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December 4, 2008 Update coming soon!!
Love,
Laura
Hello All! To those who still check this website, thank you for your kind words and for remembering our beautiful Ryan. I must admit that I do feel somewhat strangely writing an update about myself, since this is Ryan's page. I suppose my journey is a continuation of my life with Ryan.
I graduated in early August from Nursing School with my BSN. Woohoo!! I accepted an RN position in acute pediatrics at Arnold Palmer Children's Hospital in Orlando. It's my dream job and I am beyond excited to begin my career!
I am continuing a two year relationship with a wonderful man who I am also blessed to call a best friend. He simply "gets me." He respects my past, cherishes me in the present, and I hope will light up my future. Following Ryan's death, a very wise pastor at MD Anderson shared with me that my heart would someday find room for another. I finally believe him. I know life plans aren't a certainty, but I am so very blessed in this moment.
Ryan continues to visit me in my dreams. I tremble when I think of the suffering he endured. I cry when I miss him. I laugh when I think of his witty charm. I beam when I think of our loving connection. He's okay. I'm okay.
Until next time.......
Love and Blessings to You!
Laura Marie
Sunday, February 11, 2007 2:28 PM CST Sunday, July 22, 2007: UPDATE COMING SOON!!
3 years ago Ryan became a beautiful angel. As he took his last breaths, I felt his soul leave the room and I knew that he was at peace. With each year that passes, I am more at peace as well. I miss him dearly, but his love and his energy remain. Thank you for being a part of our journey.
Say goodnight not good-bye
You will never leave my heart behind
Like the path of a star
Ill be anywhere you are
In the spark that lies beneath the coals
In the secret place inside your soul
Keep my light in your eyes
Say goodnight not good-bye
Dont you fear when you dream
Waking up is never what it seems
Like a jewel buried deep
Like a promise meant to keep
You are everything you want to be
So just let your heart reach out to me
Ill be right by your side
Say goodnight not good-bye
You are everything you want to be
So just let your heart reach out to me
Keep my light in your eyes
Say goodnight not good-bye
-B.N. Chapman
Hugs,
Laura Marie
Wednesday, December 6, 2006 7:21 PM CST
"Not A Day Goes By"
-LoneStar
Got a picture of you I carry in my heart
Close my eyes to see it when the world gets dark
Got a memory of you I carry in my soul
I wrap it close around me when the nights get cold
If you asked me how I'm doin' I'd say just fine
But the truth is baby, if you could read my mind
Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Baby, baby, oh baby, not a day goes by
Last month I was feeling “guilty” that I am still on the Earth and continue to have the amazing opportunity to experience love. I will get married again, and as a very wise pastor at MD Anderson tearfully told me almost 3 years ago, ‘Your heart will grow and make room for another love.’ I thought he was a bit mad at that point, but now I believe him. It’s part of the healing journey through grief.
After talking with a dear friend about this, I began to change my thoughts a bit when my friend pointed out the one-sided thought process. “Don’t you think that in heaven there is all encompassing love, love like we could never experience here on Earth?!” A love with God, a love that’s simply indescribable.
As humans I believe that we have an incredible ability to GROW in love each day. That may be love for the Lord, love for our families and friends, or love for our selves and our individual passions. In my mind, love is all encompassing and forever reaching.
I miss Ryan very much.
But “Love Never Ends…”
Merry Christmas and Wishes for a Happy New Year to You and Yours!!
Laura Marie
Sunday, October 8, 2006 10:21 AM CDT Today is Ryan's 26th Birthday. Happy Birthday Babydoll, I can only imagine what Birthdays in heaven are like!
Please keep my dear friends, Bryan and Karen, in your thoughts and prayers as Bryan continues to battle leukemia.
Much Love,
Laura Marie
Sunday, July 30, 2006 Last night I experienced what I would call a healing dream.
Ryan and I were at the movie theater. He was post-treatment for leukemia, but had been feeling well and going about a "normal" life. However, the last few days, he had been feeling nauseous and fatigued.
I was about to go get Cokes from the concession stand for us, and as I stood up I looked at Ryan blurting out "This is making me very nervous!" Meaning that although the doctors were hoping there was another medical reason for his nausea, my heart told me that it was a relapse of his leukemia. We were trying with all of our might to be positive, but the haunting shadow of relapse was ever present.
Ryan replied, "I know you are honey, and you think I’m not?" He then gently, but with complete conviction said "I’m fighting, but with the leukemia I just don’t think I'm meant to live another 60 years. I don't know why some people do live and some people don't live."
Then I looked into Ryan's beautiful and teary, yet content and loving eyes. And I said, "...but we'll always have 5 or 6 great ones." Meaning the 5 years we did spend together will always be cherished. He softly smiled. His face softly glowed. I kissed his cheek and went out of the row to get our drinks. All would be well...
And all is well. Ryan is okay. I am okay. We are okay.
"So live that your memories will be part of your happiness."
-Author Unknown
Much Love,
Laura Marie
Wednesday, July 5th ***Update Coming Soon!*** "A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease."
"A LION IN THE HOUSE premieres June 21 and 22 as a special presentation of the Independent Lens series on PBS. Find out when it is airing in your area by checking your local listings."
This looks like a fabulous and touching film! To learn more, please visit:
A Lion in the House on PBS
Sunday, May 7, 2006
Good Afternoon-
Finals are now finished, and I ended the semester with flying colors! I learned so much this term, both about the nursing profession and the kind of nurse I desire to be. I think I will really miss my classmates over the summer, we have formed beautiful friendships and have many stories together ;) In the fall, we will begin another med/surg rotation, as well as obstetrics and pediatrics!
This summer I'm working full-time at the Research Center, and plan on taking several vacations, including Florida, to visit with friends and family! My sister and I have recently begun training for Disney's January 2007 Half-Marathon, to benefit the Leukemia and Lymphoma Society. I might have some sore muscles, haha! The half-marathon/marathon is simply an amazing event, both on a personal level and a deeper and honorary level to those who are battling and who have battled blood cancers.
I've said before that Ryan was my teacher, and he continues to teach me as I float through this life. Ryan just "got it." I think that he comprehended the greater good of life and others in such a mature way. He showed love, compassion, honesty and respect to people from all walks of life. He set his goals high, and relished in each small accomplishment to reach that goal!
A good friend recently was talking with me about the girl he is dating, and he softly said "I love her mind." That comment stuck an emotional cord inside me.
I not only fell in love with Ryan's physical presence, but also his mental and spiritual nature. And as leukemia destroyed his once intact physical body, I fell more in love with his soul. I loved the way he thought, how he was always analyzing things. How he opened his eyes wide and slightly cocked his head when he was asking an intent question and listening for the answer. How he talked with his hands, those small and beautiful hands with such round fingertips. How he did a little laugh, almost a throaty chuckle when he figured out an answer or when making small talk. Upon meeting Ryan, I was at once intrigued. And I still am.
Please continue to keep those battling cancers, and their caregivers, in your thoughts and prayers. As the summer months approach, blood shortages tend to occur. So, please consider donating blood at your local blood bank!
Thanks for checking in!
Much Love,
Laura Marie
Wednesday, April 26th, 2006 ***Update Coming Soon!***
"There You'll Be"
When I think back
On these times
And the dreams
We left behind
I'll be glad 'cause
I was blessed to get
To have you in my life
When I look back
On these days
I'll look and see your face
You were right there for me
In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
Well you showed me
How it feels
To feel the sky
Within my reach
And I always
Will remember all
The strength you
Gave to me
Your love made me
Make it through
Oh, I owe so much to you
You were right there for me
In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
'Cause I always saw in you
My light, my strength
And I want to thank you
Now for all the ways
You were right there for me
You were right there for me
For always
-Faith Hill
Tuesday, February 7, 2006 7:58 PM CST Happy Valentine's Day!
Yesterday, I received a card in the mail from a very special friend. Inside the card, she had written a quote that seems so fitting to my current lifestyle.
"We all have our time machines. Some take us back, they're called memories. Some take us forward, they're called dreams."-Jeremy Irons
February 11th, 2004 Ryan joined the angels. 2 years ago on Saturday. An excerpt from my most recent journal reads:
“I like to think that when you enter heaven’s gates, you immediately possess all of God’s wisdom and knowledge you even need to know. All of your questions are answered, and you are comforted. Babydoll, I know that you are safe, free from pain and sadness. Do you miss me though? You knew Ryan, you knew you were going to die. How did you have that knowledge and accept it so calmly, so bravely with such courage? Love will get me through this grief journey, because love never ends. But I miss you very much. Last weekend in the car I know that you were with me, and I wasn’t even particularly thinking about you. I just felt it, I just felt warmth and I knew that I wasn’t truly alone. I had to concentrate to keep that feeling with me, but it was so powerful in those few moments. Almost like a connection between two worlds, is that possible? Are you proud of me babydoll? Sometimes I wonder what you would think of me now. Are you happy that I am moving on, that I am in Nursing School, that I am able to function socially again? That I don’t think of you 24/7? I still am not comfortable with saying 2 years, 24 months just sounds shorter. Years is a term that hits too deep and the longer away from having you here, the more an empty hole opens in my heart. One part of my heart is healing, rapdily growing room for new love and another part is cracking because my memories are not as vivid and you are not so big a part of my daily thoughts. I know this is normal, that it’s okay, but I am still not sure how I feel about it. I still don’t understand why you didn’t get an opportunity to live longer. You had so much to give honey, so much to share.”
But, in reality, Ryan did share and he did give. He gave endless love and caring to his family, spiritual support and many laughs (over video games;) to his friends, and many memories to allow me to pursue my dreams. Just like the quote above states.....
As always, thank you for your support.
Love and Prayers,
Laura Marie
Sunday, January 15, 2006 *****New Pictures Posted! Update Coming Soon!*****
With December here, and January and February quickly approaching, many dates significant to me are also approaching. Ryan’s second transplant anniversary on December 17th, Christmas, New Year’s, the anniversary of Ryan’s first transplant on January 11th, and then Ryan’s angel anniversary on February 11th. I guess that in the grand scope of life maybe these dates aren’t so important. Life marches on, and February 11th will come once every year until the end of the world. But anniversaries are emotional triggers nonetheless, whether they hold joyful memories, painful memories, or in my experience a combination of the two.
Anniversaries make me think about firsts, and then lasts. In the cancer journey and in the grief journey, the “firsts” are things that may be so terrifying, or so joyful that you can hardly control your emotions either way. And the tears flow.
Before diagnosis it was the first time I saw Ryan vomit, the first time I saw Ryan collapse to the floor in pain, the first time he had to take a handful of pain relievers to simply function, the first time he told me he didn’t feel “normal”, the first time that I flew to Orlando 3 weekends in a row, the first time I felt so utterly helpless.
At diagnosis it was the first time I cried and screamed with my Daddy on the phone as an adult, the first time I had to really think about what in the world leukemia was, the first time I searched for information on the computer all night long, the first time I looked into Dr. Reddy’s eyes with complete faith and trust, the first time I met our angel coordinator Becky, the first time I heard all those cancer stats, the first time Ryan told me what he wanted me to do and believe if he died, and on that same note, the first time Ryan told me that he wasn’t scared of dying. The first time that Ryan coped with my anxiety by signing little crazy songs about treatment, the first entitled “radioactive man”!!!.
During our move to the Gainesville, it was the first time I ever really lived on my own, the first time I lived with Ryan as a couple, the first time I learned how to pay rent and manage a checkbook, the first time I changed an air filter (or learned that house had air filter for that matter ?!), the first time I was ultimately responsible for cleaning and cooking for two, the first time, my mom, Susan and I went shopping for dishes and linens (not the last=), the first time I ever had a pool at my house.
During those initial chemo and radiation treatments it was the first time I felt like a walking pharmacy, the first time Ryan was really “bald”, the first time I ever valet parked every single day, the first time I ever spend almost every day at a hospital, the first time I learned words like infusaport, Hickman, vincristine, prednisone, immunosuppressant, IM injections, anaphylaxis, chemo-bucket, interthecal, BMB, and ALL of those lab abbreviations. And the first time I learned how to take temperatures, how to change sterile dressings, the first time I learned how to manage nausea, never-ending nausea, and the first time I learned how many calories were in a Boost. The first time Ryan was too sick to pay attention to me, the first time I heard the newspaper smack against the side of the house because we were up at that ungodly hour. The first time I saw that look of discouragement on his face and I about split in two. The first time we stayed up until the wee morning hours staring at our newly purchased fish tank, naming the fish and making up little stories about their lives! The first time I was the one that drove everywhere, the first time our friends came to visit on the weekend and it was heavenly to be ”normal” 20 year olds.
When Ryan relapsed it was the first time I ever looked into his eyes and knew exactly what Dr. Khan was saying without hearing a single word, the first time Ryan put on his big brave face for me, the first time we truly felt defeated, the first time we didn’t want to tell our parents something because we were worried about how they would react, one of the first times we knew more than our parents and didn’t really care for that feeling.
While searching for a bone marrow match, the first time I ever prayed so hard for one person, our miracle.
I will leave the firsts discussion tonight at that word, miracle. Because talk of miracles is apparent during the holiday season. The miracle of Baby Jesus, born to two parents in a stall on one starry night. The miracles of the love, forgiveness, and joy that Jesus brought to the world and its people.
However, sometimes I think miracles are not as big as we expect and those so-called little miracles are overlooked. The miracle of CaringBridge and the connections it fosters between people all over the world (big thanks to my CB friends, many of you who I’ve never met but feel as if I have!). And in my cancer journey, it’s the miracle of Ryan’s remissions, the miracle of each person on the wonderful hematology/oncology teams that we had at Shands and MD Anderson, the miracle of not one, but two stem cell donors. And perhaps the greatest of all, the miracle of hearing Ryan say “I love you” and then holding him in my arms as he ascended to heaven.
I miss Ryan dearly and he was the most beautiful human being I have ever known. Those memories, firsts or otherwise, don’t disappear completely. But, as I stated above, life marches on and I am determined to march with it. We heal little by little and I look to others for inspiration, including those still struggling with the cancer beast, those who have dedicated their lives to curing the beast, and of course, those who epitomize true strength and the forward marching movement (Mr. and Mrs. Langdale, that’s you!).
In practical news, I am just beginning to assist one of the nursing professors with publishing a review of literature on colorectal cancer at work. A wonderful learning experience for me, and I do adore the ladies I work with. This upcoming week is finals, and then a break till next semester’s medical/surgical and psychiatric clinicals. And a statistics course. Any help would be appreciated?! Haha. I am planning on spending Christmas with my family and then flying to Florida to spend New Year’s and to volunteer Disney’s Leukemia and Lymphoma Marathon.
A very Merry Christmas and Happy New Year to you all! May God Bless you with friends, family, delicious food, and miracles......
Love,
Laura Marie
Friday, December 2, 2005 *** UPDATE COMING SOON!*** Hello Friends! Almost 21 months along in my "grief journey", life continues to teach and humble me each day. I am ever hungry to learn about medicine, about human interactions, about other's struggles with cancer and about how to make a difference each day.
I've had an opportunity to complete several clinics in the hospital as part of my nursing curriculum. My last patient told me that if I just kept my attitude, I would make a wonderful nurse. I almost cried. Here was a woman with multiple health problems of her own, in constant pain, and she was kind enough to complement me. Good thing I didn't have to give her any injections :) Every day on my way to work and class, I walk by the cancer center. Last week I saw a young woman being dropped off at the outpatient area. She had post-chemo hair, really short and uneven. Yet, I have probably never seen someone walk so proudly or with such dignity. You could tell that she was just thankful to be alive! It was indeed a powerful lesson that we may never know to what extent we affect others.
Classes are going well and it's now the final push to Thanksgiving. I am learning pharmacology, physical assessment techniques, and how to perform invasive nursing procedures. Yet the psychosocial communication with my classmates and patients continues to be my "favorite part."
A classmate and friend asked how I was currently dealing with Ryan's death. I really pondered how to answer that question. Fine is such a generic answer, and not entirely true because I still do have my "grief attacks" of tears and anger. I still have questions without answers, but I also believe that Ryan's life served a great purpose and I am content with the fact that he now resides in heaven with our Lord where there is no cancer, no pain and no suffering. Only joy and infinite knowledge! The answer I finally came up with was, Better, Thankful and Blessed. Better on mobilizing through grief, Thankful for my amazing family and friends, Blessed to have been part of Ryan's life.
As the holiday season approaches, please consider purchasing your greeting cards from MD Anderson's Children's Art Project , The Leukemia and Lymphoma Society , or The American Cancer Society to assist in the fight against cancer.
Thank you for your support and prayers!
Much Love,
Laura Marie and Angel Ryan
Wednesday, November 2, 2005 4:58 PM CST Hello Friends! Recently, my computer's hard drive had to be re-formatted. In the midst of re-installing files, I discovered this rough draft of a paper Ryan had written. Each letter or picture I find unexpectedly is now truly a gift to be treasured!
On a sunny summer afternoon in 1993 I was told that I was going to have to attend a summer band camp. I protested to the whole idea of wasting my time at a band camp, but my mother insisted it would help me become a better musician. In this case, it seemed that mother knew best. At the time I thought this was the absolute worst thing that could ever happen to me, but it ended up being the most significant week of my life to date.
The week at band camp started out dreadful as expected. We had musical auditions to find out what band we were to be placed in. I was a pretty good trumpet player, so I ended up in the top band. There were three bands available at this time. The small band was for beginner students. The second band was for students who have been playing for a while and were fairly good. The top band was for the students who excelled in music. I was excited to be in the top band and as soon as I called my parents I told them of my recent success. I made sure I told them with as little enthusiasm as possible because I didn’t want to hint that I might be having a good time.
The band camp was held at Butler University in Indianapolis, Indiana. During the night, campers slept in the various college dorms on site. I was in a wonderful dorm, but my roommate was a little unusual. At night he would call his mother on the phone and cry to her that he wanted to go home. He was only at camp for about half of the week, then his parents finally gave in and let him come home. I didn’t think that this same technique would get my parents to pick me up or I would have tried!
Butler band camp did a lot for the students besides helping them to become better musicians. They also gave us a great deal of time to socialize among the other campers. The camp would set up a daily field trip, and this field trip would include various activities such as water parks, movies, roller-skating and a formal dance. The final dance was one event that has always stuck out in my mind as a very special one.
The night before the concert was the formal dance. All of the band campers, including myself, were sad that the week was coming to an end. I was determined to have a good time at this dance though! During the dance I met a very sweet girl named Laura. We danced a little bit and got to know each other better as the dance went on. Laura mentioned that she had seen me previously in the week dancing in my dorm room window in only my boxer shorts! At first I was a little embarrassed, but I soon got over it. She was a very cute girl with frizzy hair and big glasses that looked kind of funny, but she was still very sweet. After the dance was over I gave her a hug good night and went back to my dorm room. I didn’t think much of her at the time, except for the fact that she was very nice and had some cute friends. I would have never thought that this was the beginning of a very long and wonderful relationship.
Before we went home the next day, I called over to her dorm room. As she was getting ready to leave I got her address and phone number. I told her that I would call her sometime and maybe write her a letter. She seemed a little excited and we agreed that we would try and see each other again sometime. I was not really sure if that was the last time I was to ever see Laura, but I had a feeling that it wouldn’t be.
Since that week in July I have seen Laura quite a bit. We did in fact stay in close contact though the years. Even though I moved to Florida from Indianapolis in 1995 it didn’t make any changes in our feelings towards each other. I had the privilege of attending both her Junior and Senior Proms in Mooresville, Indiana during High School. Ever since our Junior Prom, Laura and I have found a way to see each other about ever month or so. Our parents usually helped us out with the airfare, and were always very supportive of our relationship.
During Labor Day weekend in 1999 I flew up to see Laura at her new college. Her father met me at the airport and gave me his Mustang to drive up and see Laura at Purdue University. On September 4th I asked Laura to get dressed up, and I mentioned that I wanted to take her out for dinner. She had some of her friends on her dorm floor help her get all dressed up. I picked Laura up at her dorm around 7:30 pm and drove with her to Indianapolis. I placed a little blind fold over her eyes so that the restaurant would be a surprise. Around 8:30 pm I got to Chante Clare’s, a beautiful French restaurant, and walked her inside. It just happened that Laura and I had been to this restaurant before, and this was the first place I had ever kissed her!
When we got to our table, the Maitre-De summoned the violin player to come over to where we were seated. The restaurant had beautiful artwork on the walls, and the tables were candlelit. When the violin player came to the table he started playing Pachelbel’s Canon. I removed the blind fold from Laura’s eyes and got down on my knee. I asked Laura to marry me and she accepted.,
Gosh, I loved that man! I plan on posting a personal update this weekend. As always, thank you for checking in! Your support continues to be appreciated!
Love,
Laura
*****Monday, October 31st***** *****Update coming soon!!*****
Happy Fall to You! I apologize for the lengthy time between updates, and again I truly appreciate your faithful visits to this site. Your guestbook comments can always make me smile!
Classes are going well, and I experienced my first clinical 2 weeks ago. It was incredibly nerve-racking to enter a foreign unit, but with the aid of my clinical instructor and my fellow nursing students and friends, it turned out to be a great day! We were only certified to give baths, make beds, and provide basic hygiene, but this also allowed us time for observation and communicating with patients. In the next fundamentals unit we are learning injections! Watch out here I come :)
I am continuing to work part-time in the Nursing Research Center, and also learning much there about how research studies are conducted. In the next few weeks, I hope to begin participating in a study of younger breast cancer survivors.
I recently flew to Orlando for the Night of Joy Christian concerts at Disney World, and of course to visit with Ryan’s family and many friends. What a wonderful weekend! I am blessed remain in such close contact with Ryan’s family, because not only are they Ryan’s parents and brother, they are also my friends. I also had an opportunity to have lunch with my dear friends Jay and Jennifer, and Peter. Jay and Peter are cancer survivors, and simply amazing men. Jennifer, you know how much I love you! I was able to visit with another friend whose fiancé also passed away from cancer, and I draw so much strength from her and our very similar paths.
Soon it will be 20 months since Ryan earned his angel wings. Sometimes it is still difficult for my heart to understand that he's gone. My mind is rational, but I miss him greatly. In my personal journal I recently wrote: "Sure I miss his physical presence, but I truly miss his voice. I hate that my brain can’t conjure up something he would say as easily now. I had to turn on a theater video of him yesterday to remind myself of how he sounded. I think that from so many years of talking on the phone when he lived in Florida and I in Indiana, I was so attuned to hearing his voice inflections. I would “make” him recite his lines from Midsummer Night’s Dream to me, have him sing to me. I loved his voice, so calming, so pure. One night while he was getting fluids in the MDA transfusion unit, I sing to him. Songs I knew from church, Christmas songs, made-up songs about the paintings on the wall. He was so sick, but my voice was comforting. I just wish I could just hear his voice more now.”
As life continues to progress, I still have questions but I also have many more answers about mortality and my purpose. I see small miracles that happen every day, I analyze the way that people express their emotions with greater compassion. Also written in my journal: “When Ryan was in his ICU bed I remember looking at him, thinking here is my love, my life, my light, my world…what will I do if he dies? How will I live, do I even want to live if Ryan isn’t here? Ryan was my life, especially for the last 4 years, every moment and every bit of my energy and thought process focused on getting him well, on his well-being. Won’t I be a failure if he dies, did I do something incorrectly? Will the battle these last 4 years be worth it? If our goal of long-term survival isn’t met and Ryan doesn’t resume a normal life, why did we do all of this? Now I see the last 4 years as so much more, as the basis for my adult life, as the basis of my very being, my outlook on life. Every single second was worth it, even the pain of all those bone marrow biopsies, even all of the tears of sorrow at night when Ryan was too sick to pay attention to me. I would do it all over again. There is such a greater purpose to this all, it wasn’t just battling leukemia. It was growing in love, meeting other heroes, making life-long friends, bringing people to Christ, learning how to live on our own as a couple, learning how to connect with the spiritual world, loving as deeply as humanly possible. Ryan showing me how to cherish those cuddling moments, teaching me what true bravery and dedication to your life’s purpose and to your God was. I am going to be okay, I can feel the sparkle in my life, in my step and in my smile returning. As my friend Joel said, I am on my way up. My life is coming together, becoming more “normal” although I am proud that I am not normal.”
All my love and prayers,
Laura Marie
Monday, August 29, 2005 8:51 PM CDT Say goodnight, not goodbye
You will never leave my heart behing
Like the path of a star
I'll be anywhere you are
In the spark that lies beneath the coals
In the secret place inside your soul
Keep my light, in your eyes
Say goodnight, not goodbye
Don't you fear, when you dream
Waking up is never what it seems
Like a jewel, burried deep
Like a promise meant to keep
You are everything you want to be
So just let your heart reach out to me
Keep my light, in your eyes
Say goodnight, not goodbye
Say goodnight, not goodbye
-Beth Neilson Chapman
Update Coming Soon!
Love,
Laura Marie
Monday, August 29, 2005 8:51 PM CDT Say goodnight, not goodbye
You will never leave my heart behing
Like the path of a star
I'll be anywhere you are
In the spark that lies beneath the coals
In the secret place inside your soul
Keep my light, in your eyes
Say goodnight, not goodbye
Don't you fear, when you dream
Waking up is never what it seems
Like a jewel, burried deep
Like a promise meant to keep
You are everything you want to be
So just let your heart reach out to me
Keep my light, in your eyes
Say goodnight, not goodbye
Say goodnight, not goodbye
-Beth Neilson Chapman
Update Coming Soon!
Love,
Laura Marie
Friday, July 15, 2005 11:37 AM CDT Hello Everyone-
This last week I have been reading my Cure magazine (www.curetoday.com). The Summer Issue has an amazing article on caregiving. It preciously expressed some of the feelings I experienced during Ryan's treatment and since Ryan's passing.
One paragraph I completely identified with states: "The heavy investment in caregiving can make it difficult to adjust to life after caregiving ends. That's especially true if the person you were caring for dies. Although you probably won't be the same person you were when you first became a caregiver and your life likely won't be the same, you can find a "new normal" when your caregiving role ends. In fact, for some who have witnessed how fleeting and fragile life can be, it's an opportunity to take new paths, make sense of traumatic experiences and come out on the other side stronger. But it's not an easy journey." These words could have been taken from my own mouth.
One caregiver states, "What I can't let go of and probably never will is the underlying worry about his future health and all the issues that could come up as a result of his treatment." Truly, it is a nagging feeling that seems to haunt your thoughts in dark or quiet moments.
Still, perhaps the most difficult ordeal to overcome after caregiving ends, either when the patient fully recovers or when the patient passes, is finding a new identity. Another caregiver writes, "It's who I was" and "It's a life-altering experience." It has been a life-altering experience for me, and each day continues to provide new challenges along with many new joys.
Here's to all caregivers! You are genuinely inspiring, and I recognize your daily efforts and compassion.
Lots of Love,
Laura Marie
Thursday, June 23, 2005 8:07 PM CDT Hello Everyone. I hope that your summer is going well, and the sun is shining bright!
I am currently taking an intensive summer course, microbiology. It is a split course, with lecture and laboratory sessions. Absolutely fascinating, I love that it has such a clinical focus! I am also working as a research assistant in the School of Nursing. My job duties are fairly broad, which allows me to view how grants are processed, how research studies are completed, and how the office runs in general. It continues to be a wonderful learning experience, and the staff members are so sweet!
For the last 16 months since Ryan's death, I have kept a personal journal. I thought I would share with you some excerpts from my recent entries:
I feel a journal coming on. What a week it has been, and I’m glad that classes are over. This week I think that I finally started to understand the concept of combining the old with the new. Nothing special happened, no one event. I realized that Ryan will always be a part of me. But there needs to be a proper balance between ‘hanging on’ to the past and moving forward into the future. I hate to move on without Ryan and by no means does that mean he will be forgotten, but I have to not dwell on things that have already happened. I have to use my previous experiences to move forward into the future.
