20006. Additional tickets may be purchased by calling 202-547-3137. All reservations must be received by April 15 and will be confirmed upon payment receipt.

Thursday, March 6, 2003 4:29 PM EST

We needed a new look to brighten our day. Like it?

Jeffrey had a nice visit with Grammy. He even perked up a bit. After playing with some new felt and sticker books, he crashed. The doctors have decided to re-introduce his nutritional supplements to him but slow down the volume increases. The thinking is that maybe the nutritionist started out too aggressively and his tummy just could not consume the large quantities of "food" so quickly. He seems to be tolerating them now, but it is still very early in the game. We did pre-medicate him this time with benadryl and phenagrine to help with the nausea. It has made him really sleepy but rest is best for him now. I hope that he will sleep tonight when his mommy is ready to sleep, though.

Previous message:
Day +2 has not been as grand as the past two. Jeffrey began his tube feeding yesterday and by midnight his tummy was feeling yucky. We had very little rest last night and today Jeffrey feels like "doggie do". He has complained that his throat hurts and so does his tummy. We are trying to find the reason - mucusitis or the feedings via his tube. This is about the time that they expect him to feel the effects of the chemo and the radiation, but it came on so quickly that I am hopeful that it is a small bump in the road. I hate when the doctors say things like " well, we expect things to get worse before they get better." Luckily, the doctor today told me that his lab work looked great so we do at least know that his kidneys and liver are not being impacted by the treatments.

We love the chants that are being said each day. Very creative, Margi Flynn!! :)

Jeffrey is happily placing his gumballs on the gumball poster to help him count to 100. It makes him so excited. He is already planning on what he is going to do once his broviac is out - beach, beach and more beach time. We can't wait!!

Thursday, March 6, 2003 12:51 pm EST

Day +2 has not been as grand as the past two. Jeffrey began his tube feeding yesterday and by midnight his tummy was feeling yucky. We had very little rest last night and today Jeffrey feels like "doggie do". He has complained that his throat hurts and so does his tummy. We are trying to find the reason - mucusitis or the feedings via his tube. This is about the time that they expect him to feel the effects of the chemo and the radiation, but it came on so quickly that I am hopeful that it is a small bump in the road. I hate when the doctors say things like " well, we expect things to get worse before they get better." Luckily, the doctor today told me that his lab work looked great so we do at least know that his kidneys and liver are not being impacted by the treatments.

We love the chants that are being said each day. Very creative, Margi Flynn!! :)

Jeffrey is happily placing his gumballs on the gumball poster to help him count to 100. It makes him so excited. He is already planning on what he is going to do once his broviac is out - beach, beach and more beach time. We can't wait!!

More updates later.

Wednesday, March 5, 2003 2:36 PM EST

Jeffrey received his new stem cells at approximately 6:30 pm on March 4, 2003. It was very exciting! After Meghan and Jeffrey took a picture (posted on this web site) the stem cells were infused. We watched the cells gradually make their way through his line and into his port. We cheered, clapped, and cheered them on some more. It was an exhilarating moment for everyone in the room. Now we will cheer for their engraftment. Grow cells Grow!!!

The process of getting the stem cells was a longer event then Meghan bargained for, but she did very well. She laid very still for about five hours - without complaint. She rested for 2 hours before the time came for her to finally see her brother. What a celebration! Jeffrey clapped and cheered when she was allowed into his room. I think that having them together was the best medicine for everyone. We, however, did miss Angela! I'm sure that she was sending us some very positive vibes, though.

Jeffrey is doing well today. We placed an NG tube today (thru his nostril) to ensure that we can meet his nutrition needs in the best way possible. As usual, Jeffrey was a good patient, but the experience left him drained. We rested afterwards and then he was back to himself. Mommy shed a few tears for him - a mommy's job can be hard sometimes. It was also emotional for those that had to place the line (nurse Jacqui). Luckily, Jeffrey rarely holds a grudge.

Fr. Dominic visited today and Jeffrey received ashes and a blessing. Jeffrey loves to be Blessed. Thanks to everyone for your continued prayers.

Wednesday, March 5, 2003 1:27 PM CST

Jeffrey received his new stem cells at approximately 6:30 pm on March 4, 2003. It was very exciting! After Meghan and Jeffrey took a picture of, the stem cells were infused. We watched the cells make their way through his line and then into his port. We cheered, clapped, and cheered them on some more. It was a very enthusiastic moment for everyone in the room. Now we will cheer for their engraftment. Grow cells Grow!!

The process of getting the stem cells was a longer event then I think Meghan bargained for, but she did very well. She laid still for several hours without complaint and then the time came for her to finally see her brother. What a celebration. Jeffrey clapped and cheered. I think that having them together was the best medicine for everyone.
We,however, did miss his oldest sibling!! I know that she was sending us some very positive vibes, though.

Jeffrey is doing well today. We did, however, have to place a NG tube today to help him with his nutrition. He was a great patient, but the experience left him drained. We rested afterwards and then he was back to himself. Mommy shed a few tears for him - a mommy's job can be hard sometimes. It was also emotional for those (Jacqui) that had to place the line. Luckily, Jeffrey rarely holds a grudge.

Fr. Dominic visited today and Jeffrey received ashes and a blessing. Jeffrey loves to be Blessed. Thank you for your continued prayers.

Tuesday, March 4, 2003 11:11 AM CST

Meghan arrived safely and had an iv placed around 8 am this morning. She was very brave since we had to place it in her hand instead of where we had put the "magic cream". After receiving a little bit of fluids, she was taken down to the interventional radiologist for the cathetar to be placed. Again, she did great. She experienced some pain after returning to the floor, but is calm ( and sleepy) after receiving some pain medication. The machine is now humming with her blood being spun to extract the marvelous stem cells. With all of the technicians, doctors, nurses and parents in the room, it looks like we are hosting a party.
Jeffrey,on the other hand, is in the other room jumping up and down and acting like a monkey. I hope he knows what his sister is doing for him that little crazy man.

Both children had a visit from Otis King from the Harlem Globetrotters. Jeffrey was impressed but Meghan was off in lala land.

We will update everyone again later after Jeffrey receives his new marrow. :)!!

Saturday, March 1, 2003 10:50 PM EST

Mommy has tried to put a new message in several times over the past few days. The computer has been very naughty and keeps shutting down. I think she got a little frustrated yesterday, because I heard her whisper something not nice to the computer - you stupid thing. (I know she wasn't talking to me.)

My radiation treatments went really well. I have learned that if you take "sleepy" medicine it makes the whole thing go by in a flash. I say good-bye to my mommy and then the next thing I know she is telling me "wake up sunshine." Jaguar even received some great rays too. I think he was a little naughty when I was snoozing because we found evidence of rice scattered around my stretcher. They use the rice to make me more rectangular so that the radiation will hit all my parts equally. The doctor said that I was pretty square to begin with, but Mom says that wasn't true that my personality is more hip than that. I guess when I am older I will understand exactly what she means. Mommy and I wrote BYE BYE on our board to show that we were getting closer to being finished with treatment. I was really excited to finally spell it all by Friday evening. I really didn't find the ambulance ride to be very exciting. They did have some cool green gloves, but the ride seemed to take so long. Mommy tried to entertain me by making the gloves into balloons. It worked! Jacqui got to go with us one day, and Mommy and she had a contest to see who could blow up the gloves the fastest. I was proud because my mommy is a winner.

Today, I had a visit with MomMom and PopPop. We had a great time singing, working on the letter D like in Daddy and Douglas and dog and watching a show on rockets. I tried to draw some pictures of rocket ships. When Daddy got back from Mass, I got to receive Communion. It was neat to do that in my own room.

Today I received my chemotherapy. I did well. I think that my bad bullies are all gone. We have fought hard and won, I just know it. Because of the treatments, I have had to receive packed red blood cells and tomorrow I will need platelets. Sunday, I will get more chemo and then on Tuesday my sister will come to share her stem cells with me. She has been taking shots for the past two days. I know they don't feel very good. Mommy said that she hasn't cried or anything, but only says that it hurts. I feel badly for her, but I am thankful that she is doing this for me. She really is a trooper. I think a good name for our family would be Team Trooper.

I know that my family really appreciates the thoughts and prayers that are being sent our way. We thank you for your generous meals and goodies too. Please continue to give blood when you can too. You really do Save a Life.

Wednesday, February 26, 2003 8:40 PM EST

We had a busy weekend with birthday parties, errands and a visit from a clown/magician/comedian/balloon artist. Angela, Meghan, Jeffrey, Austin, Brooke, and Alexandra belly-laughed the whole time because Ted the Clown was truly hilarious. He made us forget all of our troubles for the hour that he was here. We have added some pictures to the site to show you what a terrific time that we had. Thank you to Ms. Casterline at Poplar Tree ES for arranging this fun event.

On Monday, we settled in to room #4166 at Children's Hospital. Today, we spent the morning and afternoon at NIH. We traveled via ambulance for Jeffrey's first radiation treatment. The ride to the hospital was boring and long. We used some "sleepy" medication for him to relax and that was helpful. He was a bit shaky this morning with anticipation of the procedure, but he did well.

Our schedule of events:
3 days of radiation, 2 days (this weekend) of chemo, and then the big transplant on March 4. Meghan will start taking some cell stimulating shots of Friday in preparation for her part. Day 0 (Tuesday) begins our big countdown to that infamous 100 days. So where should the party be this time :)?

Please keep those prayers coming our way!!

Wednesday, February 26, 2003 11:16 AM CST

We have arrived safely at the hospital and settled in. We then were off to NIH this morning by ambulance for his first radiation treatment. The ride to the hospital was boring and long but all went well. We used some "sleepy" medication for him to relax and that was helpful. He was a bit shaky this morning with anticipation of the procedure.

Our schedule of events:
3 days of radiation, 2 days (this weekend) of chemo, and then the big transplant on March 4. Meghan will start taking some cell stimulating shots of Friday in preparation for her part. Day 0 (Tuesday) begins our big countdown to that infamous 100 days. So where should the party be this time :)?

Jeffrey is alone in his room, so I must make this short.
Keep those prayers coming our way!!

Saturday, February 22, 2003 6:14 PM EST

Greetings Everyone from a very soggy family. We received several inches of rain today. The roads are beginning to flood and our backyard is a swamp.

The weather may have deterred some folks from our blood drive, but we were pleased to get 15 donors through noon today. Thank you to Deirdre Crescioli for pulling it all together and for those who donated today. For those that were not able to donate today, please make a appointment to give the gift of life as soon as possible.

We had some good news this week. Jeffrey's CT scan showed that the nodules on his lungs have improved! (Looks like the decision not to have a lung biopsy was the right one.) Even so, we will keep giving him the antifungal medicine. So, we are "All Systems Go" for the BMT! Jeffrey will be admitted on Tuesday and will receive three days of total body radation at NIH in Bethesda. None of us is really looking forward to it, but we are very thankful that we have made it this far. The kids are exhibiting some behavior issues, but we are not sure if it is due to the looming BMT or simply "Cabin Fever."

Wednesday, February 19, 2003 3:16 PM CST

Our 18+ inches of snow has brought us some "good clean fun" Well, it is at least clean until they all trudge inside. I am tired of washing and drying all those coats, hats, and gloves but am also so happy to be at home to do so. Jeffrey has enjoyed a few sled rides and some winter fun with his sisters these past few days. Unfortunately, the snow is so deep that he has to crawl everywhere. It is a sight to see.

Our clinic visit on Tuesday went well. It was primarily a visit for Meghan and she did well. Tomorrow, we will go to NIH for Jeffrey's radiation orientation. I am not sure what to expect from all of this, but I am sure that our questions will be answered accordingly. This is all new to us and a bit scary. He is scheduled to have 3 days of radiation and two days of chemotherapy to get him ready to receive Meghan's marrow.

We want to thank everyone again for the wonderful meals that have been sent over. They have really been a bright spot at the end of the day, and we know that some special love and prayers have gone into their preparation. Thank you for your generosity.

Blood Drive - February 22 at Children's Hospital,
111 Michigan Avenue NW, 202-884-4000 and at St. John Neumann Catholic Church 11900 Lawyers Road, Reston, VA 703-860-8510 . Both blood drives will be held from 9 to 1 pm.

Thank you for your continued support through this time.

Sunday, February 16, 2003 11:42 AM CST

The last few days have been a lot of fun. On Valentines' Day, Stephen and I decided to take the children to Disney on Ice. We took the Metro which made our adventure that much more exciting. I know the evening will be a positive memory for all of us.

Jeffrey continues to get stronger and stronger each day. He has given up his naps over the past few days, but sleeps long and hard at night. I was also able to take him off his TPN this morning which makes him very happy. He will not have to be hooked up for a whole week now. This week, however, will be packed with hospital visits each day to get ready for the bone marrow transplant which is scheduled for March 4. We are scheduled to repeat the CT scan on Friday. Let's hope he has shown improvement. We will also go to NIH to have the simulation for his radiation treatments on Wed. or Thurs. Since this is his second transplant, we will be even more aggressive with his treatments. He will receive radiation twice each day for three days, two days of chemotherapy, and then a day off before he receives Meghan's marrow. We will definitely need prayers during this time.

February 22 - Blood Drive at St. John Neumann or Children's Hospital. Since Jeffrey will not yet be in the hospital, please give whole blood rather than platelets on this day if you intend to direct donate for him. Thanks in advance for you support!

Wednesday, February 12, 2003 1:50 PM EST

The Virostek Household has sure been a home full of happiness. As you know, Jeffrey was released from the hospital, took his motorcycle out for a bit of cruisin' and has been lollygagging around. It sure has done wonders for the mind and body. He is eating, drinking, and having lots of fun. What a difference a week can make! We are assured that all of our prayers as well as the ones that are being said for Jeffrey throughout the United States and abroad have made their way straight to God's ears. (All 50 states are now covered!!)

On February 11, 2003, Jeffrey and Meghan made the Sacrament of Holy Communion in our home. Father Charles Chamberlain from Bishop Ireton was our presider and he made the ceremony very personal for us. It was a magnificent event - as illustrated by the new pictures on this site. The children were adorable, so proud, and enthralled by this holy sacrament.

We had been planning take Jeffrey back to Children's for a lung tissue biopsy on Thursday, but our plans have changed. After much deliberation - and quite a few prayers - we have decided that the risks of surgery outweigh the benefits at this point. We have opted to keep him on the anti-fungal medication and will re-do the CT scan next week. That will give us a better understanding about what the legions are doing. Jeffrey had showed marked improvement between the last two scans - so we pray that this trend will continue. One says they take each day as it comes, but we are most definitely doing that in this household. If all is well, we will begin our pre-BMT regiment on the 25th of February with the actual transplant being the first week of March. We ask for your continued prayers that Jeffrey will be healed.

Just a reminder that there will be a Blood Drive at St. John Neumann Catholic Community in Reston and at Children's Hospital in Washington, DC on FEBRUARY 22, 2003. Come on out and save a life!

Wednesday, February 12, 2003 12:02 AM CST

The Virostek Household has sure been a home full of happiness. As you know, Jeffrey was released from the hospital, took his motorcycle out for a bit of cruisin' and has been lollygagging around. It sure has done wonders for the mind and body. He is eating, drinking, and having lots of fun. What a difference a week can make! We are assured that all of our prayers as well as the ones that are being said for Jeffrey throughout the US and abroad have made their way straight to God's ears. ( The entire US is now covered!!)

On February 11, 2003, Jeffrey and Meghan made the Sacrament of Holy Communion in our home. Father Chamberlain from Bishop Ireton was our presider and made the ceremony very personal for us. It was a magnificent event. The children were adorable, so proud, and enthralled by it all.

We were all set to take him back to Children's for a lung tissue biopsy on Thursday, but our plans have changed. After much deliberation and quite a few prayers, we have decided that the cons outway the pros at this point. We have opted to keep him on the anti-fungal medication and re-do the CT scan next week. That will give us a better understanding about what the lesions are doing. He had showed marked improvement between the last two scans so we pray for the trend to continue. One says they take each day as it comes, but we are most definitely doing that in this household. If all is well, we will begin our pre-BMT regiment on the 25th of February with the actual transplant being the first week of March. We ask for your continued prayers that Jeffrey will be healed.

Just a reminder that there will be a Blood Drive at St. John Neumann Catholic Community in Reston and at Children's Hospital in Washington, DC on FEBRUARY 22, 2003. Come and save a life!

Saturday, February 8, 2003 10:48 PM EST

Jeffrey has left the building! There have been numerous sightings of this famous boy all over the USA (see pictures). Word has it that he is saying "thank you" to all those who are praying for him. And if you see Jeffrey, please let his parents know.

Friday, February 7, 2003 9:13 AM CST

The update you have all been waiting for. Jeffrey has improved greatly and has not had any fevers for 24 hours now. Our prayers have definitely been answered! I am anxiously awaiting his counts to see if we are now above 250. This number represents enough white blood cells to take him off of some of the antibiotics that is on. Yeah! I am pushing for him to go home if his numbers rise above 500 anytime soon. I think that it is a needed and necessary break from the chaos that has surrounded us the past few days. A little R&R at home would do a world of good.

We are attempting to reschedule the CT scan for Saturday to determine the need for the lung biopsy. The chest x-ray showed more infiltrates, but the nodules in his lungs can only be seen through the CT. We are praying hard that the nodules have gone away. If they have not, we will proceed with the biopsy to determine if they are fungal. If it does turn out that they are fungal then they will be surgically removed. Leaving a fungus would cause pulmonary hemorraging when we do the second transplant. Prays are needed!

Information update:

The Leukemia and Lymphoma Society will be raising money on February 14 by providing Carriage Rides at the Reston Town Center beginning at 6 pm. If you need an idea for your honey - how about dinner and a romantic ride around the "town".

Mark your calendars for February 22. Children's Hospital and the Washington Hospital Center will be conducting blood drives in honor of Jeffrey. One drive has been scheduled at St. John Neumann Catholic Community in Reston and the other is here at Children's. Even if you are not A- or AB- your blood is still needed.

Wednesday, February 5, 2003 11:34 AM CST

It has been a hectic few days but today is a bit more normal. After many consults from all the specialists, we have made the decision NOT to go forward with the open lung biopsy today. Jeffrey’s lungs are sounding more “junky” from the RSV and he is not a good candidate for surgery. If we did have surgery today, the probability of going into respiratory distress is a huge risk to him. We were pleased that the pulmunologist came to discuss the risks with us. We are continuing with one anti-biotic and the anti-fungal. We truly hope our decision will be the best for him in the long run.

We are having a good morning. He has watched a movie while under his “tent”, rested a bit and put together a puzzle with Daddy. We also found out that his ANC has gone up from 59 to 88 and his platelets were 142K after a transfusion early this morning. At last, we have some (much-needed) encouraging news.

We want to thank those wonderful individuals that have brought meals, entertained our girls and brought activities and other goodies to the hospital for Jeffrey. Your contributions are both needed and appreciated.

Tueday, February 4, 2003 5:22 PM CST

Things on 3-Yellow have been hectic. No one seems to know exactly what they are doing. We've had a few problems and incident reports have been filed. At one point, Grammy had to go to the nurse's station to ask them how high did the alarm on the heart and lung monitor have to register in order for someone to respond. His pulse was at 200-210 when a normal reading is around 100. That brought the chief resident, the charge nurse, and the intern along with a page to his primary physician. I guess some heads will roll. I showed my frustration but was a bit too polite. Later in the day, we were informed that he would be having surgery tomorrow after being told in the am that it had been postponed. Too say the least, I am ticked. I am just glad that we have a good relationship with the nurses and doctors on the Hem/Onc floor so that my questions can be answered and answered as quickly as possible. He is still under their care and they are really appalled.

Last night, we were to start his nebulizer treatment but as you can imagine from the other scenarios, that did not begin until 4 pm today. He has been a trooper although he does not like to be under the tent. He must have these treatments to help with the RSV.

Tomorrow they plan to do an open lung biopsy to rule out fungus. Please pray for him that it does indeed rule out a fungal infection because that will make treatment harder for the bone marrow transplant. Please also pray that the surgery goes well and that this can be the last mountain to climb during this hospital stay. Due to the nature of the surgery, Jeffrey is going to require a chest tube which will keep us here for a minimum of 7-10 more days.

We are very happy to report, though, that Jeffrey does have an ANC of 59. This means that the white blood cells are coming back. Yea!

Monday, February 3, 2003 10:44 PM EST

We have changed rooms! No we haven’t been upgraded to a suite. Jeffery has been diagnosed with the RSV virus and we are now on the third floor of Children’s Hospital – in the pulmonary unit. We hope and we pray that RSV is the only bug that Jeffrey has. The doctors will be testing for fungi via a lung biopsy later this week, so stay tuned. We will be on the 3rd floor for 5 to 7 days while he receives treatment in a specially filtered room. I am told that this room has a different type of filter than was in his bone marrow room. The new filter sounds like an outdoor electric generator. I don’t want to be cynical, but I am left wondering whether there is any other obstacle to slumber that the hospital and the doctors intend to toss our way. Tasha will need ear plugs for sure.

Vacating the old room was difficult. We got the word about 6:20 pm and we had to feed all 3 kids, take down all of our pictures and artwork, pack our clothes, food, books and toys. We did this in about an hour, but it was a 3-ring circus. We really do appreciate the toys, games, books, crafts, etc. that our friends and family send to the hospital, however please keep in mind that is can be difficult to manage all this stuff within the confines of a small hospital room. What we really need now are blood donations, platelet donations, and your prayers.

Please pray that Jeffrey successfully fights off this RSV virus and that no fungus develops on his lungs (or elsewhere). We also need you to pray for his little body – so that it will tolerate all the antibiotics, antifungals, etc. without breaking down. We need you to pray for his mind and spirit – that he will continue to fight with the same tenacity that he has shown us in these past 18 months. We are comforted in knowing that “All things are possible with God!”