Ryan and I had this beautiful, wonderful life together. Although it was not without its dark moments. There were never dark moments within our relationship, just dark moments in our life circumstances. Sometimes, I just want to shout from the rooftops the love that we had for each other, but I guess that I am impartial=) How in heaven’s name can anyone measure up to that I have no idea. I guess that in time my heart will soften, and as a wise pastor at MD Anderson told me, there will be room in my heart for another love. I thought that I was the one love, junior-high sweetheart kind of girl. We could have told our kids that we met at 13. How I miss him, how I would love just another second with him.
But, there was nothing left unsaid. I’ve tried to think what I would say to him now, and I can’t come up with anything. He knew that I loved him; he knew that he was my precious babydoll, my knight in shining armor. He knew that I would miss him if he left this Earth; he knew that he was going to heaven; he knew that I would be okay but forever changed. Ryan had it all figured out way before anyone else did. He was comfortable in his own skin at a very young age. He was simply Ryan, the one and only.
Silly and serious, full of life and able to stop at any memorable moment. Proud of me, displaying pictures of us in Europe on his desk at work, telling me he really needed me. Needed me in the sense that I kept him alive and safe by giving him his meds and squirting that hand sanitizer all over him. But most of all needed me in the sense that I completed him. Our love was complete and unconditional.
Tonight I felt Ryan. Yes, I felt his presence. I curled up with my dinner, ready to watch “The Notebook.” The kitty came up into my lap, purring and begging for attention. Then I feel like Ryan is standing behind me. I can almost feel his arm wrap around my shoulders, I can almost feel his warm kiss on my check. Almost feel him, so close. The tops of my shoulders get warm, sort of tingly and I get misty eyed. I know he’s here with me sometimes, and I am not afraid when he is. But, I somehow know that he can’t stay too long. I know that he has to go and I just appreciate the little visit of spirit.
“The Notebook” was a wonderful love story, an honest love story portrayed so well by its actors. It restated that what Ryan and I shared was real love. Beyond young love and puppy love, but a love that conquers all. Transcends worlds, as Ryan’s mom would say. Someday I hope to write of our journey in a novel, someday it will be on paper. A friend recently told me that I was a good writer, but I humbly question that. I simply write my feelings, my emotions in the raw, and my thoughts from the heart. My love story that was God-given and created between two young people, connected forever with their souls.
Thank you for your support, and for your prayers! They are all appreciated. Please remember to donate blood if you are able, and keep our heros still battling cancer in your thoughts.
Hugs,
Laura Marie
PS-There are new pictures posted.
Sunday, June 20th---------------------- ***UPDATE AND PICTURES COMING SOON***
Hello Friends-
Hope you are well, and enjoying summer weather!
Recently, while sorting through old files and school materials in my garage, I found Ryan’s folder of papers from 2000 when he worked as a salesman at a Chevrolet dealership in Orlando. One personalized letter, addressed to Ryan's management staff, was from an elderly customer and I found it so touching. She writes:
“I felt like crying, so I went walking around the dealership and suddenly a nice, young man named Mr. Ryan Petrek asked if he could help me. I explained my situation to him: that I had 2 cars there and I could drive only one since my husband had recent eye surgery and was blind. God Bless him. Right away he asked if he could drive one car to my house and if I could drive him back. So, I of course said yes, I only live about one mile from here.”
“I think you all should know what a wonderful, considerate, compassionate person Mr. Ryan Petrek is. And how different from all of the other employees at the service department to which I begged for help. The world will be a better place to live if we had more people like Mr. Ryan Petrek. God Bless him.”
That’s a glimpse of my dollbaby!!
The school semester ended well. I am taking a mini-vacation to Florida this week for a visit with Ryan’s family and many friends...before summer school begins in early June. I am still waiting to hear from a couple of local places regarding summer employment?!
Thanks for checking in, and for your lovely guestbook entries. Please remember our heroes who continue to courageously battle with cancer!
Much Love,
Laura Marie
Wednesday, May 13, 2005 ***Update Coming Soon!***
Hello Friends-
I hope your week is going well and the sun is shining!
Today in Nursing class we had a guest speaker who quoted a Chinese saying, "we never cross the same stream twice" because the water beneath is ever-changing. Life experiences and current situations mold and shape a person, and the next time we encounter a repetitive situation it really is not the same because our previous experiences guide us and change our perceptions.
I think that this directly applies to the frailty of life. Viewing the frailty of life, seeing sick and vulnerable people, seeing others you love suffer and experience pain is never pleasant, but the more you are part of this realm, the deeper "living for the moment" becomes. Each day is a gift, each positive or negative experience we encounter changes our outlook on life, hopefully for the better.
I often think about how much Ryan taught me in the 10 years I knew him, both as a friend and as my love. One of those things was to truly examine the present situation and then use past knowledge to more actively and confidently deal with the situation. Ryan was so wise, so perceptive and witty, so thoughtful and so mindful to live for each and every moment! And I am so grateful that he was my teacher! As a future nurse, I pray that I am able to use my past experiences and knowledge set to aid others not only in physical healing, but also in emotional examination.
I am not sure where all this is leading, but I just wanted to share my thoughts with you. Thank you for partaking in this healing journey with me, because the ever-changing water includes you. You are helping me to change, to grow, to see the goodness of people in a new light!
Love,
Laura and Angel Ryan
Monday, March 21, 2005 1:58 PM CST Hello Friends! Hope it is beginning to feel like Spring!
I returned yesterday from my Spring Vacation to Florida. It was a wonderful trip, and I had an opportunity to visit with Ryan's family and many cherished friends in Orlando. I was also able to drive to Sarasota to see friends act in the musical Cats, to Gainesville to see my dear friends Jay and Jennifer, and to Ft. Lauderdale with my sister to spend some quality time on the beach!! Thank you to everyone who made my trip so amazing, and to my friends in Florida who continue to love and support me!
The first day I arrived in Florida, I went out to the cemetary to see Ryan's headstone in person. It was much more emotional than I expected. With the headstone in place and the beautiful picture of Ryan on the headstone, I feel a stronger connection and that made it more difficult to leave. I expected Ryan's face in the picture to become animated at any moment! In some ways, I always feel like I am leaving Ryan.......on the plane when we lived in different states, or in the hospital overnight, and now the cemetary. I have never been very good at "goodbyes." I just have to trust that I will see Ryan in heaven one day soon! And that brings me comfort.
Thirteen months later I am learning how to combine the past with the present, and allow previous events to propel me to desire future goals. Letting go and hanging on all in the same motions. I have my moments when I just miss Ryan, plain and simple. I miss him and I miss taking care of him, I miss needing him and loving on him. And the moments may come at the oddest times, for example when I am slicing a banana on my cereal and remember how Ryan liked his bananas sliced! I have a mini-breakdown and then smile at all of our little, silly moments together.
The school semester is progressing along, and we only have 6 weeks of classes left. Papers and group projects are keeping me busy! This week we are signing up for fall 2005 Nursing classes, which will include more time in the laboratory and clinical experience in the teaching hospitals. I am very excited about the application of knowledge and experience to touch the lives of patients!
For security reasons, CaringBridge is no longer allowing the linking to other sites from personal webpages. However, please feel free to post your web address in the guestbook! I know that many of you found this site through a series of links and I also personally discovered many CB sites through other links.
Remember to donate blood if you are able and support blood cancer research efforts in your area! Thanks for continuing to check in and for your love and prayers! I will post some Spring Break photos soon!
Hugs,
Laura Marie
Tuesday, March 8th, 10am UPDATE COMING SOON!!! Thank you all for caring so much..........
Hello Everyone!
February has proven to be a difficult month for me thus far, and I know that the next few days as we approach the one year anniversary of Ryan's angel date will continue to be emotionally trying. It is amazing the power that a date can hold, the power in one number to change our thought processes and our feelings.
More tears, more memories, and ultimately more smiles as the good memories begin to infiltrate the traumatic memories. And with smiles I am able to remember Ryan's life and memories with such love and wonderment! And so the healing process continues............
Sometimes I think it is fitting that Ryan's angel anniversary falls close to Valentine's Day. A day of love. Ryan and I shared such a deep and faithful love. And the thought alone, of Ryan's love for me, has carried me through some of the darkest hours.
Your love has also carried me. I stated that I would continue this CaringBridge journal for a year past Ryan's death. But, I think that I will continue to journal on for now. I am unable to put into words how much this website has provided me with strength, courage, smiles, and caring compassion. Thank you for your love and caring words! You are all dear to my heart and I enjoy hearing your personal stories.
Ryan wrote a poem one year for Valentine's day I thought I would share:
To the one I love with all my heart
To the one I know that we'll never part
To the one I wish to kiss goodnight
To the one I love to hold so tight
To the one who makes me dreams come true
To the one who makes true love come through
To the one that brightens up my day
To the one I love to romp and play
To the one who will hold my child so close
To the one I truly love the most
On a final note, the Leukemia-Lymphoma Society now has tri-color awarenss pins for leukemia, lymphoma, and myeloma. Contact your local Society chapter for more information or if you are interested in ordering awareness pins. Please remember those who continue to battle blood cancers!
Hopefully, I will be able to post some pictures soon!
Hugs,
Laura Marie
Update and Pictures Coming Soon!! Tomorrow, January 11th 2005, marks the three year anniversary of Ryan's first bone marrow transplant. A day that I remember so well, yet sometimes seems so long ago. For four hours, precious bone marrow from an international donor was infused into Ryan and started searching for the correct place to take hold and begin to grow. Ryan was a fast "engrafter", he engrafted around day 10! I still marvel at the entire process.
So, to Ryan's donor out there...Thank you for the precious gift of life you so graciousely gave to Ryan. Thank you for allowing me to spend another two years and one month with my babydoll!
Here is the letter that Ryan wrote to anonymously thank his donor:
Dear Donor,
I would like to thank you for what you have done in donating your bone marrow. It has turned out to be the greatest and most precious gift that I have ever received. My family, fiancee, and I all thank you from the bottom of our hearts.
I am a 21 year old male and a second year college student. Before I got sick, I worked as a sales representative for a Chevrolet car dealership. I anjoy scuba diving, sailing, tennis and video games. I am engaged to a wonderful girl who has been sweet enough to take care of me through these tough times. We are planning to get married soon, thanks to you.
On April 10th of 2001, I was told by doctors that I had Acute Lymphatic Leukemia. The original plan was a chemotherapy regiment. For the first eight months, the treatment worked. However, shortly before Thanksgiving I was told that I had relapsed.
The result of this relapse meant that I would need to have a bone marrow transplant. When all of the search results were in, YOU were the only suitable match in the world. Without you my future looked very bleak.
Thank you for taking the time. God Bless You.
For more information on how to become a bone marrow or stem cell donor, visit www.marrow.org. There is a link at the bottom of this page.
Lots of Love and Hugs,
Laura and Angel Ryan
Tuesday, January 4th- New Pictures Coming Soon!
Just wanted to inform all of you, my faithful supporters, that I have been officially accepted into Nursing School at IUPUI for next semester!!!!!
Merry, Merry Christmas to You!
Last year on Christmas I wrote in my personal journal of low blood counts and opening our presents three times because of Ryan being so loopy on pain medicine. I wrote of Jay and Jennifer being admitted shortly before Christmas, and how we were in their good company and the good company of our wonderful nurses. I wrote of Ryan's family being there to celebrate with us, and of the eggnog that I had stored for Ryan in the floor lounge's refrigerator.
I laugh when I remember that Ryan lovingly told me that the decorative Christmas wire of stars and angels coiled on our windowsill looked similiar to barb-wire around prison walls! And I smile when I look at the picture of Ryan and I with a masked Santa Claus, Ryan so cute.
I cherish the Christmas Holiday's that I shared with Ryan, all five of them. And I wonder what his Christmas is like this year. As my friend Ginny wrote...."Think what a special time Christmas must be in heaven!! Bet Ryan is on some big party committee. And everyone wants to sing carols because they can all sing like, well, angels. And to put the star on top of a tree all you have to do is fly up. If you drink too much, you only get tipsy enough to be charming. All gifts must be made out of gold, frankincense, and myrrh. And anybody can hang with Jesus for awhile if they want....listen to music..." I don't know what it's like exactly, but I know that it's more wonderful than we could ever imagine.
I miss Ryan. I miss him everyday, not just Christmas time. But, he's not really lost because he resides in my heart and my soul and communicates with me in my dreams.
Thank you with all of my heart for being on this journey with Ryan and with me this last year. May your holiday season be warm and joyful, and your New Year bright and beautiful!
Much Love,
Laura Marie and Angel Ryan
Thursday, December 9th Today was a good "Ryan day", so I thought I would share one moment with you! After my afternoon classes, I was headed home. Usually I drive one certain road, however today for some guided reason I decided to take the interstate instead of my usual city street. As I was driving, it started raining. I think, oh yuck!
But, as I kept driving, the rain let up and the sun immediately appeared. And while I have read and spoke with many people about seeing the classic rainbow as a sign from their desceased loved ones, I had never experienced that sign. There it was, the most beautiful and completely full rainbow directly encircling me! And more importantly, I felt Ryan there with me! The 'sixth sense' if you will imagine. Another reason that I know he will always be with me deep within my heart and soul.
Friday December 3rd-
Good Afternoon Everyone!
Hope that you enjoyed your Thanksgiving Holiday, and surrounded yourself with friends, family and good food! I still can not believe that December is here.
December 17th will mark the one year anniversary of Ryan's second transplant. Sometimes I feel as if it was just yesterday. I can remember that transplant so vididly, the way Ryan looked into my eyes...his eyes were so hopeful and so tired, but still so beautiful. And I remember how Ryan and I joked that we were now experienced transplanters! Ryan still comes to visit me in my dreams often though, and I know that he is always with me.
I am planning on posting some pictures from my recent Florida vacation soon. It was a wonderful trip! Otherwise, the school semester is quickly coming to a close, with finals beginning next week.
Thank you again for your love and words of support over the past year. When we began this CaringBridge journal last summer, we never dreamed that it would become such a meaningful and cherished place or foster so many wonderful friendships. This site was really meant to be. Thank you.
Hugs,
Laura and Angel Ryan
Saturday, November 27- Saturday, November 6-
Good Evening! There are new and various pictures up of the European vacation Ryan and I took with my family in the summer of 2000. I apologize for the last two being blurry, but I still think the scenery is beautiful. I love to look at our faces and see how happy we were together!
I am going to be taking a little trip down to Florida this upcoming weekend and I am really looking forward to visiting with Ryan's family and my friends. Plus some warm weather=)
Thank you for your love and support.........
Hugs,
Laura Marie
Sunday, October 24, 2004 8:22 PM CDT I am working on some new pictures from the trip Ryan and I took to Europe with my family, stay tuned!
Good Evening Everyone! Please note my new e-mail address at the bottom of the page. This is my school address, as I will soon be canceling my aol address.
I am taking a religion class this semester, and last week we were discussing attributes of certain religious figures. Charisma was mentioned and I started to think about how charisma was related to Ryan. The definition is: A rare personal quality attributed to leaders who arouse fervent popular devotion and enthusiasm, a personal attractiveness that enables you to influence others.
I could never put my finger on the right word that described Ryan, but I really like "charisma." I've said it before, but there was something special about Ryan that pulled me and so many others to him. His intentions were pure, and he was a natural and un-selfish leader. I was fascinated with his presence of power and confidence, with the energy and the light that he possessed and I was drawn to him! Some might call it energy or the power of soul mates, but regardless of the name Ryan had an incredible and unique effect on me.
So, that's my deep thought for today!
I am continuing to stay busy with un-packing and settling in at my new place, with classes and social events. And I finally feel as if my life is slowly starting to even out. I have goals and I have an idea about where I'm headed.
Thank you for your continued support, love and prayers.
Love, Laura and Angel Ryan
Monday, October 4, 2004 9:24 PM CDT Hi Everyone! I will be moving into my new place this weekend and wanted to share my new contact information:
My new address is 198 LakeView Court, Avon IN 46123. I will be changing my e-mail address also, so I will post that new address shortly.
Ryan's birthday is this Friday, October 8th. Ryan always loved that his birthday was 10-8-80 because 10 times 8 was 80=) How he could always make me smile with his cute (yet obvious)comments! He would have been the big 24. I am not quite certain how to feel about this day, because he will be forever 23, yet this will always be his birthday. His 23rd birthday was wonderful though, and I know he enjoyed the cake and presents....I am so thankful that we made a big fuss about it.
So, Happy Birthday Honey! I love you and I miss you every day...........
Hugs,
Laura Marie
Monday Evening-------------- I heard this song today and was touched. Thought I would share...
How Could I Ask For More?
by Cindy Morgan
There's nothing like the warmth of a summer afternoon
Waking to the sunlight, and being cradled by the moon
Catching fireflies at night
Building castles in the sand
Kissing Mama's face goodnight
Holding Daddy's hand
Thank you Lord, how could I ask for more
Running barefoot through the grass
A little hide and go seek
Being so in love, that you can hardly eat
Dancing in the dark, when there's no one else around
Being bundled 'neath the covers, watching snow
Fall to the ground
Thank you Lord, how could I ask for more
So many things I thought would bring me happiness
Some dreams that are realities today
Such an irony the things that mean the most to me
Are the memories that I've made along the way
So if there's anything I've learned
From this journey I am on
Simple truths will keep you going
Simple love will keep you strong
Cause there are questions without answers
Flames that never die
Heartaches we go through are often blessings in disguise
So thank you Lord, oh thank you Lord
How could I ask for more
---------------------------------------
Friday Afternoon----------
Hello and Happy Labor Day Weekend to You!
Tomorrow, September 4th, Ryan and I would have been engaged for 5 years. I have placed those 5 years, and moments within, in re-wind and fast-forward so many times. That night of September 4th 1999, Ryan took me to a fancy French restaurant complete with a violin player and candlelight. I can still close my eyes and remember when he bent down on one knee......however, our words that followed weren't quite as romantic as the setting! Ryan couldn't get any sound out, so he mouthed "will you marry me" and I said "ah-hu." =)=)
I have been so very busy with classes, the communte to and from school, and general life activities that I've barely kept on top of things. The Nursing School is very competive and if I want to get accepted into the offical program this upcoming sememster, my grades must be high. So, lots of studying! My new house is progressing...the kitchen and bathroom cabinets/counters are in, so it shouldn't be too much longer before I can move in.
On a sad note, our Cancer Wives Club lost another hero, Brad, this week to complications from a liver biopsy. I am just heart-broken and at a loss for answers/understanding. This wonderful group of ladies in our CW Club have an indescrible and very special bond, and this is a shocking loss. Please keep Brad's precious wife Becky in your thoughts and prayers. www.caringbridge.org/ne/bradfrahm
With fall quickly approaching, the Leukemia and Lymphoma Society's annual Light the Night walk will soon occur in many communities across the country. The Leukemia and Lymphoma Society is an organization that provides multiple forms of support to families battling these diseases, as well as funds research efforts for new treatments and possibly a cure. My dear friends, Jay and Jennifer, have a team and would appreciate your donation if you are able to give. You can learn more their efforts and make a donation by visiting the following Web site:
http://www.active.com/donate/fundraise/JLangda1. Or for more information, please visit www.lightthenight.org
I will post new pictures shortly.
Love and Blessings,
Laura
Wednesday, August 11, 2004 12:43 AM CDT Hello Everyone! I am just amazed at how the number counter keeps climbing, thank you so much for continuing to check Ryan's page. Be sure to sign the guestbook! I will update soon, hopefully with some new pictures. Love, Laura
Today marks 6 months since Ryan earned his angel wings. At one point, I thought that this mark seemed so far into the future. But, here I am...I made it. I am a changed person, but I have such a joy for life and a purpose to make a difference both in my future career and my personal life.
Ryan was my best friend, my lover and my teacher, and he taught me so much...he was so incredible! I look at the difference he made in the world in his 23 years and I am in awe...Ryan led people to Jesus, he made others laugh in the most uncertain of times, he lit up a room with his confidence and poise!
Thank you all for supporting us on this journey, and for continuing to support me! There are some other CaringBridge patients who could use some extra support:
Tina(www.caringbridge.org/fl/tinawasson), who had a bone marrow transplant recently. And little Jordan's family(www.caringbridge.org/ia/jordangrosclaude). Jordan became a beautiful angel August the 18th.
Love and Hugs,
Laura Marie
I assure you, anyone who believes in me already has eternal life.-John 6:47
I have fought a good fight, I have finished the race, and I have remained faithful.-2 Tim. 4:7
Wednesday, August 4, 2004 1:55 PM CDT Hello Everyone!! Thank you for continuing to check the website and for your loving support...
As most of you are aware, I recently spent 2 weeks in Florida visiting family, friends, sorting through our possessions and attending the Shands bone marrow transplant reunion. It was wonderful to be back in Florida, one of my many "homes", but at the same time there was a sense of emptyness. There was a Ryan memory everywhere I looked! Most of my memories were pleasant though, and I took great comfort in reliving them.
I had the honor of donating some of Ryan's video games to Give Kids the World, a magical and completely giving organization. I know that Ryan would be proud that a portion of his game collection will bless others with smiles and joy!
Classes begin for me soon, and I am really looking forward to settling into a routine. My new patio home is progressing well, and I will hopefully be moved in by the end of the month!
There are new pictures posted............Enjoy!
And please continue to keep little Jordan in your prayers, his website is www.caringbridge.org/ia/jordangrosclaude
Love and Hugs,
Laura and Angel Ryan
Thursday Evening- NEW UPDATE COMING SOON! Please pray for little Jordan, http://www.caringbridge.org/ia/jordangrosclaude, he needs prayers of comfort and love, as does his family.
Have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.
Rainer Maria Rilke - Letters to a Young Poet
Here is an article from the Bone Marrow Transplant Reunion that I attended last weekend...........
Transplant ties: Reunion brings together bone marrow donors, recipients
Amber Richards, 11, of Lakeland plays Sunday with new friend Amber Lovelady, 10, of Port St. Lucie during the annual bone marrow donors and recipients reunion held at Camp Kulaqua in High Springs. Richards' brother Derek and Lovelady's grandfather are Shands at UF bone marrow transplant survivors.
This fall, Angelee Arroyo's almost 6-year-old son Anthony will start kindergarten. She won't be sad to see him go.
"I'm happy for him," Arroyo said as Anthony bounced up and down along with a pale blue balloon tied to his shoelaces. "Because we never knew if he was going to be able to go or not."
Eighteen months ago, Anthony received an umbilical cord blood transplant to treat acute lymphoblastic leukemia. He was diagnosed with the disease at age 2, and, after a relapse, doctors at hospitals near his home in Fort Lauderdale recommended he seek treatment at Shands at
the University of Florida. On Sunday, Arroyo and Anthony, who would later get his face painted to look like a green monster, were among those gathered at Camp Kulaqua
for a reunion of donors and recipients held by the Shands Bone Marrow Transplant Unit.
The event takes place every two years and celebrates
the more than 1,600 people who have received transplants at the hospital since the unit opened in 1981, along with their family, friends, doctors, nurses and donors.
Also taking advantage of clowns offering face-painting services at the reunion was 4-year-old Devon Southwell, who had rainbows decorating her cheeks and nose. They were admired by Ann Richardson, Devon's grandmother and the recipient of a bone marrow transplant five years
ago.
"Since then we've had three grandchildren and one on the way," said Richardson, 59, who was treated for non-Hodgkin's lymphoma and acute leukemia. After bragging about the new grandchild, a girl due in three weeks, Richardson said she came to the reunion "just to see the miracles."
"I really have so many blessings to celebrate," said Richardson, who received bone marrow from her brother. "Every day I'm grateful to God for a new day, even though there's been a lot of trial and error and
trouble. You really go down to death and come back."
The reunion was also a time for staff at the Shands Bone Marrow Transplant Unit to meet former patients. Helen Welsh, a registered nurse and coordinator of the bone marrow transplant clinic, introduced a reporter to Katherina Flowers, who had a successful transplant 13
years ago. Flowers, a Miramar resident who never misses the reunion, joked that Welsh does the same thing every year.
"She's one of my first patients," Welsh explained.
After Steve Kelley received a bone marrow transplant at Shands to treat Hodgkin's disease, a doctor told him he might never be able to have a child. On Sunday, he attended the reunion with his wife, Kerri, and 20-month old triplets - girls named Addison Faith, Kinsey Grace and
Carsyn Trace. "It's great to be here, especially to see all the kids that have done well," said Kelley, of Thomasville, Ga. "I went from being in the face of a death sentence to now being able to start a family."
About 30,000 people are diagnosed each year with life-threatening blood diseases such as leukemia or inherited diseases, according to the National Marrow Donor Program. Although about 30 percent find marrow or stem cell donors within their families, the remaining 70 percent must
find an unrelated donor. The donor program's registry matches donors and potential recipients through tissue type.
The identities of unrelated donors and recipients are kept confidential by the program for a year. The pair are then given the opportunity to find out each other's identities.
A hug shared as they received a standing ovation at Sunday's reunion was the first face-to-face meeting for Joan Smith, a retired employee of the state Department of Transportation in Tallahassee, and Jason Engelhardt, a college student who attends chiropractic school in
upstate New York.
Two years ago, Smith received a transplant at Shands with bone marrow from Engelhardt, who she was matched with through the National Marrow Donor Program Registry. The 25-year-old initially joined the registry to try and help a friend's mother, who, like 63-year-old Smith, had
leukemia.
"It's just unbelievable, just wonderful," Smith said. "I'll just be eternally thankful to Jason for being so generous, for starting out to help a friend's mother and staying on the list. And here I was down in
Florida waiting for him."
The two have spoken previously on the phone and also exchanged e-mail. But meeting Sunday was "exciting" for Engelhardt. And although donating bone marrow came with some discomfort, he said "I'd do it again in a
heartbeat."
Rachel Kipp can be reached at (352) 374-5086 or kippr@gvillesun.com.
Love and Hugs,
Laura Marie
Sunday, July 11, 2004 5:14 PM CDT Hello! Today has been 5 months since Ryan passed, how I miss those shining eyes and little mysterious smile. He was so cute, so cute...I am bias, but I adored him!
I am leaving for Florida tomorrow to visit Ryan's family, my friends, and go to a bone marrow reunion in Gainesville. Gainesville/Shands is where Ryan had his first transplant and we lived there for over a year. The people at Shands are very special to me and will always hold a place in my heart! Hopefully, this visit will be healing, but in many ways I know it will be bitter-sweet.
Please pray for Angel Andrew's wife, Lori, his website is www.caringbridge.org/nm/andrewselby. And also please keep little Jordan in your thoughts and prayers, his website is www.caringbridge.org/ia/jordangrosclaude.
There are new pictures........
Love and Hugs,
Laura
Tuesday, June 22, 2004 8:50 AM CDT *****UPDATE JULY 7: Andrew has become an angel, please continue to pray for his wife, daughter and family. His website is www.caringbridge.org/nm/andrewselby*****
There is one new picture up!
Morning! Thanks for checking in, all of you. Sorry it's been a while since I've updated, the truth is sometimes I don't have the composure to do so or I'm not sure what to say. It is still strange for me to focus on me.
I have come to several realizations lately...one being that I will always love Ryan and that I will always miss Ryan. My 'missing' will change, time will change how I feel, but I do not think I will ever be 'over' Ryan. He was a huge part of me, and he still is. He is everywhere I look...and when I am in the car singing to the radio and a particular song comes on, I can hear him singing with me.
I am a changed person because of Ryan and our life experiences, I am a different person. And I am okay with that. It is a surreal thought for me to think that my life here on Earth is continuing on and that Ryan's is not. The sun is rising and setting each day, no matter how I feel or what I do. My life is continuing for however long God deems to be and that is the one life I have here on Earth, so I will try to live in the moment and enjoy the little things.
And I will be okay. I think that I can finally say that now. I will be okay, I will go on...not that I am happy about losing Ryan or that I don't wish the outcome of his leukemia treatment would have been different, but I will be okay. I don't think that Ryan would have left me if he didn't know I would be okay, he was always so intuitive.
In other news, I will be beginning school this fall at IUPUI(Indiana University Purdue University Indianapolis) to study Nursing. Something I am very excited about! For my housing, I will be living in the Avon area in a new patio home. It is a beauituful place and fairly close to campus. Otherwise, I've been enjoying my volunteering at the Hospital, taking a yoga series and visiting with several friends.
Please keep little Jordan in your prayers, www.caringbridge.org/ia/jordangrosclaude
Thanks for checking in....
Love and Hugs,
Laura and Angel Ryan
Have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.
Rainer Maria Rilke - Letters to a Young Poet
UPDATE, Wednesday Night: Tonight I ask you to please, please pray for little Jordan G! He recently had his third bone marrow transplant and it having several serious complications. Although I have never personally met Jordan or his family, I feel as if I know them...from reading their site and e-mailing Jordan's very knowledgable and wonderful mom Susan. Ryan had many of these complications, so I have some idea how stressful this situation is. I only wish that I could do more for this sweet little boy! Please pray for Jordan's comfort, strength and lift his name and his family and medical team up to the Lord! Jordan's webisite is http://www.caringbridge.org/ia/jordangrosclaude
Thank you for checking in and for your words of love in the guestbook! I check them everyday and always smile...over 45,000 hits!
Love and Hugs,
Laura and Angel Ryan
June 6, was National Cancer Survivor's Day...more information can be found at www.ncsdf.org
Someday I hope that cancer will be a disease of the past. The efforts in diagnosing and treating cancer have greatly improved, but can also greatly be improved upon. I have many unanswered questions as to why cancer, why this type, why did it not respond to this treatment...so many questions that scientists and medical professionals are struggling to discover! I can only hope that Ryan and I helped in some way to discover the best treatments, and soon the cure...Ryan always consented to the extra studies, to drawing one more tube of blood for research purposes. For him, and for all of those battling leukemia and other cancers....remember the survivors and the angels!
Thursday, May 13, 2004 3:51 PM CDT Hello Everyone! Thanks for still checking in...there are a couple of new pictures posted!
Well, it has been a little over 3 months since Ryan's passing and wow, how my life has changed. Sometimes, I feel like it's been so long since I've touched Ryan's face or hugged him...how I wish I could. But, no hugs could have ever been enough! I had this thing that I "made" him give me a morning hug every day, he would complain but I know he really loved the attention...good thing I insisted on all of those hugs! And sometimes, I feel like it was just yesterday that he was with me. In a way, he is always with me now...
I am going to start volunteering next week at a local Hospital one/two shifts a week in the Emergency Dept. I am strangly comfortable in hospitals and am looking forward to this experince. I am also taking a yoga class and working on school plans for the fall.
There is an amazing website at http://www.alexslemonade.com that you might want to look at! A little girl named Alex is hosting a lemonade stand in every state on June 12 and the procedes go to childhood cancer.
Love and Hugs to You,
Laura and Angel Ryan
Tuesday Afternoon, April 27, 2004
"I can only imagine what it will be like, when I walk by Your side...
I can only imagine, what my eyes will see, when Your Face is before me!
I can only imagine. I can only imagine.
Surrounded by Your Glory, what will my heart feel?
Will I dance for you, Jesus? Or in awe of You, be still?
Will I stand in Your presence, or to my knees will I fall?
Will I sing 'Hallelujah!'? Will I be able to speak at all?
I can only imagine! I can only imagine!
I can only imagine, when that day comes, when I find myself standing in the Son!
I can only imagine, when all I will do, is forever, forever worship You!
I can only imagine! I can only imagine!
Surrounded by Your Glory, what will my heart feel?
Will I dance for you, Jesus? Or in awe of You, be still?
Will I stand in Your presence, or to my knees will I fall?
Will I sing 'Hallelujah!'? Will I be able to speak at all?
I can only imagine! Yeah! I can only imagine!
Surrounded by Your Glory, what will my heart feel?
Will I dance for you, Jesus? Or in awe of You, be still?
Will I stand in Your presence, or to my knees will I fall?
Will I sing 'Hallelujah!'? Will I be able to speak at all?
I can only imagine! Yeah! I can only imagine!
I can only imagine! Yeah! I can only imagine!! Only imagine!!!
I can only imagine.
I can only imagine, when all I do is forever, forever worship You!
I can only imagine."
By:MercyMe
Friday, April 23, 2004 11:49 AM CDT
Hey Everyone! Thanks for your posts and for allowing me to show Ryan off a little, I was always so proud of him. He was quite the charmer, and it still is an incredible feeling to have the knowledge that Ryan truly loved me!
When people say I am strong, I always want to tell them...well, I'm not sure about that, but I would have done anything, anything for Ryan. I did what I had to do, and I would do it all over again if I had the chance.
A couple of my CaringBridge friends just had their transplants and I am sure they would appreciate some words of encouragment and prayers: Jordan had his 3rd transplant on the 21st, http://www.caringbridge.org/ia/jordangrosclaude and Tina has her bone marrow transplant today, http://www.caringbridge.org/fl/tinawasson
Sorry, I am not computer skilled enough to put the names as links. Feel free to e-mail me if you know how, I really should learn.
Love and Hugs,
Laura Marie
Monday, April 19, 2004 1:49 PM CDT New Pictures Added!
Hello! When Ryan and I were in high school and the first years of college, we used to e-mail each other constantly. I have over 400 of them! Here is a sample of how Ryan melted my heart.....I loved and will always love him so much. This shows off his personality too. Notice the subject title...it will make you smile.
Subject: Dude! I love you so freaking much.
I was thinking the other day about how much I love about you. One of the things I was thinking about was how I just didn't love your looks or your personality, but I loved everything there is to love about a person. I love your hair and eyes. I love the way you smell and I love your height. I love your taste in houses and colors and food. I love how you have a cool respect for cars and SUV's. I love how you have an appreciation for art and music. I love how you treat me as a boyfriend, a friend, and as a person. I love how you hold my hand and always have a smile for me. I love how you like to smile for pictures, and how you put on you pretty pretty princess smile for the camera. I love how you hold me ever so tight when we are cuddled up. I love how you kiss me. I love how I am going to talk more about you kissing me. I love how your lips are so soft. I love how you touch is ever so gentle I love how you wake me up in the morning with a little kiss I love how you love me so much. I love having someone I can care about and be in love with. I love how I can start planning our future together. I love the fact that all the things we talk about can, and are going to become a reality. I love how we are the most perfectly matched couple. I love how I met you on a spontaneous phone call that has ended up being the most important phone call of my life. I love how I have found the most perfect person for me ever. I love the fact that I am going to marry you someday Laura. I love you! I am in love with you. Your the one and only baby doll. I hope you don't mind. Have a great day tomorrow. I will write you tomorrow night and tell you all about the day.
Sweet dreams baby doll,
Your Belt.....
Ryan
Thank you for still checking in and for your messages in the guestbook.
Hugs,
Laura
Monday, April 5, 2004 11:24 PM CDT Hello and Happy April=) Thanks for still checking in and for allowing me to share Ryan's story. Writing truly is theraputic.
Well, the days are moving along...I don't think that time heals my hurt, but rather time changes how I feel. Things are just different...I still cry every night and I would give anything to have Ryan back in the physical sense with me, but I know that he will forever remain in my heart. I had had the chance to do lots of thinking lately, and think I really do! I have thought about all of the why's, and if only's and I can say that I do not regret any decisions Ryan and I made, just wish the outcome would have been different.
I don't understand the whole leukemia experince, but I also don't feel the need to ask why anymore. There are some things that we don't need to know, and some things that we just understand. I know that when I get to heaven all of my questions will be answered! And, Ryan and I had an understanding of each other from the very beginning when we first met at 13...we could look at each other's eyes and know it all without saying a word.
When I look back now on Ryan's last few minutes on Earth, which I try not to do sometimes because it hurts too much. But, I just realized something....those last moments were very precious and personal, but Ryan's last words were that he loved me. Then he kissed me...like actually kissed back...and I just realized that he had not actually kissed me back in about 5 weeks...he told me goodbye...and it was perfect.
That's enough therapy for tonight, I need some kleenex...thank you all for listening and checking the webpage. I will update soon.....
Love and Hugs,
Laura Marie
Monday Night IMPORTANT info from Karen Banister: My good buddy Lori and her gang up in Canada are putting together a really awsome team for Relay for Life, coming up on June 25th. I have two goals - the first is to raise $500 or more, and the second is to gather as many pictures as possible. We're trying to get 720 pictures of people touched by cancer - one person for every minute of the event - 12 hours. SOOOO, if you want to send a picture please do this:
Mail regular mail to: Relay Pictures
c/o 121 David Cres.
Amherstburg, ON
N9V 3R3
OR EMAIL TO: thewightmans@aol.com (subject line: Relay Pic)
It would be great if you could make a color copy and send that, but if that's not possible, please send an addressed and stamped envelope along with the picture and we'll make sure that it's returned. Along with the picture, please write the name of the person on the back along with age, diagnosis, what their status is now (remission, post BMT, whatever) and any other info you would like and we'll try to include as much as we can for others to see at the Relay.
March 22-->NEW PICTURES HAVE BEEN ADDED!
Friday, March 12, 2004 11:29 AM CST Yesterday marked one month after Ryan's passing...time seems to move so slowly and so fast all at once. I am trying to repress the haunting images I have of Ryan in the hospital...the tubes, the looks on those doctors faces, the blood...I would much rather remember the happy hospital times, eating popsicles, walking in the hallways, sharing in the joy of someone else's good news, cuddling with Ryan.
I am in Indiana now...my mom flew into Orlando last Tuesday and we drove 16 hours on Wednesday. With the cat=) Kitty did remarkably well, with the aid of 2 tranquilizers. Before I left, I spent Sunday and Monday with my Orlando friends and boy, do I have great friends!! They always make me smile...we did alot of talking, ate out, went to Disney!
My sister is coming home from Purdue for Spring Break today, so the house will be full this next week. I am in the process of organizing all of my "stuff."
I seem to do okay during the day, but there hasn't been a tearless night. Sometimes, I will be fine and then in the weirdest moment...tears. Bottom line, I just miss Ryan. He taught me so many things, from how to cook spinach to being the person I am today...I just miss him being with me.
Thank you for all of your prayers, cards and thoughts. Please continue to keep all of the people fighting leukemia in your prayers...they are the heros!
Hugs,
Laura and Angel Ryan
Friday, March 5, 2004 12:10 AM CST Well, yesterday Ryan and I would have been engaged for exactly 4 and a half years. I miss him constantly, but I try to remember all of the happy times we had together and hope the bad times will fade. I loved and will continue to love him deeply.
My trip to Shands was emotionally hard at times, but I did feel better, more complete, when the day was done. I visited with our coordinator, the in-patient and out-patient nurses, pa's and staff. It was wonderful just to see their faces, these people will forever have my upmost respect and love.
I was able to stop by our old apt complex, and then off to spend the afternoon with Jay and Jennifer. Their house is so cute, and it was great to sit on their back porch and catch up. Jay continues to do well after his bmt, please keep both of them in your prayers.
I will be leaving Florida next Wednesday, so I've been doing lots of last minute things....and packing/evaluating.
Thanks for checking in and for your continued prayers. This website has truly been a blessing...
Love,
Laura and Angel Ryan
Tuesday, March 2, 2004 10:41 AM CST Good Morning! Well, the days are passing by...I miss Ryan maybe more every day, but I see positive reminders of him everywhere. His brother, James, and I went to the cemetary yesterday to place some beautiful yellow tulips. We should have a sketch on Ryan's headstone sometime this week.
I am taking a day trip to Gainesville, FL tomorrow to visit our coordinator, nurses, and staff at Shands(our first hospital). I will also be seeing Jay and Jennifer, and possibly some other Gainesville friends! I'm not really sure how I will do emotionally walking into Shands, but I am looking forward to seeing friends and I think the trip will be somewhat healing for me. Gainesville was such a huge part of Ryan's life and my life!
Thank you for your donations to CaringBridge in honor of Ryan! CaringBridge is a wonderful medium to help loved ones stay in touch.
Love and Hugs Until Next Time,
Laura and Angel Ryan
Friday, February 27, 2004 2:00 PM CST Hello Followers! Thank you for your continued suppport, prayers, cards, and love! This continued support means so much to us, as now all the funeral activities are winding down and we are all trying to return to "normal" life and move on. Although, sometimes I wish I could just re-wind, instead of move on.
I spoke with Dr.Giralt(Ryan's main BMT doc) and got some closure, thanked him for giving us hope. He is a wonderful man! He feels that along with the known issues Ryan had going on, he probably had an infection/pnumonia also. As all of us cancer folks know, one issues harms/helps another and it is one huge balancing act. Ryan was so brave and so resilent for almost 4 years, enduring so much, but his body was so tired and he chose to be healed completely in heaven.
Please continue to keep Little Abigail(www.caringbridge.org/va/abbyallies) in Texas in your prayers. She is in stable, but critical condition and one tough fighter!
Until next time...
Love and Hugs,
Laura and Angel Ryan
Tuesday, February 24, 2004 11:02 AM CST Below is the very touching and beautiful service that Dr.Bushong delievered at Ryan's funeral last Tuesday...
Laura, Susan and Bob, James – those whose grief this morning goes beyond any description that language possibly could give to it . . . I’m going to ask you to remember three words from what I’m going to share this afternoon. Just three words. You ready? Three words. Here they are:
Love never ends.
Those are the Apostle Paul’s words, not mine. They’re the first three words in verse 8 of Chapter 13 of I Corinthians. Love never ends. Paul’s not talking here about just a feeling – not just a nice, warm, perhaps mushy or romantic feeling. He’s talking about a way of relating to one another, a way of connecting that is, as he defines it “patient and kind, not envious or boastful or arrogant or rude . . . not irritable or resentful . . .” And of course, very often a strong feeling that we also call love undergirds what Paul is talking about.
Ryan’s death did not kill that love. Why? Because love never ends.
The love so apparent between Ryan and those with whom he shared life continues to nourish and influence, to comfort and to guide, to bring depth and meaning into the lives of those who have loved Ryan and those whom he has loved.
Laura, the love that you and Ryan have shared over the past several years as you have experienced ups and downs, victories and disappointments, a journey that few folks in their early twenties have taken together, will always be a part of your life.
Bob and Susan, that unique love between parent and child that you have had with Ryan for more than twenty-three years will always be key to defining who you are.
And James, you will continue to be shaped and influenced by the love that you have shared with your big brother.
Ryan was an individual. He was unique. He was gifted and talented, compassionate and very bright. I knew him best during his high school years. A member of the youth group at Peace United Methodist Church, a friend of my son’s, for some reason Ryan and I connected at a very meaningful level. We would meet periodically one-to-one and talk
about issues going on his life. I remember sensing about Ryan at that point in his life a depth, an insight that was unusual for a teenager.
And of course the way in which he has handled the past almost three years has been remarkable. Can you imagine a more positive attitude? Someone with every right to gripe and complain, and yet he didn’t do it.
So, where to go with all of this, anyway? Albeit with good intentions some people of faith foster a sort of religious denial system that quickly embraces the hope of resurrection without allowing themselves to experience the pain of grief. Well, the grief is real here this afternoon, isn’t it?
If Ryan were here in a physical way and could stand in front of all of us and say something to us, first I believe he would embrace the pain of the moment. He didn’t want to leave Laura and his family. He loved sharing life with them. He fought for three years to hang on to that life. It just wouldn’t be honest not to say that he had sadness about leaving them. There’s no question about that.
At the same time, there was a spiritual depth to Ryan that was remarkable – and very real. Ryan never questioned “Why?” about all this.
There was no hint of anger or hopelessness. He was not afraid of dying. And Ryan knew that somehow God would use even this – even his illness and his premature death – to God’s glory. That was simply part of the content of Ryan’s faith.
Recently I read a quote from the late Bill Bright, founder and long-time Director of the Campus Crusade for Christ ministry that made me think of Ryan:
None of us has a long time here on planet earth. It's kind of a staging ground. It's our split second in eternity when we have an opportunity to invest our lives, our time, our talent and our treasure to help fulfill what our Lord came into this world to do and commissioned us to do. In fact, His last words before He ascended to be with he Father were: 'Be my witnesses.'
And so has Ryan been a witness for our Lord – through the way in which he has lived his life, through the way in which he has shared his faith, through the way in which he has navigated his journey through suffering and pain, through the way in which he has faced his death.
You know, there are lots of ways in which Ryan lives on in the lives that he has touched, in the memories, in the influences, certainly in
the witness to his faith. Most important, however, Ryan lives on with God, even as he lies before us in death.
It is the privilege that I have to stand before you this afternoon and say that when Ryan Petrek slipped away from this physical life while surrounded by his beloved family on Wednesday morning, he moved into the fullness of the warm and loving embrace of the God whom he has known through his relationship with Jesus Christ.
That’s not to say that the grief doesn’t remain for those who are left behind. Certainly it does. There’s no denying the sadness. There’s no getting around the sense of loss. It’s a time of ambivalence, a time of mixed feelings and emotions. All that has been done, all that might have
been done flash before us, and we feel at the same time such conflicting emotions as sorrow and joy, dismay and peace, sadness and hope.
But for the one who has gone on – for Ryan – life becomes that experience that is lived within the fullness of the love of God through Jesus Christ. It is life eternal that is ruled solely and completely by the gentle and loving compassion of God. There is no illness, there is no death, there is no pain, there are no tears.
The message is announced by the Psalmist – even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me – surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.
It is echoed by the author of John’s Gospel, who records Jesus speaking of the places that he prepares for his followers. And the message is underscored by the bold proclamation of the Apostle Paul in his letter to the church at Rome – I am sure that nothing – not even death – will be able to separate us from the love of God in Christ Jesus our Lord.
Even in death – perhaps it is more appropriate to say most especially in death – God’s love remains. Oh my goodness, do we miss Ryan? Certainly we do. And we will. Let’s not for a minute deny this fact. But let’s also take comfort in the truth of the Gospel message expressed in the words of Jesus: those who believe in me, though they die, yet shall they live – and whoever lives and believes in me shall never die.
It is this God of all encompassing, never-ending love whom we come to know best through a relationship with Jesus Christ who welcomes Ryan Petrek into his eternal kingdom, just as he has promised.
And one day, my friends – one day, through the gracious love of God in Jesus Christ – one day we shall all meet again.
In the meantime, don’t ever forget those three words: Love never ends.
Monday, February 23, 2004 12:46 AM CST
Hi! There are some very special people that could use your prayers. Little Abigail(www.caringbridge.org/va/abbyallies) in Texas is not doing well and needs prayers, as well as her parents. And Mike(www.caringbridge.org/canada/mike) just earned his angel wings after battling leukemia. His wife, Kristyn and their two boys could use come kind words.
There are so many more children and adults battling leukemia, lymphoma, and cancer in general...it just breaks my heart. Someday there will be a cure! Please go and donate blood or platlets if you can, and consider becoming a member of the bone marrow registry. These simple acts will help!
I will close with a quote e-mailed to me by my friend Vicki that represents Ryan and so many others..."If you ask me how I want to be remembered, it is as a winner. You know what a winner is? A winner is somebody who has given his best effort, who has tried the hardest they possibly can, who has utilized every ounce of energy and strength within them to accomplish something. It doesn't mean that they accomplished it or failed, it means that they've given it their best. That's a winner." By Walter Payton.
Love and Hugs,
Laura and Angel Ryan
Monday, February 23, 2004 12:46 AM CST Hi! There are some very special people that could use your prayers. Little Abigail(www.caringbridge.org/va/abbyallies) in Texas is not doing well and needs prayers, as well as her parents. And Mike(www.caringbridge.org/canada/mike) just earned his angel wings after battling leukemia. His wife, Kristyn and their two boys could use come kind words.
There are so many more children and adults battling leukemia, lymphoma, and cancer in general...it just breaks my heart. Someday there will be a cure! Please go and donate blood or platlets if you can, and consider becoming a member of the bone marrow registry. These simple acts will help!
I will close with a quote e-mailed to me by my friend Vicki that represents Ryan and so many others..."If you ask me how I want to be remembered, it is as a winner. You know what a winner is? A winner is somebody who has given his best effort, who has tried the hardest they possibly can, who has utilized every ounce of energy and strength within them to accomplish something. It doesn't mean that they accomplished it or failed, it means that they've given it their best. That's a winner." By Walter Payton.
Love and Hugs,
Laura and Angel Ryan
Monday, February 23, 2004 12:44 AM CST Hi! There are some very special people that could use your prayers. Little Abigail in Texas is not doing well and needs prayers, as well as her parents. And Mike just earned his angel wings after battling leukemia. His wife, Kristyn and their two boys could use come kind words.
There are so many more children and adults battling leukemia, lymphoma, and cancer in general...it just breaks my heart. Someday there will be a cure! Please go and donate blood or platlets if you can, and consider becoming a member of the bone marrow registry. These simple acts will help!
I will close with a quote e-mailed to me by my friend Vicki that represents Ryan and so many others..."If you ask me how I want to be remembered, it is as a winner. You know what a winner is? A winner is somebody who has given his best effort, who has tried the hardest they possibly can, who has utilized every ounce of energy and strength within them to accomplish something. It doesn't mean that they accomplished it or failed, it means that they've given it their best. That's a winner." By Walter Payton.
Love and Hugs,
Laura and Angel Ryan
Monday, February 23, 2004 12:21 AM CST Hi! There are some very special people that could use your prayers. Little Abigail in Texas is not doing well and needs prayers, as well as her parents. And Mike just earned his angel wings after battling leukemia. His wife, Kristyn and their two boys could use come kind words.
There are so many more children and adults battling leukemia, lymphoma, and cancer in general...it just breaks my heart. Someday there will be a cure! Please go and donate blood or platlets if you can, and consider becoming a member of the bone marrow registry. These simple acts will help!
I will close with a quote e-mailed to me by my friend Vicki that represents Ryan and so many others..."If you ask me how I want to be remembered, it is as a winner. You know what a winner is? A winner is somebody who has given his best effort, who has tried the hardest they possibly can, who has utilized every ounce of energy and strength within them to accomplish something. It doesn't mean that they accomplished it or failed, it means that they've given it their best. That's a winner." By Walter Payton.
Love and Hugs,
Laura and Angel Ryan
Friday, February 20, 2004 3:26 PM CST Hello! Thanks for being patient with me about posting an update, I just haven't had the time or the heart, or composure to do so yet.
First, a huge Thank You to all of you out there who have sent cards, flowers, notes in the guestbook, postal mail, prayers, and your supporting thoughts. I, along with Ryan's family, are simply overwhelmed with the outpouring of love for Ryan and us! Please know that ALL of you who care are most apprecated, we truly could not hold up without you. Some of you I feel as if I've known forever due to this web-site and some of you I did get to personally meet over the past few days.
To the other caringbridge families, my heart breaks with your sadness and I am joyful along with your happiness. To create such a connection with internet families across the country is incredible!
Ryan's visitation and service on Monday and Tuesday were perfect, although difficult, and I think that he would have been very proud! I could feel his presence with us. The funeral home was decorated with flowers and framed pictures as well as posters of pictures of Ryan. The service Tuesday was also wonderful...Pastor Bushong's message was "love never ends." While we will all grieve and cry, missing Ryan with all of our hearts and souls, he is in a better place...heaven. With no pain, no sadness and he will forever be with us in our hearts. His final resting place is very peaceful, with trees and plenty of sunshine. We are in the process of designing the headstone.
As for me, I am not really quite sure how to feel. Sometimes it's angry and tears that Ryan was taken from me or that he got this horrible disease called leukemia or how he suffered, sometimes it's joy for all of the happy moments we spent together for half our lives or for knowing someone who molded me or for the priveledge of being with Ryan, sometimes it's disbelief or numbness that he really is not going to walk through the front door, sometimes it's lonileness, and sometimes it's peace and calmness, inner strength if you will that Ryan is always with me, that we are soulmates, that in the blink of an eye we will be together again in heaven! Right now it's streaming tears, so I will close for today.
Thank you for being there through this journey...
Love and Hugs,
Laura and Angel Ryan
Friday, February 13, 2004 7:28 PM CST Entry with a few additions:
Dear Friends of RYAN and LAURA,
On February 11, 2004 Ryan passed away after 3 years of a valiant battle with leukemia. Ryan was peaceful, without pain and in Laura's loving arms when he died.
Funeral arrangements for Ryan will include visitation on Monday February 16, 2004 from 6:00-8:00pm at the Family Funeral Care at Hunters Creek in Orlando. The address is 13001 South John Young Parkway, Orlando, FL 32837. Phone number is 407-812-4200.
On Tuesday February 17,2004 there will be additional visitation from 12:00-1:00pm followed by a chapel service at the Family Funeral Care Home. Burial will occur at Woodlawn Memorial Park, also in Orlando, FL.
Memorial donations may be sent to Caringbridge at www.caringbridge.org and/or the Leukemia-Lymphoma Society at www.leukemia-lymphoma.org
Please continue to give your love and affection to Laura and Ryan's family.
Friday, February 13, 2004 2:33 PM CST Dear Friends of RYAN and LAURA,
On February 11, 2004 Ryan passed away after 3 years of a valiant battle with leukemia. Ryan was peaceful, without pain and in Laura's loving arms when he died.
Funeral arrangements for Ryan will include visitation on Monday February 16, 2004 from 6:00-8:00pm at the Family Funeral Care at Hunters Creek in Orlando.
On Tuesday February 17,2004 there will be additional visitation from 12:00-1:00pm followed by a chapel service at the Family Funeral Care Home.
Memorial donations may be sent to Caringbridge at www.caringbridge.org and/or the Leukemia-Lymphoma Society at www.leukemia-lymphoma.org
Please continue to give your love and affection to Laura and Ryan's family.
Friday, February 13, 2004 1:18 PM CST Dear Friends of RYAN and LAURA,
On February 11, 2004, Ryan passed away after 3 years of a valiant battle with leukemia. Ryan's passing was peaceful, without pain and in Laura's loving embrace.
Funeral arrangements will include visitation on Monday February 16, 2004 from 6:00-8:00pm at the Family Funeral Care in Hunters Creek of Orlando.
On Tuesday February 17, 2004 additional visitation time will be 12:00 to 1:00pm with a chapel service following at 1:00pm in the Family Funeral Care Home.
Memorial donations may be gifted to Caringbridge at www.caringbridge.org and/or The Leukemia/Lymphoma Society at www.leukemia-lymphoma.org
Please continue to share your love and affection for Laura and Ryan's family.
Tuesday, February 10, 2004 6:49 PM CST Hello and Good Evening! Ryan had a great day...he sat up in the chair most of the day, ate a popsicle (by himself=)and was alert and aware. His bili went down again, from 28 to 25! Neurology, PT and OT came to visit...not results from the MRI yet. Probably tomorrow. Ryan's bone marrow biopsy will be tomorrow, I think they just do it in his room.
Ryan is such a trooper, and I am so proud of him. He is making great progress and we are so blessed. Thank you for all of your prayers, and please pray for good bone marrow results. The goal of this transplant is to cure his leukemia!