Sunday, February 2, 2003 8:31 PM CST

The past few days have been trying. Jeffrey’s body is fighting some sort of infection without any of his white blood cells. Efforts to diagnose the specific nature of the infection (bacterial, viral, or fungal) have proved to be inconclusive. We may have to resort to a lung biopsy this week, but in the meantime he is taking several anti-biotics and an anti-fungal medicine. It is maddening to say the least because we do not know who the enemy is! As a result, we spend much of our days and nights lying in bed and trying to rest, but the truly restful sleep eludes him (and us). To top it all off, Jeffrey starting losing his hair on Saturday. We need your prayers now more than ever!

Thank goodness that Jeffrey can be distracted by painting, reading good books or watching videos. We enjoyed painting “Blues Clues” pictures and listening to Mrs. Joyce’s books on tape (Chicka-Chicka Bom Boom, Caps for Sale and The Big Hungry Bear). We did a lacing activity for the letter “L” and ate a few bites of grapefruit from Mom-Mom. Jeffrey and Daddy’s weekend was much improved with two visits from Mom-Mom and Pop-Pop, followed by a visit from his Mommy, Grammy and his sisters. He always seems to perk up for his sisters’ visits! Angela, Meghan and Jeffrey enjoyed playing "Hangman" and a matching game on the computer (new picture). Jeffrey also proudly presented a birthday card to his Mommy (new picture) and made a mini-forklift out of wood and screws with Grammy.

Friday, January 31, 2003 at 09:27 PM (CST)

Jeffrey has really been a trooper, but today his little body did not have the energy to do much. He is still plagued with high fevers and this yucky cough. A bronchoscopy was performed to culture the nodules they saw on the CT scan they performed yesterday. We hopefully we get some answers in the next few days. The doctors are treating him with everything plus the kitchen sink, but we need more data so that we may fine tune the medications. It has really been a tough few days for this little guy.

With the little bit of energy he had, Jeffrey did manage to make a birthday surprise for Mommy with Jacqui. I cannot wait to see the end product.

Good night!

Thursday, January 30, 2003 at 08:56 PM (CST)

Jeffrey had a rough night with high fevers, low blood pressure, and generally not feeling well. He had a CT scan today and it showed definite spots in both lungs. It does not present as a virus so now we must see if it could be a fungal infection. The doctors have put him on another antibiotic and an anti-fungal to cover all bases. They want to do a biopsy of the lungs tomorrow to see exactly what strain of what they are dealing with. Hopefully the additional information with help them treat his symptoms and help the fevers go away.

Despite not feeling like himself, he managed to have a lovely visit with his sisters and even was seen performing acrobatics with the girls and one of the interns. He truly amazes me. He misses everyone and cannot wait to go home, though. The days are getting very long for him now.

Our list of prayers has extended to Australia and I got an email from a man in Antartica. WOW! One of the nurses is from Nova Scotia and her brother is in Canada so we can put those on our list too. This is so neat to look at the map and see all of the places where someone is praying for Jeffrey. I need to get an atlas now. :) North Dakota, Vermont and New Hampshire are are only remaining states now.

Wednesday, January 29, 2003 at 08:10 PM (CST)

Jeffrey has definitely been riding the fever roller coaster. Thank goodness for tylenol and his little fighting attitude. He has been a trooper and putting his best foot forward .

We received the results of the x-ray and it did indicate a possible pneumonia so we have now added two more antibiotics. We will repeat the x-ray sometime in the next 24 to 48 hours and pray that the medicine has done its job. If the fevers continue we will then start ambisome which is an anti-fungal. I am praying for no more high fevers!

Katie, Jeffrey's cousin, was in Children's today for eye surgery. Jeffrey was disappointed that she could not come up for a visit but was thrilled that Uncle Rob and PopPop came for a bit. Jeffrey has talked about Katie all day and made her a sticker. I think he thought it was neat that she was in HIS hospital. We are glad that surgery went well and will pray for a speeding recovery. Katie shared with me the cutest joke so I will pass it on. "What did the worm say to the caterpillar?" "Where did you get that nice fur coat?" Hee!Hee!

Many of you have asked which states we still need prayers from to complete our map. Here is the list that seems to be getting shorter every day.
New Mexico, North Dakota, Kansas, Arkansas, Wisconsin, Mississippi, South Carolina, New Hampshire, and Vermont. The challenge is on- can we do it? As Bob the Builder would say "YES WE CAN!"

Thank you for your prayers. Please pray that Jeffrey's numbers start climbing upward soon. It is no fun being at zero.

Tuesday, January 28, 2003 at 03:55 PM (CST)

Jeffrey definitely enjoyed his weekend. He is anxious to have his sisters come back for another visit. What a treat! Unfortunately, he had been experiencing some low-grade fevers on Sunday and by midnight had a full blown fever. We got him started on the routine rounds of antibiotics and will watch his fevers closely. He is most likely fighting against his own body at this point. We all have fungus and bacteria that live compatibly in our bodies, but these can be harmful to Jeffrey when his counts are at zero. I am glad that we are in the hospital during these times. He does have a cough and they have requested a chest x-ray to make sure his lungs are clear. I think they are, but they want to establish a baseline.

Today he received platelets and tomorrow we will get packed red blood cells from a direct donor. Thank you to everyone that has been coming in to donate blood. He seems to need blood products every 4 days and may be in need of more platelets from a directed donor next week. All donations are welcome!

He has perked up a bit after a nice nap, a visit from Father Chamberlain, and a visit from Grammy. He even has been feisty at times this afternoon. Feisty is good. He has been enjoying doing all the crafts that have been sent in by his school. We made a Brown Bear, Brown Bear book and laced a mitten , and are working on a Valentine.

Our love map of prayers has extended to outside of the US. Prayers are being said in Venezuela, Ireland, Spain, Portugal, Puerto Rico, Chile and India. Wow! We have only 12 more states to go before the entire US has been covered with prayers. Keep those prayer chains going!!

Sunday, January 26, 2003 at 09:08 PM (CST)

Daddy and Jeffrey had a fantastic time together this weekend! Jeffrey was the engineer of our train which we took across the country to all those states (Texas, Florida, Montana, and Michigan) on our Grandma Cherry Cola map. At times, our train sprouted wings and flew to places like Hawaii and Alaska. We took on some hitchhikers (Pop-Pop, Jaqui, and Angela) and ate Doritos. Daddy collected the tickets.

We also had family time today - 2 hours together in a hospital room. The kids were having such a good time that we had to tell them to turn it down several times. Tasha brought in the blender and some ice cream so that we could make milkshakes. MMM MMM Good! We ordered Perperoni Pizza from Dominoes (b/c they suport Make-a-wish) and watched some of the pre-Super Bowl programs. The commercails were so violent and goory that we opted to forego the game and watch a "Country Bears" video instead (Take that ABC!).

When we are together, we are able to put aside our worries and enjoy the moment. What a blessing that is!

Friday, January 24, 2003 at 08:25 PM (CST)

Jeffrey was really quite cooperative staying prone today. I must confess that we did watch a lot of TV. We tried reading, listening to music and doing some coloring. We found that coloring was difficult lying down. We also took a nap. It was a lazy day for us. Jeffrey did not complain of headaches so that is a good sign. His blood pressure keeps us on our toes, though. He is really up and down throughout the day. We will continue to watch it closely. Jeffrey has stabilized with his weight, but he has lost about 1.3 pounds. I think that since we have been inactive, he is not using up the calories and then he doesn't want to eat and then he loses the weight. Well as you can see, we are caught between a rock and a hard place. Stephen and I agreed that this is now the time to get him on some supplemental nutrition. I wish he would drink a protein shake but he doesn't like them. I wonder if I could take my blender and some ice cream and we could make our own. We could just have a milkshake stand from our room and offer it to the other patients. Ok so I guess I am going off the deep end here :), but it sure sounds like fun.

Today Jeffrey received some great presents via the hospital postman. Thank you to Erin, Kathy, and Grandma Cherry Cola for your wonderful little surprises! Jeffrey really enjoyed the fruit flavored bubble gum that looked like band aids and the map of the US with so many hearts on itto represent all of the prayers being said for him. There really are a lot of people out there pulling for us. Thanks!!

I wanted to mention another wonderful present - St. John Neumann and Children's Hospital will be holding blood drives on February 22 in honor of Jeffrey. Many people will benefit from your generosity so please participate if you can. Thank you Deirdre for organizing this for us.

Thursday, January 23, 2003 at 09:05 PM (CST)

Jeffrey enjoyed a sleepover last night here at Children's Hospital with Grammy while Mommy went home to get some healing hugs and kisses from Daddy and the girls. I seem to have come down with a sinus infection and needed to get myself onto some good antibiotics. With Jeffrey being neutropenic (very low white blood cells), it was necessary for me to stay away for 24 hours. Grammy and Jeffrey faired well and are planning the next night for me to go home. I think actually Jeffrey has requested Papa to come. I don't think they would sleep - those two wild boys.

Jeffrey still remains in good spirits. He continues to experience a few headaches which the neurologist thinks is due to a slow leak of spinal fluid. ( He had a spinal tap last week and chemo was injected to combat any leukemia in the CNS. The tap was clear!!) The leak should heal itself and is not a threat to him - just a nuisance. We have been asked to keep him lying down for 24 to 48 hours. I guess we are going to be having a reading and movie viewing marathon for the next day or two. Jeffrey feels so good right now that I think it will be hard to keep him prone. Wish us luck!

We have received the results of the cytogenetics and the tests reveal that the translocation of markers on the DNA are the same as his original diagnosis. We knew that AML was a hard one to beat, but it is stil bewildering that these beastly cells could just hang out in his system for nine months. I guess we will never really understand how or why.

Tuesday, January 21, 2003 at 07:39 PM (CST)

Mommy was right and Jeffrey has not lost 2.5 pounds since entering the hospital. He has lost a little bit but nothing to be worried about at this point.

Monday, Meghan and Mommy came down and brought Jeffrey his Happy Meal. (Angela was home with a icky tummy) It must have been delicious because he devoured the whole thing. After a wonderful dinner, Jeffrey had his talent show. He was disapppointed that Angela could not be here to see it, but we videotaped it for later viewing. It was cute and Jeffrey felt so proud.

Today, Jeffrey started off the day with extremely low blood pressure which was alarming for all, but we treated him with saline and then this afternoon he received blood.(Again, the blood was from a directed donor so thank you!) We are hopeful that this will correct the problem. Other than that, he has had a fabulous day. We played memory games, put together some picture puzzles from his classmates, watched Bengi, and ate lots of good food. He was really full of himself and quite fiesty for someone who was in need of a blood transfusion.

I met another family with a boy age 13 who has been newly diagnosed with AML. The boy's name is Wilson and he is in need of prayers. He just came up to the floor after being in the ICU for a week. His dad asked about Jeffrey and as positive as I feel the past year has gone, I was at a loss for words. I guess hearing that I have a child who has AML but has relapsed is not very reassuring for this family. I do believe, though, that we will have a lot of positive words to pass on once we get through this. Jeffrey is going to be our winner!

Monday, January 20, 2003 at 10:17 AM (CST)

Jeffrey has perked up a bit and was even seen chowing down on a chicken bone leg. After finishing that, he decided that Daddy's food looked good, too. We are thrilled to see him eating because we were informed that he has lost 2.5 pounds since entering the hospital. As his mommy, I find that hard to believe. He looks great. His headaches are still a nuisance and the doctors do wonder if it is due to lack of food. (I guess a pint of strawberries a day, chocolate milk, and mac and cheese just doesn't cut it.) Personally, I think they are grasping at thin air. I would be happy to be proved wrong, though. His request for dinner tonight is a Happy Meal so let's see how good McDonald's tastes after chemotherapy.

Today Jeffrey is receiving platelets so thank you to those who have already come down and donated such a perfect gift! I also wanted to thank the wonderful "honey" that helped us complete our honey-do list. I am glad that he did not fall off the roof trying to get our Christmas lights down. :)

The question has been asked regarding the hue of blue that Jeffrey's chemo was... dark blue like the night sky. It was very dark and indeed did turn a few things blue like tears, *etc.* He found it quite entertaining.

Monday, January 20, 2003 at 10:17 AM (CST)

Friday, January 17, 2003 at 09:56 PM (CST)

It seems that everyone who calls the Blood Donor Center has been told that Jeffrey can receive A- and AB- blood.
This is consistent with what we have been told as well but...he may also receive O-. That should be correct since O- is the universal donor. I think to avoid any confusion my suggestion is -- if you are able and willing to donate no matter what blood type you are --COME ON DOWN. The blood donor bank is in desperate need of blood!

Stephen arrived at the hospital this afternoon with a new train for Jeffrey. I am not sure who was more excited to get it set up daddy or Jeffrey. In no time we had it out and set up. I think that we are able to hide it under the bed when not in use. Thank you Mr. Saleh and to his family for sending such an exciting gift for Jeffrey.

Jeffrey has started a new chemotherapy and it is bright blue. When I say bright blue I really mean BLUE. I was amazed! Jeffrey has shown no immediate problems to this round thus far. He is experiencing some headaches, but lying down helps. His fever has not returned but now his counts are low so we must be very watchful of any infections. His ANC has dropped to 146, but the doctors are not concerned since it is probably the BAD white blood cells that are being destroyed and the good ones are the ones hanging around a bit longer. I hope they are right.

Angela and Meghan had their talent show tonight. Angela did a few clown skits with her Brownie troop and also a modern dance routine with Meghan and two of their good buddies- Alexandra and Brooke Johnson. Both groups that performed were wonderful but hey I am not bias. Jeffrey and Jacqui along with Mommy have decided to do a talent show for the girls on Monday. We will be playing several melodies on our kazoos. It should be a hoot or is that a hum. Jeffrey cannot wait to see his sisters! He talks about them each day and wants to report all that is going on in his day.

I have been asked to mention that Lyn Page 703-716-5575 lspage@toad.net is coordinating meals for the family. Please contact her since I am really in the dark being at the hospital during the week. I will tell you that I did come home to find a whole freezer full of meals. Thank you Denise and Grandma Cherry Cola :) I think I will start diving into them now so that I may enjoy!!

Wednesday, January 15, 2003 at 10:48 AM (CST)

I was finally able to get onto the website from the hospital and really felt good reading all of the supportive words that people have written.

Last night was difficult with Jeffrey having to receive eye drops every two hours and then he came down with a fever. We have started on heavy duty antibiotics and the fever has left us for now. His ANC is still good so hopefully with the good medicines he will rebound quickly. He feels pretty puny today and doesn't want to eat. I am trying to keep him drinking so that he can be unhooked for a bit during the day. Even though he doesn't want to get up and move around much, he does like the idea of being able to get away from slow poke for awhile.

Thank you for your prayers!

Tuesday, January 14, 2003 at 09:36 PM (CST)

Day Two

Jeffrey's spirits were better today. Grammy and Papa cheered his spirits with a visit and with treats. Jeffrey gave Papa back his knuckle sandwich. There were no needles, but Jeffrey was hooked up to slowpoke (IV pole) for a few hours to receive his 1st dose of Ara-C (chemotherapy).

At home, Angela and Meghan enjoyed a lunch visit from their Daddy. They have been reluctantly making the adjustment and expressing a bit of fear and frustration that we all feel. Thankfully, they are in very good hands with their grandparents, teachers, and some truly amazing friends. We know that our support group is hard at work caring for us in many ways. We will remember you also when we pray (which is nearly all the time).

Keep those prayers and blood donations coming! Jeffrey can only receive A-negative or AB-negative blood donations. While Jeffrey could recieve platelets from any blood type, the doctors strongly prefer A-negative or AB-negative also. Once again, the blood donor number at Children's Hospital is 202-884-5437 and the web address is www.cnmc.org. Please pass this info along!

Tuesday, January 14, 2003 at 07:54 AM (CST)

Day One

Jeffrey was sad when we admitted him to Children's Hospital on Sunday, January 12th. This time, he knows what is in store for him these next few weeks. I can't blame him for being a little sad.

We continue to cheer his spirits and distract him with new crafts and old favorites ("Jungle Book"). On Monday, he recieved his broviac around 11 am without complications. While under anesthesia, the Doctors performed a spinal tap. The preliminarily finding was that no leukemia cells were in his central nervous system. That news was sweet music to our ears!

Keep your prayers and blood donations coming! Jeffrey can only receive A-negative or AB-negative blood donations, but can recieve platelets from anyone. The blood donor number at Children's Hospital is 202-884-5437 and the web address is www.cnmc.org.

Sunday, January 12, 2003 at 01:38 PM (CST)

What a day the Lord has made. Let us rejoice and be glad!
For some reason these words came to my mind as I sat down to write this update. None of us feels like rejoicing (quite the opposite) but despite our sadness and tears the day has been a good one. Jeffrey has slept well and played hard the past couple of days and has been full of laughter. Meghan and Angela are having a hard time expressing their sadness but are being troopers. Angela had a fun filled weekend as did Meghan which was a God send. It surely kept their minds off the bad news.

Today is the day that we go back to the hospital. Jeffrey will receive his new broviac tomorrow after some platelets tonight. Please wish us well!

Friday, January 10, 2003 at 09:06 AM (CST)

I do not know if hearing that your child has leukemia is easy but we have learned that hearing that your child has relapsed is even more devastating. As you know, Jeffrey has been sailing right along and has had no signs of the leukemia. On Tuesday, we learned that Jeffrey's platelets were low. Ever the optimist, we thought maybe it could be just low platelets (ITP), but knew in our hearts this awful disease had reared its ugly head with a vengence. Thursday, Jeffrey had a bone marrow aspirate and it confirmed our worst nightmare - the leukemia was back. To say the least, our emotions are raw. We are in complete bewilderment as to why, how and why again. We have opted to go forth and give chemotherapy a try before doing a second bone marrow transplant. We have been advised that we will be changing a few things this time as to be even more aggressive than the last time. Jeffrey did well last time, but unfortunately it may not be the same this time. We do remain hopeful and will continue to have faith that he will sail through it again. Please keep us in your prayers.

We will be needing blood supplies again so please see any updates on this site!

Monday, January 06, 2003 at 09:26 PM (CST)

Today, Jeffrey turned 4 years old!

He awoke to a wonderful pancake breakfast this morning from his Mommy. Then he opened some gifts including two pairs of sweatpants and a Spider-man outfit! He celebrated with his classmates by bringing "Gushers" into pre-school. The teachers were thrilled at the lack of crumbs.

He came home and played in the snow with his sisters. We ordered pizza from Dominoes at his request and enjoyed dinner with his Mom-mom, Pop-pop, Grammy, and immediate family members. Auntie called to wish him a special day!

After dinner we opened presents. He received a large Crane Truck (like the kind that Papa's association represents), a barrel-filler machine (for his train set, and an electronic Marine-life game. His sisters put on a musical show, followed by a fashion show. As if that wasn't enough entertainment, we finished off the day with an appearance from a superhero - we think it was Superman! We had cake and ice cream which riled us up for bedtime. Good night and God bless!

Sunday, December 29, 2002 at 06:20 PM (CST)

Christmas in the Virostek household was filled with joy this year. Jeffrey and his sisters woke up after a magical Christmas Eve snow shower to find that Santa had brought them an air hockey table. It has really been a hit for all of the children (Stephen included!). We spent a wonderful morning opening gifts and enjoying being together this year. The best part of my day was having all of my children in one place and hearing the happiness around us. We are so thankful for all of the prayers that have been answered and wish everyone a blessed 2003!

See the enclosed pictures.

Wednesday, December 18, 2002 at 04:05 PM (CST)

Jeffrey and his sisters are getting very excited about Christmas that is only 1 week away. I think that today we actually finished all of the shopping. It will be nice to not have to worry about getting out in those crowds. Meghan asked Stephen the other day if there was a Santa. When he responded "what do you think?" she said very sincerely "I think Mommy is Santa". I sure feel like the man in red. The next day she accused her daddy of stealing the hot chocolate so I guess that she thinks Santa is married to a crook. It has been a delightful time in our house with the lights lit on the house and the train going around the tree. It is certainly helping us make new memories.

Jeffrey had his monthly appointment at Children's. The rash that we thought might be another round of graft versus host disease is taking care of itself which is a great relief to us all. They tested his immune system and things are on track. He still is not at 100% but that is to be expected. He continues to make progress and amaze us with his good health. We are truly blessed at this holiday season. Many happy hugs to all!

Sunday, December 01, 2002 at 06:46 PM (CST)

We celebrated a wonderful Thanksgiving with lots to be thankful for this year. Jeffrey is making some new holiday memories. This season is full of surprises for him, such as the festive decorations that are going up around the neighborhood. He is also eager to put up our tree and the train set along with our decorations that he has so happily discovered. It is a magical season thus far.

We enjoyed a wonderful visit with Uncle Brian, Aunt Mary, Erin and Amy in their new home. Jeffrey loved playing dress up with the girls. See enclosed photo. With a hohoho, he is off!

Sunday, November 10, 2002 at 08:44 PM (CST)

We have returned from an exhilarating trip to Sea World, Magic Kingdom, Give Kids the World, Animal Kingdom, and Epcot!

Thanks to Make-A-Wish for the trip of a lifetime. Jeffrey’s wish came true at Sea World when he was able to feed, pet, and interact with Shamu, the Killer Whale. Unfortunately, the film in our camera did not advance and we were distraught over the prospect of going home without a picture of this fantastic event. Then, the great people at Sea World went beyond all reasonable expectations and arranged a second backstage visit with Shamu. We made sure that both cameras were ready to take the enclosed picture.