Please visit my friend Mike and Kristyn's site. Mike recently had a transplant and is having some rough times with his liver/kidneys. I know they would appreciate some words of encouragment. www.caringbridge.org/canada/mike
Love,
Laura
Monday, February 9, 2004 9:16 PM CST Hello again! Today went well...Ryan ended up not having his bone marrow biopsy today, it will be scheduled for tomorrow or later this week, as too many other things were going on. Some 'abnormal' cells were on the last biopsy at day 30, although he is in a remission, so this biopsy will be important. It will tell us disease and donor cell status.
We are still waiting on his MRI here at 9pm...ahhhh. What can I do?! Ryan had photopheresis today, and got a unit of blood and platlets. He had PT and OT...boy, are his muscles tight and sore. He has a couple of sores on his backside and one on his heel, so the wound care nurses came to look at those today and decide what's best as far as dressing, creams, etc. His skin is so fragile and dry. We also really worked on Ryan' mouth today, it is looking much better.
Our new doctor, Dr.Anderlini, was very sweet and wanted to make sure that Ryan wasn't in any pain. He feels the best course of action is to continue what we're doing. So, tomorrow will be similiar to today.
Ryan was in good spirits today, he is such a trooper. He is very cooperative and always keeps trying!! He is also very cute=) He is a little out-of-it still, but better than it was and he does listen to what we say. I even got a kiss today! I told him that we are taking it one day at a time and that we are all praying for healing, and out of the blue he will now tell me that.
Please continue your prayers for comfort, strength, and guidance. And if possible, donate blood or platlets to your local blood bank...
Love,
Laura and Ryan
Monday, February 9, 2004 8:56 AM CST MINI MORNING UPDATE:
Ryan and I had a pretty good night...I woke up to blood spilling over the bed-side and freaked! One of Ryan's lines had broke and we had a big mess. Anyway, he is resting now and we have a big day...meeting a new doctor, photopheresis, a bone marrow biopsy and an MRI. Plus the usual PT, OT, sitting in the chair...His bili went from 28 yesterday to 27 today with no procedures, so we'll gladly take that! He is going to get a couple units of blood soon. I will update later today....please pray for a smooth day, God's blessing on our medical staff, and disease-free bone marrow! Thank you.
Love,
Laura and Ryan
Sunday, February 8, 2004 4:35 PM CST Today is Day 53!
Last night, Ryan got up in the chair and was very alert. He was talking to us and knew what was happening around him. He's been up in the chair quite a bit today also...good for his lungs. We were looking at a Star Wars Calender he received for Christmas, and he knew every character's name! From c3po to luke, chewbacca to commander palpitine!!
The labs look okay...platlets and rbc's were low, his bili went up slightly, 26 to 28, but he didn't have any procedures yesterday. He won't have any today either. His mouth is mucky from low platlets and he has some skin breakdown, but these are issues we can work with!
Dr.Donato was very positive...she said that while Ryan's liver really controls the medical team, we've done a good job keeping up with it. Our hope and prayer is that Ryan's liver functions have peaked and will continue the downward trend, hence the gvhd and toxic effects will resolve.
Today was Dr.Donato's last day, but she will still continue to be involved with Ryan's photopheresis. Tomorrow, Ryan is going to have an MRI of his spine, photopheresis and possible a bone marrow biopsy. Please pray that these tests go smoothly and show positive results.
Ryan is fighting so hard, as are we all. He has come such a long way! The road ahead is unknown, but I see good things in our future. I know that every day with Ryan is a gift, and I love being around him=)
Thank you for your continued thoughts, encouragment, and prayers! You all are very appreciated.
Love,
Laura and Ryan
Saturday, February 7, 2004 2:44 PM CST Today is Day 52
Today is going good...for starters, Ryan and I both slept pretty well last night! Ryan's numbers look good, and his bili is 26! Yes that's right, 26! A long way from normal, but definetely better. The real test will be to see what Ryan's bili is tomorrow, because he is not having any procedures (pheresis) done today. Please pray that his liver functions continue to go down.
Dr.Donato says nothing is worse, and we will stay the course. She felt that Ryan was stable enough to come off the moniter too! So, now he just has his vitals checked every 4 hours. Dr.Giralt also stopped by to see us yesterday, and is keeping up with Ryan. He says that Ryan, although not without major problems, has beaten all of the odds. He is a fighter!
Ryan is still confused, but responsive and not in pain. We have done his exercises today and hope to get him up in a chair soon. Today is a little quieter since it's the weekend, so we are resting...
Thanks for checking in on us! Please keep those prayers coming.
Love,
Laura and Ryan
A special Thank You goes out to all of the people at Alliance Engineering who participated in the blood drive today organized by Ryan's dad, Bob Petrek and Dorothy Reed of MD Anderson. All of you who put forth an effort to donate are greatly appreicated, please know that your donation will make a difference to Ryan or someone else in need!
Friday, February 6, 2004 4:37 PM CST Good Afternoon! Today is going okay....Ryan is a little confused today and not quite as alert as yesterday. Along with general confusion related to high liver functions, when Ryan gets meds (benadryl, pain meds) he is not able to 'clear' them properly, so their sleepy effects last longer. This is not unexpected, but nonethless frusterating. He will respond, he's just kinda out of it. At least he won't remember any of this. I like to think that if he is sleeping, his body is resting and healing.
His bili was 33 today, so it's kinda hanging around 30sih. Of course, we would like to see it continue to go down. The bili may bounce around for a while though. He got photopheresis done this morning and will have plasma exchange this afternoon. Dr.D was not unhappy, and really had nothing new to report. Stay the course!
PT came in today and really worked Ryan's legs out. He is so debilitated that he can barely move his legs. A very, very long road lies ahead. His arm strength is good though. And his will is strong! Right now, we focus on baby steps and doing something/anything movement wise every day.
So, all in all...things are stable, but we are not without hurdles. Please continue to pray for Ryan's comfort and strength, for strengthing of his lungs, for his body to be rid of toxins, and for his liver to heal. Lord, I pray for Ryan's complete healing here on Earth...I pray for your healing mercy and I thank you for our many, many blessings.
A special Thank You goes out to all of the people at Alliance Engineering who participated in the blood drive today organized by Ryan's dad, Bob Petrek and Dorothy Reed of MD Anderson. All of you who put forth an effort to donate are greatly appreicated, please know that your donation will make a difference to Ryan or someone else in need!
Remember that you can donate blood every 56 days. MD Anderson patients alone need at least 100 units of blood every day! Ryan requires 1 to 4 units a day!
Until next time.
Love,
Laura
Friday, February 6, 2004 2:25 PM CST Good Afternoon! Today is going okay....Ryan is a little confused today and not quite as alert as yesterday. Along with general confusion related to high liver functions, when Ryan gets meds (benadryl, pain meds) he is not able to 'clear' them properly, so their sleepy effects last longer. This is not unexpected, but nonethless frusterating. He will respond, he's just kinda out of it. At least he won't remember any of this. I like to think that if he is sleeping, his body is resting and healing.
His bili was 33 today, so it's kinda hanging around 30sih. Of course, we would like to see it continue to go down. The bili may bounce around for a while though. He got photopheresis done this morning and will have plasma exchange this afternoon. Dr.D was not unhappy, and really had nothing new to report. Stay the course!
PT came in today and really worked Ryan's legs out. He is so debilitated that he can barely move his legs. A very, very long road lies ahead. His arm strength is good though. And his will is strong! Right now, we focus on baby steps and doing something/anything movement wise every day.
So, all in all...things are stable, but we are not without hurdles. Please continue to pray for Ryan's comfort and strength, for strengthing of his lungs, for his body to be rid of toxins, and for his liver to heal. Lord, I pray for Ryan's complete healing here on Earth...I pray for your healing mercy and I thank you for our many, many blessings.
Until next time.
Love,
Laura
Thursday, February 5, 2004 4:08 PM CST Today is a Great Day for us!! First, this is Day 50 after Transplant for Ryan! We didn't expect to still be in the Hospital on Day 50, but I can't really complain. Today, Ryan has eaten almost a whole popsicle...this is the first "real" food other than water he's eaten in 3 weeks!!
He also sat up in the Chair for 30 minutes...huge step!!When he sat in the chair in ICU, it was a special chair and his body was totally supported. Today, he sat in a normal chair and his muscles did the work. His muscles are very weak and his body very stiff, so sitting up is quite an ordeal. We have alot of work to do, but made big strides today. PT and OT as well as neurology come to see Ryan almost every day. We are doing range of motion exercises and Ryan has some special boots, we call them 'ski boots', to prevent foot drop and provide leg support.
Moving around and changing positions will help strengthen Ryan's lungs...allow him to breath deeper, get fluid/secretions out, prevent infection, etc. He is on 4L of oxygen as of now and his breathing is fast, but slightly better. His liver functions went down today, his bili went from 33 to 28. Yahoo! He had photopheresis and plasma exchange yesterday, and photo today. Dr.Donato was very pleased with Ryan's liver funcitons and labs today=)
Ryan is a little confused today, but very responsive and knows what's going on around him. When he was sitting in the chair he was very talky and even smiled!
I never thought I would learn so much about the body, and I do not think that anything could gross me out now. This has been and will continue to be a long journey with obstacles and unknowns, smiles and postive steps. We will just continue to take it one day at a time! Please know we could not do it without each and every one of you and your support and prayers.
Love and Hugs,
Laura Marie
Wednesday, February 4, 2004 11:04 AM CST Hi! Sorry that I did not post an update yesterday, we moved to the 11th floor so last evening was busy. It is great to be up here....now Ryan can get his days and nights sorted out, see out the windows, have more visitors and I can stay with him. Last night, we both slept pretty well.
Monday we had another one of "the talks" with the doctors, just to be sure we are crystal clear about what Ryan would want if things take a turn for the worst. While these talks are completely nerve-racking, I do appreciate all of us and the medical staff being on the same page.
Monday evening Ryan started breathing fast and was quite agaitated. This fast breathing is probably related to his liver functions and being anxious. Giving him calming meds is difficult though, as his liver does not 'clear' them appropriately. Yesterday and today his breating is fairly stable, and he is on nose oxygen. He is just so sensitive.
Dr.Donato feels Ryan is doing okay today. His liver functions are still sky high, but seem to be stabilizing. Monday his bili was 30, tuesday 32 and today 33. They had been increasing 4 to 8 numbers a day. Although we would like to see these numbers go down, Dr.Donato and I decided we would accept these for now. The rest of Ryan's labs look fine, although his platlets are pretty low.
So again, the liver seems to be the biggest concern. Ryan's life really hangs by a thread. He is still stable, and our hopes and prayers lie first with the Lord, for he is the greatest physican and then in photopheresis treatment. He just needs to hang on, and he is! Ryan is so tough and really a talking, moving miracle! Please continue to pray for his comfort, strength, and liver. The power of prayer is allmighty!
I will try and post an update later tonight too.
Love,
Laura
Monday, February 2, 2004 2:41 PM CST Hello! Things here are very stable, except for that liver. Ryan's liver values are still increasing. His skin and eyes are yellow from high bilirubin. He is getting photopheresis today, as well as plasma exchange. We just need his liver to stabilize. We are praying for God's healing light and healing touch!
Physical therapy came in this morning, and had Ryan sit on the bed's edge as well as do some range of motion exercises. This is fabulous progress for us, but this is also very tiring for Ryan, as he is very stiff and weak. I love it when PT comes in, and Ryan knows that "working" will benefit him! Ryan is also talking up a storm today, and I am tying to keep his mind stimulated!
Ryan may be going to a regular room on the 11th floor soon. We will probably know after today. Whatever is best for him, is fine with us...
Thank you again for your prayers, suggestions, and love!
Hugs,
Laura Marie
Sunday, February 1, 2004 6:25 PM CST Hello and Happy Super Bowl=) Ryan is resting now and I am catching up on my computer work. We had a quiet day and all visited on and off. Ryan's little brother, James, went home to Orlando today and back to school. Ryan liked having him here though!
Dr.Donato feels that Ryan is stable or better in all areas, except his liver. His breating, neurological status, ttp, leukemia, lungs, heart, kidneys, skin and gut gvhd are looking reasonably good! Kinda seems like a rip that his liver is so crucial. Dr.D feels that if Ryan's liver functions would just stabilize then the photopheresis could catch up, per se. She feels the problem lies not in the numbers themselves, but in the fact that they are quickly increasing. The risk we run here is liver failure...
Lord, I pray that Ryan's liver gvhd and functions will stablize and cease. I pray for his comfort and I thank you for the miracles you have shown us.
Thank YOU all for your prayers and encouragment. Ryan's prayers are traveling around the globe!
Until tomorrow...
Love,
Laura
Saturday, January 31, 2004 7:23 PM CST Good Evening! Ryan had a goal of staying awake all day, and he did it. He has his days and nights mixed up, so the nurses were trying to remedy that. He is very awake and alert most of the time...today he was sitting in his chair(he sat up about 3 hours today!), looked around the room and said "what do I do now?" He is also very curious about the tubes in and around him...the nurse said I'm going to flush your line and he says very politely, "no thanks." I am trying to briefly explain what's going on here, but I really just want him to focus on healing. From the inside out!!
His liver continues to be the main concern, his bilirubin is still climbing. Yuck! So, photopheresis will be continued every day. Dr.Donato says that his liver just has to hang on long enough for this photopheresis to do its job! His GI gvhd seems to be stable, or perhaps a little better today. Breathing wise he is doing great, he's saturating 95-100% on room air. Yahoo! This really is a huge rollercoaster and balancing act.
Thanks for checking in on us...
Lots of Love,
Laura Marie
Friday, January 30, 2004 7:36 PM CST Another very stable day here is Houston...there is so much hype for the SuperBowl though! Yesterday, I saw George Forman, the grill guy, in the Hospital...he is from Houston and probably in town for the SuperBowl=)
Ryan is doing okay today, but he is nauseated and pretty sleepy. He had photopheresis and plasma exchange today, which he seems to tolerate very well. I spoke with his doctor this morning, and her biggest concern is Ryan's liver and the gvhd involvment. His biliruben(sp?) was 12 today.
From a breathing and neurological standpoint he is doing great...barely using the nose oxygen and his most recent head CT looks better!! He has a little attitude today though, he told me he was under "alot of stress." I love the fact that he is fiesty!
The nurses think Ryan is just a miracle, me too! Nurses in other pods even come over to stick their head in the door and see what quick and positive progress he has made. Like I've said before, I don't know what the future holds for Ryan, but I believe in his recovery and I believe in the power of prayers!! Thank you all for your thoughts and prayers....
Love,
Laura Marie
Thursday, January 29, 2004 11:16 PM CST Prepare yourselves people...Ryan is off the vent and talking!! It is almost strange to hear him talk after 3 weeks of not! I walked in his room about 9am to see him sitting up in bed, hands folded, no tubes except O2 in his nose, and talking like nothing ever happened. Wow! He also sat upright in the chair today for 2 and a half hours...
He tires easily and needs his rest though. The nurses kept him upright all day as it helps the lungs expand and allows Ryan to cough/vomit any secretions out of his chest. Ryan knows where he is, and remembers some things about the past few weeks. So far, he is doing really well off the vent and without a ng tube.
Our biggest concern is this severe gvhd of the gut and liver. It is so nasty! He is still having GI bleeding...that is being treated with various medications and plasma exchange. Some of his liver functions are elevated today and his skin is yellow looking. This is being treated with medication and as of today, a procedure called photopheresis. Photopheresis is where Ryan's blood is taken out with a special machine that filters out the white blood cells. A special drug is then added to the white blood cells, then they are 'cooked' in light. The purpose of this light is to de-activate T-cells, T-cells being what causes gvhd and the liver problems.
I better wrap this up tonight, I will try to update earilier tomorrow. Praise God for the miracles of today...Lord, please strengthen Ryan's lungs and help his bleeding to cease.
Thank you all for the entries and for helping us to not feel alone. A special thanks to those of you whom I have never personally met, I feel as if we are connected in many special and caring ways.
Love and Hugs,
Laura
Wednesday, January 28, 2004 4:46 PM CST Hello Everyone! Not alot new to report today...Ryan is stable and able to communicate, but pretty drowsy from his pain meds. He definetely knows what's going on around him though! He is still having GI bleeding, and that remains our largest hurdle at this time.
Ryan got one unit of blood this morning, and some platlets last night. We have a blood drive organized for next week at Bob's(Ryan's dad) work, and are in the process of setting up blood drives in Orlando. If anyone local to Houston would like to donate platlets (platlets help the blood clot...Ryan usually needs one or two bags per day), please visit www.mdanderson.org/bloodbank for more information. Generally, platlets are needed in greater supply as their shelf life is shorter than blood and they take longer to donate than blood. People outside of Houston---I am still waiting on a blood bank rep. to let me know exactly how you can help benefit Ryan.
Thank you all again for checking in on us daily, it is wonderful to know that so many people care. Thank you for your constant prayers...God is the supreme healer, and he hears every prayer!
Love and Hugs,
Laura Marie
Tuesday, January 27, 2004 11:49 AM CST Early Update today...maybe I can sneak two in! Ryan is doing well today, he is able to communicate...nodding his head, blinking, following with his eyes, mouthing and signaling. He is very aware of what is going on around him! He even told me this morning he was hungry!
We met his new doctor,Dr.Donato, this morning. She is very calm and thinks Ryan's most concerning problems are the gut GVHD and damage, which in turn causes bleeding and inflammation. Also, the blood disorder (TTP) is concerning. Really, the GI tract has caused the most problems from the very beginning of a cancer diagnosis. So, we will stay the course with steroids, medications, fk506, blood/platlet transfusions, and plasma exchange. She thinks Ryan may have some liver gvhd also.
Ryan is getting some tests run right now to check his nutritional status. And his lung x-ray looks stable! Praise God for healthy lungs.
Ryan's parents and I are coordinating blood drives in Houston and Orlando. We are working with the wonderful blood bank staff here, and I will post more information as soon as I confirm when and where the blood drives will be. Most likely, blood collected from Houston will be sent directly to MD Anderson and blood collected out-of-state will be creditted in Ryan's name, then used in the local community.
Reading the guestbook entries gives me the chills...thank you all for passing the word about Ryan on and for sending your prayers!
Love,
Laura Marie
Monday, January 26, 2004 10:45 PM CST Good Night! Ryan had a very stable day today, he was awake and alert quite a bit of the day, but tires easily. The team made a decision to not take the vent out, as Ryan is very weak. We will discuss further options and re-evaluate each day. Ryan understands not to pull at his tubes, so we leave his arm restraints off most of the time.
The biggest concern is bleeding of the GI tract, and the GI department came to see us today. Ryan is receiving blood transfusions every day to stay on top of his loss. He is also receivng several drugs, on of which we call the "lexus" as one shot costs 10,000! He is worth every penny!
We did not get to meet Ryan's new doctor today, but are looking forward to talking with her tomorrow. Cindy, our PA came to visit a minute and say that she thought about Ryan all weekend. Ryan has a very long road ahead of him, and as I've said before I can not predict the future...I do know that Ryan is a fighter, and he has a chance. He and I are both very blessed to have such loving friends and family, such faithful supporters...thank you for your prayers, each one is being heard!!
I am very tired, so I better wrap this up. Until tomorrow.
Love and Hugs,
Laura Marie
Sunday, January 25, 2004 11:28 PM CST Praise God for he is good! Ryan woke up tonight!! We all went back to the Hospital to visit for the 9pm session, and Ryan waved me and Susan(ryan's mom) in from the doorway. He had his head up, eyes open, and waving us in!! I could not even believe it!! Then all on his own thought process, he gave us the thumbs up sign!! He is very curious about his hands, tubes and surroundings...the nurse will have her hands full tonight. He is moving all limbs, answering all questions, and initiating communication! And this morning, we were questioning brain stem damage?! It was so hard to leave...
Ryan's breathing is stable, although he still has the vent in and taking it out will be a challenging step. Possibly tomorrow, I'm not sure. Ryan is still having bleeding in his stool, and this is a major concern. He received some new drugs to help stop this.
Today was Dr.G's last day, and he is still concerned about the big picture, but feels that Ryan is more stable than yesterday. He is puzzled that Ryan's brain and lung scans show nothing conclusive regarding nerve damage or infection. He would also like to wean Ryan from steroids, and allow his newly re-started FK506/immunosupressive to control the gvhd. Dr.G says that Ryan has shown he is "a hell of a fighter" and that family/friend support is probably doing more good than the medical support. Tomorrow, we have a new doctor and we are looking forward to meeting her.
I would like to take a moment to thank my friend Joel for coming out to Texas for the past few days. Joel, you were and will continue to be such a comfort for Ryan and I. I am positive you helped Ryan is many ways, gifting positive energy and God's love to Ryan. Thank you!
Thank you all of your prayers and words of encouragment. While I cannot predict the future, only God has that planned, I am going to live in the present and go one hour at a time on this rollercoaster. Ryan knows he is loved, he is comfortable and he is the strongest person I know. Please pray for him!
Love,
Laura Marie
Saturday, January 24, 2004 6:55 PM CST Rollercoaster, rollercoaster. I called several times to check in on Ryan last night, which resulted in not much sleep, but I knew he was okay. He had a stable night, and the results of his head CT last night looked ok except for some bleeding where the spinal tap was done. I do not know quite what this could cause as far as complications in the future?
Today, Ryan's breathing has been fantastic(for him)...very rhymthic, with less apnea and he is breathing on his own with very little pressure support. He had plasma exchange yesterday, and today his liver functions look better. His vital signs are very stable today!! His skin is healing and his belly is less poofy.
The bleeding issues continue, he had some very bloody stool today and his hemoglobin is constantly checked to see if he needs transfusions. Please go and donate blood or platlets to your local community if you are able, patients like Ryan who require at least one transfusion a day depend on it!! If anyone is AB+ and willing to donate for Ryan, e-mail me at MousieLadd@aol.com and we'll see what we can work out with the blood bank.
The best part of my day is when Ryan woke up..opened his eyes, nodded yes or no, tracked movement...he is very drowsy, but this was great.
Ryan has many issues going on, and it's not that they are untreatable, it's just that treatment is harder with more issues. One drug/treatment harms and helps. We are not giving up yet, but we are being realistic. Ryan is fighting and so are we. He has rested very comfortably all day, and he is not in any pain. He hears our voices and knows that we love him (his family, my family and our friend joel are with me)!!
Please continue praying, we are feeling them. Please pray for Ryan's bleeding to cease, for his lungs to stay strong, for his body to be rid of infection. Please pray for guidance for us and for the doctors, for strength and for comfort.
Thank you so much.
Love and Hugs,
Laura
Friday, January 23, 2004 6:51 PM CST Well, the forward motion of our rollercoaster has halted. Ryan is having trouble keeping a rhymthic breathing rate, and may have some neurological damage. He also has progressive pnumonia, and his bleeding/gvh of the gut and now possibly liver/ttp....I can't go on any more...
Today, we had 'the talk' with our Ryan's primary doctor and assistant. Dr.G feels that Ryan has all of the odds for recovery against him, and that he wouldn't be doing his job if he didn't prepare us for death. The medical team is continuing on 'full press' with treatment as things could turn around, but the doctors are giving us no real hope.
Cindy, our physican assistant, could barely hold herself together during the meeting. I asked her if there was any hope, and she says in her heart I want to tell you yes, but my medical knowledge tells me no. We have formed such a personal relationship with her.
If Ryan's heart stops, I made the decision that Ryan made a long time ago, to not bring him back as the efforts would be futile. Ryan would not want leukemia, neurological damage, or to be kept alive on machines. Why am I even having to make these decisions, I may never understand.
In better news, Ryan's bone marrow and spinal fluid are negative for leukemia. He received plasma exchange today, and is down for a head ct now.
I still have hope for Ryan...he is my life and I cannot imagine it without him. His life is not in my hands, but in God's and God already has Ryan's path chosen. I just do not want Ryan to suffer, or have any more pain. He is a fighter, and I am amazed at the challenges he has overcome so far. I talk to him and tell him I love him and that he's my hero...please pray...
Love,
Laura Marie
Thursday, January 22, 2004 6:50 PM CST Hello to our support team! We are all just so amazed from the entries, love and prayers that fill our daily lives from you all. Ryan is just one person, and he and I are both so humbled from your caring.
Today was another steady day, no new problems and baby steps forward. Ryan is again breathing on his own, with assistance if he "forgets" to take a breath. Tonight the respiratory team plans to see if Ryan can continue breathing on his own. We are slowely working our way to the vent tube coming out. PT also came to work with Ryan today, lifting his arms/legs and getting his blood circulating.
An LP was successfully completed today, although I do not have any results as of now. Ryan's stool seems to have slowed down today and his skin rash is looking much, much better. He is somewhat responsive this evening...for example, if we ask 'do you hear us, can you blink your eyes?' he blinks. We make him blink twice for extra assurance! He knows that Joel is here also.
The road ahead is very long, but we seem to be moving in the right direction on this roller coaster ride! Please continue to pray for Ryan's comfort, for no leukemia cells in his body, and for continued progress.
Lots of Love,
Laura Marie
Wednesday, January 21, 2004 6:47 PM CST Look at those numbers of web hits going up at the bottom of the page! Thank you for all of your thoughts, prayers, love, and encouragment. I know I keep saying that, but truly I do not know how to thank you all enough. You are all so appreciated, even though I do not always have time to send a personal note, please know that Ryan and I as well as our families appreciate you so much. You do not go unnoticed!
Ryan has had a very stable day! He had a bone marrow biopsy this morning and the prelim resutls look good! He is on c-pap now for oxygen support. This means that he is breathing on his own, but the machine alarms if he has apnea(stops breathing) and then it gives him some assistance. Usually, if I hear no breaths, I just give a little oral prompt and he's fine. He will go back on the controlled vent rate tonight to help him rest better, and then go to c-pap tomorrow during the day.
Ryan has also been tolerating lowering his pain meds, which in turn allows him to be more awake. The ultrasound yesterday showed no major abnormalities, and his brain MRI showed some adverse effects from tacrolimus, the immunosupressive drug he is on to prevent gvhd. The tacrolimus has been stopped for now, and the effects are most likely reversable.
The doctors still have some questions, so another spinal tap/LP will be attemped tomorrow with Ryan in a different position. Please pray this goes smoothly, as the sample will help the medical team determine staus of infection, cancer cells, and neurological abnormalities. Please pray that is shows no problems.
I feel that we are moving in the right direction today, and Ryan is resting comfortably. It is so hard to see him like he is, but I really try and focus on the postive and our baby steps. Our of our favorite nurses from the 11th floor came down to visit today, and I so loved seeing her.(Carol, we do miss you though, you are so special to us=) Joel and my mom are here now, and Ryan's family has also been here today. Ryan's dad and my mom gave platlets today here at the hospital! Kudos to them for being successful and helping someone out.
Talk to you soon!
Love,
Laura Marie
Tuesday, January 20, 2004 6:21 PM CST Hello! I am updating a little earlier today from the hospital's computer room. Ryan is still stable, but not very responsive today. The only sign we are getting from him is eye movement...we say Ryan blink if you can hear me, and he blinks. I believe that he is definetely listening!
The 3rd attemped LP was unsuccessful today, so I am not sure what the plan is from here. Ryan had an ultrasound of his abdomen this morning and he is down getting a brain MRI now. When I spoke with Dr.G this morning, he said that today is really a day of gathering information.
Ryan's liver and kidney functions look stable, and he seems to be holding on to his blood/hemoglobin better. He did not have plasma exchange today, and I will have to ask his doctor about further treatments. Geez, all of these questions!
One of our very best friends, Joel, flew in from Florida this morning to spend a few days with Ryan and we are so glad he is here. Ryan's mom and I gave blood today...my first successful time! It is a good feeling knowing that this will really help someone in need.
I will try and update tonight, with some more news. Thank you all again for your support, prayers and for caring.
Love and Hugs,
Laura and Ryan
Monday, January 19, 2004 11:18 PM CST Hello family, friends, and loved ones! Thank you all for your continued support, this is such a long battle and we could not keep our spirits up without your love. Thank you to all of the people at Bob's work, those who I have never met but who care so much.
I am not sure where to start for today's events, but Ryan's main concern seems to be neurological concerns possibly related to his TTP. He has not had any more seizures, however he is not tracking movement with his eyes correctly, his left side is weaker than his right and his right eye is still dilated. We worry about blood clots, strokes and nerve damage.
He was not moving his legs/feet this morning, but by the afternoon he did some some movement improvment. Neurology was in today several times, tried another lumbar puncture and was unsuccessful again. A lumbar pucture (LP) is where they draw out cerebral spinal fluid from the lower back to look for infection, abnormalities, cancer cells and so on. The doctors will try the LP again tomorrow with a camera to assist vision.
Ryan had a CT of his brain done last night, and it came back pretty much inconclusive. It does show some type of swelling, inflamiation, or bleeding. I really do not know what that means at this point. He also had an MRI today of his spinal cord, and the results were poor quality, so no definitive conclusions were made.
Taking him down to MRI is quite a process...all of his iv's, vent, fluid bags, monitors and lines must be moved very carefully. His nurse today was just horrible, and did not make this procedure any easier. I will be making sure Ryan does not have her again! You cancer wives can probably all relate to someone who just doesn't have it together!
On a more positive nore, Ryan's main doctor, Dr.Gawinski, believes Ryan's gvhd is under control.
Ryan seems more agaitated today, but not as responsive as yesterday. I still believe that he is not in any pain and he hears what is going on in the room. I always just talk to him calmly and tell him that I love him. We pray each and every night for his comfort, and for his healing.
Thank you for everything!
Love and Hugs,
Laura Marie
Sunday, January 18, 2004 11:55 PM CST Sorry for such a late update today, this the first chance I've had. I just read through all of the guestbook entries, and cried...what loving friends and family we have. Thank you.
Ryan had a seizure early this morning, probably from his condition of TTP.(TTP stands for thrombotic thrombocytopenic purpura.) TTP causes blood clots in strange places, and since the brain has very small vessels it is a common site for clotting. Presumebably, Ryan has blood clots in his brain that are causing his pupils to be uneven, his seizures, and weakness on his left side. He had one seizure very early and one when I walked in the room this afternoon. It was teriffing to see him twitch like that! However, both seizures were very short and a CT this morning was normal. I do not have any results from his evening CT and an stat MRI was schelduled for Tuesday. The neurology doctors are very involved with Ryan, and are closely following him. Ryan is also on a drug(dilantin) to prevent any more seizures.
His heart rate and blood pressure are trending high, but being controlled with relaxing and medicine. He also had plasma exchange today and will again receive it tomorrow.
Ryan is not having any pain and is responsive to us with shaking his head yes or no, by squeezing our hands, and by opening his eyes. His nurses are fantastic and I feel he is in the very best of care, even though I still hate to leave him. I am so hopeful. I also beleive that Ryan knows he is very loved!
There is one new picture up! Thank you for all of your prayers and your love! You all hold a special place in our hearts.
Love,
Laura
Sunday, January 18, 2004 11:36 PM CST Sorry for such a late update today, this the first chance I've had. I just read through all of the guestbook entries, and cried...what loving friends and family we have. Thank you.
Ryan had a seizure early this morning, probably from his condition of TTP.(TTP stands for thrombotic thrombocytopenic purpura.) TTP causes blood clots in strange places, and since the brain has very small vessels it is a common site for clotting. Presumebably, Ryan has blood clots in his brain that are causing his pupils to be uneven, his seizures, and weakness on his left side. He had one seizure very early and one when I walked in the room this afternoon. It was teriffing to see him twitch like that! However, both seizures were very short and a CT this morning was normal. I do not have any results from his evening CT and an stat MRI was schelduled for Tuesday. The neurology doctors are very involved with Ryan, and are closely following him. Ryan is also on a drug(dilantin) to prevent any more seizures.
His heart rate and blood pressure are trending high, but being controlled with relaxing and medicine. He also had plasma exchange today and will again receive it tomorrow.
Ryan is not having any pain and is responsive to us with shaking his head yes or no, by squeezing our hands, and by opening his eyes. His nurses are fantastic and I feel he is in the very best of care, even though I still hate to leave him. I am so hopeful. I also beleive that Ryan knows he is very loved!
There is one new picture up! Thank you for all of your prayers and your love! You all hold a special place in our hearts.
Love,
Laura
Saturday, January 17, 2004 3:11 PM CST This whole ICU journey is a big rollercoaster ride! Ryan is holding his own, but we had an honest talk with the doctor this morning. He says that Ryan has many odds for survival against him, but we are going for a cure and he will do everything he can to help Ryan. Sorry to be so blunt.
Ryan is stable...his vital and organ functions look good for the most part. He is awake and able to communicate with us, but comfortable and not in pain. This is a comfort to me, and I think we have a proper balance!
Ryan's main problem is GI bleeding. He is getting a new drug as part of a clinical trial to stop the oozing in his GI tract. He is receiving blood and platlets several times a day and his transfusion parameters have been moved to higher numbers. He is also going to have plasma exchange done...where his plasma is removed and someone else's plasma with correct antibodies is given in return. The doctors also think Ryan has a condition called TTP, where his blood does not clot properly and does not clot in the correct places. All of the above therapies will hopefully help this.
Because Ryan is losing so many electrolytes in his stool, his level of a electrolyte called albium is low. Abium is related to volume, so too little albium is causing his blood vessels to be "leaky." Ryan's lungs show something on the chest x-ray, the doctors are trying to determine if this is just fluid or pnemonia. God, I feel like it's always something.
And because of all these complications Ryan is still on the ventilator. This is just fine with me, as his body is not strong enough to breathe conpletely on his own and we do not want him to asperiate(sp?) into his lungs.
See how one thing just snowballs into another? I am so hopeful and Ryan says he is fighting! His life is in God's hands as we know he has a plan for Ryan future already determined. If Ryan went to be with God, I know that he would be okay but I don't know if I would. I can't believe I am even typing this...better go, the tears are flowing.
Please pray for Ryan, for his complete healing here on Earth. Love to you all!
Laura Marie
Friday, January 16, 2004 11:25 PM CST
Part One: Hi Everyone. I'm James, Ryan's little brother. Thank you so much for visiting our web site. I visited him today. Ryan is looking great. He is opening his eyes and looking around the room. Right now he is breathing sometimes on his own and sometimes with the help of the machine. He has sores from gvh complications, but they are scabbing which means his platlets are doing their job. When I walked in Ryan's room and his heart rate went up to 140. The nurses are taking such good care of him. Ryan is in the best of hands. Today he had his restraints taken off. He moved him arms quite well. Keep us in your prayers and thoughts.
Love,
James
Part 2: Hello, this is Laura now. Ryan did have a great day. This morning he was very agaitated, and not happy with us or where he was at one bit. While it just broke my heart to see him so unhappy and hurting, I was glad he was fully awake. The ICU docs are giving him some fentinal for pain and a mild sedation. We are trying to find a balance where Ryan will be able to communicate, but still be comfortable.
He is still bleeding and having blood drawn every 8 hours, receiving platlets about twice a day. No definite word on what is causing the bleeding, but his blood values are holding steady. His skin gvh looks a bit better, it's not spreading! And his gut gvhd seems to also be stable. The doctors are not going to add another drug for gvhd as they want to see how the current drugs work for a few more days. They also do not want to ruin the anti-leukemia effect going on!
Ryan's pulse is jumping around, but this is just due to him being awakened. He got a new bed today that automatically moves him and this will help with preventing skin breakdown and comfort. He is also having him bladder irrigated today to break up any clots and flush it out. The nurses are taking the arm restraints off for short peroids of time which Ryan loves, but have to keep them on most of the time so he doesn't pull his tubes out.
Ryan had lots of visitors today...my mom is here as well as his mom, dad, and brother. Two very wonderful chaplains stopped by and Jennifer and Jay came to visit us also. We learned today that a fellow ICU patient passed away this evening, and I am so sad for this family. They are some of the sweetest people you will ever meet.
I am so proud of Ryan, he is a fighter and I feel we are moving in the right direction! I do not do well with leaving him overnight, but tonight as I was crying and saing goodbye, he very purposefully squeezed my hand and tried to smile...hard to do with tubes in your mouth. He is my hero!
Please pray for Ryan's comfort and strength to fight. Thank you all so much.
Love and Hugs,
Laura Marie
Friday, January 16, 2004 0:07 AM CST Hello out there! Today was a long day...Ryan is much more alert and will 'respond upon command' now. This is great news, as he was schelduled for a brain MRI if he didn't wake up soon. I do not think he will have to have this test done now. He is opening his eyes, blinking, "squirming", nodding his head yes and no, and trying to talk. This sounds like baby steps, but really is huge considering a few hours ago he was completely silent and unresponsive!
He is still bleeding in urine and stool, but yesterday's ct scan did not show anything too obvious. The doctors are waiting on some blood values and test results to determine what exactly is going on internally regarding his blood loss. I feel like we are always waiting on something. He is getting labs drawn every 8 hours so they can keep up with blood and platlet transfusions. Please go donate if you can!
His skin rash looks pretty awful. The positive news is that it hasn't spread. The medical team is going to add another immunosupressive drug to help control Ryan's gut and skin gvhd.
So, to sum this all up...Ryan is in stable but critical condition. The doctors are concerned about the difficulty getting Ryan's bleeding and gvhd under control, but we are not out of options or hope. Ryan is fighting, I know that!
Ryan's mom and brother are flying in late tonight and my mom will also be here tomorrow.
Thank you for your prayers, your thoughts, your offers for help, and your love. You are all appreciated.
Love and Hugs,
Laura Marie
Wednesday, January 14, 2004 2:26 PM CST Hello! Thank you for all of your wonderful prayers and thouhts, your love! I think the only reason I am staying calm is through the grace of God and your support.
Ryan is still in ICU, critical but stable condition. There are several issues going on...he is still on the vent to help him breathe, however he is mostly doing in on his own. Room air is 21% oxygen, and he is on 30%. They will take the tube out when he wakes up from the medicine. Hopefully today! He will try to open his eyes when I call his name and he squezed my hand this morning!
He has large amount of output, so he is receiving lots of fluids, electrolytes, nutrition, etc through his iv's. He has some bleeding in the urine and stool, which is due to low hemoglobin and platlets. This will improve with transfusions, but as I type this he is getting a CT of the belly to see what's going on. A GI bleed is one concern.
The doctors are consulting with specialists to decide what to do as far as gvhd control. The meds he is on right now (steroids, remicade, octritide) are not helping enough, but adding new meds has pros and cons. Ryan also has a rash, which they are trying to determine if it is gvhd.
Please pray for a successful vent removal, and for Ryan's continued healing. Please pray that God guides our medical team to make the best choices for Ryan's care. Thank you.
Love and Hugs,
Laura
Tuesday, January 13, 2004 4:34 PM CST Dear-- All Those Wonderful People Who Love and Care Deeply for RYAN and LAURA,
This is Laura's Mom entering a journal for Laura as she was not able to access the website this afternoon.
Yesterday, Monday January 12, 2004, Ryan was trasfered to the ICU unit at M.D. Anderson because his blood pressure was falling rapidly, he was de-saturating ( low oxygen level) quickly, and he was close to an unresponsive state.
Ryan is stable but critical at the moment. He is currently on a ventilator to help his body rest. The percent of oxygen is being tapered as is the medication Versed which is a sedative.
Ryan is receiving fluids, TPN, Interlipid, and a broad spectrum antiobitic at this time. The source of this crisis is perhaps dehydration from the GVHD or an infection.
Please know all your thoughts, prayers, your guestbook entries, and caring are so much appreciated!
Love, Laura's Mom
Sunday, January 11, 2004 9:59 AM CST Today is Day +25
Today is also the 2nd year anniversary of Ryan's first bone marrow transplant. January 11th 2 years ago, Ryan got a 4 hour infusion of cells to make his new healthy marrow! God, thank you for this donor and for the wonderful people at Shands Hospital that made this possible! We didn't think that we'd be doing this all over again, but I am thankful that Ryan had/has two good matches and wonderful medical and personal support. I look forward to the day when I can report we are 2 years out from this one...what a story we will have to tell!
Our night was rough, but this morning we slept in a little and it's quiet here on the weekend. Ryan's symptoms remain about the same, but the 24 hour nausea med is helping some. He did some exercises yesterday and overall we had a good day. The doctors will be coming in shortly and I have my list of questions to ask them...
Thanks for checking in and for your prayers!
Love Always,
Laura and Ryan
Saturday, January 10, 2004 12:42 AM CST Today is Day +24
Hey! The doctors are going to do an upper scope Monday to determine if these GI symptoms are gvhd related or if something else, such as medication, is the cause. They are also starting Ryan on a continuous infusion of zophran, an anti-nausea medicine.
Today we are doing our best to keep Ryan moving, so he doesn't get weaker from in-activity. The physical therapist was in this morning and she gave us some exercise ideas and goals. Ryan is very determined to keep moving forward.
Thanks for checking in! Enjoy the weekend.
Love and Hugs,
Laura and Ryan
Friday, January 9, 2004 4:04 PM CST Today is Day +23
Today is another rough day! This is No Fun! Ryan biggest complaint now is nausea, it is fairly constant and while the nausea meds do provide some relief, it seems to be short-lived. Ryan is being very still, because it seems with movment he vomits.
The doctors are consulting with the pharmacist to see about the best nausea relief. They are also planning on doing another scope on Monday to see exactly whats going on in his gut. His symptoms are most likely gvhd.
So, Dr.Ueno is making a decision....one, to continue with the currect course (steroids, remicade, another med for diarh. and current nausea meds) or to add/change more drugs specifically for gvhd. Thank goodness there are drugs for almost everything. And thankfully Ryan is not having any pain...
We are just continuing to think that some gvhd is good because Ryan's new donor cells are recognizing his cells and his leukemia cells as bad!
Please continue to pray for Ryan's strength, motivation, and resolution to these uncomfortable side effects! Thank you...until tomorrow...
Love,
Laura and Ryan
Thursday, January 8, 2004 11:25 AM CST Today is Day +22
Well, it's one step forward and two steps back here. Yesterday Ryan was just feeling blah, and we thought that his blood transfusion would perk him up some. Today he is still light-headed and nauseus(sp?). He is also vomitting and having tummy troubles, although definetely not as bad as before.
This could be gvhd or medications or just that his body needs to rest and slow down some. The doctors are not overly concerned, as these are common problems...but they will keep a close eye on things. They are going to add a new medication for the gut gvhd and start some meds for nausea on as needed basis.
His counts are wonderful, wbc up to 5.8 today! And his liver and kidney functions are very good, so that's a plus. He is getting his IVIG now, and some magnesium. I am so thankful that his line has caused no problems...it is so important for all of these IV drugs!
Today we are going to rest as sleeping soundly here is tricky at night. It is very foggy here today, so strange as I can usually see for miles out our window. There is a discharge class today, guidelines for when Ryan is discharged, so I will be going to that this afternoon!
Thank you for all of your prayers and thoughts...
God Bless!
Love,
Laura and Ryan
Wednesday, January 7, 2004 11:45 AM CST Today is Day 21
Wow! Over 6000 hits on this page...you all are amazing! Today is a gloomy, cold day in Houston so I tell Ryan he's not missing anything outside!
We had a pretty good night...after yesterday's bolus of steroids, Ryan had no problems with his stomach yesterday! I decided that steroids are both amazing and wicked. The doctors feel that once his gut gvhd is under control with the remicade and steroids, they will taper the steroids and keep the remicade. It is a tricky balance!
Ryan is eating pretty well and he is hungry! Last night he worked on some chicken and mashed potatoes. Today, his hemoglobin is low so he will receive a unit of blood and that will help his energy level.
Getting better is a slow process, but day by day we will go! Talk to you all soon!
Love and Hugs,
Laura and Ryan
Tuesday, January 6, 2004 10:48 AM CST Today is Day +20
Wow! Day 20 Already! Ryan's counts are going great...wbc at 2.3, reds at 9.2, and platelets at 70 this morning. The wbc will jump around some still, but it is headed in the right direction!
Ryan's gut gvhd (diarrhea) is no better, and possibly worse in terms of quanity so the plan has changed. Ryan will still get his influxemab (Jodi this is also called remicade!) on time per week to help control the inflamation. The doctors are going to up his steroid dose again and also put him on a special diet. The new diet will temporarily limit fiber, fat and dairy produts.
Houston has turned cold again....70s to 40s in one day. Craziness! Thank you for your prayers and thoughts!
Lots of Love,
Laura and Ryan
Monday, January 5, 2004 2:48 PM CST Today is Day +19
Not much new to report today! Ryan is feeling tired, but okay and we've done 2 small laps so far! He has started a daily blood pressure medication to control his BP while he is on the immunospuressive drugs.
His liver functions are improved today, so the doctors have no further plan of action other than to monitor them closely. His GVHD is the same, but we expect it to improve in the next couple of days...some of this GVHD is good for the GVL effect.
Ryan is getting some platlets now...his white count was 1.7 today! Go new cells!
Thanks for checking in everyone! Have a nice evening!
Love,
Laura and Ryan
Sunday, January 4, 2004 3:08 PM CST Today is Day +18
Hello! Today seems to be flying by...the doctors were in late this morning and they are watching a couple of things. Ryan has been started on a new antibody for his gut GVHD, as the doctors suspect his upper as well as lower gut are affected from the symptoms he describes. This new med is not a steroid, and should target inflammation in Ryan's gut.
Ryan's blood pressure has also been running high. This is probably a side effect of his tacrolimus, an immune suppressing drug he continuousely receives. They will watch the BP for a couple of days to determine if BP medication is necessary. Ryan's liver functions are also elevated...could be GVHD again or more likely all of the meds he is receiving. Another thing the doctors will keep a close eye on!
Dr.Ueno really wants Ryan to try and eat more if possible. We are working on this as well as walking and doing simple exercises. He is so weak, but the longer his muscles lay still the harder it will be for strength to return.
I went to "catheter care" class this afternoon to learn how to care for Ryan's line when he is discharged. Soon, I will demonstrate on Ryan in front of a nurse to make sure I pass! I love being back in school again......
Please keep Ryan in your prayers and thought for motivation, a positive attitude, strength and continued remission!
Love and Hugs,
Laura and Ryan
Saturday, January 3, 2004 9:36 AM CST Today is Day +17
Hello There! Hope you are having a nice weekend. A couple of people have asked about what GVHD is so I thought I would explain some...
Graft vs. Host Disease, GVHD, is a common complication of allogenic bone marrow transplants. The graft is the donated marrow and the host referrs to the transplant patient.(Allogenic means that the stem cells come from a donor.)
In GVHD the donor's bone marrow recognizes the host's body as forgein and attacks the patient's organs and tissues. GVHD commonly affects three areas---the skin, gut and liver. For example, it might cause a skin rash, diarrhea, or jaundice. GVHD impairs a patient's ability to fight infection as well as the proper function of whatever organ/tissue is affected. GVHD is classified as acute or chronic, with acute occuring within the first 100 days after transplant and chronic occuring after those 100 days. Stages of GVHD range from mild/grade 1 to life-threatenting/grade 4.
Ryan will be on immunosupressing drugs to supress his host immune system for several months. This prevents some GVHD, as well as allows his new stronger donor immune systme to take over. The flip side is that his immune system will be weak for months and maybe years. GVHD is a blancing act...studies have shown that some GVHD is good because when the graft cells recognize host cells as forgein, the leukemic cells will also be recognized as forgein and destroyed. This is referred to as GVL, graft vs. leukemia. But, GVHD must be controlled to prevent damage to the patient body.
Currently, Ryan has skin and gut GVHD which are being controlled with medication, namely steroids.Sorry if I have totally confused you with my crash course on GVHD....hopefully this helps understanding!!
So, we had a good night last night. Ryan is starting to eat some...bites here and there, which is good progress. Yesterday, he also went down to the gym to do the bikes and some sitting and standing exercises. Today he is going to get a unit of blood, so that will help perk up his energy level! We hope to have an eating, drinking, walking weekend=)
Thank you all so much for checking in on us.....this web site has been a wonderful blessing and I feel like I have a whole new cyber family!
Until tomorrow's update....
Love,
Laura Marie
Friday, January 2, 2004 11:46 AM CST Today is Day 16
Hey All=) Today is going well.....the doctors were in early this morning. Dr. Ueno is pleased that Ryan's gut and skin GVH are responding to the steroids, and they will be cutting back steroid dosage today. Ryan's pca/pain pump is now gone, and he just asks for pain meds if needed.
He is trying to eat and drink more, but I think it will be a while until his stomach cooperates. Little by little. It has been so long since he ate solids and plus getting pumped full of IV fluids/drugs, his system has to re-intro to food. He is going down to the gym later this afternoon...
That's about it from here! Talk to you soon.
Love,
Laura and Ryan
Thursday, January 1, 2004 1:03 PM CST Today is Day 15
Happy New Year!!! Wishing you all a happy and healthy 2004!!! Ryan and I are still working on our resolutions...the biggest one will be for Ryan's healing. 2003 will defenitely be a year to remember and also a year to forget...I don't know which one to do sometimes. Some frightening things have happened, but at the same time Ryan and I have met some incredible people, had some wonderful experinces, and enjoyed the simple moments of life!!
In medical news, the biopsies on Ryan's gut and skin both came back as positive for GVHD. We were surprised and Dr. Ueno was a bit surprised also! Dr. Ueno is treating Ryan's gut with low-dose steroids until the diarehea improves. Steroids can have some unpleasant side effects, namely making your weak, so he will not be on them any longer than necessary. We have some creams to put on Ryan's skin blistering and it is looking better.
Overall, he is looking and feeling better.....he is hungry, but eating will be a very gradual process. Oh! Yesterday, Ryan went down to the gym and did both arm and leg bikes for 10 minutes! This is a big accomplishment, and we will be really trying to walk and stretch every day.
Well, I must get going........
Love,
Laura and Ryan
Wednesday, December 31, 2003 8:46 AM CST
Today is Day 14
Hello, hello! I am sorry it's been a few days since I updated last....things in our crazy little world got a little crazier when I started running a low grade fever Saturday night. I think I was just exhausted, but since I could not risk giving anything to Ryan with no white count, I left and spent 3 nights at home. His mom came in and stayed with him for those 2 days! I am feeling better now, but I guess I will have to try and nap more. Our cat was in heaven with me being home!!!
There are several things going on with Ryan. First, he has engrafted!! His white count is slowly rising, so his new marrow has taken hold and started to make cells!! This is great news. Second, although he still has a sore throat and diarrea, it seems to be better, so that's on the upswing. The doctor team decided to do a GI scope yesterday to rule out gvh in the intestines, and although the offical results are not back, the GI doctor thought all looked normal. Third, Ryan has some blistering on his left side, which looks nasty but he says it doesn't hurt....so dermatology came and biopsied that area to again rule out gvh and infection.
With an unrelated 8/10 match, the doctor team wants to err on the side of caution against gvh, although some gvh is desirable to create a gvl (graft vs leukemia) effect.
Thank you all for checking in on us, seeing new and previous visitors really brightens our day and keeps us going! Thank you for taking the time to pray and think about us, you are appreciated=)
I will update soon!
Love and Hugs,
Laura and Ryan
Saturday, December 27, 2003 12:37 AM CST Today is Day 10
Hello, hello! We had a pretty good night, Ryan seems to be less "loopey" and able to rest better. We were up a couple of times with tummy issues, but like I said as Ryan's counts start to improve his mucositis and GI irritation will heal.
He is still running a fever, it seems to be rising....it topped at 101.9 in the night. Needless to say, this is making him feel tired and overall yucky. So, Dr. Ueno added another drug (anti-fungal)on top of the antibiotics he is already receiving and will wait another 24 hours to see what happens. It could be infection, although there is no apparent source, or is could be Ryan's white blood cells rising. They are .3 today, up from .1 and .2---we are holding our breath, as this number has been known to bounce around. Fevers are not unexpected as with no infection fighting cells, the body raises its temp to protect itself. But, fevers can be very serious for the same reason...no infection fighting cells. We are keeping a close eye on it!
Ryan will be getting platelts this afternoon, and PT is going to come in and do some exercises. Gotta keep him moving! Thank you all for your prayers and support...we will keep going one day at a time!
Love and Hugs,
Laura and Ryan
Friday, December 26, 2003 12:11 AM CST Today is Day 9
Thanks for all of the Christmas Wishes you Sent to Us!!! Our night went pretty well... Ryan is still my "loopy" one, but the pain meds seem to be doing their job. The nurse aide came in to do vitals last evening, and she commented that she liked Ryan, he was a good patient. Ryan promptly responded that he had a girlfriend.....he is very funny and I just have to keep this light-hearted because I know he will not remember any of this. He was even signing theme songs to commercials last night! And he plays video games in his sleep too!
We are still dealing with GI problems, but as the doctor says time may be the best medicine. Dr. Ueno feels Ryan is stable! His labs look great, and now we just anxiousely wait for him to engraft (his new marrow to take hold). Ryan is still running a very low grade fever, so Dr. U is going to give it one more day and then add some new drugs for more coverage against fungal infection. And, his hair is falling out....the least of our worries.
We are keeping busy.......
Lots of Love,
Laura and Ryan
Thursday, December 25, 2003 12:54 AM CST Today is Day 8
Merry Christmas All=0 Hope Santa left your favorite presents under the tree, and you enjoy(ed) today with friends and family...
Our hospital room is decorated with a tiny tree, santa hats, our stockings, and little things here and there...so we are trying. Ryan's family is coming in this afternoon so we can open a couple of presents and visit....
In medical news, I think this chemo has just royally messed up Ryan's whole GI tract...not to be gross...once his counts recover, it will heal but until then the doctors are trying to balance his pain and tummy meds. They are running some blood tests to make sure Ryan's GI problems are from chemo only, as opposed to other infections, inflammations, etc. We are hanging in there!!
Today, a man stopped by to visit with all the patients on the floor...he was 10 years post BMT. What a picture of health he was...pretty inspiring!!
Love,
Laura and Ryan
Wednesday, December 24, 2003 8:25 PM CST MERRY CHRISTMAS EVE!!! MAY THIS NIGHT BE ONE OF REMEMBERING OUR LORD AND SAVIOUR'S BIRTH...HAPPY BIRTHDAY JESUS! MAY YOUR NIGHT BE BLESSED WITH WARM THOUGHTS, AND SANTA GIFTS!
In medical news, Ryan had a pretty good day...his pain is under control, but the pain meds are making him really dopey. He is having very vivid dreams, and talking out loud. He associates thoughts, just not always in the correct mannor......we may lower his pain med dose tomorrow, or his body might adjust to it a little more.
We are waiting to open gifts.......this Christmas will be one we remember....The greatest gift I could ask for is health....and Ryan's new stem cells are a true gift!
Merry Christmas and to All a Good Night....
Bless you!
Laura and Ryan
Wednesday, December 24, 2003 8:19 AM CST Today is Day 7
Just wanted to say that the night went okay...Ryan is talking alot in his sleep....it's kinda funny! He is a bit doped up on pain and nausea meds, but I'd rather him talk funny than hurt and vomit...