Jeffrey really enjoyed Shamu's Happy Harbor, too. He was able to run through a series of mazes and get wet at the same time. At Magic Kingdom, his favorite rides were Buzz Lightyear and the Astro Rockets. Throughout the trip he ate more french fries than the rest of us combined!

Angela enjoyed watching the Dolphins, the Manatees, and the Lion King show the best. Her favorite rides were Space Mountain and Thunder Mountain. I guess there is quite a bit of Montana in that girl after all!

Meghan enjoyed the water slide at the Grand Floridian and going on Thunder Mountain with her Mommy and Peter Pan with her Daddy. She enjoyed meeting several Disney characters including: Mickey, Minnie Pooh and Tigger.

Tasha and I enjoyed the terrific people at Give Kids the World. And the kids loved the unlimited amounts of ice cream!

The smiles are still on our faces with terrific memories of our family trip to Orlando. Thank you to all of you who made this trip possible.

Thursday, October 17, 2002 at 11:31 AM (CDT)

October has been filled with a lot of fun events. We went apple picking and enjoyed picking and eating apples. We now need to make something with all of these apples that we climbed trees to get. While there we also went on a hay ride, walked through a corn maze and swung on the ropes into the hay pit. It was definitely a fun-filled day. Jeffrey has no problem keeping up with his siblings.

This past weekend we travelled to Williamsburg and Jamestown. The children loved the history just as much as Stephen and I. Jeffrey's favorite section of Williamsburg was the magazine with all those muskets and the wigmaker. He wanted Stephen to buy him a gray yak wig. It was a precious moment with the merchant trying to entice him into getting one. I am not sure why Jeffrey wants a wig since his hair is back. It has come in wavy which I love! Angela's favorite part was the horse drawn carriages and the Governor's Palace. Meghan I think liked the ships in Jamestown. Everyone had their favorite, but being together on a trip was the best part of all.

We are now getting ready to take our trip to Orlando. Jeffrey made his wish through the Make a Wish Foundation and requested to meet the Dolphins at SeaWorld. We will be leaving on Halloween. I am not sure who is more excited the grown ups or the children. We know what is in store for them and look forward to seeing their faces when we arrive. It will be a well earned trip for all. I now understand what people say about the first anniversary of a tragedy being difficult. My brain sees to go into overdrive during this time period with memories of what we have gone through. I am thankful for the good health of my children and remain positive that we have battled and won this fight. Jeffrey is a living testimony of a miracle and I thank God everyday for the life that we have. Once again, I thank all of you that have prayed for us and those that continue to pray, those who comforted us and those that have sent meals, those who made donations for the Leukemia & Lymphoma Society, and those who walked with us in the Light the Night walk. We appreciate everything that has been done in Jeffrey's name and hope that we can continue to pay it forward!

Sunday, September 29, 2002 at 09:30 PM (CDT)

Light the Night, 2002

We had a very successful gathering at the Reston Town Center with approximately 70 participants on the Virostek Team. Thank you to everyone for coming out on a terrific night. This event raised $192,000 - about $30K more than last year. Angela and Meghan carried the banner (new picture) and Jeffrey was a gracious celebrity. After the 2 mile walk, we enjoyed the rock-n-roll band (oldies) and Mrs. Field's cookies. Jeffrey was cuttin-a-rug with his Grammy and Papa. Jeffrey also played "tag" with all five of his cousins and three children of Stephen's cousins (We did not know whether to call them 1) "1st cousins once removed" or 2) second cousins, or 3) cute little ankle-biters that we know and love). These activities are something that we only dreamed about six months ago.

This day is also a big mielstone on our journey as it marked 6 months since his bone marrow transplant. Jeffrey is still in remission and is doing everything a 3-year-old should be doing.

Sunday, September 22, 2002 at 10:19 PM (CDT)

Just a quick note to say that we are doing well. We have had a busy weekend with soccer, horseback riding lessons and visiting with the cousins. We are also preparing for our Light the Night walk on Sept. 28 Jeffrey is really excited that so many people are coming out to walk with us. We found out today that even more of the extended family will be joining us. We are so thrilled. Aunt Kristy and Uncle Rob with the 3 cousins did the walk in Columbia, MD on Thursday. That night raised over $42,000 for the society. It gives me chills. A little boy who was at John Hopkins and received his bone marrow transplant this August was at the walk. It was a miracle that he was able to attend only after 50 days post transplant, but also a miracle that he had the energy. Way to go, Jonathan!!! We are cheering for you.

Thursday, September 19, 2002 at 09:35 PM (CDT)

Jeffrey is getting over the cold that caused him fevers on Sunday and Monday. He had been feeling pretty lousy and had Mommy up quite a lot with the congestion and fevers of 102. His normal childhood colds I guess require fevers to help his immune system fight the yuckies. It makes sense because that is what young babies do that have immature immune systems. Poor little guy, but we are back on the mend. Stephen is also on the mend and has gone back to work after several days of severe back pain. I can empathize and am glad that he is making improvement.

Our clinic visit on Tuesday went well. The nurses and doctors were very happy to see him. The funeral for Matthew was on that same day soI think that our little miracle was a reminder of why they do what they do. There are successes out there and Jeffrey is definitely one. I am happy to say that with our 6 month mark coming up, we are still cancer free. Remission is such a great word!! Keep the prayers coming, though!!

We have assembled our team for Light the Night on September 28 and have 30 walkers so far. I am proud to tell you all that we have also raised over $2000 for the Leukemia and Lymphoma Society. Way to go team! Donations and more team members are still welcome up to the 28th. The more the merrier!!

Thursday, September 12, 2002 at 08:51 PM (CDT)

Today has been a day of reflection and sorrow for me. I would like to pass along a prayer request. Jeffrey's little friend from the hospital - Matthew Stokes- passed away on September 11 from complications of his bone marrow transplant. I have wept and prayed for this family and ask that they remain in your thoughts and prayers. There must be a very special place in God's kingdom for this little guy.

My sorrow is immense, but I am so ever grateful for the little boy that sleeps peacefully in my house tonight. He is healthy, happy and truly a miracle. May we always cherish the moments.

Monday, September 09, 2002 at 06:22 PM (CDT)

We certainly have had some exciting days this past week. Angela and Meghan started back to school and have many things to talk about when they get home. They are quite animated with their tales. It is great to have them so excited. Jeffrey has had the chance to have some playdates with his little friends ( Austin and Chad) so he too has had lots to talk about.

Friday, Jeffrey had his first trim around the ears after 9 months. Wow! He was so excited that he asked it he could come back really soon and have his whole head done.
What an exciting day that will be! Saturday, we had a soccer scrimage and now Jeffrey and Angela have indicated that they would like to play in the Spring. Can you see me with all 3 children on Saturdays having game? I guess we will make do if that is what they want. I will truly be a soccer mom.

Sunday was a big day. We participated in the FairLakes 8K which raises money for future bone marrow drives. Angela and Stephen ran in the 2K while Jeffrey, Meghan and Tasha did a run/walk. Grammy was unfortunately left behind to walk in the 2K. We had no intentions of running, but when Angela took off and did not stop there was no choice but to join her. Papa was our hero and ran the 8K and finished in the middle of the pack. He should be very proud, because he looked just like those young guys that were running :)
I guess this was a good way to prepare for the Light the Night Walk that we will participate in on September 28. This walk raises money for the Leukemia and Lymphoma Society for future research to combat blood related cancers. We are very proud to walk knowing that Jeffrey is in remission. He will hold a special illuminated balloon on the walk to show that he is a survivior. It should be a great night with many family members and friends coming out to show their support. We feel so blessed!

Jeffrey was a normal little preschooler today and it was superb. I felt sad dropping off, but I quickly got over that knowing that he was going to have a terrific time. He did and it felt great knowing that he was just a normal little boy today.

I have put some new pictures so take a peek. Love to all from the Virosteks

Monday, September 02, 2002 at 08:00 PM (CDT)

Here it is, the last day of summer and wow! I cannot believe that we have made it this far. I probably cannot believe it because over the past week, my children have driven me to insanity with their whining, crying and bickering. I guess it really is a great feeling!! :) Jeffrey will begin school next week on Monday. He is looking forward to it with great enthusiasm. I am so happy for him that he can return and be like any other "normal" 3 year old. He looks like one too. His hair is growing back very nicely and he has lost a lot of the extra weight from the steroids. Isn't it great to be as normal as possible?!

Today, Stephen took the three children to the pool It was only 75 and cloudy but they begged for a last hurrah. Good thing my husband is a fish, because I had no desire or enthusiasm to take them. They were chilly, but had a great time.

Good luck to everyone who is going back to school!

Sunday, August 25, 2002 at 06:53 PM (CDT)

It has been almost 5 months since the transplant and we are doing very well. Our visit to Children's was actually pretty uneventful with only one exception- we have graduated to going only once a month now. Yippee and high fives all around!! We are so thrilled with the progress that he is making.
Jeffrey will begin preschool on the 9th of September and he cannot wait. He is disappointed that he cannot go to school on the 3rd with the girls, but I am looking forward to a few days with just my little guy. He needs a bit of time to be a three year old and play and just hang out with Mom.
My instincts will always be on edge as you can imagine. I found a bruise on Jeffrey that was unexplained for a few moments there and I began to panic. I guess I will always have the rush of adrenaline with him forever. It is so amazing to me that he is so well now and has been through so much. I am grateful for the days we have shared and look forward to so many more.

Wednesday, August 14, 2002 at 05:02 PM (CDT)

Life is good!

The Virostek's returned from a few fantastic days at Bethany Beach. The weather was perfect at 80 degrees and low humidity. We feel so blessed (and so normal). Jeffrey loved swimming in both the indoor and outdoor pools. He can stay underwater for almost 10 seconds! Angela and Meghan had a blast digging in the sand, swimming in the pools and going into "deep" ocean water with their Daddy. Angela rode her 1st wave on the boogey-board! Stephen and Tasha enjoyed an evening out at Mango's Restaurant. We all went miniature golfing for the 1st time as a family. Every experience together is much sweeter after our recent battle with cancer. Mom-mom and Pop-pop enjoyed playing with and talking to all the kids. Thanks for your ompany and for the terrific hospitality at the condo!

Meghan returned from the beach just in time to get her tonsils and adnoids out at Fairfax Hospital. The surgery went well. She was home two hours later and is still groggy with a bit of soreness. We rented the movie "Snow Dogs" and had a few good laughs before Meghan drifted off to sleep.

Saturday, August 03, 2002 at 04:45 PM (CDT)

Day 128+

Jeffrey, Tasha, Angela, Meghan,. and Grammy spent a few days at Bethany Beach. All kids were so excited that they couldn't sleep the night prior to their trip. They had terrific, but hot, weather. Angela, Meghan, and Jeffrey spent a little time in the waves and a lot of time on the sand. While in the water, they were able to hear the clicking sound of the nearby dolphins. How exciting! They ordered pizza on the beach for dinner one night - Armand's delivers, but they didnt get the toppings quite right. Jeffrey showed us that he has been paying attention at Angela's swim meets - at the outdoor pool he swam a few feet towards his Grammy. The kids also discovered jellyfish in the ocean and "ghost" crabs that came out at night.

Nurse Jacqui and 'Becca came to visit one day at the beach. The kids and adults had a great time!

All is returning to normal on the homefront. We got the childrens' portrait taken at Target today - and we relished every minute of it. We thank you for your continued prayers for Jeffery and for us.

Friday, August 02, 2002 at 11:46 AM (CDT)

Jeffrey, Angela, Meghan, Grammy and I had a faulous time at Bethany Beach. Angela taught us about tiny little clams in the sand, we saw "ghost" crabs that come out at night, swam in the waves ( all of us), saw many dolphins, and even heard them underwater. It was glorious! We also played in the pool and ate ice cream. Jeffrey even learned how to swim a little bit in the pool. I think that seeing the three children together playing and exploring was so refreshing. It was a time to reflect and enjoy each others company. On Tuesday evening, we had a special visitor, Jacqui and her daughter. We loved having them there with us. We are so thankful for Mom and Dad Virostek who so graciously let us stay at their condo.

Sunday, July 28, 2002 at 03:56 PM (CDT)

Day +122

The number just keeps getting larger and larger. Jeffrey is feeling well, but seems to be very tired these past few days. He even took a few naps this week. Nothing to worry about, though. He is probably saving up his energy for our beach trip. Mommy ( that's me) is taking the little people to the beach along with Grammy. We are very excited to go and build sandcastles and jump the waves.

Prayer requests: Josh who lives in California is a little boy who just received a heart transplant. Things are going as well as can be expected but he is still not out of the woods yet. Please pray that his pneumonia heals.
Joey who is 19 years old still has not gone into remission with his AML. Pray that his doctors can find a donor or find the right combination of chemo to put him into remission. Matthew who remains in the hospital after his bone marrow transplant. The list goes on...

Tuesday, July 23, 2002 at 08:20 PM (CDT)

Day +117

We had our visit to Children's today and all looked good. Jeffrey had been running a fever and we had to take him to the ER on Sunday ( actually 1 am on Monday). He had his first fever since being home and they wanted to make sure that he did not have an infection. We were told it was probably just a virus. It seems that he has a cold and his little body needed the fever as an extra measure to fight it. At least, it was not something that put us back in the hospital. He is doing great!

Jeffrey's has been put on a new medication - TUMS. It seems that his calcium level was low. I wonder which flavor he will prefer :) I like the mint flavor the best. I guess we will be fighting heartburn and the lack of calcium in one shot.

We have been swimming in the pool since he got his central line out and he is loving it!! We will let him go in again after he is fever free for 24-48 hours. Angela swam butterfly on Monday at the developmental meet. She did well and hopes to swim it on Saturday and the divisional swim meet. They will find out tomorrow. Stephen is besides himself because that was his stroke. We will see what happens. The next thing on Stephen's agenda is teaching her a flip turn since that will be required next year in the 9-10 age group. We have all winter to work on it. :)

Friday, July 19, 2002 at 07:25 AM (CDT)

Day + 113

What a great day! Yesterday, Jeffrey got to go in the pool and he was in heaven. I put a tegaderm over his existing bandage and let him go in. The surgeon told us that we should wait at least 48 hours to go in the water and so we did right down to the second. Jeffrey was a fish and captured everyone's attention. He approached anyone he knew and asked for them to watch him do his trick. He would bob up and down and then go under the water. It was truly a sight to see. Jeffrey woke up this morning and put on his bathing suit. I guess he can't get enough of the pool.

Lately, everything makes me cry be it happy or sad. I think I didn't cry for 9 months and now my tear ducts are overflowing. Oh well, it was such a symbolic day. When we arrived home from the pool, our nurse practioner called with the news from the cytogenetics and the rflp test. The RFLP tests how many donor cells are circulating. The golden answer is 100% and that is exactly what they found. The cytogenetics were also normal. We expected these tests results to show good news, but you never can tell. I think we all gave out a sigh of relief when we got the call. WAY TO GO, JEFFREY!!

I attended a kick off for the annual 2 mile walk for the Leukemia and Lymphoma Society. I have volunteered to be a team captain and hope to get a long list of people to walk with us. If anyone is interested, please feel free to give me a call. It will be held on Saturday, September 28 at 6:45 in Reston , Virginia. There are many all around the US so if you don't live here in DC, log onto www.lightthenight.org It will give you all the information regarding when and where around your area.

Tuesday, July 16, 2002 at 12:20 PM (CDT)

Today was an exciting day! Angela went to the orthodontist to get her braces on. She really looks cute but is now experiencing some pain. Poor girl!

Jeffrey went to the surgeon to get his broviac out today as well. He went into surgery around 10:20 and came out after only 20 minutes. They said he was a trooper. They all fell in love with him at the outpatient center in Rockville. He was so excited to be free of the lines that he kept announcing to everyone - I didn't even feel it!! We asked about swimming and they said just a few more days. We need to at least give it 48 hours before we should attempt to go in a pool. I think I will wait until this weekend at the earliest. We are thrilled to have yet another milestone behind us. Way to go!!

We hosted a party on Sunday to celebrate his 100 days. I think everyone had a good time. Jeffrey loved being able to be around his cousins again along with some of his friends. It was a glorious day!

Wednesday, July 10, 2002 at 08:21 PM (CDT)

Day +105

Grammy, Jeffrey and Mommy left the house at 7 am to get down to Children's Hospital by 8:30 for Jeffrey's 100th day bone marrow aspirate on Tuesday. All went well and the good news arrived around noon -the aspirate looked perfect. We will be getting the final report in about 2 weeks. Interesting enough, his white blood counts were low making his ANC 660. His platelets were at 331K,though. That is an all time high!! Jeffrey went from having the aspirate to having an echiocardiogram - everything looked good - to playing bingo in the atrium and then to a video session with the nurse practioner. They filmed him having a dressing change. It was a long but positive day. We got home to then find out that next Tuesday is when he gets his catheter out. Wow! We may even get to the beach and the pool this summer.

An update on Matthew Stokes - he is out of the PICU and back up to the BMT unit. He is making a little bit of progress each day. All of your thoughts and prayers have paid off!! Please also pray for a friend's cousin who is seeking a bone marrow donor. She is another AML patient and hopes to find a donor from the registry. Also, there is a little guy in California that is awaiting a heart transplant. He is the nephew of a family friend. He is little and needs all the prayers that he can. Thank you for presenting these petitions in your prayers.

Saturday, July 06, 2002 at 12:55 PM (CDT)

Day 100

HAPPY 100th DAY Jeffrey!

We reached a huge milestone today in Jeffrey's Journey. His 100th day began with big smiles and hugs all around. We had bacon and pancakes for breakfast, before joining Angela at her swim meet. She posted two personal bests - one in 25m backstroke and one in 25m breastroke. Way to go Angela! The swim team cheered Jeffrey on also - with Happy 100th day Posters and a cake from the Carey family with 100 candles (see new pics). Thanks also to the Dixons, the Halls and everyone else who helped us celebrate. Thanks to all of you who prayed for us - day-in and day-out through our journey. We learned what truly awesome friends and family we have in our lives. God Bless each of you.

Tonight we will celebrate with Grammy, Papa, Auntie and our own personal fireworks show. Tomorrow, we are looking forward to our ride on the fire engine. We have so much to be thankful for and so much to celebrate.

Saturday, July 06, 2002 at 12:40 PM (CDT)

Day 100

HAPPY 100th DAY Jeffrey!

We reached a huge milestone today in Jeffrey's Journey. His 100th day began with big smiles and hugs all around. We had bacon and pancakes for breakfast, before joining Angela at her swim meet. She posted two personal bests - one in 25m backstroke and one in 25m breastroke. Way to go Angela! The swim team cheered Jeffrey on also - with Happy 100th day Posters and a cake from the Carey family with 10 candles (see new pics). Thanks also to the Dixons, the Halls and everyone else who helped us celebrate. Thanks to all of you who prayed for us - day-in and day-out through our journey. We learned what truly awesome friends and family we have in our lives. God Bless each of you.

Toinight we will celebrate with Grammy and Papa, Auntie and our own personal fireworks show.

Sunday, June 30, 2002 at 09:25 PM (CDT)

Day +94

I write today with mixed emotions. We are so excited to be on our way to day 100 and doing so well. I can only hope that he continues to thrive after that day. I have so many questions to ask on Tuesday as far as his limitations. I do not believe that he will have any, but it just seems too good to be true. Saturday, we went as a family to the pool after dinner. Stephen took Jeffrey in the pool on his shoulders. Jeffrey only got his feet wet, but the smile "wet" his whole body. It was a sight to see.

I, however, am feeling a lot of pain for two families at Children's. The other two AML patients that I have mentioned do not have such wonderful news. Rachel (age 11) died last Tuesday due to complications of a staph infection. I cannot imagine the sadness that her family feels right now. Please keep them in your prayers. Our other little friend, Matthew, underwent his bone marrow transplant and is now in the PICU and things do not look promising for him. I do believe in miracles so please feel free to ask for any and all for this family. They have come so far and remain positive but I can only imagine the emotions that they face each and every day.

Wednesday, June 26, 2002 at 09:56 PM (CDT)

Wow! The kids are so excited about our final countdown. They want to make a paper chain to count down the last 10 days. Can you believe that it is really just around the corner? The girls keep saying - Let's write wishes down on the chain of all the things that we want to do once 100 days passes. Angela's first wish was to go to Disney World. We will have to put that one on hold until later this year (hopefully).

Jeffrey had a great clinic day on Tuesday. He was again rewarded with the news that his platelets were at 146K. Yipee is what he said exactly. I continue to taper him on the steroids but I became worried tonight when I noticed under his eyes were very red and his foot started to itch terribly. Jeffrey was not the usual when he first got the GVHD and I believe that the first sign was actually the redness under his eyes. I hope I am wrong because we are all so excited that he is coming off of the Prelone. I will be calling the doctor tomorrow to discuss this new development.

Jeffrey has decided that he wants to go horseback riding on his actual 100th day and ride a fire engine and go to the zoo and have a cake and visit the farm and etc. Wow won't we be busy. I think that we will try to go to the Fourth of July parade ( sitting in the shade) and go on the fire engine on the 6th. We met a fireman that said he could arrange a ride for us on Jeffrey's 100th day and I hope he can still pull through with this. Jeffrey can't wait!

Monday, June 24, 2002 at 02:43 PM (CDT)

We are getting so close to the 100 day mark. We are all getting excited and anxious. Jeffrey keeps reminding us about "when I was two and could be in crowds". I think he will be happy to be a bit more normal in the very near future. We keep tapering off of the steroids and he seems to be doing great this time around. His skin is not as red or blotchy. We are down to taking the steroids just once a day. Jeffrey is so excited about his progress. He shows off his hair growth and asks us to share his platelet level. He is so proud and so aware of what is going on.