The doctors should be making rounds soon, and we will talk to them about all of our issues yesterday! Our friends Jay and Jennifer got admitted last night for a fever, so we will all be here over Christmas......I can't believe that tonight is Christmas eve!
Love,
Laura and Ryan
Tuesday, December 23, 2003 5:08 PM CST Update 2 for Today (Day 6):
So, it's been rough....Ryan fell this morning...lost his balance and was really groggy from a new nausea med. He is okay, but hit his back and now has a "boo-boo" there. With low platlets, his risk of bleeding internally is higher, so all of these tests have to be done afterwards. They look fine, he fell "right" I guess. He is just weak from low counts, and not much food/drink......He is on fall precautions now....
As if that wasn't enough, he started running a fever this afternoon, not super high but since he has no way to fight infections.....measures need to be taken quickly. Like IV antiobiotics, blood cultues, chest x-rays.......yucko! Bathroom issues too........
We are playing Christmas music softly...trying to calm his body down....keep praying!
Love,
Laura Marie
Tuesday, December 23, 2003 9:29 AM CST
Today is Day 6
Well, the days continue to be rough....Ryan's throat is still sore, and swallowing food/drink is pretty tramatic. The doctors were just in and they are going to switch pain meds for the throat, as we think the pain medicine is making Ryan have constant nausea/vomitting. They are also playing with the nausea meds to figure out what works best.
I can not even imagine feeling queasy all of the time! All of his pills (except one) have been switched from oral to IV, so that will definetely help.
His counts are almost at the bottom, his white count is .1 today! This may be as low as it goes, or it may go to 0.0 or stay at .1 for a few days. This is expected...
Ryan continues to get medicines to prevent Graft vs. Host disease and to prevent infections. Keep praying for Ryan to be pain free and for his healing.....and for his new stem cells to grow strong and healthy!!
Love and Hugs,
Laura and Ryan
Tuesday, December 23, 2003 9:29 AM CST Today is Day 6
Well, the days continue to be rough....Ryan's throat is still sore, and swallowing food/drink is pretty tramatic. The doctors were just in and they are going to switch pain meds for the throat, as we think the pain medicine is making Ryan have constant nausea/vomitting. They are also playing with the nausea meds to figure out what works best.
I can not even imagine feeling queasy all of the time! All of his pills (except one) have been switched from oral to IV, so that will definetely help.
His counts are almost at the bottom, his white count is .1 today! This may be as low as it goes, or it may go to 0.0 or stay at .1 for a few days. This is expected...
Ryan continues to get medicines to prevent Graft vs. Host disease and to prevent infections. Keep praying for Ryan to be pain free and for his healing.....and for his new stem cells to grow strong and healthy!!
Love and Hugs,
Laura and Ryan
Monday, December 22, 2003 8:46 AM CST Today is Day +5
Well, yesterday ended up being a rough day! Ryan vomitted a couple of times...and while they do have meds to help with nausea, we seem to have no warning. His appetite is in turn pretty poor, but he is sipping and trying bites of soft things. This is important as it keeps the stomach and digestive tract moving....but eating/drinking should not be forced. A tricky balance!
The doctors think Ryan is doing just fine, his counts have almost hit bottom ( I don't have the ones from today yet) and all of his labs and tests look good. And his pain is controlled.
We did walk yesterday...watched a couple of movies...visited with Ryan's family in the evening. Today, I am going to make some phone calls and go down and get my blood typed to see if I can donate for Ryan. I will update later tonight or tomorrow morning....
3 Days till Christmas!!!
Love,
Laura and Ryan
Sunday, December 21, 2003 9:49 AM CST Today is Day 4
Hello to All! I just realized that we have been here almost 2 weeks! Ryan is feeling probably the worst he's felt today...but he just keeps going! Nothing too major, just tired and weak as counts come down and chemo takes full effect.
The doctors ordered a pump to continously infuse pain meds, it is helping with pain control in his throat but makes him sleepier. His counts are still dropping...wbc at .2, reds at 9.8, and platlets at 15. I think that his transfusion parameter is 15, so he will probably be getting one today.
The doctors say just keep on doing what you're doing! Thanks for all of your support...hope everyone has their Christmas shopping done=)
Love Until Next Time,
Laura and Ryan
Saturday, December 20, 2003 8:48 AM CST Today is Day +3
Hello There!! Things continue to go really well here...yesterday Ryan began to have mouth/throat pain and soreness/rawness. This is an expected side effect of chemo, but not welcome nonetheless. He is on some pain medicine every few hours which seems to be helping. He is still eating very well...but we are trying soft foods, high-calorie, supplements, and playing with tastes. The nutritionist came to visit yesterday and shared some tips with Ryan!
His blood counts have almost bottomed out, with a wbc of .4, reds at 9.8 and platlets at 60. This means he is very suspectible to infection, anemia, and bleeding. Preventions like antibiotics and transfusions are taken, but the doctors and I are all watching closely.
Ryan walked with me and again with PT yesterday, plus did his exercises. One thing MD Anderson does an excellent job of is focusing on the "whole" person...(aunt b i know you applaud this). Everything physical, emotional, practical is covered.
Late afternoon, I ran home to take a shower and run a load of laundry...I got back, we had dinner, and suddenly the day was over. They are going fast!
Today, we plan on resting and reading some...finishing our Chrismtas shopping via internet too! Thank you all for coming to check on us and for your continued supprort, spreading of our story, and prayers.
Love and Hugs,
Laura and Ryan
Friday, December 19, 2003 8:35 AM CST Today is Day +2
Well, yesterday went very smoothly! Ryan's blood counts are steadily dropping, and he feels tired. His mouth is very dry and his tastes are wacko! We can deal with that though! He has the hiccupps frequently, but whenever he gets steroids he gets hiccupps!! Who knows?!
Yesterday the doctors came by in the morning, and we found out one of the doctors loves Disney. Since we live next to Disney and Ryan worked there for a while, it was something to chat about.
It seems like between walking laps, meals, mouth care, eye care, breating treatments, showering, cleaning the room, doctors and nurses coming in the days are going fast. That's okay though! Really though this room and hospital are not a bad place to be!! Actually, our floor is part of the preliminary winners of the hospital-wide decorating contest=) It's themed Chrismtas around the world and looks really cute!!
Thank you for all of the prayers and just for taking the time to check in on us!
Love and Hugs,
Laura and Ryan
Wednesday, December 17, 2003 8:20 PM CST Today is Day 0....Ryan's Re-Birthday
Grow Cells Grow!! Ryan had his transplant at 6 pm tonight with no complications! It took about an hour to complete. We learned that his donor is blood type AB+, and since Ryan is currently O+ he will convert to AB+. Pretty wild!
The donor did donate pbsc instead of marrow, and the pbsc usually engraft faster. His counts are steadily dropping and he will be at a 0 white count (white blood cells are infection fighters) for a few days, then the new cells will begin to grow and his counts will rise. In the meantime, he will be suspectible to infection and also graft vs. host where the new cells and Ryan's old cells clash.
Today was both exciting and nerve-racking, but it was a success. The docs were so impressed at how good of shape Ryan was going into this! He even did PT today...he is my hero and I am so proud of him!!
We did not sleep well last night, so I think I will wrap this up and call it a night. Thank you all for praying and sending good vibes, I just cry when I read all of your thoughts in the guestbook!!
Lots of Love,
Laura and Ryan
Tuesday, December 16, 2003 9:50 PM CST Today is Day -1
Well, Ryan's new marvolous marrow should be on its way now. The transporter is probably on a plane now, gaurding that marrow with his/her life I hope! Lord, please bless our donor. We did find out that we can send an anonymous Thank You card to the donor...so that was good news!
Today was a quiet day, the doctors think Ryan is doing great. His mouth is very dry, but that is a common side effect of chemo. His tastes are also changing, and most things taste "yuck" now but we are playing around trying to find the texture/taste/food that works the best...so far it's yogurt and pudding. I know it's frusterating for him though.
The blood bank people stopped by this afternoon, and gave us some info about how Ryan's family/friends can donate blood and platlets for him. Right now his counts are pretty high, but they are steadily dropping and he will need transfusions.
The actual transplant should be tomorrow around 5pm! Thank you so much for your prayers, notes, and love. Truly, it is such a comfort to know so many people care.
Good Night!
Laura and Ryan
Monday, December 15, 2003 8:32 AM CST Today is Transplant Day -2
Good Morning! Only 10 days till Christmas!! Yesterday was another busy, but good day for us. Ryan got 2 chemos, his antibody and also started FK-506. FK is a drug used to help prevent GVH (graft vs. host disease) and to further supress the immune system. It is on a very slow continuous drip.
Ryan rested most of the day as the pre-meds make him sleepy, but we did go for a couple of walks around the floor and I must say that I think his balance/walking is improving. His weight is going up a little too, granted some of it is water, but the up is wonderful!
Ryan's parents and his brother James arrived from Florida last evening, and came up to visit us. So, all in all things are going great and I pray for smooth days ahead.
I will update tonight or tomorrow morning! Thank yous go out to all of you.
Love and Hugs,
Laura and Ryan
Saturday, December 13, 2003 9:44 PM CST Wow, what a day we have had! Ryan got 2 chemotherapies today, one that he's had for the past few days, and one new one. This new chemo required him to let ice melt in his mouth for an hour to prevent mouth sores...anything to keep that mouth feeling good though! He also got ATG today, an antibody to further suppress the immune system. With all of these drugs, he has to get pre-meds to prevent reactions so he had a lot of drugs in his system!
The doctors are not sure why Ryan spikes low-grade fevers here and there, but are watching him very closely and all of his blood cultures came back negative for infection. Otherwise, he feels pretty good.....eating well and up walking around.
Sometimes I get so caught up in Ryan and things here, that I don't focus on why this is all possible.......first, the grace of God and second, the donor. The donor is undergoing pain and time away from his life to help save a life and give a second birthday!! Lord, please bless this giving person and keep him safe and healthy, please show him our appreciaton.
Thank you for all our your prayers and words of encouragment!
Love,
Laura and Ryan
Friday, December 12, 2003 11:57 AM CST Hello There! Here's the update.....Ryan started running a fever last night, but the good news is that it went away as fast as it started and he remains fever-free today. Fevers can be very serious in immunoscompromised patients as a fever usually signals infection. So, blood cultures were drawn and antiobiotics started as a precaution.
His counts are still high, but will be dropping soon. The chemo is making him feel tired and his skin flushed, but no major problems to report.
We did find out that the Transplant will be Wednesday the 17th instead of the 16th because the courier, and hence the stem cells, will not be here until them.
I will update soon!
Love and Hugs,
Laura and Ryan
Thursday, December 11, 2003 12:14 AM CST Hello!! Today is Day -5 on the Transplant front. The daily count will go -4, -3 and so on with Transplant Day being Day 0. The next 100 days are the most critical time and we will be in the Houston area for those 100 days!
After doing lots of paperwork last Tuesday, we checked in about 6pm. Ryan's room is huge.....with an entire wall of windows, a walk-in shower and plenty of cabinet space. There is a pull-out bed for me too. At night we can see the cityscape of Houston and its lights, and during the day we can see downtown and, really for miles! We are in process of decorating the room for Christmas=)
Tuesday Ryan started fluids, and Wednesday and this morning he got one of the two chemos he will receive called fludarabine. The nurses are also very closely monitoring all of his meds, blood needs, electrolytes, and fluids. They encourage the patients to be very active....walk around, eat, etc. The doctors come around once a day, and are very confident and very eager to listen!
The neuro doctor also came up yesterday. He thinks some of Ryan's nerve/muscle problems may be related to disease. Therefore, we will just keep doing what we are doing as far as physical therapy and meds.
Thank you all so much for the guestbook entries, prayers and thoughts! I will update tomorrow.....
Love and Hugs,
Laura and Ryan
Monday, December 8, 2003 8:46 PM CST Good Evening! First, thank you everyone for signing in to the guestbook and for your thoughts, prayers, and various forms of support! Ryan and I both appreciate your caring.
Today was a long day and I know tomorrow will be even longer. Ryan had labs done today and an EMG test. The EMG measures nerve and muscle function using electrodes and tiny needles. Needless to say, it is not a comfortable procedure! But, hopefully, this will give the doctors more of an idea what is going on with Ryan's muscle weakness.
Tomorrow morning we meet with the BMT coordinator and PA before Ryan's line is put in. He will be admitted tomorrow, although I am not sure that time yet. We will have the computer with us...so I will keep you all updated=)
Tonight we drove around with the windows open and looked at some Christmas lights....it was refreshing!!
Take Care!
Love,
Laura and Ryan
Saturday, December 6, 2003 11:36 AM CST Hello! Well, today is a day off and we even got to sleep in=) Yesterday Ryan had PT and an MRI. We have been able to do all of Ryan's cat scans and MRI's without contrast, so that was a lucky break. Our PT is so wonderful, and so encouraging to both of us. We are trying to do as many at-home exercises and stretching as possible.
The weather is chilly here, down to the 30s at night, so we will probably be staying in today!! It's nerve-racking and exciting at the same time to think Transplant is coming so soon. One more thing I wanted to explain...a bone marrow transplant, also called stem cell transplant, is more like a blood transfusion than a surgery. When Ryan gets his donor cells, they will be infused through a line (catheter) in his chest and the stem cells will circulate through Ryan's body. Stem cells know where to go, and will engraft(take hold) to begin producing new white blood cells, red blood cells, and platlets. It is truly an amazing process!
Love,
Laura and Ryan
New pictures have been added to the photo page!
Thursday, December 4, 2003 8:28 PM CST
UPDATE: Ryan's transplant is approved! Dr.Giralt "worked his magic" with the insurance company and all is okay now. So Ryan will still be admitted on Tues the 9th.
Thursday, December 4, 2003 11:57 AM CST
Hello, hello!! Thanks to all of you who are checking in to the web-site! We have had quite an eventful past couple of days getting ready for the Transplant....
Tuesday, Ryan got his blood drawn (all looks good!) and we saw Dr.Thomas for a follow-up visit. After seeing Dr.T Ryan got a chest-x-ray and then we went up to see the Eye Doctor. Lots of tests, scans, blood draws, need to be done as a "work-up" to transplant, and these were just some of them.
Wednesday, we visited the Dentist, Dr.Giralt's office and a Neurologist. The Dentist was just amazed at how good Ryan's teeth look and spent an hour with us explaining mouth care and how to best take care of the mouth pre, during and after transplant. He was an amazing doctor!! Just as amazing was the Neurologist...we talked with him for an hour and a half!! He seems to think Ryan has two issues going on.
The first being neurological---Ryan's feet and hand numbness are most likely caused by the vincristine and is temporary as we thought. Ryan's numbness and tingling is definetely improving!!
The second issue is muscle weakness---most likely caused by steroids, weight loss, and general treatment. This too is most likely temporary. Tomorrow Ryan will be fitted with a sort of brace to help support his foot to aid in walking. He will also be having an EMG test to further investigate muscle problems. We were so glad someone was addressing and trying to remedy these problems.
This week we also learned that Ryan's insurance is now denying covering the transplant. Shock right?? Apparently, the transplant was approved...but now the protocol has changed and the insurance is considering the transplant experimental. The medical and finicial staff at MD Anderson has been diligently working to sort this out with the Insurance, as have we. This is just not a good time for denial, as no approval means no admission and no transplant in the next couple of weeks. So, we are trying to communicate quickly and professionally...
Today Ryan had a couple of pulmonary tests and a cat scan, but we got home a couple of hours ago, so it was a short day. Please pray for Ryan's health and a resolve to the insurance situation. I will update tomorrow, or if I find out any big news!
Love and Hugs,
Laura and Ryan
Friday, December 5, 2003 4:10 PM CST New pictures have been added to the photo page!
Thursday, December 4, 2003 8:28 PM CST
UPDATE: Ryan's transplant is approved! Dr.Giralt "worked his magic" with the insurance company and all is okay now. So Ryan will still be admitted on Tues the 9th.
Thursday, December 4, 2003 11:57 AM CST
Hello, hello!! Thanks to all of you who are checking in to the web-site! We have had quite an eventful past couple of days getting ready for the Transplant....
Tuesday, Ryan got his blood drawn (all looks good!) and we saw Dr.Thomas for a follow-up visit. After seeing Dr.T Ryan got a chest-x-ray and then we went up to see the Eye Doctor. Lots of tests, scans, blood draws, need to be done as a "work-up" to transplant, and these were just some of them.
Wednesday, we visited the Dentist, Dr.Giralt's office and a Neurologist. The Dentist was just amazed at how good Ryan's teeth look and spent an hour with us explaining mouth care and how to best take care of the mouth pre, during and after transplant. He was an amazing doctor!! Just as amazing was the Neurologist...we talked with him for an hour and a half!! He seems to think Ryan has two issues going on.
The first being neurological---Ryan's feet and hand numbness are most likely caused by the vincristine and is temporary as we thought. Ryan's numbness and tingling is definetely improving!!
The second issue is muscle weakness---most likely caused by steroids, weight loss, and general treatment. This too is most likely temporary. Tomorrow Ryan will be fitted with a sort of brace to help support his foot to aid in walking. He will also be having an EMG test to further investigate muscle problems. We were so glad someone was addressing and trying to remedy these problems.
This week we also learned that Ryan's insurance is now denying covering the transplant. Shock right?? Apparently, the transplant was approved...but now the protocol has changed and the insurance is considering the transplant experimental. The medical and finicial staff at MD Anderson has been diligently working to sort this out with the Insurance, as have we. This is just not a good time for denial, as no approval means no admission and no transplant in the next couple of weeks. So, we are trying to communicate quickly and professionally...
Today Ryan had a couple of pulmonary tests and a cat scan, but we got home a couple of hours ago, so it was a short day. Please pray for Ryan's health and a resolve to the insurance situation. I will update tomorrow, or if I find out any big news!
Love and Hugs,
Laura and Ryan
Thursday, December 4, 2003 8:28 PM CST UPDATE: Ryan's transplant is approved! Dr.Giralt "worked his magic" with the insurance company and all is okay now. So Ryan will still be admitted on Tues the 9th.
Thursday, December 4, 2003 11:57 AM CST
Hello, hello!! Thanks to all of you who are checking in to the web-site! We have had quite an eventful past couple of days getting ready for the Transplant....
Tuesday, Ryan got his blood drawn (all looks good!) and we saw Dr.Thomas for a follow-up visit. After seeing Dr.T Ryan got a chest-x-ray and then we went up to see the Eye Doctor. Lots of tests, scans, blood draws, need to be done as a "work-up" to transplant, and these were just some of them.
Wednesday, we visited the Dentist, Dr.Giralt's office and a Neurologist. The Dentist was just amazed at how good Ryan's teeth look and spent an hour with us explaining mouth care and how to best take care of the mouth pre, during and after transplant. He was an amazing doctor!! Just as amazing was the Neurologist...we talked with him for an hour and a half!! He seems to think Ryan has two issues going on.
The first being neurological---Ryan's feet and hand numbness are most likely caused by the vincristine and is temporary as we thought. Ryan's numbness and tingling is definetely improving!!
The second issue is muscle weakness---most likely caused by steroids, weight loss, and general treatment. This too is most likely temporary. Tomorrow Ryan will be fitted with a sort of brace to help support his foot to aid in walking. He will also be having an EMG test to further investigate muscle problems. We were so glad someone was addressing and trying to remedy these problems.
This week we also learned that Ryan's insurance is now denying covering the transplant. Shock right?? Apparently, the transplant was approved...but now the protocol has changed and the insurance is considering the transplant experimental. The medical and finicial staff at MD Anderson has been diligently working to sort this out with the Insurance, as have we. This is just not a good time for denial, as no approval means no admission and no transplant in the next couple of weeks. So, we are trying to communicate quickly and professionally...
Today Ryan had a couple of pulmonary tests and a cat scan, but we got home a couple of hours ago, so it was a short day. Please pray for Ryan's health and a resolve to the insurance situation. I will update tomorrow, or if I find out any big news!
Love and Hugs,
Laura and Ryan
Thursday, December 4, 2003 11:57 AM CST Hello, hello!! Thanks to all of you who are checking in to the web-site! We have had quite an eventful past couple of days getting ready for the Transplant....
Tuesday, Ryan got his blood drawn (all looks good!) and we saw Dr.Thomas for a follow-up visit. After seeing Dr.T Ryan got a chest-x-ray and then we went up to see the Eye Doctor. Lots of tests, scans, blood draws, need to be done as a "work-up" to transplant, and these were just some of them.
Wednesday, we visited the Dentist, Dr.Giralt's office and a Neurologist. The Dentist was just amazed at how good Ryan's teeth look and spent an hour with us explaining mouth care and how to best take care of the mouth pre, during and after transplant. He was an amazing doctor!! Just as amazing was the Neurologist...we talked with him for an hour and a half!! He seems to think Ryan has two issues going on.
The first being neurological---Ryan's feet and hand numbness are most likely caused by the vincristine and is temporary as we thought. Ryan's numbness and tingling is definetely improving!!
The second issue is muscle weakness---most likely caused by steroids, weight loss, and general treatment. This too is most likely temporary. Tomorrow Ryan will be fitted with a sort of brace to help support his foot to aid in walking. He will also be having an EMG test to further investigate muscle problems. We were so glad someone was addressing and trying to remedy these problems.
This week we also learned that Ryan's insurance is now denying covering the transplant. Shock right?? Apparently, the transplant was approved...but now the protocol has changed and the insurance is considering the transplant experimental. The medical and finicial staff at MD Anderson has been diligently working to sort this out with the Insurance, as have we. This is just not a good time for denial, as no approval means no admission and no transplant in the next couple of weeks. So, we are trying to communicate quickly and professionally...
Today Ryan had a couple of pulmonary tests and a cat scan, but we got home a couple of hours ago, so it was a short day. Please pray for Ryan's health and a resolve to the insurance situation. I will update tomorrow, or if I find out any big news!
Love and Hugs,
Laura and Ryan
Saturday, November 29, 2003 5:34 PM CST Hello to You! I hope everyone had a great Thanksgiving!!
I am here in Indiana...it snowed last night=)I am having a great time visiting with friends, seeing my family and my parents new house. It feels good to be back "home" for a visit!
Ryan is in Florida and also having a great time seeing family, friends and our little apt. It's pretty cozy up there!!
Not much else to report...Ryan and I have long days at the Hospital next Tues and Wed so I will update more then! Thanks for all of your thoughts and prayers!
Love,
Laura and Ryan
Wednesday, November 26, 2003 8:13 PM CST Happy Thanksgiving to All!! Ryan and I hope you all have a wonderful day filled with family, friends, and good food=)
We have so much to be thankful for......I am thankful for our Lord Jesus, my friends, my family, our doctors and medical staff, the donors, our world of nature, and so much more. I am thankful for Ryan.....he is my inspiration
and my love!!
Have a great day....I will write soon!
Love,
Laura and Ryan
Tuesday, November 25, 2003 10:51 AM CST We Made it to Orlando!!! After a taxi ride, plane ride, and care ride...we are in Celebration!!! We are so happy to be here and our travels went very smoothly...
Let's see where I left off...last Friday Ryan had labs and we checked in with the PA. This weekend we rested and packed up for our trip...the temp also reached a whopping 37 degrees. It was so cold!!! I think that is kinda wild for Houston.
On Monday we had to be up early for labs, seeing Dr.Giralt's assistant and for PT. Ryan got some new exercises, with putty for hand strength and a bungee to work on resistance. The pain in his feet is much better, but he is still having balance issues and general weaknesss. The PA assured us that building strength, muscle, weight and so on is a very slow process...one step at a time and Ryan is so determined!! I am so proud of him!
We also learned that MD Anderson has made contact with Ryan's donor and his Transplant is schelduled for December 16th now. Thank you all for checking in.....
I will write a little update tomorrow!
Love and Prayers,
Laura and Ryan
Thursday, November 20, 2003 9:55 AM CST Hello all of your faithful followers! Things here in Houston are very steady, but we have been busy. Long days at the Hospital are just exhausting, even if we are just sitting around waiting.
Tuesday Ryan had PT...I think that his leg weakness/neuropthy is definetely improving! Slowly, but surely! PT did his microcurrent treatment, some balance exercies and had him ride the exercise bike! Then we saw Dr.Thomas and she was pleased with how Ryan is doing and looking...his hair is growing like crazy! Ryan will not have any more chemo from Dr.Thomas before transplant.
Wednesday we met with the Social Security office to discuss some monetary benifits and then spent the rest of the day catching up at home!! And this afternoon we have PT again.
Thank you all for checking in and for praying! I can't believe Thanksgiving is only one week away...we all have so much to be thankful for.
Have a wonderful day!
Love,
Laura and Ryan
Monday, November 17, 2003 7:10 PM CST Hello and Good Evening! The news from our visit with Dr.Giralt today....the "final" approval from the insurance/financial aspect went through today! Our coordinator Brandi came to talk to us in the waiting room and told us that Ryan's donor is a 43 year old male! We were glad to know a little more about this heaven-sent person...and Brandi is looking into possible anonymous communication between the donor and Ryan. Ryan's last donor came from a registry that did not allow any communication. Hopefully, this registry will allow some communication.....if I ever someday meet Ryan's donors, I would probably attack them with hugs=)
Dr.Giralt was pleased that Ryan's marrow is in remission, and told us a little more about tranplant. The transplant is considered mini, meaning that Ryan will get only chemo before the donor cells are infused. So, the transplant is tentatively set for December 15, meaning that Ryan will be admitted the week of December 8th. Ryan's donor will give cells in his home-town and the cells will be transported here and infused in a 72 hour window.
So, for the next few weeks we will be getting ready for Transplant...pre-testing, gaining strength through PT, etc. We will also completely enjoy our Thanksgiving at Home!!! Dr.Giralt told Ryan that he is already ready for Transplant with the "enormous courage and will to live he has shown." Couldn't be more true!!
Lots of Love,
Laura and Ryan
Sunday, November 16, 2003 5:51 PM CST Hello Family and Friends!! Sorry for the delay between updates...last Thursday Ryan and I went to the Kema Boardwalk, an area on the gulf with eating, shopping, and activities. I think that it is most active at night, but we had a great time walking around and ate some fabulous crab legs/cakes!! You can look at a picture of us HERE.
Friday, Ryan had physical therapy! He has home exercises to do now, and has faithfully been doing them. I tried a couple, and decided I could tone the leg muscles too?!?! We saw a couple of movies this weekend...Master and Commander and the Matrix 3...and went to church this morning. We have been resting and catching up on laundry this afternoon.
Tomorrow we see Dr.Giralt and will hopefully get a date/time frame for the Transplant! I will update tomorrow after our visit....
Lots of Love,
Laura and Ryan
Wednesday, November 12, 2003 11:03 AM CST Good Morning!! I love updating when I have wonderful news, and I am loving writing this update. Ryan's bone marrow is clear!!!!! It shows 2 percent abnormal cells, but this means his bone marrow is in a great remission!!!!! His counts look great also...
Last Monday (the 10th) was our first physical therapy appt. and it was incredible! Our therapist, Naghma, was very caring and encouraging. She had Ryan do some "performance" tests like walking, resistance, balance, and simple exercises. So, every time he comes back to PT the original tests will measure how much progress he is making! Ryan will mostly be working on gaining strength, and reducing numbness. PT is also trying a microcurrent machine, that delivers "non-feelable" electric current to Ryan's nerve bundles and may reduce some neuropthic pain/numbness.
Yesterday we saw Dr.Thomas and she has decided to not give Ryan anymore chemo before Transplant. Things change pretty quick around here....but if the Transplant date is approaching soon...no more chemo will be given until the transplant preparing chemotherapy. We see Dr.Giralt next Monday and will hopefully have a set Transplant Date.
The weather is beautiful and Ryan and I are planning on doing something fun today......thank you for all of your prayers! I know they are helping.....
Love and Hugs,
Laura and Ryan
Sunday, November 9, 2003 3:42 PM CST Hello Family and Friends!! Hope you all had a great weekend. Let's see....last Friday Ryan had his bone marrow biopsy, we waited for a "preferred technician" and Ryan said it was well worth the wait. Little pain!
Tomorrow (on Monday) we meet with physical therapy for the first time. We are excited about meeting them and setting up a plan for Ryan! Then Tuesday we see Dr.Thomas, but Ryan will most likely not start chemotherapy until next week. However, we will get the bone marrow biopsy results...please pray for no leukemia and only healthy cells!!
This weekend we rested and went to church and out to lunch today. We are also planning on going home for Thanksgiving, to Florida and Indiana, so the search for plane ticket was on! I got some new pictures developed, so I will try to use my "computer skills" and post a couple soon?!?!
Until next time....
Love,
Laura and Ryan
Thursday, November 6, 2003 12:04 AM CST Good Afternoon Everyone!! First, thanks for your support, offers to help, and for your love and prayers. It is still amazing to me how people can come together and help one another!
Things are pretty stable around here: We saw Dr.Thomas last Tuesday and she has decided to "bag" (not give) the last dose of chemo in this 3rd cycle. Ryan will have a bone marrow biopsy sometime soon to make sure his marrow is in remission. And we will meet with Dr.Thomas again next Tuesday for follow-up, but Ryan probably will not begin chemo again until the 18th. This will give him time to recover from his neuropthy, but still allow several doses of chemo before transplant.
Neurological and Physical Therapy consults are also in the works for us! The Neuro team will run more extensive testing to see exactly what nerves in Ryan's legs, feet, hands, and face have been affected. However, time is really the best medicine to recover from these chemo side effects. PT would be a wonderful way for Ryan to improve or maintain flexibility, strength, weight, and so on.
We have all of the boxes un-packed in our new apt. and really enjoy it here. (our internet is now set up) Yesterday Ryan and I went to see an I-max movie....Jane Goodall's Chimps....what beautiful scenery! Then Bob joined us for dinner at a wonderful restaurant recommended by our friends Jay and Jenn....the Florida Seafood Grill. Their key lime pie was delicious!
Thanks for checking in....have a great day!
Love,
Laura and Ryan
Tuesday, November 4, 2003 9:54 AM CST Hello All!! I apologize for not updating sooner............we are moved into our new apt and are mostly settled now! Our internet connection should be set up this week...so I am typing this at the Hospital.
We have wonderful news...WE HAVE A DONOR=) Last Friday we met with Dr.Giralt and learned that an 8/10 matched donor from Cypress (the island next to Italy) has been found. We were so relieved! Transplant will probably be in 4-6 weeks!
We had a great weekend and Ryan is feeling well. Dr.Thomas stopped his chemotherapy last week because of neuropthy and weakness in his legs and feet. Ryan also started taking neurotin, a medicine that will resolve some loss of feeling. Being off the chemo has made a huge difference in the way Ryan feels overall!
We meet with Dr.Thomas today for a visit to discuss starting chemo again. Thanks for your support and guestbook entries.............have a nice day!
Love,
Laura and Ryan
Tuesday, October 28, 2003 6:10 PM CST Hi!! Thought I would update tonight, as tomorrow may be a little crazy with the move! Ryan and I went to the Hospital this morning for labs and to see the PA....his potassium level is slightly elevated as well as his liver functions. Too much potassium can cause heart irregulatities.
To remedy these highs, he had to drink an elixer of yucky medicine (it smelled like old carmel?!) Anyway, the medicine will help his kidneys to get rid of extra potassium. We are also going to stop a couple of his antibiotics to see if the liver functions go down some. We are going back in tomorrow to check his blood again...should be a quick visit though!
So, we will go in for labs early and then the movers will be here between 11 and 1pm. I have been packing all day!!! We should have dial up internet tomorrow so I should be able to update at the end of the week. On Thursday, we see Dr.Thomas and on Friday we see Dr.Giralt.....please pray for wisdom for our doctors, Ryan's healing, and the perfect donor!
Love and Hugs,
Laura and Ryan
Monday, October 27, 2003 5:17 PM CST Hello Everyone! Thanks for checking in with us...hope your weekend was good! We hung out here this weekend...went to Church on Sunday, baked a little, and packed up boxes. A cold, rainy weekend!
I've been packing most of the day today and cleaning the place here for when we leave. I got our mail, newspaper, tv, and other services switched today too....lots to remember when you move?!
Tomorrow morning Ryan and I go in for labs and a PA visit. Ryan has been pretty tired the past couple of days, just feeling achy and yucky all over. His tastes are also poor. These are all just effects from chemotherapy....and he should recover after the chemo clears his system. Ya know, the body can only take so much stress without reacting! I love him so much and I wish I could do more to help him feel better. We did try the foot bath on his feet this afternoon, and that was soothing!
Until next time...
Love,
Laura and Ryan
Friday, October 24, 2003 11:49 AM CDT It's Friday! We are home for our mid-day break. This morning we went to get labs done...they look pretty good. Ryan's hemoglobin was a little low, so this afternoon he will be getting 2 units of blood. This should help out his energy level a bit, as well as increase total blood volume and lower his pulse.
The research nurse, Claudette, came in to do Ryan's neuro exam...he passed! But, he's been having some muscle weakness in his legs. They feel a "jello-y", he's a little wobbly. Still getting around and walking fine, just needs to be aware of where he's stepping. Claudette was concerned enough to page Dr.Thomas (she's on vacation) and ask if Ryan's chemo needed to be held today, meaning he would not receive it. So, since Dr. Thomas is on vacation another Doctor, Dr. Faderl re-exaimed Ryan and tested his muscle strength.
We all agreed that while the muscle weakness is interfering with function some, it is not interferring with daily activities enough to warrent holding the chemo. Dr. Faderl was such a sweet doctor, very gentle, and we are glad to have expanded our relationships with the leukemia doctors.
We are working hard on "upping" the fluid intake and calorie intake. Gotta bulk Ryan up before transplant! He is drinking Ensure now, and that will help towards extra calories. Yesterday he ate pancakes, a BigMac, an Ensure smoothie, and chicken/noodles/veggies so I think we are definetely moving in the right direction!! I was pretty impressed!!!
Wednesday, Ryan, I and Bob (ryan's dad) took an afternoon trip down to Galveston....where the beach is!! We had a great time looking at the water, touring a flight musesum, and eating at the Rainforest Cafe=)
Today I am going to work on packing up some boxes, for our move next week. We go back to the Hospital at 3 for transfusions. Thank you for checking in and for all of your prayers! Until next time...
Lots of Love,
Laura and Ryan
Tuesday, October 21, 2003 2:31 PM CDT Hello All=) This morning we went to get Ryan's labs drawn....his counts look wonderful! We are so excited, just one less thing to worry about! We saw the PA, she was quite extensive and recommended trying soups for the salt and fluid content. Well, that's what we tried for lunch!
Ryan didn't need any extra IV fluids, but he does need to try and really push the oral fluids. It's easy to get dehydrated again. I feel like such a nag putting that straw to his mouth, but he does feel better?!
We also talked about putting a line/catheter in...Ryan's veins are getting tricky, and there's no reason to stab multiple times to draw blood. The leukemia dept. will be talking to the BMT dept., so hopefully soon he will get a line that will be suitable for blood, chemo, and transplant purposes.
We go back on Friday for a Doctor visit and chemo...thanks for all of your love and support and have a wonderful rest of the week.
Love,
Laura and Ryan
Monday, October 20, 2003 4:44 PM CDT Hello on this Monday! Well, not alot to report here...we went in for fluids on Saturday and Sunday evening. The Hospital on the weekends is great...very quiet and no waiting!! Ryan's blood pressure is low and his pulse high, but the numbers always seem to get better (BP up, pulse down) after he receives fluids.
We are just really pushing the drinking fluids and hopefully he can get on top of this fluid imbalance soon! He feels pretty lousy...just tired and weak, but that is probably from the fluids problem and chemo. Today he starts the oral steroids again, so that will help his energy level some. He is such a trooper!
Tomorrow we go in for labs and to see the PA, so I will write again tomorrow afternoon. Thanks for checking in and for all of your support. Please keep praying!
Love,
Laura and Ryan
Saturday, October 18, 2003 2:12 PM CDT Hello, hello! I apologize for not updating for 4 days...where does the time go? Things are going okay...the past couple of days Ryan has been feeling drowsy and just "yucky". He's been sleeping alot, but that's okay because his body needs to rest in order to heal.
However, yesterday we were schelduled to go in for labs, see the doctor and get his chemo. Ryan woke up feeling worse and now...cold, clammy, winded when walking, and generally awful. My poor baby! We were guessing that he needed blood and fluids. We were half-right.....he was major dehydrated and got a couple of liters of fluids. It seems his body is always on the verge of needing more fluid, no matter how much he drinks, and this time he just kinda fell out of balance. So, we are trying to really push the drinking fluids. No fevers and his counts look great though!
Since we were downstairs in the ER getting fluids, we did not get to speak with the doctor. He did get his chemo though....it better be killing those leukemia cells! Tonight and tomorrrow we go back for another liter of fluids, so he should be bouncing back pretty quickly.
We've been hanging out at home the past few days.....rented a couple of movies...the Matrix 2 and Hollywood Homocide. I found a nice moving company and we will be moving into our new apt. on October 29! The apt. is just beautiful and we are excited to move over there!!
I will update soon! Thanks for checking in.
Love,
Laura and Ryan
Tuesday, October 14, 2003 10:02 AM CDT Greetings! Well, the waiting game continues....we met with Dr. Giralt in the BMT on Monday. MD Anderson has received samples from 2 potential donors, these blood/tissue samples will be further "worked up" to check for compatibility. With an unrelated donor, Ryan's transplant would still be 6 to 8 weeks away. He will do chemo until transplant time.
So, right now we are "waiting and watching" for donor testing to be complete. If neither of these donors works, then Ryan's mom would be the best possible donor. Right now, Dr. Giralt is looking towards the unrelated donor track and feels this track is quite reasonable! The leukemia and bone marrow doctors continue to watch Ryan's marrow very closely for leukemic cells! We will see Dr. Giralt again in 2 weeks, hopefuly with a donor and transplant date set.
On one hand, I am okay with waiting...Ryan is here at home and around town with me, safe, in good health, and his body is recovering for the next battle. On the other hand, I am anxious...his marrow is in a good remission and we want to get on with school and marriage. I can't say life because this is our life right now, and the path God has chosen for us. We try to live each day to the fullest and look at our experiences positively.
This morning, we went in for labs and a pa visit. Ryan's labs look wonderful and his weight is up!! Both good! We see the doctor again on Friday. We are planning on going to the Space Center here in Houston on one of our days off=)
Before I wrap this up, there is a special family in Mooresville, IN that I babysat for during high school and college. The three little boys, twins who are 8 and a 10-year old, are collecting Box Tops for Education as a school contest. The Box Top 'coupons' are stamp-sized pink and white logos on many grocery item packages like soup, flour, cereal, cake mix, etc. They are requesting help to gather these Box Tops....so, if you happen to have any in your house and would like to send them to:
Mills Brothers Action Team
1410 E. Keller Hill Road
Mooresville, IN 46158
I know the boys would really appreciate your help. Thank you notes are promised in return!
Have a great day......
Love,
Laura and Ryan
Sunday, October 12, 2003 4:24 PM CDT Hello! Hope everyone had a good weekend=) Last Friday evening Ryan got his chemo and started steroids. The steroids cause a range of side effects, some good and some not so good.
For example, they help with appetite, energy, and help his blood counts not to plummet. They also make Ryan have frequent hiccups, and his hearing a little "echoy". Weird?! Dr. Thomas told us that almost everyone on this study has reported hiccups!! We gotta laugh at that one...
We slept in this weekend, went to a movie, church and out to lunch. Tonight we are going to dinner with Jay and Jennifer! Tomorrow, we see Dr. Giralt...I always get so nervous before seeing him. I guess because we always learn crucial news at his visits and never know quite what to expect. He is an amazing doctor, and has a plan B for everything. I like that multi-planning!
Thanks for checking in......
Lots of Love,
Laura and Ryan
Friday, October 10, 2003 5:31 PM CDT Hello! Just so you know.......
SERVICE ANNOUCEMENT:
CaringBridge is moving to a new web server on Saturday, October 11, 2003 from 3:00 p.m. to 6:00 p.m. CST. The move is necessary to update the technology to better serve you.
What does this mean for you? First, it will not change how you use CaringBridge for your day-to-day updates and/or viewing. Second, the CaringBridge Web site will not be available for use on 10/11/03 from 3:00 p.m. to 6:00 p.m. It may take up to 72 hours past the move date for you to be able to make updates. You will know the server change is complete once you are able to update your page with new journal and guestbook entries.
Ryan is sleeping soundly right now, and today has been a quiet day. The past 2 days he's been having some mild bone pain and feeling kinda achey. These symptoms are from the neupogen shots that he received to boost his white blood cells. However, today I am happy to report that today he feels much better! His feet are uncomfortable, but he is a "trooper" and has some pain medicine that helps.
We are going to head on in to the Hospital for chemotherapy in about an hour. Our Friday night date I guess?! Maybe it won't be so crowded?! This will be the first dose in the 3rd cycle. He will also start steroids tonight.
I'm not quite sure what the weekend holds for us, but we will try and do something fun!! On Monday afternoon, we see Dr.Giralt and are hoping that he will have great donor news! Have a wonderful weekend and I'll update soon.
Love and Hugs,
Laura and Ryan
PS-new pics from Ryan's birthday are posted=)
Thursday, October 8, 2003 5:52 PM CDT October 9***NEW PICTURES UPDATED!!! COMPLIMENTS OF BOB'S DIGITAL CAMERA!!***
Had to update a little, although I am very tired tonight! First, thanks to all of you who sent Ryan birthday wishes, cards, and presents!! You really made it special and he had a great birthday. You only turn 23 once, so we made the most of it=)
The leukemia nurse called this morning and reported that Dr.Thomas is "pleased" with Ryan's bone marrow biopsy yesterday. I don't know any more details than that, but we are definetely headed in the right direction. Thank you Lord! We did have to go to the Hospital today for a "neupogen" shot. This will stimulate Ryan's immune system/body to make white blood cells and raise his counts some. He'll get a shot tomorrow also.
I did lots of running around today, I think that I was at the grocery store three times?! I fixed Ryan a big birthday dinner with 'steak and potatoes' and his strawberry cake turned out beautiful=) My cousins Susan and Martin came over this evening to celebrate with Bob and us (and open presents) and we enjoyed their company.
Not quite sure what the plan is in the next few days, but I will update when I know. Thanks for your love and support!
Goodnight,
Laura and Ryan
Wednesday, October 8, 2003 9:32 PM CDT Had to update a little, although I am very tired tonight! First, thanks to all of you who sent Ryan birthday wishes, cards, and presents!! You really made it special and he had a great birthday. You only turn 23 once, so we made the most of it=)
The leukemia nurse called this morning and reported that Dr.Thomas is "pleased" with Ryan's bone marrow biopsy yesterday. I don't know any more details than that, but we are definetely headed in the right direction. Thank you Lord! We did have to go to the Hospital today for a "neupogen" shot. This will stimulate Ryan's immune system/body to make white blood cells and raise his counts some. He'll get a shot tomorrow also.
I did lots of running around today, I think that I was at the grocery store three times?! I fixed Ryan a big birthday dinner with 'steak and potatoes' and his strawberry cake turned out beautiful=) My cousins Susan and Martin came over this evening to celebrate with Bob and us (and open presents) and we enjoyed their company.
Not quite sure what the plan is in the next few days, but I will update when I know. Thanks for your love and support!
Goodnight,
Laura and Ryan
Tuesday, October 7, 2003 6:02 PM CDT Hello Everyone! Well, lots to report on. Monday we met with the pain doctors for a follow-up and to get prescription refills. All went well, and Ryan's current pain pills are doing the job!!
While we were there, the research nurse came in and talked to us about an experimental study for cancer-related fatigue. Ritalin, the drug used for ADHD, is a mild stimulant being used in an effort to combat fatigue, stimulate appetite, and curb mild depression. Although Ryan chose not to participate at this time, it will be interesting to find out the results of the study! I think it's wonderful that new methods to control/prevent cancer-related fatigue are being explored!
This morning Ryan got his labs drawn, and to our surprise he is neutropenic. This means that his resistence to infections is quite low. His white cells(infection fighters) are at acceptable levels though. When we spoke with Dr.Thomas this afternoon she was puzzled about this sudden neutropenia and did not want to start chemo today as originally planned.
The "advanced" results of Ryan's last bone marrow biopsy showed that up to 6% of his cells could be ALL. Minimal residual disease! I hate leukemia, I wish these bad cells would just all go away!! Dr.T said this is not really surprising, but of course we would like it to show NO leukemia.
So, Ryan had another bone marrow biopsy this afternoon to see what's going on in his bones. (I told Dr. T that tomorrow was his birthday, so she squeezed him in late this afternoon!)This neutropenia might be a delayed side effect from chemo...Ryan's feet numbness is worse, his appetite down a little too. But, the biopsy needed to be done to rule out that the leukemia is growing back during this one week off chemo. If this is the case, Dr.T wants to start a new chemo that Ryan hasn't been exposed to recently.
One step at a time. We are so blessed to have wonderful doctors and we both feel so confident with their abilities. Again, we have many options available to us.
Ryan feels great today, his hair is all growing back too! Tomorrow we are going to celebrate his birthday with a little cake and presents!! I'll update soon.
Thanks for checking in!
Love,
Laura and Ryan
Sunday, October 5, 2003 1:51 PM CDT Hello All! Thanks for checking in, it's wonderful to see those numbers on the counters go up. Hope everyone had a good weekend.
We ended up going to the Hospital last Friday. About 3pm our scheludling coordinator call and said to come in for labs now. I was like what? We zipped over and got them drawn, thankfully no transfusions needed!
Saturday we saw the movie 'The Rundown'. It's set in the Amazon, so the scenery is quite pretty. This morning we went to church. That's always refreshing.
Ryan has been feeling so-so. He has a new sleeping pill called ABH. MD Anderson makes the pill and it has ativan, benadryl, and haldol in it. Talk about a combo!! He's defenitely sleeping better at night, but he's so drowsy during the day. We'll talk to the Dr. about other options. The neuropthy continues and his stomach is always a little touchy. Lots of peanut butter and jelly for Ryan!
Monday we visit the pain managment people for a follow-up visit and Tues we see Dr. Thomas. Ryan will probably start a third cycle of chemo on Tues. Please keep praying for the perfect donor.
I am going to try and put a new picture up. Mom sent it to me, and you'll be surprised! Also, don't forget that RYAN’S 23rd BIRTHDAY IS OCTOBER 8th=)
Lots of Love,
Laura and Ryan
Friday, October 3, 2003 1:55 PM CDT Good Afternoon! Not alot to report, it's a quiet day here. Ryan is napping now, he's been really drowsy today. In fact he slept till almost noon and is sound asleep now! Could be his body decided to catch up on all the sleepless nights from the past two weeks or the chemo is still cycling through his body. I am just glad he is able to sleep, it's no fun to be awake at night.
We don't go the the Hospital till Monday!! We also don't see Dr. Giralt until the 13th. This is farther away than I expected, but maybe some definitive news will be shared by then. We will be in touch with the coordinators in the mean-time!
Yesterday was "domestic day" as I call it. I did some cleaning, laundry, and went to the grocery store. We bought a blender on sale, so we'll try and make smoothies this weekend. If anyone has any good recipes, let us know=)
This weekend I am going to do some birthday shopping for Ryan! We are planning on a restful weekend, maybe a movie and dinner with Jay and Jennifer. Thanks for checking in=)
Lots of Love,
Laura and Ryan
PS-Also, don't forget that RYAN’S 23rd BIRTHDAY IS OCTOBER 8th=) Obviously, things have been rough for him these past few months and I know he would really appreciate a card, call, or birthday wishes!!! Our address is at the bottom of the page.
Tuesday, September 30, 2003 6:46 PM CDT Hello, Hello! Today was a great day! We went to the Hospital early for Ryan's bone marrow biopsy and this afternoon found out that the marrow is clear, only 2% blasts, which is the same reading as his last biopsy 5 weeks ago. This is wonderful news and reduces the urgency for transplant a bit!! Ryan's labs look very nice, his counts starting to recover from his last chemo cycle. He will most likley have a week off of chemotherapy and begin the same vincristine treatment sometime early next week.
Dr. Thomas feels that Ryan is responding so well to this chemo that a third cycle is approriate. She feels Ryan needs to be exposed to some type of chemo fairly continusouly, as opposed to having an extended break.
Ryan and I also spoke with the transplant coordinator today. Our original coordinator is moving to a new position, so Brandi will be our new coordinator. She is "on the ball"...already requested information from new donors!! To our knowledge, there are new 3 donors the coordinators are "working with" right now! We don't know for sure, but think these new 3 are international and MD has special access to these registries. The registry most accessed is the NMDP (National Marrow Donor Program), but these new 3 potential donors probably are not from the NMDP. Ryan and I had such a great feeling and such HOPE for a MUD after this meeting=)
In other news, we did some shopping yesterday at an outdoor/outlet type mall and had a nice time walking around. Also, don't forget that RYAN’S 23rd BIRTHDAY IS OCTOBER 8th=) Obviously, things have been rough for him these past few months and I know he would really appreciate a card, call, or birthday wishes!!! Our address is at the bottom of the page.
We are still waiting our our schedule for the rest of the week, but I will be updating soon. Thanks for your love, words, prayers, and thoughts!
Love,
Laura and Ryan
Sunday, September 28, 2003 8:43 PM CDT Hello Everyone! Hope the weekend was relaxing! Before I give a little update…RYAN’S 23rd BIRTHDAY IS OCTOBER 8th=) Obviously, things have been rough for him these past few months and I know he would really appreciate a card, call, or birthday wishes!!! Our address is at the bottom of the page.
This weekend was good, and fall temps are in the air! Yesterday Ryan and I did some housekeeping, and then took a walk to Toys R U, which is right next to our apt complex. What a flashback…board games, Barbie’s, coloring books and Tonka trucks. We had a good time, but didn’t touch anything as to prevent germs. I am a little paranoid sometimes?
Today we went to visit my cousins, Susan and Martin, who live in the Houston area. We had a great relaxing time on their sun-porch overlooking a beautiful backyard and the bayou. It was so refreshing to get out of the city for a little while and we had a great time visiting!
Ryan feels okay, he is tired and still having some trouble sleeping. Not as bad as before though. His stomach is also causing minor discomfort, nothing major but annoying at the same time. We go to the Hospital on Tuesday for a bone marrow biopsy, labs and to see Dr. Thomas. Please pray for clear marrow, free of any leukemia or “weird” cells.
I will update Tuesday. Have a lovely day!
Love, Laura and Ryan
Friday, September 26, 2003 5:57 PM CDT It's Friday!! Hope everyone had a good day. We did get over to the I-max theater...we saw T-Rex and it was kinda corny, but fun at the same time!! Our friends Jay and Jennifer gave us a great book about day trips from Houston, so this weekend we are going to explore a bit!!
Thursday, we saw Dr. Thomas and she is most impressed with the way Ryan is handling this chemo regiment. In fact, Ryan may be the first person to get 3 cycles of this trial because he is tolerating it so well with few side effects. Ryan, the pioneer??!! He will have a bone marrow biopsy early next week to make sure the leukemia is still in remission. Ryan's been having trouble sleeping, so we got a prescription to try and remedy that. My little insomniac!
Today we saw Dr. Giralt, and again he is just wonderful!! The two MUD donors that were being tested are unforunately not suitable donors. However, there are several (at least 3) European donors that are being contacted to see if they are suitable matches. The MUD's (matched unrelated donors) have a longer "track record" but the international donors can take 8-12 weeks to mobilize and get to the actual transplant. This can be a problem.
Ryan's mom, Susan, is a 4/6 match. Dr. Giralt calls this a borderline match between haplo and 2-antigen mismatch. She would be able to give cells/marrow much quicker, but these types of transplants have shorter "track records" or less experience. However, they are successful!
Dr. Giralt (and us) feels like the decision as to a donor should not be made today and probably will not be definite for 2-3 weeks. He told us to think about all this info, the pros and cons of each donor type, and any questions we may have. He also promised to go over all the papers again to make sure he didn't miss anything. Thank you God for this wonderful doctor.
We are feeling all mixed still...and the waiting is hard! But everything will fall into place as it should be. Thank you for all of your support and words of encouragment. Reading your entries helps tremendously.
Have a nice weekend=)
Love,
Laura and Ryan
Tuesday, September 23, 2003 11:12 AM CDT Good Morning!!! If you haven't checked in for a few days,please read the journal history. There is alot of info in the last entry I wrote.
Yesterday, Ryan and I went to the Hospital for labs and a PA visit, all looks good and no transfusions needed!! We will go back on Thursday for a visit with Dr.Thomas and Ryan's last chemotherapy in this cycle. Yahoo! On Friday, we meet with Dr.Giralt and will hopefuly find out more news on potential donors. Maybe even a chosen donor and timeline. Please keep praying for the perfect donor!!
The BMT doctors are trying to coordinate Ryan's last chemo cycle with a transplant date. This will possibly prevent Ryan from having to do another chemo cycle with the vincristine and give his body a chance to recooperate before the pre-transplant high-dose chemo. Again, just so many factors to consider!
The Texas skies are sunny today and our temperatures are cooling off to pleasant fall weather. Ryan and I are planning to go see an I-Max movie this afternoon, out little outing for the day! Thanks for checking in and signing the guestbook.
Take care and have a lovely afternoon!
Love,
Laura and Ryan
Sunday, September 21, 2003 2:24 PM CDT Hello, hello! I must apologize for not writing sooner, things have been hopping around here, so I have lots of news to report on. I can't wait too many days until I update, or I get behind. I have to write all of my to-do's down anyway or I will just forget=)
After our Thursday visit with Dr. Thomas, we went back that evening for Ryan's two units of blood and chemo/fluids. We were in the transfuion unit until 1 am, but did rest some while waiting. The nurses are very considerate and turn off the lights, etc.
On Friday we met with the BMT staff. They are so pleased with Ryan's remission response to chemotherapy, and how well he is doing physically. Thank you God! Ryan and I were hoping for a concrete donor and timeline, but that's not available yet. There are 2 matched unrelated donors (MUD's) being tested, and one MUD showing up unavialable. Ryan's dad Bob is a haplo (half) match, Ryan's brother is not a suitable match, and Ryan's mom Susan is a haplo match...perhaps greater than a half match!! They are still doing some complex testing on Susan, and the two MUD's to determine how well their typing matches with Ryan's.
Haplo, or haploidentical transplants (from a parent or sibling) are performed, but statistically carry greater risk of rejection, graft vs. host disease, and other complications. On the other hand, the related donor transplants are usually more readily available (we do not want Ryan to relapse or have too much chemo damage before his transplant and MUD's can take months to find) and may contain favorable material simply because of the "related" factor.
The BMT doctors do not want to make any decisions until all of the testing is back, which we completely understand and respect. There are several factors to consider when choosing the optimal donor such as best matched cell markers, related or unrelated donors, age, general health, disease status, quickest availability and so on. Dr. Giralt and his team are considering all of these factors, but did tell us that they would prefer to not use Ryan's original donor. They would also prefer to use an adult donor over cord blood, although cord blood transplantaiton is performed at MD Anderson.