Tomorrow we are off to the clinic again for our weekly visit. We are hoping that they will tell us when they expect the broviac to come out. Please continue to pray for those that are still in the hospital such as Steven, Matthew and Rachel.

Wednesday, June 19, 2002 at 09:20 PM (CDT)

Day +83

Our clinic visit went well and our numbers are still stable and in the normal range. We gave each other the thumbs up and did a happy dance. Finding out our numbers is no less exciting then when we were in the hospital. We are continuing the taper of the steroids and that is going ok. He seems a bit more red on his face and arms. So we are watching it closely. Jeffrey has also gained about 6.5 pounds since being put on them. I guess it is all that good eating that he is doing. He still comments that he is fat and happy. I am glad that we can all just laugh and that it really is not an issue.

I need to mention the wonderful deed that Angela, Meghan and Angela's brownie troop did on Saturday. Angela and her brownie troop had held a yard sale and made the decision to donate the proceeds to Children's Hospital in honor of Jeffrey. We travelled down to Children's Hospital and presented Dr. Dinndorf a check to be used for books, magazines, and toys for the Day Clinic's waiting room. The troop dressed up in their clown outfits and sang songs with the patients as well. It was a fabulous day for all. I have put a picture on the website for all to see.

Please continue to pray for our friends that are still in the hospital. As I read or hear about what they are going through, I pray that they will get through all of this quickly. I know however that the days drag when you are worried. It is never easy to see your child hurting or so very ill. We have been fortunate that since our return home that Jeffrey has done so well. I find myself marvelling at God's work each and every day. Thank you for your continued prayers for Jeffrey and our family.

Monday, June 17, 2002 at 08:40 PM (CDT)

Day +81

We are off to the clinic tomorrow and I have lots of questions. It seems that Jeffrey is doing very well and we are going stir crazy. Today I decided to go to the pool with him. Jeffrey and I sat on the side of the pool and tried to squirt the fish (Meghan and a friend)with our water sprayer. They kept getting away but we sure had fun. I was told that I should use my common sense and it said that going to pool with him would be fun and safe. I hope that I was right. I keep him in the shade as much as possible with lots of sun screen on, a hat and sunglasses. As far as germs, we did not really get close to anyone. With the girls home, it is hard to stay home all day. We will see what they have to say tomorrow.

I have a request for all of you. There are two little boys - Steven in Texas and Matthew at Children's that are in their first few weeks of their bone marrow tranplants. They could use some extra prayers. Steven is having a hard time with pain right now due to mucusitis and is pretty miserable. Matthew is doing well but is also battling those terrible mouth sores. I have to say that I cried when I read the news. It is all so clear in my head what our past 9 months have been like. I count our blessings and look at the bright side, but there were some really tough moments in there. I am so thankful that our little guy pulled through so beautifully, but it still makes me sad to look back on the not so bright times. Please pray for these little guys that they too will see the light at the end of the tunnel.

Father's Day and Angela's birthday (June 16) was a great day! We did a lot of celebrating and rejoicing for all of the goodness in our life. We had a barbeque with ribs, corn, potato salad and shrimp along with a great cake to celebrate Angela's 8th birthday. We played wiffle ball and laughed a lot when Jeffrey ran from here to "wild blue yonder" as he would say. He ran the bases yelling hubba hubba. I think he spent a little too much time with PaPa on Saturday. :)

Thursday, June 13, 2002 at 08:29 PM (CDT)

Day +77

Our clinic visit went well with our numbers going up up up!! We are now at 161K platelets. He was so excited and did a little happy dance. As you can imagine, our hearts soared with the news. We are also tapering the steroids for the GVHD. It seems that the GVHD is under control at least for the moment. We will see how this series of tapering goes. I am hoping that we will be off the steroids and then the broviac can then come out. It would certainly make the summer that much more pleasurable for all. He will be able to go in private pools after the 100th day which will be a starting point for some real summer fun.

Today we went to the ear nose and throat specialist to have a look in Jeffrey's ears. It seems that he had one tube that was blocking the view of the eardrum. I would not have been a happy camper if a little ear infection put us back in the hospital. Dr. McBride removed one tube with no problems and will extract the other in approximately 3 months. Jeffrey is now awaiting the tube fairy's visit. He thinks that he will get some candy. We shall see what the fairy came up with this time. :)

Sunday, June 09, 2002 at 04:10 PM (CDT)

Day 73

We have had a busy and enjoyable weekend! Stephen took off Friday to run the tug-of-war at Poplar Tree's Field Day. He had a great time barking out orders to all the K thru 3rd-graders! He did his best to wear out all the kids. Angela and Meghan had a blast!

Jeffrey spent Saturday at Mom-Mom and Pop-Pop's house. What a nice change of scenery! They went to the park, found a turtle, and played some games. The rest of the family had a good time at the Nextel Summer Picnic (new picture enclosed).

On Sunday, we went to mass in shifts. After lunch we had our first family bike ride in a LONG TIME! (new picture). It was a hot day (90 degrees) but we loved it anyway. Angela distributed her Birthday invitations to her friends and saved a few pennies on postage.

Friday, June 07, 2002 at 07:39 PM (CDT)

Day +71

We apologize for not getting any updates out sooner, but it seems that there has been some problems with the website. Hopefully, we are back up and running.

Jeffrey had his weekly visit to Children's Hospital on Tuesday. He was a trooper as we left the house at 9:30 am and did not get back home until 5 pm. It was his week for his cytogam infusion. The blood tests came back indicating 146K platelets and 4.5 WBC. We are cruising in the right direction. His platelets had been going down the two weeks prior ( not anything huge) so it was a great relief and comfort to see that we are heading in the positive direction.

Great news... Jeffrey's hair is growing back. He has peach fuzz on his neck and cheeks, new eyebrow hairs, and lots of fuzz on the top of his head. He is so excited!!

Jeffrey has been enjoying playing with Mommy, visiting MomMom and PopPop, visiting Grammy and PaPa , and cooking up a storm. He loves to make pancakes, muffins and macaroni and cheese. He really is loving being in the kitchen with Mommy and/or Grammy. He is quite the helper. We need activities to do as the days are getting longer. I think that Jeffrey is really in need of some more 3 year old companionship and luckily that day is just around the corner.

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

Caringbridge.com had a few technical issues this week, but seems to be back up and running. We apologize for the long delay between our posts.

Jeffrey did well this week and at the clinic. His blood cell counts are still in the same range, as expected. His GVHD seems to be coming back a bit, so we are returning to the normal dose on the steroid.

As a result, his appetite is back with a vengeance. For those of you who play the market, go ahead and invest in string cheese futures. This guy can eat string cheese with a vengeance! I wonder where he gets his appetite?

Monday, May 27, 2002 at 03:27 PM (CDT)

Day +61

Happy Memorial Day!! I had the opportunity to look over all of the emails and website messages that we have posted and I cannot believe what the last 8 months has been like. I must say again that the strong support from our family and friends really keeps us strong. For whatever reason, today has been a tough day for me. I think seeing families all together at the pool made me sad that Jeffrey has 39 more days to go. I know that we have come so far and have done so well, but you know how it is. We always want the greener side of the pasture. I am grateful for the progress we have made, but I do fantasize about what the days will be like when we feel "normal" again.

My back is feeling pretty good today. I will go see the doctor on Friday to see what changes I need to make. I cannot wait to get back to the gym. I am sure more exercise will be helpful.

Jeffrey is doing well. I look forward to going to the clinic tomorrow to discuss the taper. Jeffrey has been limping the past couple of days and I wonder if it isn't the GVHD acting up again on his feet. I am looking for answers and I am not sure if I will get them tomorrow but we will see. I think we need to give the steroids a little more time. He is feeling well and still eating us out of house and home. It is great to see him with lots of energy and so happy.

The girls are doing well. Angela starts swim team tomorrow. Stephen took the girls to the pool this weekend. Angela will be back in shape in no time but it was a bit tiring for her to swim a lap. Wish her luck this season.

Tuesday, May 21, 2002 at 08:30 PM (CDT)

Day +54

We are more than half way to the 100 day celebration. Jeffrey is doing great! We began tapering him off the steroids, but he seems to have flared up just a bit so we are going to slow it down a bit. We will remain at a consistent level of steroids over the next week to see if his body just needed some more time for the new cells to get aquainted to their surroundings.

Today was a long clinic day but Jeffrey handled it beautifully. We had our transfusion of cytogam along with bloodwork, physicals by the team, and visits from some of our favorite people at Children's Hospital. When it was time to leave, Jeffrey response was "that didn't take so long." We had been there for 6 hours so far but hey I guess when you are laughing with Mommy, snacking with Grammy, and watching videos the time flies. At prayer time, he told me that he was thankful for a great day. I can only echo that.

DONATIONS NEEDED: One of the young ladies at Children's who also has AML is in desperate need of white blood cells. It seems that she has a blood infection and has no way of fighting the infection with the few white cells that she has. If you think that you can help - please contact Children's Hospital. She is now in the ICU and is really in need of your help.

Wednesday, May 15, 2002 at 03:11 PM (CDT)

Day +48

Our visit to the doctors on Tuesday went very well. We found out that he is filled with 100% donor cells in his blood. The tests have shown that the bone marrow transplant was a huge success at this date. We remain hopeful and faithful that he will continue to be cancer free. I guess we can now officially and confidently say that he is in remission!! Way to go!!

We are beginning the weaning process on the steroids for the GVHD. His liver is still a little bit enlarged but the size goes down after the enzyme levels go down. We are happy and healthy. We will return next week for our bimonthly infusion of cytogam. Our platelets are up to 128K. That is more than anytime I can remember.

For those who have sent well wishes for my back. I have seen the doctor and we did an MRI today. We will see what that says on Monday. I have taken Vioxx and that has given me some relief.

THANK YOU TO ALL OF YOU WHO SENT MONEY TO COVER THE COSTS OF GETTING THE HOUSE IN SHAPE FOR JEFFREY'S HOMECOMING! OUR GRATITUDE IS BEYOND WORDS. WE LOVE ALL OF YOU!

Sunday, May 12, 2002 at 05:56 PM (CDT)

Happy Mother's Day!

Today was a great day to spend with all of my children. We had a small brunch at our house this morning with all the moms in our family along with Allison and Todd. It was wonderful to have everyone here to celebrate a great day. I sure feel lucky today having Jeffrey home and doing so well. His rash has gotten much better and we even have been able to take him off the Atarax (anti-itch).

I have enclosed a new picture of Jeffrey playing "doggy". You can see how the rash is going away on his face.

Tuesday, May 07, 2002 at 07:57 PM (CDT)

Sunday night Jeffrey requested spaghetti and has not stopped requesting it since. I guess the homemade sauce that Auntie made was a big hit. Unfortunately, I do not think it was sauce but Jeffrey's huge appetite. His increase in appetite is probably from the steroids that he is on right now to combat the GVHD. Auntie came over again on Monday. Jeffrey wanted to know what she had brought him to eat. He is eating us out of house and home!! The kids had a great time with Auntie. Angela loved sitting down with her and doing her ABC book for homework. Jeffrey and Meghan made her some homemade pizza dough which I hear was delicious.

Today's visit to Children's Hospital was a positive one. Jeffrey's counts were very close to normal. His platelets were at 128,000 which is just shy of the low end of normal. We were overjoyed. His GVHD is also getting better. His rash is still a bit itchy but is not nearly as inflamed and red. We will probably keep him on the steroids for another week and then taper him off over the following 4 to 6 weeks.

When going to bed, Jeffrey said " Mommy, I am so happy to be home! We only have to go to the hospital now to have blood taken." I could feel his joy. I am thankful that he is doing so well. Keep up with those wonderful prayers and positive thoughts you have been sending our way!!

Sunday, May 05, 2002 at 08:00 PM (CDT)

Jeffrey had an enjoyable weekend. He was able to get out of his own home and go and explore at Grammy's. I think the change of venue was a positive for all. Grammy and Papa had worked so hard on getting their house clean so that Jeffrey could have a place to go. The hard work paid off because he was able to go by himself on Saturday for a couple of hours while Mommy took Angela to riding lessons and ran some errands. Daddy was at home digging away at the stump that was left in our front yard from the tree we took down. And to think we paid money so that machines could grind the stump. What we needed was Stephen and an ax. On Sunday, Jeffrey returned to Grammy's so that we could go to church. I am very grateful for having both sets of grandparents around!!

Jeffrey is making some progress with his rash. It doesn't seem to be as bothersome and inflamed. I have even lowered his Atarax by 1cc. He seems fine with that. We will see what they have to say on Tuesday, but I think things are looking better. I am anxious to go in on Tuesday and see where is blood counts are at( specifically his platelets). He is not bruising as easily and recovers from his falls quickly.

Friday, May 03, 2002 at 06:16 PM (CDT)

Day +36

Let me first say thank you to all who have responded to my request for suggestions regarding Jeffrey's dressing. I am keeping them all in mind. I went to my favorite store today ( Target) while Grammy watched Jeffrey. I found a no ouch bandage that adheres to itself. I am going to try that at the next go around. I am not changing the dressing until absolutely necessary so that I can avoid the pain. This is one thing that bothers me - having a dressing change should not have to hurt. I feel so helpless when he cries out in pain.

We had a good day. Jeffrey is a bit more bothered by the GVHD today. It is not as inflamed but for whatever reason it really itches. I have kept him on a tight schedule with the meds so maybe it is an indication of the healing. He is peeling in certain areas like one does when they are recovering from a sunburn. Maybe the itching comes from the regeneration of the skin. My guess is as good as any. We remained fever free today which is a blessing. I am not sure what was going on yesterday. I noticed that his temperature would go up after being active. Thank goodness that his little body was able to combat whatever it was. He seems happy and healthy ( and a bit ornery), but really nothing out of the ordinary. I will continue to watch him closely.

Please pray for all of our new friends at Children's that God's healing power will touch them. We need to pray for Matthew who is battling a protein attached to his leukemia before he can proceed with his bone marrow transplant, Leah whose ANC needs to go up, and Rachel who is having a tough time with treatment. Please keep these few along with the many others in your prayers.

Thursday, May 02, 2002 at 07:54 PM (CDT)

Day +35

We had an enjoyable day with a bit more itching. I held off on giving him the Atarax so that I could give it to him right before bedtime. I think I should keep him on an every 6 hour schedule because he was pretty miserable this evening. I also think he has been running a low grade fever. I have detected 2 so far. I will take it again at 11 pm. I have warned the girls that if he does have a fever that we will be back to Children's for a couple of days. If he has 3 low grade fevers in a 24 period of time, they consider that a fever. I will keep my finger crossed that these fevers go away.

Wednesday, May 01, 2002 at 08:38 PM (CDT)

Day +34

We enjoyed a full nights sleep in our own beds last night. I am so grateful that Jeffrey was able to sleep and not itch all night. The rash is still very itchy and his skin is beginning to peel in areas but I have to admit that his face seems to be looking a little better. The rash appears to be travelling down his body. I am not sure what to make of it all, but am happy that he has found a little relief. As far as the dressing changes, they seem to just get worse each time. I am running out of room to put anything onto the site. I have tried wrapping him up like a mummy but it slips down and then exposes his broviac site. Tonight I have tried again to allow his skin to get some air with just some gauze on it with no tape. I know that it will be around his waist by morning, but his little chest is so raw. I am taking any suggestions that people have so feel free to send them. I need some new ideas.

Jeffrey and Mommy have been keeping each other company. We are enjoying playing hide and go seek and going on the scooter around the cul de sac. He is also my little helper inside with laundry and the dishes. We just find all sorts of activities to keep ourselves occupied. Today, we went to Grammy's and played on her outdoor play area. It was hard to keep him from going inside, but she has promised to clean her walls so that we may have another place to go. Jeffrey is jealous that the girls can go to friends' houses and he cannot. It is hard to be confined, but we are making the best of it. Today we went out in search of the baby birds that we have been hearing. We did not see their nest, but we sure could hear them. We have also been enjoying watching the big equipment in our neighborhood burrowing holes for cable. Jeffrey talked all day about the word cable and what it meant. It was quite amusing.

More in a few days.

Tuesday, April 30, 2002 at 10:06 PM (CDT)

Day +33

We went to Children's Hospital for the bone marrow aspirate and skin biopsy this morning. Jeffrey was a trooper but he was really affected by the procedures today. It was hard to watch him in pain. Thank goodness for the versaid (memory loss medication). It is unfortunate that Stephen and I could not have had a little too. Well, all in all the day was a good one as the prelimary results are... the marrow is a NORMAL rejuvenating marrow!!!Normal is the optimal word. It has been a long time since that was in our vocabulary. They saw a lot of precursors to the white blood cells, red blood cells and platelets. The doctors saw 3 - 5 % blasts which is normal. The blasts that they did detect were not the same myelogenous blasts from before. What they saw were more indicative of the GVHD. We are so happy with this fabulous news. It sure did bring tears of joy to our eyes. I even felt a little faint hearing the news. His platelets were even at an all time high of 62K. I don't remember it ever being that high without a transfusion. Yahoo!! We have celebrated this wonderful news and hope and pray that the cytogenetics report the same. We have faith that they will.

Jeffrey is still affected by the rash. We have increased the antihistamine to help with the itching. He is miserable during the night when he is not distracted by other things. Last night was another sleepless night for him. I do hope that the medicines begin to work. We really hate to see him this way.

Monday, April 29, 2002 at 03:53 PM (CDT)

Day +32

Wow! We are almost 1/3 through the 100 days. Jeffrey is thriving at home and so is Mommy. It is so wonderful to be at home and to be home for the girls. I think we are becoming used to being one big happy family again. Angela had her 1st Holy Communion on Sunday which was beautiful. Unfortunately, the weather was rainy but rain seems to bring us good luck in this family. It rained on Angela's birth day too. Not to mention our wedding day. Rain is a good sign from the heavens:)!! We missed Katie, Kristy, MomMom and Jeffrey at our ceremony and celebration afterwards, but it won't be long before we are all together again. Thank you to our wonderful family for catering the brunch for us. The food was wonderful.

Now about Jeffrey and his rash. After two miserable nights, I took him to the clinic today. Jeffrey is really bothered by itching and skin breakdown. He is very good at distracting himself through the day, but at night the itching and soreness really bothers him. Dr. Henry and Dr. Kamani do believe that it is GVHD and can easily be treated with steroids. We are trying an oral steroid and an anti-histamine to combat it. I hope it works so that we may all have some peaceful sleep tonight. Tomorrow is our big day for the bone marrow aspirate. We will not have results of the cytogenetics for a couple weeks, but tomorrow maybe we will have some idea of what his marrow looks like with the naked eye. They are also going to do a skin biopsy to confirm the GVHD. Stephen and I will take Jeffrey down early for all of this to be done.

Saturday, April 27, 2002 at 07:59 AM (CDT)

Day +29

We have really been enjoying our time at home. We have been spending a bit of time outside as well. As long as Jeffrey is covered, we are fine so far to be out in the beautiful weather. Unfortunately, we have all been affected by the pollen. I think we have gone through a whole box of tissues just this morning. Dr. Kamani wanted to know if Meghan has allergies and I think I now know that answer.

Jeffrey's skin is very rashy and each day more and more of his body is covered. He does not seem bothered by it, though. Thank goodness. The terrible thing about the rash is that it is under his dressing for the broviac site and when changing his dressing, I peeled a portion of his skin. He cried and I felt awful. I called the doctor today to see if there was anything I can do. I can let it get some air for the day but I do not think one day is going to do much. I tried putting a band-aid on one of the areas and when I took that off his skin peeled again. I feel horrible!! He has sensitive skin and this rash does not help the situation. They are fairly certain that it is Meghan's cells getting familiar with the surroundings and Jeffrey's cells asking her to leave. This really is a lesson of teamwork :). The graft vs. host disease is minimal at this point. Many individuals have terrible GI problems due to GVHD. Since all of the blood making cells are foreign, they attack the large organs such as the skin or GI tract realizing that they are not the same cells. We are lucky so far that his GVHD is presenting as a rash and not bothersome. Some rashes can be disfiguring. We will see what they have to say on Tuesday. Stephen and I will take him down for his bone marrow aspirate and ask all of our questions.
Angela and Daddy went off to have Angela's horseback riding lessons. Jeffrey and Meghan are having a wonderful time playing in the basement. I just love this time!

Wednesday, April 24, 2002 at 04:32 PM (CDT)

Day +27

Yesterday was a fabulous day. Jeffrey was packed and ready to go with a coat, hat, and shoes on well before the discharge papers were written. We opened the door to allow him to walk around the bone marrow transplant area and he would not budge. There must have been an invisible force field keeping him from crossing the line. After a little coaxing and encouragement, he exited his room and began saying his goodbyes with hugs for all. He will be missed. We drove home and had a good lunch of chicken nuggets and fries. Jeffrey ran from room to room looking at changes and seeing what was still around. He had a great time exploring his "new" surroundings. When asked what he wanted to do, he replied, " Go get the girls." We tried to hold him off because we knew they had a surprise planned. At 4 pm, we received a call to take a drive along Melville. Jeffrey was surprised to see that children and their parents were lined up along the road with signs, noise makers and enthusiastic yells. It was truly a homecoming parade. Mommy cried tears of happiness and Jeffrey waved coyly at all. It was a beautiful and special day!! Thank you all for your support and love.

We returned home and sang "Welcome Home to you" and ate more Buzz Lightyear cake. Thank you again to the Bilidas family for the yummy cake!! We allowed Jeffrey to cut his piece. He cut out Buzz's face. Our night continued as normally with baths and bedtime. Jeffrey fell asleep quickly and stayed asleep all night. I am sure it was wonderful for him to be able to sleep without any interruptions. I know it was for me.

At 7 pm , we received a phone call from Dr. Henry at Children's Hospital informing us that one of Jeffrey's blood tests had come back abnormal and needed to be repeated. They said that his uric acid was elevated which shows a breakdown of white blood cells. They were unsure of what that may mean except that possibly he was dehydrated. That would be the best of all possibilities. We went down to the clinic today and sure enough Jeffrey was dehydrated and needs to drink, drink and drink some more. I was relieved especially since they were talking about doing a bone marrow aspirate to make sure it was something in the marrow like the leukemia cells. Oh,that would have not set well with me!!!! We will do a aspirate on Tuesday to make sure all is well, but it is a routine test at this point. We also think that he does have a mild case of GVHD at this point. We will also watch that it does not worsen.

We have had another great day!

Tuesday, April 23, 2002 at 08:35 AM (CDT)

Day +26

WE ARE GOING HOME!!!!!!!!!!!!!!!!!!!!!

Jeffrey looks and feels well so off we go to Quartz Rock Court. His little face is still rashy but they think it is nothing to worry about. Probably just an allergy to something environmental. He does have a little rash also on his hands but if it is GVHD they will not treat it any differently. We are expected back on Thursday for a CBC and to check out his progress. He is probably just allergic to the hospital. :)

Jeffrey has packed and is ready to go. We are just waiting for our chaffeur.

WAY TO GO, JEFFREY AND HIS NEW MARROW!!!!!

Monday, April 22, 2002 at 02:07 PM (CDT)

Day +25

Jeffrey woke up this morning at 5 am to have blood work ( usual morning activity) and his weight taken. Jeffrey decided that having a little snack would be great. Can you believe that we could not rustle up some grub at that time of the day? Don't these people know that when a little guy is hungry that food should be available. Oh well, we decided to go back to sleep and get up and try again at 8 am.

Today we celebrated our "new birthday" with a buzz lightyear cake and purple tea. Jacqui, Mommy and Grammy toasted the great progress that he is making and the next 75 days. Jeffrey ate two pieces and shared the cake with everyone that came by. We called it his birthday party because he was getting extremely nervous and upset when people talked about his departure tomorrow. He is full of energy and seems good to go, but it is a bit overwhelming. (Don't I know it.) Stephen went at lunch time to fill all of his prescriptions so that Jeffrey can be discharged in the morning. I hear that tomorrow there is going to be a one man parade down Melville at approximately 3:45 pm. What a celebration!

PS See our new pictures.

Saturday, April 20, 2002 at 08:23 PM (CDT)

Day +23
What a day! What a day! I feel like it is Christmas all over again. Little angels were all around our house today washing, dusting, laughing and filling the house with joy. Jeffrey called during all the good clean fun to report that he had eaten 3 grapes, his counts were up, and that he was going to have some soda pop. He sounded so wonderful- full of enthusiasm and excitement. The whole house shook with our cheers or joy. Jeffrey had been unhooked from the morphine and no longer has to take the antibiotics by iv. He is trying to take his acyclovir and fluconazole by mouth so that we can come home. The doctors are thinking Monday and I am thinking " Please Tuesday since I need Monday to clean the carpets." Sounds crazy, eh?! The next 77 days will be busy with appointments at Children's but we are so happy to think that we will all be under the same roof. Yipee!!

Stephen came home tonight while MomMom and PopPop stayed with Jeffrey so that Daddy could take his two little girls to a HoeDown. The girls looked absolutely precious and Stephen was beaming. The little ladies had their hair done ( thank you Auntie), had their nails done ( thank you Connie) and wore cute little plaid shirts and jean skirts ( thank you Grammy). Gee, sounds like Mommy had nothing to do with this day but I at least enjoyed dinner with them!! They double dated with Rachel and Brian Cummins. When they left, they were as high as a kite. I hope they did not step on each others toes while do si doing. It was great to see everyone happy and smiling.

It still amazes me that Jeffrey is coming home, but it seems that 35 days in the hospital is his norm. Each time it has been the same number. Way to go!!

Friday, April 19, 2002 at 09:19 AM (CDT)

We have been informed that Jeffrey's marrow is very active. It is so active that his ANC is 304 today. Yeah!!!!!!!!!!!He is being taken off of all of his medications, switched to oral meds, and weaned from the TPN and morphine. You are not going to guess this, but his targeted date is Monday. Can you believe that great news?!
We have moved up all of the dates for the carpets to be cleaned to Monday so he will probably end up coming home on Tuesday if all goes well. I am in a state of shock and in a state of dilirum. What a miracle! My job now is to keep him healthy until day 100. I have become quite the paranoid parent so being home maybe more of a challenge for me than him. I just have to tell myself to take each day as it comes and ask questions along the way.

Thursday, April 18, 2002 at 08:10 AM (CDT)

We are improving rapidly and I am jumping up and down with joy. Dr. Kamani examined Jeffrey yesterday and said that everything looked fabulous. He told us that Jeffrey's marrow was active and producing lots a great blood products. Yipee! His liver enzymes are going back to normal and the liver is shrinking. Do you believe in miracles? I do!! Our task now is to wean Jeffrey from the morphine, the meds and then the TPN. Not necessarily in that order. After that, we can go home!!!!!! Jeffrey put some food in his mouth yesterday and had fewer bouts of nausea and spitting up. I am so excited that I cannot sit still. I hope that my excitment does not backfire on me.

Everytime that Jeffrey has been here, they have explained to us that he would be here for a minimum of 4 to 6 weeks. I guess Jeffrey has in his mind a compromise, because he always is ready to go at 5 weeks. 5 weeks will be on Monday. I am not usually a betting gal, but I think Dr. Bhatia may be right with her prediction of Wednesday. She must have a crystal ball!

We are frantically getting the house ready for Jeffrey's arrival. Thanks to my parents and Stephen's parents we are well on our way. My home is being transformed. What I would like to do is gut it. I cannot believe all of the junk and unneccessary items that we have accumulated. I have been having a field day throwing stuff away, boxing some up for later, and putting aside some for the garage sale in May. Angela's job is to help host a garage sale with her Brownie Troop. I think it is great because they want to then dress up in their clown ministries outfits and present the check to the Hem/Oncology unit in early June. I am so proud of the girls for thinking of this. Thank you troop 4107. I would also like to thank the wonderful troops that have sent cards and well wishes!! Your thoughtfulness is appreciated.

Tuesday, April 16, 2002 at 03:12 PM (CDT)

Today has been a good day. Jeffrey has had fewer bouts of vomiting and is in a great mood. We even made progress with food. He let me bring his food in. He even contemplated eating a few bites, but then thought against it. He has been fantasizing about Popeyes chicken and pizza. He has been using his Nextel phone to make phone calls to all of the local eateries. If only he would eat what he orders. :)

His ANC was up to 142 today and his Hemoglobin has been stable for the past few days. This is great news. Maybe he is even making some of these cells himself now. I cannot wait until we do the DNA testing to see whose cells are growing back. It really is very exciting to think that Meghan's cells are in there making themselves at home. Still no graft vs. host disease but we are looking out for it. We want Meghan's cells to be doing karate chops against the bad bullies if there are any in there. I pray that those bad bullies took a hike and never come back !

We are taking bets to see when this little guy may be coming home. One bet is for next week. I hope all are ready to do a home cleaning party on a moments notice. That would be so exciting!!!!!!!!!

Monday, April 15, 2002 at 04:39 PM (CDT)

Day +18
Today has been a lazy day. Jeffrey has had several bouts of vomiting today. I am really unsure of the reasoning since he seems good otherwise. He received methatrexate (immuno-suppresant) today so maybe that is the reason for the "yucky" tummy. Another cause could be lack of eating so he has a build up of acid in his stomach. Whatever reason, we are snuggling and just keeping each other company. We just finished playing music using coins as symbols and my pen as a drumstick. One will do anything to entertain a 3 year old.

Jeffrey's liver is still at 3 cm but he does not seem to be uncomfortable. We are going to hold off on giving him the intralipids in his TPN since some of his liver functions were still high. We will do another liver enzymes test on Wednesday and then on Friday to see how things are progressing.

His ANC has been hovering around 100 the past few days. Today it was at 65 but they say to have patience because this time around it will be a steady but slow increase. I am still doing the rah!rah! cheer everyday to help those cells grow grow grow!!! As one wise person once said, it will be great when we can finally have our "ceLLabration". I am getting so anxious for that day. I know we have a lot of preparations to make before that time, but it will be a fabulous day! We met a man who is a firefighter at the Fairview station who has offered to take Jeffrey for a ride on the fire engine after day 100. I know that will be a memorable experience for Jeffrey. Joe Beavers (the firefighter) asked special permission so that we can do this treat. I cannot wait. Sometimes I get ahead of myself but it sure does feel good to look to the future.

We must be receiving some great platelets because we will probably not need another batch until tomorrow. It is wonderful to not need them everyday.

Sunday, April 14, 2002 at 12:17 PM (CDT)

Today is Good News Sunday. Jeffrey's liver seems to be shrinking (still not normal size) and his billirubin count is down to a more normal range. So, it looks like the veno-occlusive disease "came to pass" and did not "come to stay!"

In addition, his platelet transfusion yesterday brought him up to a much higher level than we had reached in the past week! We are still battling nausea and sickness - always between midnight and 7 am. On balance, we are thrilled with the news and look forward to brighter days.

Thanks again to everyone who is donating blood and platelets. The people running Children's blood donor center say that 2-3 persons came in each day this week. They all know Jeffrey by name and are amazed by how many people care so deeply for this little boy. We are truly blessed. Let's keep the donations coming this week!

Saturday, April 13, 2002 at 09:05 PM (CDT)

Jeffrey's day was a roller coaster ride again today. It seems that the mornings are difficult for him and then after a nap he is good as golden. We are going to try to premedicate him this evening with an anti-nausea during the middle of the night. Maybe that will help him not wake up feeling so yucky. I believe the TPN makes him feel icky. He seemed to have the same pattern the first time he was on the TPN.

Our meeting yesterday confirmed that they do definitely suspect the veno-occlusive disease. They believe that it is a mild case and should not escalate. Thank goodness for the little blessings. His liver is still enlarged and is tender. They also believe that the platelets are going to the liver and that is why they are being eaten up so quickly. He did get another platelet transfusion today. I hope that the transfusions will not continue to happen everyday, but luckily we should have lots of platelets out there for him to use. Thank you again to all of our platelet and RBC donors.

Jeffrey did enjoy a game of basketball with Daddy and they exercised their lungs by blowing tissues up in the air. We are determined to keep this little guy's lungs free and clear.

Friday, April 12, 2002 at 02:44 PM (CDT)

We are still not out of the woods for the veno-occlusive disease and Jeffrey is having a few more symptoms. When he got up this morning, he was having terrible stomach pains ( due to the enlarged liver)and his weight was elevated. The decision was made to do an ultrasound to see if it truly is the VOD. I am still hoping that it is the TPN. Since his liver was more enlarged today, it is leaning more towards the VOD instead of the TPN. We will wait and see what the results are of the ultrasound.

Thank you to all that responded to our request for platelets. We were able to hold off today since his count was at 14K, but he is going to need more tomorrow. It is important that he gets the right ones so that we can get on top of this problem. He is eating up platelets at an alarming rate.

Jeffrey has developed another fever so he is on another medication. Luckily, we were able to use the ambisome instead of the "amphoterrible". He tolerates the ambisome so much better. When his ANC reaches 250, we will be able to take him off of the anti-fungal. Fungal infections are so dangerous for these children. Having a fever is worrisome, but I think he will get through this quickly if his ANC keeps going up (Today, it was 105.) Fevers are always so mysterious when so many meds are being taken already. We may never have an answer to what has caused them.

The ultrasound technician is here so I must be off.

Thursday, April 11, 2002 at 02:36 PM (CDT)

Jeffrey slept most of Wednesday and was up until 12:30 am. Poor Grammy. I know however that Jeffrey had a great time at his sleepover in room 4168. Papa came for a visit and they did a lot of playing and exercising on Jeffrey's bed.
I have thought that the morphine is what winds him up. They think I am crazy, but I honestly think that he gets stimulated from the meds unless given benadryl in combination. Maybe it was actually just Papa's visit that got him so wound up. :) Those two are quite a pair together.

Jeffrey continues to have stomach pains periodically throughout the day and has mentioned that his throat hurts. His liver remains enlarged, but the enzyme tests look slightly decreased from yesterday. What is causing the pain and inflammation continues to be a guessing game. They are waiting for additional signs and symptoms before they can proceed. It is looking less and less like veno-occlusive disease which is great. My thought is... the TPN is doing the nasty deed. I guess it is a catch twenty-two because you cannot take him off of it because he is not eating, but...
I know we will get to the bottom of this soon.

Jeffrey's ANC is at 84 which is about the same but still a good sign. His body is working hard with those Meghan cells to get him back on track. Our big problem right now continues to be the platelets. PLEASE DONATE PLATELETS! Jeffrey has needed platelets everyday for the past 4 days. We think that he may have produced antibodies to the platelets and now we need to do antibody testing on the platelet supply that comes in. We hope that the more people that donate the better the chances that someone will match him. We pray that the reason for the platelets being eaten up so quickly will quickly be remedied. Until then we pray that generous people like yourselves will donate to keep him stocked!

Wednesday, April 10, 2002 at 03:06 PM (CDT)

If you haven't been on for a bit, day #12 was really great and we have some pictures to show it. Jeffrey was all smiles and we only needed one morphine boost during the day.

Day #13

Today began well, but Jeffrey seems to have hit a little bump. He has needed platelets the past two days and today he needs them again. If anyone can get down to Children's and donate platelets that would be very helpful. We have received O- the past three days. We really need A- or AB-.
Along with this blip, Jeffrey has started to experience some belly pain. His liver is down 3 cm meaning that it is below the ribcage by 3 cm. This can be due to the chemotherapy causing veno-occlusive disease which is damage to the veins in the liver. It can also be due to the iv nutrition called TPN or because of the immuno-suppressant meds that he is currently on. As you can see, we are at the guessing game stage. We hope that all of these issues can be resolved quickly!! I really hope that this is just a minor set back. We are still not seeing any gvhd which is great in a way. I keep praying that all that can go well will continue to do so.

Tuesday, April 09, 2002 at 04:09 PM (CDT)

What a day!! Jeffrey has been playing up a storm. We watched Land Before Time and a Preschool Power video as our rest time activity and then the fun begun. Mommy, Jeffrey and Grammy played another round of golf, basketball, and made silly faces. Jeffrey and Mommy even took his blood pressure and temperature by ourselves today.
Jacqui and Jeffrey also had a great time playing peek-a-boo with Jaguar. What a great day! (see our new pictures)

Tuesday, April 09, 2002 at 10:24 AM (CDT)

Jeffrey had another great night. After a movie and some popcorn we retired about 10 pm. Not bad since he took two naps yesterday. We only got up periodically to have vitals or to urinate. He woke up in a great mood and played a round of golf and bowled already this morning. Phew! I think he is tired now. His throat is still a little sore, but the mucusitis is not present in his mouth or rectum. He also continues to be making those great monos. Yipee!! I have faith that he is still on the upswing. Our nurse, Jacqui has returned and that has made Jeffrey very happy today. She pays a lot of attention to him and explains everything to him that she is doing. He really adores her and so do I. My comfort level is that much greater when she is around. I know that she loves Jeffrey and is ALWAYS looking out for his best interest.

Monday, April 08, 2002 at 08:16 AM (CDT)

Jeffrey and Daddy had a terrific weekend playing, eating popcorn, and drinking kool-aid. You would think that with the combination of exercise and morphine that Jeffrey would have been a sleepy boy. He was not. He took a long nap on Saturday, but then did not go to bed until 1 am. Poor Daddy!! Sunday, he was full of energy and did not ever take a nap and did not go to bed until 10 pm. I can only imagine how tired he may be today. I am just so glad that he felt well enough to be so active all day long. The girls came down to see Jeffrey and had us all laughing. They say that laughter is the best medicine.

On the way home from church on Sunday, Angela asked me why God does not perform miracles like he did with Lazurus. We discussed that He does perform miracles and that he does cure peoples illnesses. I was nervous to say too much just in case, but we have seen a miracle. Jeffrey is doing exceptionally well!! I returned to find out that his mouth sores are gone. This is truly amazing. I cannot explain why this has happened except to say that it is God's work. The other bit of very exciting news is that Jeffrey has some monos. This means that his WBC are beginning to grow. MEGHAN'S MARROW IS ENGRAFTING!!! I cannot tell you how elated we are. We will now look for signs of GVHD but until then we can rejoice in His miracle.

Again, thank you to all of you who have helped us through this long journey. We still have many more mountains to climb but we can do it with the wonderful family and friends that have been by our side.

Friday, April 05, 2002 at 09:27 PM (CST)

I would like to thank all of you who came to the Bone Marrow Drive. We had 165 people show up so that just increases the chances for all of those looking for a donor. Angela and Meghan were great helpers. Angela took on the reponsibility with her friends to collect donations. They collected $800 towards future drives. Meghan showed people were to go to get their pokies and even held their hands through the testing. It really was quite precious. Thank you to all of the wonderful volunteers and to the Bilidas family who supplied us with a lot of glorious food. I appreciate the great turnout!!

Jeffrey had a good day. As Dr. Dinndorf said, he is very good at distracting himself from the pain. He took a 4 hour nap which I am sure will delay bedtime tonight. The rest was needed, though. His mouth sores seem to be a bay right now. He continues to do his mouthcare with little complaint. I hope that he has another good night and a fun-filled Saturday with Daddy. Today, Mommy and Jeffrey got the room ready for the boys adventure to the beach with their surfboard. Jeffrey made colorful fish out of construction paper and I made a sunshine, a pail and shovel, and a sandcastle. We put these colorful and bright pictures up on our door. I think it brightened the room up a little bit and will make a great scene for the beach weekend that Stephen has planned with his little pal.

Thursday, April 04, 2002 at 03:40 PM (CST)

Day +7

Yesterday, Jeffrey slept quite a bit due to not feeling well and being put on morphine. Despite his sleepiness, he had a nice visit from MomMom and PopPop while I went home to have dinner with my girls and Stephen. It was nice to see them!!! Last night was relatively calm. I did not get a lot of sleep because of all of the interruptions by the nurses, but as long as Jeffrey slept, I feel great. He is now on antibiotics every 6 hours along with his anti-viral and anti-fungal meds because he spiked a fever during the day on Wednesday. I was glad I told MomMom and PopPop about his reaction to the vancomyacin before I left. He gets red man syndrome and his whole head looks like a tomato. He has not had a fever since. The mucusitis has gotten worse though. They now have him on morphine every 2 hours. They keep talking about the fact that it will only get worse before it gets better. I know that my little buckaroo will be tough through it all, though. He really does not complain unless it really hurts.

He took a nice long nap today and woke up in a great mood. He has been enjoying blowing bubbles and drawing on the dry erase board today. We have not been as active, but his mood is positive.

Wednesday, April 03, 2002 at 09:14 AM (CST)

Day +6

Today started at midnight on the dot for us. Jeffrey had mentioned before bed that his throat hurt, but at 12 am it was really bad. Poor little guy had a sick tummy on top of it all. With a little zofran for the nausea and vomiting along with moraphine he rested for another 2 hours. Needless to say, it looks like we have turned the wrong corner. I have been told that the mucusitis will only get worse so it looks like moraphine will be our friend for awhile. I have to say that once he woke up this morning, he was in good spirits, but you can tell that he does not feel well. We are trying to teach him how to use the pain chart. He says it hurts but he can still smile so I guess right now the pain is at a minimum. It is hard to assess how he is feeling because he is not a complainer. None of my children are so I have a hard time assessing them when they are sick.

We are snuggling lots today. It feels good to be able to hold him when he doesn't feel well. I wish I could do more but I know that I am doing everything possible.

Tuesday, April 02, 2002 at 09:29 AM (CST)

If through this experience one does not believe in the power of prayer, then they have not been reading our journal. Jeffrey is having another great day. In rounds, the doctors had nothing new to report. They are probably bored, but we are elated. We do hope that once engraftment begins that we do see some signs of graft versus host disease. A little of gvhd will help fight off any hiding cancer cells. I am so amazed at how well this little guy has taken to all of this. I can only hope that our good days are not coming to an end.

Yesterday, we enjoyed blowing bubbles, coloring, taking apart out train, and just giggling up a storm. It is a special time with Jeffrey. I miss my family terribly, but I find such joy in spending time with Jeffrey. He keeps us all happy and on our toes.

Eating has not been our favorite pasttime. He did, however, eat a half container of Pringles. That was all he ate all day along with two Reece's cups and 3 pieces of gum. Aren't I a great mom?

We are about to have PT so goodbye for now.

Sunday, March 31, 2002 at 07:51 PM (CST)

Day +3

What a great day! Jeffrey was full of energy and spunk. The doctors were incorrect that some of the yuckies would hit today. The only bad thing that happened today was that his counts hit zero. Well, that is to be expected so it really is no big deal.

Jeffrey woke up today with a squeal of delight. The Easter Bunny had come to the hospital and brought him all sorts of goodies. He has candy to eat, a new rubber ducky for the tub, and more and more candy. PopPop arrived early today so that Daddy could slip away and go to Mass in the chapel. Father Dominique enjoys having Stephen at mass because he serves as a reader and altar boy.