We are pretty tense about finding and choosing the best donor, but glad that there are options available. It is just hard to wait for such critical news! There is just so much to consider.
In other news, we went to church this morning at Second Baptist of Houston with Bob and really enjoyed the music and sermon. I thought the music had a little country flare that made it nice to listen to=)
Thanks for checking in, your words and prayers mean so much to us. Have a wonderful week and I'll update soon!
Lots of Love,
Laura and Ryan
Thursday, September 18, 2003 2:00 PM CDT
Hello and Good Afternoon Everyone! Ryan and I went to the Hospital this morning for labs, a doctor visit with Dr. Thomas and the neurology nurse. Ryan's labs look great, except that his hemoglobin is low. So this evening we will go back to the Hospital's transfusion unit for two units of blood and his chemo. It will be a long evening....
Ryan doesn't really feel like he needs the blood, joking that he might feel well enough to get a job after this transfusion=) He is in good spirits and we are so thankful that this chemo is destroying leukemia cells without causing too many yucky side effects!!
September is Childhood Cancer Awareness Month and I found a great petition that you can sign to push a postage stamp that will benefit cancer research. It takes like a minute! Go to Childhood Cancer Awareness Stamp
I will update tomorrow after our visit with Dr. Giralt. Have a nice evening.
Love, Laura and Ryan
Tuesday, September 16, 2003 8:50 PM CDT Hello! What a wonderful Monday and Tuesday we have had=) Monday Ryan had labs in the morning, no transfusions needed and his counts look great! He is also eating great...biscuits and gravy, sloppy joes, pasta and vegetables, popsicles. And has a good appetite for that matter!
Monday evening our good friends Jay and Jennifer, who were also at Shands in Gainesville with us, took us out to a great little seafood place. They showed Ryan and I some good places to eat, shop, visit and so on. Thanks Jay and Jennifer so much for your company and recommendations!!
We are in the process of looking for a larger apt. in the Houston area. Ryan's dad, Bob, is going to be working in Houston for the next few months and therefore we need more space than our current 1 bed/1 bath unit.
The great news is......Ryan's insurance provides 10,000 extra funding for transportation, housing, food, and related costs while we are here at the insurance preferred location of MD Anderson. So, that money is a true Godsend for helping with the cost of a larger apt. We may be able to just move buildings within our apt. complex (which would be optimal) or we may move to another complex close to the medical center. Ryan and I are searching, we'll visit a few places tomorrow.
Thank you all for checking in, Ryan and I have been so blessed with family, friends, and new-found friends throughout this whole cancer ordeal. We know that God works miracles, we've witnessed so many. Have a great day and I will update again thursday or friday!
Lots of Love,
Laura Marie
Sunday, September 14, 2003 10:47 AM CDT Hello! Not a lot to report on, but it is quiet here this morning so I though I would update. The weather is Houston continues to cool down, thank goodness! And yesterday was a beautiful sunny day...Ryan, Ryan's dad and I went to see 'Once upon a time in Mexico' yesterday aternoon. It was pretty good, but lots of "shoot em up" action. Maybe a little too much for me?! Johnny Depp however, played his part wonderfully!
Ryan is feeling yucky from chemo, but nothing that is unexpected. He is done with his at-home fluid pump, glad for that too!! He just feels weak in general, and his tummy is "iffy". We can definetely deal with these things though=)
I am just tense about the upcoming weeks, and ready to hear that the perfect donor has been found. Ryan and I go to the Hospital for labs and a meeting with the PA tomorrow. We'll pick up a couple of refills and check with the BMT coordinators about "the search."
Better go do some cleaning and laundry, thanks for checking in and for all of your support!
Love, Laura and Ryan
Friday, September 12, 2003 3:03 PM CDT New Pictures have been Added!!
Hello Family and Friends! Thanks for checking in, we love to see those new guestbook entries!! We went to the Hospital yesterday, another long day. But if you only go in to the Hospital 3 days a week, then we can handle those long days?!
Ryan's labs looked great...except he is a little dehydrated. Blood pressure a little low and pulse a little high. He told Dr. Thomas that he is truly drinking 2 Liters of "non-caffienated" fluid per day, plus eating well. For some reason, Dr. Thomas just thinks that isn't enough (maybe with all the meds he's on) and Ryan got a big bag or fluids to take home. He hates lugging that at-home bag, but the trade-off is not being stuck at the Hospital.
He did great on his neuro exam, which is important because the vincristine he's getting can adversely affect the nervous system. The nurse tests his reflexes and asks lots of questions to determine the grade of his nerve damage.
Chemo administration went without and problems, although we prayed all day that the nurse would find a good vein easily! No word on the donor search, but I am hoping that we will have some news from the BMT coordinators next week.
Have a good weekend and I will update in a couple of days!
Lots of Love,
Laura and Ryan
Monday, September 8, 2003 12:55 AM CDT Hello! A little update for ya'll...we went to the hospital this morning and Ryan's labs look marvelous, no transfusions needed. He has been drinking over 2 liters a day and this has helped tremendously with his kidney numbers, as well as helped his feel "good." We spoke with the PA about getting some refills, and then booked out of the Hospital...all before noon!
The steroids he is on help with appetite and energy, but prolonged use can cause some long term problems, so he will be stopping those for a few days and then do another 4 day dose of them.
This past weekend we went to the fine arts museum on Saturday, which happened to be the annual district free day. That means that every museum in the area was free, so it was a bit crowded, but the price was right! Sunday we drove around and did some exploring, and had lunch out at PF Changs's.
Consider becoming a bone marrow or blood donor. Usually, signing up to be in the National Marrow Donor Registry involves one vial of blood and is free of charge if you donate blood, otherwise is a one time fee. You just might save someone's life! Also, if you are able donate blood...it is always needed, if fact, one of our good friends here had the blook bank folks ask him to provide donors cause the blood/blood product supply is so critical here in Houston. (J and J, I thought this was shocking?!)
I will get some new pictures up soon=) Thank you for all of your love, thoughts, and prayers! Please keep praying for the optimal donor, Ryan's continued energy and strength, and guidance for our doctors.
Lots of Love, Laura and Ryan
Saturday, September 6, 2003 10:09 AM CDT Happy Saturday All! First things first, Ryan is feeling amazingly wonderful=) He got his chemo on thursday evening and all went without complications...he had some neuropthy later that night, but nothing too bad.
I don't know if it's the steroids he's on or just having some time to recover, but the past two days he has an appetite with "real" hunger, has been drinking well, and hopping around the house. We even walked laps around our apt. complex yesterday...it almost felt normal!
Otherwise, Texas has been pretty rainy and cooling off some. We are planning on going to the Museum of Natural Science today....I will update soon.
Love, Laura and Ryan
Wednesday, September 3, 2003 2:21 PM CDT Hello, hello friends and family!
Yesterday was our long hospital day.....Ryan's vitals and labs were surprisingly good, we were thinking that he might need blood due to his fatigue, but his counts all look good. White blood (infection-fighters) cells coming up, hemoglobin (the figure that determines blood transfusion needs and platlets (clotters) coming up also. His kidney functions are a little elevated so we took a fluid pump home, but the liver functions are much, much improved. He also passed his neuro exam with flying colors.
Now, how he feels?? He is pretty tired and having some belly pain still. Dr. Thomas thinks the belly troubles are from constipation and the cycle of taking more pain meds to relieve pain. She also says move around more, that will provide some relief and up the energy level. I guess I will have to be showing some "tough love" to get him up and moving. Ryan will be starting his second round of chemo this Thursday also.
We also saw Dr. Giralt from the BMT yesterday and boy, is he wonderful. We just love his voice, and told him he would be great to listen to in a college classroon. He said that he actaully does lectures and has taught med students=)
There are 2 potential donors different from Ryan's original donor, and Ryan's mom,dad, and brother were also tested for internal control. Dr. G wants to use perhripial blood stem cells instead of bone marrow, as they grow faster and show a higher chronic GVH rate but a lower disease relapse. This is what would be best in our case, but much conflicting data is present about the advantages/disadvantages of PBSC vs. marrow. Dr. G is planning the conditioning regiment of chemo to give Ryan before transplant, and is VERY pleased that Ryan is in Remission! Thank you God for this remission!
Tomorrow we will be engaged for 4 years (i guess we are getting old?!) and we are planning on doing a museum or taking a little drive to the coast (galveston) to celebrate!!
Thanks for checking in, keep praying!
Love, Laura and Ryan
Monday, September 1, 2003 6:15 PM CDT Hello All---I loved the flower background, but was beginning to think that it was a little girly for Ryan! We are back in Houston, another one of our homes. We had a great time in Orlando, although we wished we could have done more like go over to Disney. However, we loved seeing family and friends and being in our environment.
Ryan is just exhausted today, although he hasn't been sleeping well from the belly pain and traveling tires you out. His belly pain is tolerable if not improved and no more nausea/vomitting! He is having some increased numbness in hands and feet.....it seems to me like these "chemo effects" are quite delayed.
We go to the hospital tomorrow for labs, Dr. Thomas and Dr. Giralt. I have a list of questions a mile long that I've come up with over the last week.....Thanks for checking in and I will update tomorrow or Wednesday.
Lots of Love,
Laura and Ryan
Saturday, August 30, 2003 7:25 PM CDT UPDATE: Saturday Evening
Ryan is doing much better today…….. still having abdominal pain, but no nausea and vomiting after getting some medicine (compazine) last evening. He's eating soft, hydrating foods like jello, applesauce, noodle soups. Nothing too strong. Thank you God, we trust in you and will be patient!!!
Friday, August 29, 2003 12:09 AM CDT
Hello Everyone! Hope you are all gearing up for the big Labor Day weekend. Well, things around here are kinda rocky.
Ryan has been experiencing some lower belly pain, some cramping and in the last 24 hours, vomitting. We saw his local oncologist yesterday and the good news is that his counts look great.....WBC and platlets coming up! Reds about the same and his kidney/liver functions at stable levels. This is very important because chemo can be quite toxic to the internal organs.
Although his labs and vitals are good, Dr. Otoya thinks that his belly symptoms are just delayed reactions to chemotherapy. They prescribed a sleeping aid and some anti-nausea/vomitting medicine to help. And we are trying very hard to keep him hydrated!!
Otherwise, Ryan feels pretty good. He is not as tired as he was the past couple of weeks. Our friends came over the other night and had dinner and "video game time" with us. Always a blast! This weekend we have no mega plans, just take it day-by-day and definetely take Ryan's camaro out for a spin=)
Have a great weekend and be safe!
Lots of Love,
Laura and Ryan
Friday, August 29, 2003 12:09 AM CDT Hello Everyone! Hope you are all gearing up for the big Labor Day weekend. Well, things around here are kinda rocky.
Ryan has been experiencing some lower belly pain, some cramping and in the last 24 hours, vomitting. We saw his local oncologist yesterday and the good news is that his counts look great.....WBC and platlets coming up! Reds about the same and his kidney/liver functions at stable levels. This is very important because chemo can be quite toxic to the internal organs.
Although his labs and vitals are good, Dr. Otoya thinks that his belly symptoms are just delayed reactions to chemotherapy. They prescribed a sleeping aid and some anti-nausea/vomitting medicine to help. And we are trying very hard to keep him hydrated!!
Otherwise, Ryan feels pretty good. He is not as tired as he was the past couple of weeks. Our friends came over the other night and had dinner and "video game time" with us. Always a blast! This weekend we have no mega plans, just take it day-by-day and definetely take Ryan's camaro out for a spin=)
Have a great weekend and be safe!
Lots of Love,
Laura and Ryan
Tuesday, August 26, 2003 11:24 AM CDT Hello there Everyone! Well, we made it home okay and it's really good to be back in our little apt. Although, we do miss the cat who is still in Houston this week?!
On Sunday, us and 8 of our friends went to church and out to lunch. It was so wonderful to have group of friends all together worshiping Jesus! We are planning on going again next Sunday!
Yesterday Ryan had his labs drawn at the Osceola Cancer Center, and we were just amazed at the short time we were "in and out." His whites are 2.2 (down from 2.9), reds at 3.14 (up from the blood he got last friday), and platlets at 98 (down from 139). We are still waiting on his Chem 12 panel, magnesium, and a couple of other figures. So, this means that the chemo is working in his body...but with his whites, reds, and platlets at low levels he is more suspetible to infections, fatigue, and improper blood clotting.
Last night, Ryan's "guys" shaved his head and boy does he look cute! It is so smooth and baby-soft, but it was also hard psychologically. We are home and somehow think everything should be "normal" and it's still a shock when we realize what is truly happening. Ryan's stomach has been pretty upset and painful, so we are trying some new meds to help. He is just squirming to get a comfortable position.
Today we are planning on doing a few errands,e-mails and hanging out here. Keep signing the guestbook to let us know you visited.
Lots of Love, Laura and Ryan
Friday, August 22, 2003 9:50 PM CDT Good Evening!!! We have Internet....I am so excited. Okay, quick update before I turn in for the night. First things first, Ryan and I are flying home to Orlando tomorrow to spend the week and see our family/friends=) Ryan has a break from chemo before the next cycle starts.
The past week has been good, a couple of long days at the hospital. Good thing we don't live very far away. Ryan had another biopsy on Tuesday and it showed only 2 bnormal cells, so the doctor is calling it a Remission!! Thank you God! Ryan's counts are low, but not too bad. He's still very fatigued and has a sensitive stomach lately. His beautiful hair is starting to fall out too, maybe it will come back curly this time;)
We have also met two couples close to our age, and of course we wish they weren't there for cancer treatment, but it has been nice to talk and visit with someone who is in similiar shoes.
Ryan got blood today, as well as magnesium and fluids to kinda tank up for the weekend. We are so impressed with the MD Anderson staff, everyone is so caring and professional.
Thank you all so much for signing in and keeping us in your thoughts and prayers, we both appreciate it from the bottom of our hearts.
I am trying to put some new pics on.
Love and Prayers, Laura and Ryan
Friday, August 15, 2003 1:17 PM CDT Dear family and friends-
This is Laura's sister, Maggie. Today Laura and Ryan recieved excellent news! Ryan's leukemic blasts are down to 4%. At last draw the percentage was 74% so this is GREAT news. Ryan's white blood cell count is down to 2.8 and the platelet count is 141. Ryan is feeling somewhat fatigued and dehydrated, but with only one more round of chemo to go spirits are good. The search for donors is continuing and so far 2 or 3 possible donors have been located. The goal of the transplant team is to have a MUD transplant. (matched unrelated donor) Please continue to keep Laura and Ryan in your thoughts and prayers.
Tuesday, August 12, 2003 8:55 PM CDT Hello! Wow, Mom did a wonderful day updating=) I finally found a place to get on the internet at the Hospital, but I only have like 5 minutes now....Thank you all so much for checking in (almost 800 visitors) and giving your thoughts! Amazing how far a little web-site like this can reach. I am so blessed to have a nation wide support team of friends!!!
We have had a very busy and informational day and Ryan is finishing up chemo/fluids now so I better run. I promise I will update soon, I miss that!!!
Lots of Love, Laura and Ryan
Monday, August 11, 2003 9:41 PM CDT Dear Family and Friends,
Good evening to all.....this is Laura's Mom entering the new thoughts in the journal. Laura and Ryan will most likely have internet connection by the end of this week.
Thank you, each and every one, for your sincere words.....all of you are wonderful, CARING human beings and ALL of you are so appreciated and loved.
Presently, Ryan is experiencing several side effects of the chemotherapy......tingling in his fingers, low energy, and just generally "yucky".
Tomorrow, August 12, starts early ( 7:00am) with drawing of blood for values, also another bone marrow biopsy, an appointment with Dr. Giralt of the bone marrow transplant department,an appointment with Dr. Thomas of the leukemia department, and finally the actual chemotherapy infusion.
Last Friday, August 8th, Ryan had a MRI to check for structural damage like a hairline fracture or a compressed vertebra that may be the contributing to the intense back and rib pain. No results have been shared yet.
Ryan's dad, Bob, is visiting with Laura and Ryan this week and he gives them wonderful hugs and encourgement!
Laura shares that their apartment is beginning to feel comfortable and she will update all of you soon.
Thank you all for your prayers, caring thoughts and love!
Monday, August 4, 2003 8:33 PM CDT Dear Family and Friends,
This is a "journal update" from Laura's mom as Laura and Ryan have just moved into a lovely apartment and their internet access is not quite ready. Their postal address is 1330 Old Spanish Trail, Apartment 8111, Houston, Texas 77054
First of all, I wish to thank each and everyone of you for your encouragement, words of wisdom, prayers for strength and healing, and your love! Laura and Ryan are so precious and so loved by all of us.
Ryan and Laura had a consult with Dr. Giralt on Friday August 1, 2003. Dr. Giralt is associated with the bone marrow department at M.D.Anderson. Dr. Giralt presented several options: donor lymphocyte infusion, or cord blood transplant, or a 2nd bone marrow transplant. At this time the most preferred option is the bone marrow transplant using a different donor.
Some other decisions that Ryan, Laura, and Dr. Giralt will need to make are how to prevent graft verus host disease post transplant and the course of maintenance therapy to keep the leukemia in remission.
Dr. Giralt would like to transplant within 8-9 weeks from now. Ryan's brother, James, and his parents are being typed for a certain number of markers necessary in a related bone marrow transplant. Coordinators at M.D. Anderson are searching the "donor bank" for unrelated donors that have certain number of markers.
Tomorrow, Tuesday August 5, 2003 Ryan will be receiving another dosage of Vincristine.
Thank you all, once again for caring so tenderly for these beautiful young adults.
Thursday, July 31, 2003 2:03 PM CDT Good Afternoon!! Hello from "Hot Houston", it has not rained since we have been here! Pretty wild from living in Florida where it rains every afternoon. We haven't really had time to explore outside the medical/downtown district, but hopefully we will have some time off to see the museum district soon.
Yesterday we waited in the room...organized, packed our stuff up to move into our apt., and rested. Ryan's chemo was schelduled for 6pm last night. At first we were really surprised, but we later found out that the unit is open until 3 in the morning!
Ryan got his vincristine and some fluids last night, and the infusion went well with no side effects. Ryan says that he can smell and taste some of the infusions, but that is tolerable. Our nurse, Carol, was so sweet and made us feel right at home. I was like a hawk making sure she followed the orders perfectly! The infusion unit has 26 private rooms complete with patient beds and "comfy" chairs. At first we were nervous that the infusion area would be like a Sam's Club/Costco as opposed to our previous mom and pop store because it is so big, but those worries didn't last long.
Today we spent the morning with a pain managment center doctor, and she was very sweet also. After the medical history and lots of questions about Ryan's back/rib pain, the Doctor ordered an MRI and tweaked some of Ryan's meds. We will be continually working with this great service to help control pain, stiffness, and uncomfortable symptoms.
Tomorrow we do labs, lab review, and consult with the bone marrow tranplant team. Sometimes, there is so much to remember! But,we feel very positive with the care here and have been so blessed with great medical care, family and friends, and our God.
Talk to you soon.
Love, Laura and Ryan
Tuesday, July 29, 2003 9:52 PM CDT Hello Everyone! Thanks to all of you who have been checking the web site and signing the guestbook. Even if it's just a hello, we love to see that you checked in. Feel free to give the web-site to anyone you think would be interested!
Okay, here's the update...we spent the afternoon with Dr.Thomas and boy is she great! She is so confident and has authored many articles on relapsed ALL. She has two treatment programs that can be completed in either sequence. Frankly, we are just delighted to have options. We are going to start with a liposomal vincristine and steroid plan. The vincristine(chemo)is put in a lipid solution so that higher doses can be tolerated and given once per week. Steroids will follow the vincristine infusions, along with several preventative medicines for kidney damage, stomach upset, pain and infections(bacterial, fungal and viral). I am a regular pharmacy here=)
Ryan has had vincristine before, almost 2 years ago. It has a common side effect of numbness/tingling in the hands and feet, which he experienced last time but there is really no way to predict how this round will go.
The vincristine is part of a Phase I/II study, which is a little scary being in its early testing stages. However, Ryan will be monitered with blood, bone marrow, and frequent doctor consults. I was pretty impressed with the "check-ups."
If this 4 week regiment fails or has severe side effects, then Ryan would most likely do a Hyper-cvad program. That would be several chemos in a strategic sequence. What we are trying to accomplish is start with "baby steps" and then (if needed for a remission) go to the "big guns" of more intense chemo. Ryan has always been very responsive to chemotherapy and has had a long remission (1 and a half years.)
Dr. Thomas's goal is to get Ryan's leukemia in remission and the possibility of a cure is always present. We will be talking to Dr. Giralt in the Bone marrow transplant department on friday to discuss our current situation and a second bone marrow transplant.
On the housing front, it looks like we wil be moving into our new apt. on Friday. They are cleaning/painting it now.
Something I just thought of--- The Leukemia/Lymphoma Society does a walk called "Light the Night" to raise money and awareness for research. If you are interested in walking, go to the Leukemia Society web-site to search for a walk in your area. You may walk in honor or memory of someone!
I will update soon.
Love and Blessings,
Laura and Ryan
Monday, July 28, 2003 11:21 AM CDT Hello Everyone! Well, it's a new week...full of new challenges and hopes. Every day is a new day, especially with Ryan. I am so proud of him, he has been having some intense back/rib pain but he never complains. He just keeps on smiling.
We chose an apt. that is close to the medical center, safe with gates and a nightly gaurd and clean. Ryan's parents are giving the apt. a final check today for maintence, and to make sure it's in good shape. Then the paperwork will be signed. I think that we will all feel better when this is complete. The appliances are provided and we have picked out some beautiful furniture.
We saw a couple of movies this weekend...Italian Job was a good action movie, with minimal violence and more strategy. We saw Pirates of the Carribean too, and I thought that Johnny Depp was fantastic.
So, tomorrow we have labs, a doctor consult, and a heart function test. I will update after the consult!
Love and Light,
Laura and Ryan
Friday, July 25, 2003 4:41 PM CDT Good Afternoon! Wow, things have been happening quickly and slowly around here at the same time. We have been looking at aptartments in the area, the medical center loop, and narrowed it down to 2 complexes. Of the 8 complexes we toured, there are no more than 3 units available. This Houston medical district is a hot little market!
One place we are looking at is a condiminum property, as in you rent to buy! A really interesting idea for a long term stay, possibly a way to pay yourself for the property. The other place is just cute, in a residential area. Hopefully we will be deciding today or tomorrow.
Ryan is feeling okay, pretty tired still and having moderate pain. He is so brave though, never complains. He's having more bone pain than muscle pain now. But, his labs look perfect and his bone marrow shows typical results.
We had a meeting with Dr.Thomas yesterday and she got Ryan's records from Shands. She is looking at what chemos Ryan got, and all the medical details. She presented us with several options for remission. Yahoo, we like options! A couple intensive chemo plans and another semi-invegtigational treatment. She will be talking with the research nurses on tuesday and then presenting the best treatment plan.
We also found out that Ryan has "osteopenia", a thinning of the bones. This is probably from steroids, chemo, radiation, and general body stress. So, Ryan may be starting some bone building drugs in the near future.
Hopefully, this weekend we can explore the Houston area a little. Maybe try some more TexMex food! Talk to you soon.
Love, Laura and Ryan
Thursday, July 24 at 8:45 pm
Hello Everyone! Just wanted to say that we have been apt hunting and narrowed it down to two possibilities. And we had another doctor consult today, Dr.Thomas has lots of options availabe! I will update details in the morning---Ryan is in some pain and we are just tired. Lots of Love, Laura
Wednesday
Hello and Good morning! Sorry it has taken me so long to write, but thanks for still checking in. We have been super busy. I am not even sure where to start. On Sunday, all of our friends went to church with us...we felt so blessed! One of our friends even accepted Jesus into his heart and I know that his life will be forever changed. Then on Monday we made it to the airport, but not before our ride got a flat tire. As Mom says, never a dull moment.
Ryan's parents met us at the airport and we experienced the Houston traffic. I learned that Houston is the 4th or 5th largest city in the US! Ryan and I are staying in the "medical district" at the Rotary House, a beautiful, beautiful place connceted via skybridge to MD Anderson Cancer Center.
Tuesday we started out bright and early with a bone marrow biopsy. Ryan was especially dreading this, however it did not meet any of our fears. The biopsy was done with no sedation/pain meds and with 4 nurses assisting. The entire procedure lasted about 15 minutes and Ryan was able to walk out! We were shocked, but also delighted at this new method of biopsy. The preliminary results show about 75 lasts. Nasty little leukemia cells!
Then we went to labs, and those were also smooth and successful. This particular lab was taking samples from 150 people that day and were so efficient. The leukemia patients do a lab called "fast track" meaning their samples will be processed in one hour instead of up to 4 hours at the regular lab. I was pretty impressed. Those preliminary results are all within normal range. Yahoo! The morning finished up with a chest X-ray.
We had some time to rest and collect our thoughts before our 4pm doctor visit. After filling out all of the paperwork, we met Dr. Thomas of the Leukemia Department. The Leukemia and Bone Marrow Transplant dept's are seperate here, but work closely. Dr.Thomas was mostly interested in Ryan's previous medical history, chemos received, any medical traumas, and so on. She was not willing to discuss any "game plans" until Ryan's test results were back and the records from Shands were received. Ryan and I were able to answer most of her questions though! She seems quite confident and aggresive towards leukemia, something we all deeply respect. We will meet with her again on Thursday for whatever the next steps will be.
Ryan is feeling okay, he is probably the bravest and strongest person I know. His torso/chest muscles are painful from muscle spams/tightness and he has a little bone pain and fatigue. We got some new meds...muscle relaxer and celebrex to help.
Overall, we feel comfortable and happy with MD Anderson and their professionalism, efficiency, etc. Many questions and treatments remain, but the atmosphere has been very postitive thus far.
Thank you so much for all of your support. We could not to it without you! I will update soon.
Love and Hugs,
Laura and Ryan
Saturday, July 19, 2003 9:53 AM CDT Good Morning! This web page is so cool, amazing that there are 100 visitors already. Well, we received our appointment schedule for MD Anderson Cancer Center yesterday. Labs, a couple tests, and our doctor consult will be on Tuesday, July 22. We will talk with a doctor in the Leukemia department about proper chemotherapy and a 'game plan.'
I feel better that we are properly scheduled and nervous at the same time that it is really happening?! Ryan's parents are going to be driving over to Texas Sunday so that we have a car there and Ryan and I will fly out Monday morning! We are packing, organizing and getting prepared today.
Talk to you soon!
Love, Laura Marie
Thursday, July 17, 2003 11:25 AM CDT Hi Everyone! Thanks for checking Ryan's web-page. I (Laura, Ryan's fiance) just created this page and since I am not a computer expert, it will be quite an experience=) I have some friends with caringbridge web pages and it is really a great way to keep in touch over many miles.
For those of you who need an update, Ryan's bone marrow transplant was 1 year and six months ago. It was/is considered successful! Ryan and I went back to college last school year and are leading a pretty "normal" life! After experiencing some back pain, Ryan and I went to Shands for a bone marrow biopsy two weeks ago. The biopsy showed 50% abnormal/leukemic cells. We were shocked!
So, the plan for now is to travel to MD Anderson Cancer Center in Houston, Texas and begin testing/consulting with doctors about more chemotherapy to put the leukemia in remission and then possibly another bone marrow transplant.
We are positive that with God's hand, our family/friend support, wonderful doctors and desire to beat cancer that the road ahead will be shaky, but our path will lead to good things! We have been so blessed in many ways.
This page will probably be updated every couple of days. Please sign the guestbook to let us know you viisted!
Thanks.
Love, Laura and Ryan
Tuesday, July 15, 2003 7:59 PM CDT This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
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