Jeffrey was entertained with several egg hunts throughout the day and even had a quick visit from his big sisters. He was so happy to see them and that he talked a mile a minute. After a quick rest, Jeffrey played with the empty eggs and found different ways to pick them up with tongs. It is amazing that tongs and plastic eggs can hold his attention so long. PaPa and Grammy also came and another egg hunt was a must. Jeffrey had a blast finding eggs but had even more fun hiding them. He was so proud of the great hiding places that he showed us where they all were. We did a lot of laughing together. We hope that we can all find reason to celebrate during this Easter Season. We cherish the days that we will spend together with laughter and love around us. Today was truly wonderful even though we were here in the hospital.

Saturday, March 30, 2002 at 06:25 PM (CST)

Jeffrey is still feeling very well. The next two weeks we will be looking for the side effects of the chemotherapy as his counts go down to zero. We will look for veno-occlusive disease (liver damage), mouth sores and gastro-intestinal problems. I hate that we are in the waiting place waiting for such terrible things. After 14 to 28 days, we will then be looking for signs of engraftment and any signs of graft vs. host disease. We are hopeful that any gvhd will be minor (just enough to kill off any residual leukimic cells).

We appreciate everyone's thoughts and prayers.

Thursday, March 28, 2002 at 03:48 PM (CST)

Our big day as come at last! Meghan came to the hospital around 10 am today and she was a trooper throughout the whole process. She received a general anesthesia and was “out” for about two hours while Dr. Dindorff and Dr. Bhatia harvested her marrow. They took 320 ml of her marrow from her two hipbones. She came out of the procedure a bit groggy – as you would expect – but is doing fine. (see new pictures) Her room is right around the corner from Jeffrey’s. She will spend the night and is expected to be released tomorrow. Jeffrey began receiving the marrow within an hour. Meghan’s marrow is transfused through his broviac. The marrow finds its way from his bloodstream back into his bones. Amazing!

We are so proud of Meghan and so thankful that her marrow matches Jeffrey’s. The doctor’s tell us that the next 100 days are the most critical for determining whether his body will accept the marrow. July 7th cannot come fast enough for us Virostek’s!

Tuesday, March 26, 2002 at 11:09 AM (CST)

Jeffrey has had a great morning. He wasn't feeling well at first but the zofran kicked in and he now feels fine. Today is his last day of chemotherapy and tomorrow will be a rest day. He will have to begin cytogam today to help combat CMV. CMV is a virus that can cause many different viruses either in the gastrointestinal tract or the repiratory tract. Meghan is a carrier so Jeffrey will be treated as a precautionary measure with cytogam. Meghan will come in on Thursday for the harvest. It will take about 1.5 hours for the entire procedure. They will not be poking her the whole time, but they will take some of the bone marrow out and then count the cells in the stem cell lab. Since both Jeffrey and Meghan are the same blood type they will give Jeffrey the transfusion almost immediately. He will get a boost of rbc and platelets.

Jeffrey had a great time with the physical therapist today. They worked hard to put out fires. I think he was tired afterwards. He also played down on his mat with some matchbox cars that she brought. He has had a good time playing today. We also watched a show this morning. We have been having problems with our tv and vcr and the past couple of days we have not been able to view anything. It was getting irritating. Jeffrey has been enjoying a series called Preschool Power on video and he was unable to view it. We couldn't get any videos to come on nor could we get WETA. You just do not know how important it is to have as many activities as possible at your fingertips when the little guy is held hostage in his room. We are thankful that we at least can get the vcr to work now. He remains a trooper!

We have not decorated our room yet, because we can only put items on the windows that can be washed. I guess I will pick up some of those vinyl window decorations. I am sure that they must have some spring flowers to perk us up or some Bob, Thomas or Clifford. We had a few suggestions on how to decorate but the doctors told us no. We must be so careful about germs in here. Oh well, we will do our very best to make it our own special room.

Monday, March 25, 2002 at 06:32 PM (CST)

Today was a fairly good day with Jeffrey. He was in good spirits and only had two bouts of nausea. I am not sure why the nausea is coming this time. I would think that the bulsulfan would have made him sick. I guess it is a combination of the meds and what is happening inside his body. He continues to eat which is a good sign. His dinner was pears, a push pop, and starbursts, but I am not to worry. The dietician says let him eat whatever he wants, but the Mommy in me wants to fill him up with all the healthy food like broccoli and chicken. I have to let go but it is sure hard. I am thankful that he is still eating a little bit because they say that soon he will not want to eat anything. That is a hard day in my book. I hate when he stops eating because it means that he is feeling poorly.

Today was a busy day with technicians in to fix the tv, physical therapy, nursing visits, and then the all important visit from his grandparents and auntie. He remains in great spirits, but he is tired. We are hopefully going to bed soon!

Sunday, March 24, 2002 at 02:58 PM (CST)

Saturday Mass at the Hospital is the ultimate in convenience. There is no travel time, no singing, no passing the collection basket, no long sermons, and virtually no line for communion. Stephen had the pleasure of taking Angela and Meghan to mass in the Chapel yesterday. All of us participated in the reading of our Lord’s Passion. What a wonderful gift!

Reading about our Lord’s suffering re-connected us with the life of Jesus and helps us realize that he really does understand what Jeffrey (and the rest of us) are going thru. Like Christ, we pray that this burden be taken from us, but we also pray that God’s will be done. Also like Christ, we have fallen many times, but we get back up with the strength of our family and friends. Christ had Simeon and his mother Mary… we have all of you! Thank you for helping us on our journey.

Jeffrey was sick for the 1st time today. He has no interest in food. So, we took a page out of the Ed Goate Entertainment Book… we laid on our “surf board” and blew Kleenex tissues high in the air. Jeffrey was quite good at it and we both had a hearty laugh.

Sunday, March 24, 2002 at 02:58 PM (CST)

Friday, March 22, 2002 at 08:04 AM (CST)

Jacqui ( our favorite nurse) came in to say good morning. Jeffrey looked up at her and said " I am a champ." I was tickled that he felt so good this morning. I was worried that he was not feeling well, because he was up almost every hour whimpering last night. He said his throat hurt, but I think that they had the room too hot last night and he just had a dry throat. Needless to say, we will both be taking a nice long nap today.

Our little friend, Matthew, who also has AML came back last night. He is going through the same regiment that Jeffrey did. His leukemia is also resistant to the treatment so he is on the high doses of ARA-C. I can feel for the family and their turmoil. I also feel empathy for them because they have to do those yucky eyedrops every two hours. He must also go through a bone marrow transplant but his sister was not a match. Their journey right now is to find a donor on the registry. I felt good knowing that we are helping this cause by hosting the bone marrow drive.

It seems that somehow we are on that roller coaster of emotions again. The cytogenetics came back this time with a percentage of translocation of markers. What it all means is that he was never truly in remission. Thankfully, though, he is not in a full blown relapse. We were not surprised by this news since there was no reason for his low platelets except that the leukemia was not gone. This news also is just one more sign that we must do the bone marrow at this point. He seems to have a resistant leukemia and this is the only option at this time. The doctor reminded me that he is not a statistic and he is going to do great. We all feel this, but it sure does frustrate the situation.

Thursday, March 21, 2002 at 08:14 AM (CST)

We have made it through another day here at Children's. Jeffrey was a trooper as Wednesday is cultures day so everything had to be cultured from top to bottoms. When they had to do another round, Jeffrey only whimpered when they did the throat culture. He was so afraid that he would gag and throw up. He did not, thankfully. He also had to have more blood draws. Thank goodness for his central line so that he did not have to be poked repeatedly. The bulsulfan has to be watched closely so they had to take 7 draws in 3 hours. Because of a rain delay with the first blood draws from Tuesday (the tests have to be performed at a lab in Seattle), the blood tests had to be repeated on Wednesday. He joked about his clip getting dizzy from being off and then on. What a little man!

Wednesday was a busy day and unfortunately he did not sleep very well that night. He had a lot of bad dreams in between all of the usual interruptions. He told me he doesn't feel that well today, but I wonder how much of that has to do with lack of sleep. Obviously, I am watching him very closely and get anxious when he says he doesn't feel like normal. We shouldn't see any "ickies" until closer to the BMT and definitely afterwards. I pray that we can stay healthy as long as possible!

One of our favorite nurses is our nurse today. Jeffrey's little face lit up when he saw her. I think it made everyone feel special.

Tuesday, March 19, 2002 at 11:48 AM (CST)

Stephen and I brought Jeffrey down about 7 last night and were inundated with information, rules and procedures. We have been here 3 times previously, but I think we all feel that this is so totally different. There are a lot of precautions to take and a huge amount of meds that he has already started taking. I am definitely having some difficulty with all of their names but I think the list goes something like :
Bactrim, acycolvir, fosphenytoin, zofran, fluconazole, bulsulfan and mouthcare. I had them give me a list of his meds and when they are taken so that I can keep track. I must keep organized and on top of his schedule so that things run smoothly.

Jeffrey has gotten cozy quickly. We are thinking of ways to decorate our room so that it is even cozier. We are restricted to the door and windows so it will require our creativity. I do not think we will have any problems making it feel like home, though.

I find this hospital stay to be a more overwhelming. The Fellow asked if we were excited to be back. I cannot say that is one of the many emotions that I feel. Now that we have started, I do have to say that my emotions are not all consuming. Monday was a day of worry and anxiety for us all. I do know that we are in good hands and that Gods love will prevail. Thank you for the many prayers!

Sunday, March 17, 2002 at 01:51 PM (CST)

We decided that this weekend at home would be filled with fun. Throwing caution to the wind, we travelled to Baltimore to view the Ringling Brothers and Barnum Bailey Circus. What a great day we had! (see new picture) Angela loved the elephants, Meghan loved the clown jumping on a trampoline, and Jeffrey loved the indoor ski jumpers - probably because fireworks accompanied them at their landing spot. All the kids were LITERALLY on the edge of their seats - eagerly awaiting the next act. We ate pizza for lunch, and cotton candy for a treat. (By-the-way, the price of cotton candy has increase 5,000 times since I was a kid... leading me to wonder if the U.S. is being unfairly treated by a cotton candy cartel...). Tasha and I just took it all in - enjoying a terriffic day with very few worries.

We remain concerned about his platelett production (or lack thereof). And so, we took him to Children's Hospital on Saturday night to get some plateletts. We had a platelett donation waiting for us. No one can underestimate how much that means to us. Thank you for all who are donating the gift of life to Jeffrey or to other families.

Today we had doughnuts for breakfast and enjoyed going together to mass as a complete family. Father Chamberlain said a special prayer with our family after mass. Tonight we will celebrate Grammy's birthday. Let the fun continue...

Friday, March 15, 2002 at 08:54 PM (CST)

Jeffrey has been thoroughly enjoying the warm and wonderful weather. I let him wear a short sleeve shirt today. He is so bruised on his legs and arms that I worried that we would have a lot of questions and stares at school. I was wrong. He has been so active at home that it is no wonder that he would look a bit colorful. I just cannot shake my worry about his platelets, but the doctors have reassured me that it would be rare for him to have a spontaneous bleed. I am the mom, though. I am entitled to worry and be cautious. As much as I dread going back to the hospital, I am comforted that we will be there and his low levels can be monitored closely. We make our trek down to the luxury resort Monday evening. His chemo will then begin on Tuesday at 9 am. They expect him to feel fine for the first few days. I can only hope that he does as well this time as last. He will be on bulsulfan for four days and then another chemo for the next four. He will have a day of rest and then the bone marrow will take place. The first drug will eliminate the cells and the second drug is an immuno-suppressant. They are used in conjunction to rid Jeffrey of his bone marrow to make room for Meghan's good marrow. Future bloodwork that is done on him will then determine which cells are growing - xx or xy. All of his blood making cells will be female. It is interesting and scary at the same time. We feel, however, that Jeffrey is going to be just fine throughout and that he will be a long term survivor!

Stephen and I watched a movie a couple of weekends ago called "Pay It Forward". We have decided to 'pay it forward' for everyone's kindness to us by sponsoring a bone marrow registry drive. If you have not received the information and would like to know more about it - please go to www.marrow.info

Thursday, March 14, 2002 at 10:19 AM (CST)

Being home is marvelous. Jeffrey and I got outside today and looked at the world around us. The weather has been rainy but today is so beautiful. We got muddy which felt so great. I guess with our next hospital visit around the corner, being muddy has new meaning. Tuesdays aspirate went as expected - Jeffrey was a trooper. The news came back though that Jeffrey still has leukemia cells in his marrow. They have not multiplied, but are still present at a level of 12%. What this means is that he is not in a full blown relapse but he is also not in a complete remission. His leukemia was resistant to the first treatment and the second treatment at least provided us with a "normal" cytogentics. We are still holding on to hope and faith that the normal cytogenetics are a good sign. I guess we are in the waiting place. This just confirms once again that we must go ahead with the bone marrow transplant. We remain faithful and optimistic that this step will provide us with a cure.

We want to once again thank our wonderful family and friends with your unconditional love and support through this time. I also want to say thank you to all who have provided dinner for us. With unforeseen visits to the doctor along with our regular visits, your meals have been greatly appreciated!

Monday, March 11, 2002 at 07:54 PM (CST)

Both Tasha and Stephen met with Dr. Kamani, the head of hematology and oncology at Children's Hospital. Dr. Kamani was forthright with details on the bone marrow transplant, pre-treatment and post-treatment regimen. He was optimistic - citing Jeffrey's age and the availability of a family donor (Meghan) as reasons to be optimistic. We felt good about the meeting, but the nerves are mounting. It's difficult to describe this feeling. We are living for today and preparing for the long road ahead. We pray for patience, healing, and that God's will be done.

At home, Jeffrey had a great playdate with Austin Coose and a fun day at pre-school. Angela and Meghan also had playdates after school. The family had dinner together tonight and we have all become a bit spoiled with this ritual.

Thursday, March 07, 2002 at 05:12 PM (CST)

Today was a busy day with Meghan going down to Children's Hospital for more bloodwork, a urinalysis, and a psych exam. They want to know that she has a good handle on what her part is being the donor. She was shy and only answered what they asked, but was polite. I think she did fine. She understands her part and will do well sharing her good bone marrow. We have fabulous news... Jeffrey's bone marrow aspirate from the last time (February 26) came back NORMAL!!! I am elated and relieved. We were so worried that we had not had success getting him into remission. With the cytogenetics being normal our chances of relapse go down a little. I am now hopeful that we can proceed to the next step with a clearer path. Thank you Lord! I am sorry that I have not updated this site for a week, but it has been busy and I really wanted some positive news to pass on. We have that now!

We are having a lot of fun together and acting fairly normal. Going to the doctor several times a week has become routine, but we are also seeing friends and going on new adventures.

Wednesday, February 27, 2002 at 08:49 PM (CST)

Let me just say that I have been blessed with great children! OK, so all moms say that but I feel blessed. Meghan had more blood drawn for her part as the donor and was a trooper! They had to draw 6 different vials to test for all sorts of antibodies, blood type, and infectious diseases. Jeffrey was also a trooper. He had not eaten all day and really kept his composure. He had his CBC which showed his infection fighting cells were rising (ANC = 1700) and his hemoglobin was also high. Unfortunately, the platelets were lower (20K). I was not alarmed because they assure me everytime that with the high doses of chemo that low platelets are not uncommon. Platelets are the last blood line to recover. Well, moms know best. When they looked under the microscope, they saw blasts in his marrow. They estimated about 16%. They tell me that they have seen this happen before. Maybe the body is in overdrive and producing a lot of immature cells that will disappear over time. I can only pray that they are right this time around. We will redo the bone marrow aspirate on the 12th of March and hope that the blasts have gone down to less that 5%. I really need everyone's prayers that we accomplish remission for him this time. We are still scheduled for the bone marrow transplant on March 28. That is the next step in the hierarchy of treatment. I hope that it is our last treatment and that we succeed in getting rid of those "bad bullies" forever!

Tuesday, February 26, 2002 at 09:50 AM (CST)

We have certainly been enjoying the weather., Jeffrey got to go outside and ride his bike which he loves. We will try to get some new pictures of the girls with the happy boy. Everyone is loving the normal "routine" in the household. Today, is the day that Meghan goes in for bloodwork and a physical so that she may do her part. I am a nervous wreck because this is probably the day that they will also check Jeffrey's bone marrow to see if the second round did the trick to put him into remission. I am again crossing my fingers and praying to anyone who will listen. Please keep us in your prayers!

Thursday February 21, 2002 5:04 PM CST

We are home and loving it! Mom, that's me was a bit nervous when I saw some bruises, but I guess it is to be expected. He is playing all over the house, all day long, and running outside. Well, I took him in for a CBC and he is still rising. His ANC is at 650 so that means that he is better able to fight off infection. Yipee! He is also at a great level for hemoglobin, and his platelets were at 30,000. I guess things are level and/or rising. I am so esctatic! Dr. Dinndorf did inform us that on March 18, Jeffrey will go back in and the following Thursday, Meghan will go in and do her part. She has moved it up by a week, but we still have a month to be together. I could not be more happy!

Tuesday February 19, 2002 9:42 AM CST

Jeffrey has almost completed his portfolio of his cute little insides. We have had a sonogram of his heart, two CT's, and EKG. We are just waiting to go down for a sonogram of his belly. It has been great that he has been well so that we may complete these pre-BMT tests. We are also waiting for our discharge papers. His ANC was 266 today indicating that we can go home this afternoon. He is excited and cannot wait to see his sisters. I am so excited to have him home. We will remain on isolation at home but I think that is better than here!! We will be home for a month before returning on the 25th of March to start the conditioning regiment before the actual transplant on the 4th of April. We will keep everyone updated on our progress through this website while at home so those out there fretting - stop! :)

Monday February 18, 2002 11:14 AM CST

Someone is playing a big joke on us. I think that God is laughing at us because Jeffrey's ANC did not go up today. We should know better than think that we can plan life. What is the saying- what we arrange God rearranges. Oh well, thank goodness it is not a fever that is keeping us here. We can hold on for a couple of more days. This is definitely a lesson of patience for us all. :)

Sunday February 17, 2002 8:59 AM CST

Jeffrey woke up after a good nights rest with a smile on his face. His ANC was 220 today which means it just keeps on rising. I was disappointed that he will not come home today, but he is well which is important. Angela, Meghan and I will go down as early as we can on Monday to help them break out of that joint. It will be a great day!

Saturday February 16, 2002 10:35 PM CST

Jeffrey, MomMom, PopPop and Daddy had a wonderful day together. Jeffrey is feeling good today and his ANC is at .....190. The doctors are talking about letting him come home tomorrow. I have every part of my body crossed and I am praying hard to have that come true. I have dusted off his train set and put the Digs and Rigs on the computer knowing that Jeffrey is going to make a beeline to play with these things. What fun!! He will still be neutropenic but it will be a true blessing to have us all together again!

Jeffrey has started and actually completed several of the tests required for the bone marrow transplant. Today he and Daddy actually got to leave the room and go down to the Donut Camera (CT). Jeffrey was a brave boy and I am sure smiled for the pictures. :)

Saturday February 16, 2002 9:47 AM CST

Jeffrey had his toughest day yesterday (Friday). He felt sick for most of the day and cried when Mommy and Daddy went out for their 10-year anniversary. A few minutes later, he was joking with Mom-Mom and Pop-Pop. He even made a rainbow train and described the contents of each car. We hung his picture on the wall with his other crafts. Jeffrey had a good night sleep and feels better today. We are undergoing a series of pre-bone marrow tests this week.

Tasha and Steve celebrated 10 years of marriage with a dinner and a concert at the Kennedy center. Thanks to the Wall family, Mom-mom and Pop-Pop and everyone else who made our evening get-a-way possible.

Thursday February 14, 2002 8:29 AM CST

Jeffrey's ANC was up in higher today. He was at 80. If we keep doing this than we will be home this weekend. His platelets were at 9K today, though. That is not too surprising since the platelets are the last to come back. I do have to question why he was up around 30k for so long. Those must have been some really great platelets that he got the last time.

Jeffrey is enjoying the mail that he is getting in his Valentine's Day mailbox. He is also having a great time giving out his cards. Everyone is so excited about getting a Valentine's from him which makes him tickled. HAPPY VALENTINE'S DAY!!!!

Wednesday February 13, 2002 9:52 AM CST

We had some great news. Jeffrey's ANC was 32 today and he had 39 monos. We are definitely on the upswing!! He also is not in need of any transfusions today. I was so excited to see that his platelets were stable. I do not know exactly what will transpire over the next few days regarding the platelets, but I thought the news we had was fabulous and quite promising.

I had predicted that we would be home next week and I just may be right. Yipee!!

Monday February 11, 2002 8:11 PM CST

Today was a good day. Jeffrey and Mommy enjoyed making a shape snowman, cutting out valentines, and looking at some new books. We did have some good news today. Jeffrey's ANC was zero but he has some monos coming back which are a precursor to the neutrophils. I think that we will see some movement on Thursday. I am hopeful that this will mean that next week we will return home. Dr. Dinndorf says the hope spring is eternal. I hope that my optimistic outlook helps his little body to recover!

Grammy and I went to a Free Concert at National Theatre. The lady (Suzanne) that had a jam session with Jeffrey over Christmas had a concert for Valentine's Day. It was a wonderful concert. We really enjoyed showing her our support. PaPa was the babysitter and I can find no evidence of mischief. There must have been a little knowing those two, but they covered up well. Jeffrey had a grand time with PaPa and I am sure that PaPa enjoyed the one on one without the mother hens ruining their time.:) Jeffrey even went to bed without a fuss tonight meaning that he was tired, but very happy.

Sunday February 10, 2002 11:28 AM CST

Jeffrey and Daddy had a wonderful weekend together. They played, read books, and watched some videos. We are still waiting for Jeffrey's ANC to move upwards. He reassures us everyday that he is going home. We agree that someday he will go home but it isn't soon enough in my book. I find the accomodations at the hospital to be less than pleasing these days. I cannot say that I am tired of the food, because neither Jeffrey nor I have been eating it. Jeffrey is the popcorn and cheesestick man. I would not be surprised if he turned into one of them. He eats at least two cheesesticks at every meal and two bags of popcorn daily. He even serves others cups of popcorn when they visit. He is very hospitable in the hospital.

Friday February 8, 2002 8:55 AM CST

Jeffrey had a great time hiding animals in the snow (aka rice) and throwing snow balls with Grammy and Papa ( styrofoam)on Thursday. After PaPa and Jeffrey exchanged some knuckle sandwiches, the playing began. :) It had been a fun-filled day with lots of visitors. The doctors stopped in to sample some popcorn, the clowns came in to be entertained by Jeffrey, and the nurses just came in to chat. It is great to see Jeffrey active and playing. His hemoglobin was low yesterday so we were a little listless until our transfusion. Not too listless, though. This child has energy to spare. After a whirlwind day, Jeffrey did react to his platelets and was a bit frightened. His blood pressure skyrocketed and he got the chills. With some Benadryl in his IV, he seemed to calm down in about 10 minutes. They stopped the transfusion and will culture it to make sure it was not contaminated. So much to think about. I am just grateful that his reaction was one that could be reversed fairly easily.

Thursday February 7, 2002 7:55 AM CST

Jeffrey woke up this morning talking about going to the beach and splashing in the waves. I think this room gives him very happy dreams.
MomMom mentioned a book that her class was reading about Heartprints. I agree with her message on the journal page saying that our family has been surrounded with heartprints. (please see her message) Thank you to all of the individuals that have contributed to the many heartprints that have encircled us. We love each and every one of them!

Jeffrey needs platelets and packed RBC today. His platelets were at 6K today. We have been looking at books and watching shows so far this morning. He is so prone to hitting his head, I am going to have to pull out every toy that can be done sitting down. I am so thankful that are days continue to be fever free and full of energy. This period is such a gift. We know that we have been blessed and continue to thank the Lord that Jeffrey has done so well. Keep up those wonderful prayers.

Tuesday February 5, 2002 3:21 PM CST

I arrived today after a day at home with the girls to find out that Jeffrey was fever free and unhooked from the iv. He is on the acyclovir and ceftazadime but only requires fluid during the night. We are making progress. He is in great spirits and full of energy even though he is still severely neutropenic (ANC 0). It is amazing and wonderful. I keep praying that he will return to a normal anc soon!

MomMom and PopPop came for a wonderful visit on Monday. Jeffrey made an octopus and built with some blocks. He then had a sleepover with Grammy. They raced cars on their new road made of sticky notes, ate popcorn, snuggled and served ice cream cones (fuzzy balls) to all of the doctors
(compliments of MomMom). What fun!

Sunday February 3, 2002 10:14 AM CST

Jeffrey had three low grade fevers yesterday so we are now on two different antibiotics, had blood cultures done, and have a rash. Oh well, he is in great spirits and we are having a great weekend together. He needed blood yesterday but seems to be in good shape today.

We have had some new nurses the past couple of days and they too have fallen in love with this little guy. He has asked to go home several times this time around but seems content with the answers that we give him. He knows that we are here to get rid of the "bad bullies" and that we need to stay to keep him as healthy as possible. Talking about being healthy, it seems that everyone is over the bug in the Virostek house so we get to see one another today. Both Jeffrey and I are so excited that they are coming down. Meghan and Angela are bringing a birthday cake so that we can celebrate my birthday. I do not know who is more excited me or the children.

Friday February 1, 2002 2:42 PM CST

I am having a frustrating day with this computer. I keep losing my connection. Jeffrey and I have had a good day so far. My dad came down to wish me a happy birthday and bring us some yummy cupcakes. Thank you for all of the wonderful birthday wishes from everyone!

Jeffrey remains fever free with an ANC of 6. We did receive platelets today because our counts were at 9K. Last night, Jeffrey had to be hooked up to fluids and will continue on them due to his blood pressure dropping. I thought he was drinking fine, but the high doses of acyclovir can cause kidney damage and he was getting dehydrated. Good thing for vitals every 4 hours. He remains happy and active. Today we have been relaxing a bit more since he has been hooked up.

It seems that the flu bug has hit the Virostek household. Unfortunately, we must ban everyone for 48 hours until we know that all those who are going to get this nasty bug get it and get it out of their system. I thank MomMom and PopPop who have been taking care of Angela and Meghan. I am sorry, though, that they too have gotten the bug. Who will get it next - Daddy or Grammy?!

Wednesday January 30, 2002 8:29 PM CST

Today our worry was all of the times that Jeffrey hit his head. He is in a very delicate area right now with low platelets. I worry every time that he bangs his head that it is going to cause some hemorraging, but so far so good. His transfusion come more frequently during this time so we are probably due for another platelet transfusion in the next two days. I must somehow keep him occupied without him up and around too much. His latest amusement has been running from the from window to the back window. I guess he is keeping his lungs clear. We have also been putting up window decorations, taking them down and putting them back up again. I am so glad that he loves to amuse himself with very simple tasks. The other favorite activities have been putting puzzles together and playing "swat the golf balls" around the room. He has been using a foam pistol as his golf club. He has no idea that the object is a gun. I think that is great!
Jeffrey is not on any medicines right now that should cause cravings, but he has been craving fries smothered in ketchup. He even went to bed tonight asking if we can have french fries for breakfast along with a hot dog and a hamburger. I am glad he likes the food. His other favorite has been cheese and crackers. Grammy stayed with him for dinner tonight so that I could go out with my sister for a change of pace. They dined on Pringles, cheese and crackers, and popsicles. Sounds like a three year old's dream dinner.
Jeffrey has been worried about his sister, Meghan, today. She has the stomach flu and was "spitting up" a lot. He was so concerned that she did not feel well. Thank goodness for MomMom who made sure Meghan was well taken care of today. I wanted to be home to take care of my Meghan but knew that I could not. We cannot afford to get sick around here. It is bad enough when Jeffrey's own body turns on itself much less a nasty virus to invade our system.
My motto still remains "Remember that this came to pass not to stay." Any positive thoughts go a long way. We also say "Let go, Let God".

Monday January 28, 2002 5:22 PM CST

So far we remain fever free. We are watching Jeffrey closely since his ANC is 128. We know that the fevers will come but each day that we remain fever free is great! The doctors are beginning to talk about the bone marrow transplant. It looks like that will happpen in the beginning of March. Our next discussion will involve the pro and cons of total body radiation along with the drug therapy. His leukemia is being considered a resistent strain so we will probably do both the radiation and drug therapy, but we shall cross that bridge when we come to it. First, we must remain upbeat that he is eating and is active. We hope to be here only 4 weeks, but this time we will not take the GCSF shots. This may add a few days to a week on to our stay. The thinking is that maybe the cell stimulating shots may have added to the growth of the leukemia cells this past time. We need to pray that his body goes into a full remission this time. We really need for him to be clean before the BMT. We will progress regardless, but obviously the odds are greater for relapse if he is not clean of the blasts before we proceed. Please call on all of your guardian angels during this time.

Thank you to all of those of you who have come to donate blood for Jeffrey. He is going to be needing more transfusions in the near future so we are fortunate that he has a reserve that he can tap into down in the blood bank.

Sunday January 27, 2002 11:28 AM CST

Jeffrey desperately needed platelets yesterday with his counts dropping to an all time low of 4000. This is quite dangerous, but the angels must have carried him through until the platelets arrived. He also received red blood cells.

Jeffrey enjoyed a visit from MomMom and PopPop. They had brought a box of rice to play with which he loved. When I called this morning, Jeffrey was watching a beach video. He is in good spirits. His ANC is below 250, so we expect him to get a fever any minute as his ANC goes to zero. We don't like him being sick, but at least we know what to expect. He does bounce back and when he does it is glorious!

Friday January 25, 2002 7:46 AM CST

We have embarked on an underwater adventure. The room that Jeffrey has been put into is painted like an underwater sea scene. We are loving it!

We started chemo on Thursday and all is well so far. His appetite dropped this morning, but that is to be expected. We also are back to doing the eyedrops every 2 hours. He does well with them during the day but does not like to be awakened in the middle of the night. I do not blame him.

We have some fabulous news... Meghan is a PERFECT match. We are feeling very good about this knowing that we have been very fortunate. The bone marrow transplant will be the next step that we take after another intense round of chemo and possible radiation. Our chances of him not rejecting the transplant have been greatly reduced with Meghan being a match. We are talking with the girls about this news. We must be upbeat that this will help Jeffrey feel better but not put the emphasis on the greater impact that it will have on his future health. The realization to Meghan will come at a later date as to what impact she has had on her brother's life.
This news was a needed boast to our family.
Jeffrey would like to thank the treat bag elves for the fun and exciting gifts. I would like to thank everyone who has brought our family such wonderful meals. I even got to eat a few.

Wednesday January 23, 2002 10:42 AM CST

I have now crossed the line of complete exhaustion! Being a day nurse, night nurse, full time mommy, and wife has taken its toll. I actually fell asleep standing up last night! Luckily, I did not fall down on my face and embarass myself. The iv meds are suppose to take 1 hour and they are taking twice as long. At midnight, my body just does not want to be awake to watch the slow drip of the iv. Today I put new tubing on and it is now taking less time. Thank goodness! Maybe tonight I can actually be in bed before 1 am.

Jeffrey is having another good day. He is active and eating well. Tomorrow is coming much too soon, though! (See our new picture of Jeffrey writing his first piano concerto.)

Tuesday January 22, 2002 8:45 PM CST

Jeffrey had a clinic visit today so off to DC we went. Somehow though, we made a wrong turn and were at the zoo. Oh what an adventure it was. We saw a baby gorilla, baby elephant, baby tiger , a bison, pandas, orangutans, and even some bats. It was the perfect day at the zoo! Then off to the doctor we go... only to find out that they missed us but not that much. There had been some miscommunication and they did not really want us to be seen today and with the chicken pox and everything, they escorted us right out the door. Well, we have been kicked out of better places than that! Jeffrey's white blood cells were low but he still had a good ANC so we are great! His platelets were also at 44,000. I guess the transfusion took on Saturday. Thursday is still our day to check into the hospital. We look forward to your messages while we are there!

Monday January 21, 2002 11:15 AM CST

We came home yesterday and started to begin a few days of normalcy at home. Jeffrey and the girls immediately wanted to go outside to explore the snow. We had a great time. We had a snowball fight and made two snowmen (see new pictures). Throughout the day, we gave thanks for being together.

Saturday January 19, 2002 4:32 PM CST

Jeffrey has had another good day at the hospital. Stephen and Jeffrey had kept each other company. I will go tomorrow morning to pick them up and bring them home to the snow. Please keep your fingers crossed that the snow is still on the grass so that Jeffrey may enjoy it.

His platelets were at 9000 (down from the 20,000 on Thursday) and his hemoglobin was at 7.0 so he will need a platelet and a packed red blood cell transfusion today. We know that he is going to need transfusion so if anyone is A- please donate at Children's Hospital. Whole blood will last 1 month and platelets last 5 days. If anyone needs information regarding where and how to go about donating, please feel free to e-mail us! He has been receiving the anti-viral medication to combat the chicken pox, but now they are not so sure they are the chicken pox. Oh well, I think that we must just continue on the course that we have started. My thought is that the more cautious we are the better.

Please continue to pray that Jeffrey is fever free and that the Lord may watch over all of his little ones. We have some very sick children in the hospital who need our prayers. One little girl is going to be three in March. She has been battling a brain tumor for two years now. There is also a 15 month old little boy who has AML and an 8 year old who has ALL. The 8 year old little girl has relapsed on treatment and awaits a bone marrow transplant. The unfortunate news is that it does not look like she is going to make it. Please lift her and her family up in prayer. They are battling some hard and painful decisions and really need the help of our Lord.

Friday January 18, 2002 6:06 PM CST

Today we have been dealt yet another surprise. It seems that Jeffrey's chicken pox vaccination has been reactivated and so he is being treated by iv for the virus. He came down with a few spots this morning. They (the doctors) have been thoughtful and told us after our 11 pm dose Saturday night we can go home until Thursday. I get to learn how to administer the meds through the iv on Sunday so that it is possible to have this little vacation before the long 6 weeks start again. We continue to pray that he does not get a fever before next Thursday or we will be right back in here.

Thursday January 17, 2002 3:16 PM CST

I have decided that being a child is great. You can be naive and it is bliss. Today has been a great day for Jeffrey. He is unaware that his cancer is in relapse. I want to cry! The cytogenetics did not come back reversed. What that means is that we decreased the blasts to 5% but that we must now intensify his chemotherapy to get those chromosomes back to normal. As you can imagine, we are deflated. We are determined to get through this and will with a strong fighting spirit and with a whole lot of faith in God.

I am going to rush off now to go back with our little guy. We could be home for a few days before we come back for the long haul. Pray that the ARA-C does not cause fevers and that we can come home for a couple of days. There is always a silver lining!

January 15, 2002, 10:27 p.m.

Today was our big day with Jeffrey going in for his CBC and Meghan going for her bloodwork to determine if she is indeed a match. We are confident that she is but we still wait on eggshells for the results. Meghan was a brave little girl and deserves a high five for her patience and bravery! We are so very proud of her. We hope to have results on Friday.

Jeffrey's news isn't so rosy. His platelets did not go up but rather down. The AML specialist informed me that when they say one is in remission that means that they have less that 5% blasts. He is in remission with 5% blasts but the platelets have not recovered making us wonder now what do we do. We will return to Children's on Thursday and at that time will be told if we go with the same protocol or if we must now intensify his chemotherapy. The "specialists" are going to talk and determine the course we now take. This leaves us with many unanswered questions and a pit in our stomachs. It was so easy to go about our business at home thinking that there was nothing wrong. He has had so much energy and felt so well. We appreciate the days at home that we had and return for the inpatient treatment reluctantly. We ask that each of you continues to pray that all goes well and that Jeffrey will be healed. The power of prayer is so powerful and we definitely rely on it!

Thank you for your thoughts, love and prayers. We know that that is what gets us through these rough spots.

Friday, January 11, 2002 at 07:25 AM (CST)

We have had some questions regarding Jeffrey's remission so I thought I would address it as best as I can. The goal of the induction period was to put Jeffrey into remission. It however does not mean that the blasts are 100% gone. If we were to stop at this point we could be guaranteed that the leukemia would come back full force. Remission at this point means that there are no visible blasts seen in the bone marrow. We are waiting to see if the translocation of markers on the chromosomes are still there. None the less, this is great news and means we are on the right path of destroying and eliminating those "bad bullies". Next Tuesday, January 15, is the day that we take Meghan and Jeffrey in for additional testing for the bone marrow match. Actually, Jeffrey needs a pre-chemo physical and Meghan gets the pokes. Shh! She is very worried so we are laying low regarding this issue. She was already determined to be a preliminary match so hopefully this will confirm everything for us. Keep your fingers crossed!

Wednesday, January 09, 2002 at 01:53 PM (CST)

I thought you all would like to see a happy boy on his birthday.

All is great around here.

Tuesday, January 08, 2002 at 08:14 PM (CST)

IT LOOKS LIKE WE DID IT! WE ARE IN REMISSION!!!!

Jeffrey had his bone marrow aspirate today at Children's Hospital. He was a very brave little boy and so was his mommy. I was amazed again how this little person can go through such horrible procedures and come out smiling. Thank you Lord for strength and good medicines that make us forget our pain!

We were told that we would be returning to
Children's for our next phase of chemotherapy on Monday, January 14th. This has been postponed by a few days because Jeffrey's platelets still have not recovered completely. His counts were 22,000 today and they need to be above 100,000. The doctor was optimistic, though. He thought that probably these platelets were all of Jeffrey's so his counts should be up next week. We will go in next Tuesday and find out the true date.
Please keep your fingers crossed and the prayers coming. We need to be fever free so that we can stay home, and the platelets to go up so we know he is finally making them on his own. I guess that is a catch twenty-two. We have to go back regardless so we may as well as pray for all the right things to happen.

We are going to try to have a great family weekend and hope that you all do too!
Thank you for your prayers.

Sunday, January 06, 2002 at 08:02 AM (CST)

HAPPY BIRTHDAY JEFFREY!

We woke up this morning with BIG smiles on our faces. Jeffrey turned 3 years old today and he is feeling so big & proud. He has been sleeping well since we got home from the hospital.

After eating breakfast (beer pancakes), he went down in the basement to find a wonderful present - his own train set! (see the new picture) He knew exactly what to do with the train set. Meghan helped him explore all the pieces, bridges, the turnstyle, tunnels, etc.

Gotta go now. We need to prepare for our family brunch & birthday party. Have a great day.

Saturday, January 05, 2002 at 05:01 PM (CST)

We have another great day at home. Jeffrey has been enjoying playing with Daddy's trains which makes Stephen so happy. We all had a lazy Saturday morning which turned into a rather lazy day. It was just so nice for all of us to hang out. Jeffrey is getting excited about his birthday. He woke up this morning asking, " One more night to sleep in my bed and then my birthday?" He did decide on the Clifford theme. We have the plates, napkins, cups, and even the candles that he requested. Baskin Robbins couldn't put Clifford on the cake so the candles will do the trick. Happy days to all of you! We know that we are going to have a great Sunday around here!

Friday, January 04, 2002 at 01:34 PM (CST)

We are home and loving it. I am still digging out from underneath all of the wonderful gifts. I cannot believe that his birthday is on Sunday and we will have more to find a place for. What is a mother to do? Jeffrey is feeling well today with a lot of energy. We had a good night sleep last night. He only came in twice to see mommy, but slept on Daddy's pillow. I really do not think Stephen cared that Jeffrey was hogging his pillow. It is just so glorious that we are a family of 5 for a few days.

Jeffrey has a rash today all over his body. The home health care nurse said it looked like a drug reaction, but we are not on any meds right now. I guess he has a virus. What are we going to do?!! I am watching him for fevers but he seems fine. I wouldn't worry if it were any other child, but why Jeffrey? He is the one who supposedly hasn't been exposed to anyone. Hah!You go to the hospital to get well and you leave with a rash - go figure!

Tuesday is the day that we find out if he is in remission. Please keep the prayers and positive thoughts coming out way. We need to get over this next mountain before we can take another step. We know that the Lord is with us and that Jeffrey will get through this, but you still worry. Thank you for keeping us in your daily thoughts and prayers!

Thursday, January 03, 2002 at 04:03 PM (CST)

You cannot believe the look on the girls faces when they came home and found that Jeffrey was home. You could not have bottled their enthusiasm because it would have exploded like a champagne cork on New Year's Eve. This being said, Jeffrey did not take a nap today because of his own excitement. He has rediscovered the world and his own home. We are thrilled with his return. We must continue to be careful but for now we are as normal as possible- together as a family after 36 days!

Wednesday, January 02, 2002 at 04:25 PM (CST)

My enthusiasm is enormous today. Jeffrey has been fever free for over 24 hours, is eating and drinking and keeping it all down. He has also been in his normal mode. I have a feeling that our days here at this luxurious resort are numbered. yipee!! I have updated his pictures for all to see. To show how grateful we are for the cards, gifts, prayers, and hugs, we thought Jeffrey should show his gratitude.
Stephen and I also say thank you again and again! I am also enclosing a picture of his new hairdo!!

Tuesday, January 01, 2002 at 04:23 PM (CST)

Jeffrey continues to get a bit better each day. His ANC is above 1000 but unfortunately, he continues to have some fevers and continues to have some problems with his stomach. I am so excited for him to come home but at this point it is looking a bit unrealistic. As you all know, a lot can change over night so we will continue to pray and keep our fingers crossed that he is feeling better soon! Angela, Meghan and Mommy spent New Year's Eve at Grammy and Papa's. We dined on Chinese, played with gooze and did a lot of laughing. The children were in bed at 10pm and Tasha shortly after. I have to get my sleep while I can. Tuesday, Angela, Meghan and Mommy went on a long adventure walk with the Therouxs. We had a blast! After lunch, a lot of conversation, and some more playing we came down to see Jeffrey who is heavily medicated on Benadryl. As you can imagine- he is sleeping very soundly. The girls are patiently waiting for him to awaken so that they may play. I hope for their sake that is soon!

Monday, December 31, 2001 at 05:14 PM (CST)

If 272 was not exciting enough for you all try 670!! Yeah baby! We knew he could do it. The other exciting news is that Meghan was a preliminary match for the bone marrow transplant. 2001 has ended with a bang!

We are working on getting Jeffrey off some of the medicines and the nutritional iv. If he remains fever free, stops vomiting, and starts eating we will get home this weekend. I just know that it is going to happen!

HAPPY NEW YEAR!!

Sunday, December 30, 2001 at 10:36 AM (CST)

His ANC was 272 today! Rah Rah Rah!!! Maybe we will actually be home for his birthday. This also means that maybe we can start taking him off some of these medicines that he is currently taking. I cannot express how excited I feel about the prospect of having the family all together in our own home. It may be for only a week, but it will certainly be the best week of my current days!
I hope each of you has a blessed day!
Tasha

Saturday, December 29, 2001 at 04:08 PM (CST)

Our ANC remained up today. It is at 32! Our bouts of nausea and the vomiting have been a little less today. Unfortunately, his platelets are down so he has two bad blood blisters in his eyes. I don't think that they hurt him. Thank goodness. He has had enough pain and yucky feelings in the past week to last him a long time. We think that he had a reaction to one of the meds that he was on so he has had a rash all over his body. He also has been changed to a new antifungal that does not have the same bad side effects as the amphotericin. He is now on ambisome which is not suppose to eat up his potassium as much as the amphoericin, but for some reason he is still requiring a potassium bolus. As his numbers climb up many of these "problems" should correct themselves. I hope that his eating improves soon because he is not eating at all. I don't know how they will ever wean him off the nutritional supplements. Oh goodness, listen to me. As my button says-"Remember that it came to pass. It did not come to stay." We must count our blessings and be thankful that he ate for so long.

Friday, December 28, 2001 at 01:44 PM (CST)

We have reason to celebrate today. Our ANC was at 36 and our fevers have been less frequent. We must celebrate the positives!

Jeffrey is having a bad hair day-his hair is sticking straight up. Yes, you saw that correctly, his hair is indeed beginning to grow back. No, it is not purple like I thought.

Jeffrey continues to feel yucky, but I think he is feeling a little better each day. We all remain upbeat and smile often. It is the only way to be. We love you all.

Thursday, December 27, 2001 at 03:55 PM (CST)

Life is not easy when you are feeling yucky, but Jeffrey really keeps on a happy face. We are still battling fevers but the CT scan showed nothing abnormal. That is a good sign. As much as I want there to be a definite reason for all of this that we can fix and go on, this test was a positive. I wasn't sure how Jeffrey would do through the scan but, as always, he was a champ. He laid there as still as can be and even waved at the scan once. It was really rather cute.
Other than our journey downstairs wearing goofy blue masks, we have snuggled, snuggled, and snuggled some more today. Jeffrey says hello to everyone. He cannot wait to get home and play with all of his new toys from Christmas, although he finds great comfort in this little room at the hospital.
Ciao!

Tuesday, December 25, 2001 at 03:24 PM (CST)

Merry Christmas to One and All!

Q. What does a can of Pringles, a double-decker catheter, a Grant Hill bobble-head doll, and a Nigerian Catholic priest have in common?

A. Each of them was part of Stephen and Jeffrey’s Christmas celebration for 2001.

Despite an “on-again-off-again” sickness, Jeffrey and I established our own traditions this Christmas. We flattened out the sofa bed on Christmas eve and “feasted” on Pringles and orange soda Pop. The lights on our Christmas tree shone brightly and made us feel a bit more Christmas-like. We sang some yuletide carols and gave thanks to God for our wonderful parents, brothers and sisters, and our incredibly-generous friends. Today’s gifts came from Florida – we received a terrific “Bob the Builder” puzzle from Ricky Becker’s family and a Grant Hill (NBA’s Orlando Magic) poster, a signed picture, and a silly bobble-head doll. (Thanks Grant, we hope that your ankle heals real soon!)

The double-decker catheter became necessary when Jeffrey’s platelets and red blood cells dropped again. We call the platelets our “spaghetti” and the red blood cells our “meatballs.” Jeffrey is also receiving lipids (aka “Vanilla shake”), in addition to fluids and the usual cocktail of prescription med’s.

Thanks to Grandma and Grandpa Virostek, Stephen was able to go to Catholic mass at Children’s Hospital. The celebrant was Father Dominic from Nigeria. After mass, Father Dominic came back to our room and said a beautiful prayer of healing for Jeffrey. When he asked Jeffrey if he wanted anything, Jeffrey whispered “Holy Water!” Mom-Mom obliged him with her Holy Water from Lourdes. Father Dominic has spent only 6 months in the DC area and we look forward to seeing him again.

We are taking time today to appreciate all the little blessings in our life. We hope that you will do the same.

Sunday, December 23, 2001 at 01:39 PM (CST)

Jeffrey developed a fever yesterday afternoon and was introduced to a nasty new drug called amphoteracyn. It gave him "the shakes" and made him naseaus (spell-checker is not available on this site). He received more medicines in order to make him feel better. It makes me wonder, "just how man drugs can this little body handle?" He seemed to respond pretty well, until this morning when had an upset stomach. He is not eating or drinking today.

Fortunately, our days at Children's Hospital have been much better than this. The lesson of today is "count your blessings, no matter how small they might seem."

Sunday, December 23, 2001 at 01:06 PM (CST)

We figured that there would be glitches in the road, but we were unprepared when Jeffrey got another fever and had to change antifungal medicines. The new medicine gave him violent shakes and he had to be given demerol and benadryl to counteract the effects of the new meds. He seems to be back on track after that scary episode. You never want your little one to be scared or hurt. It is so hard as a parent to want to protect your child and be unable to do so. I have said before that we must count our blessings everyday. I am thankful for good medicines that help him get through the bumps in the road, and I am thankful that we are able to still hold him and make him feel safe. I still believe that Jeffrey has angels around him to help lift him up through this. We thank you for your prayers and your kind words to us all. We thank our lucky stars that each of you have come into our lives. Merry Christmas and a very Happy New Year to all of you.

Friday, December 21, 2001 at 07:25 AM (CST)

Never a dull moment around here. Jeffrey had a jam session with the resident muscian after breakfast on thursday. He had the doctors dancing in the aisles! We even have a recording to prove his new fame.
I left to see Angela and Meghan to return only to find out that Jeffrey had also been a race car driver during the day. I guess one of the volunteers came in to play cards with him to keep him calm while Grammy and Jeffrey waited for Jeffrey's platelets to arrive. I guess calm went out the window and the boys got down on the floor and raced cars. They even used the lunch tray as a ramp. Guys- they never grow up. I can only say that Jeffrey is never bored in this room.
We are up and cheery today. Today is our bath day and the day that I get to be his nurse. I have to change his dressing which is very easy, but he always panics that I will hurt him. Poor litle guy! We are also anxiously awaiting his report on his ANC. Maybe today he will have climbed just a little. Oh, one can hope! More later as our day unfolds.

Wednesday, December 19, 2001 at 02:24 PM (CST)

Our ANC still remains at zero but the doctors say not to fret. They assure me that his numbers will begin to crawl up soon. I can only hope.
Our question of the day is "will my hair grow back?". I show him what he looks like in the mirror and continue to tease him that his hair will grow back purple or maybe even with polka dots. He laughs hysterically and tells me I am silly. "It is going to grow back just like Daddy's" is his response. I am glad that he is taking all of this so well.
I went today to have my HLA testing to see if there is some slim chance that I will match Jeffrey. We think that maybe by the end of the week we will have the preliminary results from the girls. Keep your fingers crossed that one of the them is a match. It certainly would be another blessing if one of them was.
Mom Mom and PopPop came or a visit today and brought Jeffrey a snow globe. He has been fascinated with how it snows on Baby Jesus. What fun we can have with such simple objects! I am so glad that he is so easily entertained since he has not left this room for 22 days. It is so hard to believe that we have been here so long but then again I think we all feel it. There are several of us that are here as regulars. You build up some relationships with everyone. Jeffrey has made some Christmas trees for our nurse, social worker, and the charge nurse. We have also fallen in love with the fellow that visits us everyday not to mention the nurse practioner who plays flashlight games with Jeffrey. Really, our care has been good and the people are very kind.
We will try to write again tomorrow.

Monday, December 17, 2001 at 07:32 PM (CST)

Today has been another good day. We have painted, played with toys, drawn pictures, watched some videos and we even saw Daddy, Angela, Meghan and Grammy. My sisters really love me because they came down to have a poke to see if they can share with me some of their bone marrow. Aren't they swell?!

I asked a very profound question today. I asked why Mickey, my dog friend, sheds but never loses his hair? My hair is really coming out, but Mommy told me that it will grow back. she even said that maybe it would come back orange or purple. Isn't she silly? She has shown me what I look like in the mirror, and we both think I am still handsome.

Mommy says that she isn't getting her hopes up , but I can tell she is. The doctors mentioned that maybe I will be going home around my birthday. Wouldn't it be great if I could have a huge Bob the Builder party? I think that I want it to be a Clifford party, but a party is a party. My friend Jaimie turned 3 today and she had a pink cake. I want her to come to my house and eat cake with me.

Monday, December 17, 2001 at 07:45 AM (CST)

Mommy arrived to see that Jeffrey and Daddy had had a great weekend together. As I arrived, Jeffrey was curious to see what I had brought him, but before I could answer, he told me to wash my hands. He is constantly reminding everyone of the rules of his "pad".

We are being festive today with bells around our necks and cute socks on our toes. Jeffrey s ready to celebrate! He even has on his Christmas pajamas.

Sunday, December 16, 2001 at 06:42 PM (CST)

Another good day today. Santa came to see us and brought us a stuffed Peguin (see new picture). Daddy and Jeffrey painted four timeless masterpieces (ready for the Louvre!) We raced our cars again and took turns sending each other chips and orange slides on the back of the cars.

Jeffrey also received a play stethescope, because he has such a fascination with medical supplies and instruments.

Sunday, December 16, 2001 at 06:48 AM (CST)

Weekend's aren’t quite the same in the Hospital. They are much lazier and uneventful. Jeffrey’s fever subsided on Saturday morning and he was much happier. Stephen and Jeffrey glued ornaments on a paper Christmas tree and played with our newest toys - matchbox racing cars. Jeffrey likes the motorcycle best. Isn’t it amazing how all little boys enjoy racing and crashing cars into one another? Must be something in our DNA.

Friday night was a difficult night. Between blood samples, medicines and potty breaks, our sleep must have been interrupted no less than 14 times. Most nights have fewer interruptions.

We had our 1st family dinner at Children’s Hospital last night. Tasha, Angela, and Meghan joined us for a pasta & ham dinner (thank you Mom Virostek). It was wonderful to have all five of us together again. After the girls investigated Jeffrey’s new toys, we watched a “Peanuts” video, which tries to explain some of the medical and social aspects of leukemia. One of those aspects is losing your hair – which is slowly happening to Jeffrey. If anyone would like to borrow the video for your children, please let us know.

Sunday, December 16, 2001 at 06:48 AM (CST)

Friday, December 14, 2001 at 09:05 PM (CST)

We are overwhelmed by everyone's generosity. Please forgive us for not personally thanking each of you who have sent your love, gifts, prayers, and support. We thank you all!

We have completed the change of command and Jeffrey seemed happy when Mommy left. Not that he wanted to see me go or anything, but his snuggle partner, Daddy, was there for their sleepover and he was excited.

Jeffrey continues to battle the fever but tylenol and sleep have helped to bring them down. Tonight will be a tough night because blood draws and antibiotics will go throughout the night. Ugh! I am sure that the boys will both be tired tomorrow!

Friday, December 14, 2001 at 03:36 PM (CST)

Friday, December 14, 2001 at 02:32 PM (CST)

Well, we knew we couldn't hide from the big ugly monster-fevers. We came down with our first fever at noon so the whirlwind of medication, x-rays, and blood tests have started. Jeffrey was very sad and refused to admit that he had a fever, but the tylenol has helped and we are now just spending the afternoon watching Lion King. PaPa and Grammy brought him some twizzlers so that helped too!

Friday, December 14, 2001 at 10:25 AM (CST)

Today we are not feeling up to par. His ANC number is zero so the fever is probably not far behind. Well,even when Jeffrey is not up to speed, he remains pleasant to everyone around. What a super hero!

Angela and Meghan are off for an adventure at their cousins' house. It will give Stephen and I a chance to spend some time with each other. Even if our time is at the luxurious Children's Hospital, it will be wonderful to see one another.

Thursday, December 13, 2001 at 10:31 PM (CST)

Today was a busy day. Jeffrey is finally sleeping after a long day. We had many people in and out of our room. Unfortunately, many were not visitors, but technicians, nurses, doctors, repairmen, and housekeeping. How anyone rests here is beyond me. I have thought about putting a DO NOT ENTER sign up. I need to stand out side our door after lights out and tell people to shut up too. This place is so loud.
Enough complaining! We did have some very important visitors today. Auntie and Todd came to see us and Jeffrey was in a very lively mood. I have not seen him this excited in weeks. They brought a Curious George that laughs and he introduced his nurse to him tonight. He thinks it is so funny.
I have decided that miracles do happen and that Jeffrey's response to his chemo thus far is a miracle granted. I know by seeing him and his outlook along with his physical reaction to this that our prayers are being answered!

Tomorrow,Jeffrey will begin to take shots to stimulate the growth of healthy cells. We will remain here until his numbers are at a reasonable level to go home for a bit until we do this again. Right now our blood counts are almost at ZERO for white blood cells. He cannot fight off any germs so we are fairly certain that he will get a fever soon. We are all on alert for those nasty fevers to surface, but until then we play, snuggle, giggle, pray, read, watch videos, and make silly noises. We could only be better if we were at home.

Thursday, December 13, 2001 at 11:03 AM (CST)

We have gotten through our round of chemo without any hitches. We are counting our blessings! The doctors have said that we should fully intend for him to get very sick soon, but I just can't be so pessimistic. He has not been textbook yet, so why now?

We have enjoyed more visits from the clowns and Jeffrey made music with the muscian today. I took a picture of him with the big drum. He loves to play percussion.

We are having some difficulty with our computer, but hopefully that will be fixed soon. Jeffrey loves hearing about who has written to him and hearing the jokes. Thank you and keep 'em coming!

We will write again soon.

Tuesday, December 11, 2001 at 11:20 AM (CST)

Jeffrey was a bit restless last night, but told the nurse as she was listening to him at 4 am that it was goldfish in his tummy that she heard. As you can imagine, this story traveled throughout the floor. He is a great patient and the nurses and doctors are ready to claim him as their own. I will keep him, though! His attitude has been great and energy level normal for the most part. His appetite this time has remained normal as well. He still prefers whatever mommy or daddy is eating over what is on his tray. The grass is always greener on someone else's plate. We have enjoyed more videos, crafts, and playing with our new squishy water elephant. (Thank you to the families that have contributed to our daily treasures!)

We have hung our stockings on the chimney with care (aka slow poke- otherwise known as an iv pole) and even put up some candy canes as decoration. Jeffrey's is half eaten but it still makes for a great decoration.

We hope our days continue to be this positive. Keep the kind words and jokes coming ^_^. Everyone around here loves to hear them.

Saturday, December 08, 2001 at 06:12 PM (CST)

Jeffrey got a new do today. He looks fab!

Saturday, December 08, 2001 at 10:39 AM (CST)

We want to thank the Santa elves that appeared at our house today. Your generosity is greatly appreciated!! We cannot wait to see the finished project. Ho!Ho!Ho! and Merry Christmas.

Saturday, December 08, 2001 at 10:04 AM (CST)

Nothing much to report. Jeffrey is hanging out with Daddy today and they are just trying to pass the time while they wait for the blood transfusions. Jeffrey needs packed red blood cells and platelets today.

Friday, December 07, 2001 at 11:48 AM (CST)

We wokeup again in a happy mood. Maybe it was the picnic we had last night with goldfish and the Christmas tree was our only light. It was a God moment if I have known one. We have decorated our room with Santa, snowflakes, and lots of pictures. Jeffrey just loves it. Our numbers remained the same today so no transfusions yet. They will probably come this weekend.

Thank you to all who have brought meals this week. I have heard that they are delicious. I was spoiled this week, so don't feel sorry for me. I had a wonderful lunch brought in by Mary and a delicious vegetable lasagna! I could get as big as a house with treatment like this.

Thursday, December 06, 2001 at 11:48 AM (CST)

Life around here is never dull. We have had a muscian play music with us. We got the beat! Then as she left, two clowns walked in. Yes, they were doctors but really... after those two clowns left two more came in. One of them played America on a saw. He said that a violin was just too hard to play. They were so silly and they made us laugh. They do say that laughter is good for the soul and it sure is!

We are looking at some transfusions as our numbers are going down. At least, at this hospital the transfusions go in over a matter of minutes rather than hours. We count every little blessing. Many of you have asked how you can direct donate to Jeffrey. My recommendation is just give platelets and blood at either the Red Cross or here at Children's if you want. It really does not matter if the blood is not going directly to Jeffrey just as long as we keep replenishing the blood banks supply so that when any of these children need it they can get it. It is hard to know exactly when he will need the blood.
FYI: Children's Hospital uses their own blood bank and then the Red Cross blood bank in Baltimore. Jeffrey is A-.

Thursday, December 06, 2001 at 10:15 AM (CST)

If our days continue like this, we will be out in no time. Jeffrey is running around his room, eating bagels,lollipops, drinking everything under the sun and being silly with anyone who will allow it. We are our usual self again today. It sure makes it nice. I cannot believe that the picture did not come out on the website but we will try again.
We love all of your messages. Keep them coming!!

Wednesday, December 05, 2001 at 01:11 PM (CST)

Today has been another wonderful day. We have played, eaten and gotten into mischief. We also had a very important visitor. Laura Bush, Santa and the First Dog came in for a visit. Jeffrey will always remember that Santa and the dog came, but my highlight was shaking hands with the First Lady. She is lovely!

We are doing great, but our numbers are getting lower each day. When they get too low we will no longer be able to have any visitors. That will be hard on us all as we love the company. Jeffrey waves to all the people in the hall as they pass, so his list of friends is growing. He remains our little trooper and is upbeat 95% of the time. Sunday is the day we start our next round of chemo. No meds for the next few days! Yeah!!

Thank you to all who have sent dinner, watched the girls, and done lawn work. Thank you, thank you, thank you!

Wednesday, December 05, 2001 at 12:46 PM (CST)

Today has been a very important day. We had some visitors today: Santa, Barney, the First Dog, and his owner, Laura Bush. yes, the First Lady came to see us. She is so lovely! We received a book and a teddy bear from her. It was very special, but Jeffrey was more impressed with the dog. Oh well!

Jeffrey continues to do well. We are actually off chemo until Sunday, but our blood counts are slipping. That is to be expected, but it will mean no visitors for a while. We can not run the risk of infection! He is a trooper so we will fly through, I know.

Thank you to all of you for your gifts, prayers, and kind words. We are so appreciative. I cannot keep up with all of the kindness :) so please allow this to be my way of saying thank you for meals, yardwork and etc.

Tuesday, December 04, 2001 at 08:20 PM (CST)

Back to His Old Tricks

Today was a great day for Jeffrey! He was disconnected from "slow poke" (aka the IV machine on wheels) because he has finished his 1st round of treatment. Now we wait for five days before resuming chemotherapy.

Stephen gave Jeffrey a bath and his activity level rose severalfold from the past few days. He was zipping around the hospital room as if to say "I am going stir crazy in this 10 x 12 room!" His appetite returned with a vengance. Ritz Bits Peanut Butter crackers and fruit punch were the favorites of today. Jeffrey was pleased to play "doctor" again after Tasha brought him some more alcohol swabs ("make beleive" just isn't any fun without the proper supplies). Tasha will be staying with him through Friday. Jeffrey also enjoyed reading and coloring his "Bob the Builder" coloring book. It was the most active day that we have had thusfar.

Tasha and Stephen are overwhelmed with everyone's generosity during this tough time. Because of Jeffrey's suceptibility to infection, we wanted you to know that our doctors have told us that we cannot bring live plants of flowers to his room. Also, we are limiting the number of other objects which might be carrying a fungus - such as stuffed animals or furry toys. Thank you for your consideration.

Monday, December 03, 2001 at 01:32 PM (CST)

Jeffrey and Daddy woke up in a good mood this morning. Jeffrey ate part of my poppy seed bagel w/ cream cheese. It has become a running joke that his appetite is fine and that he just wont eat hospital food. Our other observation is that hospitals are supposed to make people more healthy, yet they serve sausage at just about every meal.

In an effort to learn more about leukemia, Stephen attended a seminar called "Causes of Leukemia in Children." It was not designed for parents and he only understood every 12th word. Such is life for those who struggled thru biology - they stand little chance in mastering micro-biology on the fly. Jeffrey was in good hands with Sally, a hospital volunteer who watched him while he napped. Grammy (Janet Ball) came to visit - just as Jeffrey woke up from his nap.

Jeffrey has finished his 1st round of chemotherapy. Now we wait for five days before beginning a second round. He is showing no ill effects of the medicine, but is somewhat lethargic and has a minimal appetite. These days have been challenging,but manageable so far. Thanks for your prayers and kind words.

Sunday, December 02, 2001 at 09:54 PM (CST)

I just got off the phone with Stephen and all is well. The medicine Jeffrey had to take for his mouth care made him sick, but hopefully he will forget that when they have to do it tomorrow. I don't think that will happen since Jeffrey has a memory like an elephant. Oh well, we can still hope. Snuggling has become Jeffrey's favorite pastime along with watching videos. He loves Bambi, Lion King, and his Bob the Builder tapes. I am sure that they will all need to be replaced after this is all done.

Sunday, December 02, 2001 at 03:24 PM (CST)

Jeffrey began his journey on Wednesday, November 28, 2001. We arrived at Children's hospital and were greeted by a wonderful nurse named, Laura. She answered many of our questions and got us settled. After having a segmented night of sleep, we went into surgery. He came through with flying colors and we received our first positive- NO LEUKEMIA in the Central Nervous System. Yeah! Thursday, November 29, we spent time decorating our room with Bob the Builder sheets and a few pictures on the walls. Jeffrey continued to charm the nurses and made a few friends with the techs. Friday, November 30, was a more difficult day with the chemotherapy, but we got through it with lots of snuggles, a few visits from people like MomMom, PopPop, Daddy, Grammy and Auntie. After a wonderful dinner of crunchy mac and cheese (aka Cheetos), we ended our day with some bear hugs and kisses and lots of snuggles. Daddy arrived Saturday with the girls who were thrilled to see their brother. He was in a great mood and played for a few minutes before Mommy went home and Daddy started his duty at the hospital. Sunday has brought us more little joys and a lot more snuggles. Jeffrey's energy is diminished (we call it his hibernation), but he does remain positive and therefore so do we.

We thank you all for your thoughts, prayers, and for your generosity.

Sunday, December 02, 2001 at 03:14 PM (CST)

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