|
||||||||||||
Click here to go back to the main page.
Wednesday, December 12, 2007 12:24 AM CST
Today we awoke to find the most beautiful gift that only Heaven could send. The trees loaded with ice on a sunny winter morning. The whole world shimmering in white, no branch left untouched. The warmth of the sun shedding crystal shells that appeared like broken glass on the newly fallen snow. Almost appearing as thou the inner dome of heaven had fallen.
It brings a warm glow to my face as I think of how Ryan would have enjoyed such a Heavenly morning. He always had a way of making simple pleasures amazing!
He would wait by the window with great anticipation of the guest to arrive for each holiday, each birthday, and always gave a grand farewell of gratitude as they departed.
Today we celebrate Ryan’s 19th birthday in Heaven. The guest list must be amazing!
Our memories of Ryan are much like the season, it’s the only season that sends shivers up your spine and warms your heart at the same time.
We wish you and your family a snow globe Christmas!
The Shuman’s
Tuesday, November 27, 2007 11:43 AM CST
As many of you know December 1st will be one year from the time Ryan passed away. We know that this has been a very difficult time for many, us included.
A death of a child seems unimaginable. Children are not supposed to die... Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...
When a parent dies, you lose your past. When a child dies, you lose your future.
But we have come to realize that in death comes life. The past year has been more meaningful than any. We have learned so much about living life to the fullest and to embrace all that comes to be. We know the true meaning of courage, strength and determination. But what we have learned the most is true friendship. We have made true friendships through what is now our lifetime journey.
We would like to invite everyone to light a candle on December 1st, at 10:30pm in remembrance of Ryan and the many others who have passed.
We really do appreciate your prayers and continued kindness that you share with our family!
In Gods love,
The Shuman’s
Wednesday, September 12, 2007 10:48 PM CDT
Hello all!
We just wanted to check in to say "HI" to the many of you who continue to check this website!
We are all truely moved by all of the continued support that so many of you give us on a daily basis!
We are not going to lie to all of you - we are doing well, however, we really miss having Ryan with us. We had a chance to watch many of Ryan's former teammates play baseball on the American Leagion team from EP that finished as runner-up in the American Legion World Series last month.
Another milestone has been watching his classmates move on the colleges and thinking that he would have been heading off too!
That being said, we are also enjoying keeping Ryan's spirit alive as we esablish the Ryan Shuman Foundation (www.ryanshumanfoundation.com) and starting the first annual Ryan Shuman Open Golf Tournament and Fundraiser scheduled for September 25 (noon) at the Stonebrook Golf Club in Shakopee.
Alicia is enjoying her senior year at Eden Prairie and Jessica is have a great start to 6th grade!
Suzi and I - we are keeping very busy with the golf tournament, foundation, and our jobs where we are back in full swing!
If you get a chance, please visit the foundation website and sign the guessbook!
God bless all of you and we thank each and every one of you for the continued prayers and support!
The Shuman's
Tuesday, August 14, 2007 9:47 PM CDT
Hello everyone!
Just checking in to say high and to let you know that we are doing well and we have been very busy creating the Ryan Shuman Foundation.
The purpose of the foundation is to raise money to help fund the Ryan Shuman Strength, Courage, and Determination Award & Scholarship as well as two other wonderful organizations – The Children’s Cancer Research Fund (CCRF) and Make-A-Wish of Minnesota.
The SCD Award & Scholarship is awarded to a graduating senior hockey player that demonstrates the same characteristics that Ryan possessed – Strength, Courage, and Determination. The 2007 award winner was Dean Bauers from Duluth Central.
Children's Cancer Research Fund is dedicated to finding a cure for childhood cancer by providing critical funding to the Cancer Center at the University of Minnesota for cancer research and training relating to the prevention, treatment, and cure of childhood cancer. The organization also educates the public about pediatric cancer and supports quality-of-life programs for pediatric cancer patients and their families.
The Make-A-Wish Foundation of Minnesota was established in 1982 and has since granted over 2,800 wishes, each one combining a bit of magic, a lot of love, and many wonderful memories. Wishes can range from having a special toy to a family trip to Disney World; be as functional as a computer; or as exciting as meeting a favorite celebrity. Whatever the wish, it is the dream of the child. In fulfilling wishes, the Make-A-Wish Foundation of Minnesota puts emphasis on the joy of having a wish come true... it has been said that doctors provide the medicine and we provide the magic.
Please visit our new website – www.ryanshumanfoundation.com
Please join us on September 25, 2007 at the Stonebrooke Golf Club (noon shotgun) for a great round of golf or for dinner at 6:00 pm.
The Ryan Shuman Foundation – Committed to the Cure!
Tuesday, August 14, 2007 9:44 PM CDT
Hello everyone!
Just checking in to say high and to let you know that we are doing well. We have been very busy creating the Ryan Shuman Foundation.
The purpose of the foundation is to raise money to help fund the Ryan Shuman Strength, Courage, and Determination Award & Scholarship as well as two other wonderful organizations – The Children’s Cancer Research Fund (CCRF) and Make-A-Wish of Minnesota.
The SCD Award & Scholarship is awarded to a graduating senior hockey player that demonstrates the same characteristics that Ryan possessed – Strength, Courage, and Determination. The 2007 award winner was Dean Bauers from Duluth Central.
Children's Cancer Research Fund is dedicated to finding a cure for childhood cancer by providing critical funding to the Cancer Center at the University of Minnesota for cancer research and training relating to the prevention, treatment, and cure of childhood cancer. The organization also educates the public about pediatric cancer and supports quality-of-life programs for pediatric cancer patients and their families.
The Make-A-Wish Foundation of Minnesota was established in 1982 and has since granted over 2,800 wishes, each one combining a bit of magic, a lot of love, and many wonderful memories. Wishes can range from having a special toy to a family trip to Disney World; be as functional as a computer; or as exciting as meeting a favorite celebrity. Whatever the wish, it is the dream of the child. In fulfilling wishes, the Make-A-Wish Foundation of Minnesota puts emphasis on the joy of having a wish come true... it has been said that doctors provide the medicine and we provide the magic.
Please visit our new website – www.ryanshumanfoundation.com
Please join us on September 25, 2007 at the Stonebrooke Golf Club (noon shotgun) for a great round of golf or for dinner at 6:00 pm.
The Ryan Shuman Foundation – Committed to the Cure!
Thursday, July 5, 2007 3:06 PM CDT
I Am Always With You"
When I am gone, release me, let me go.
I have so many things to see and do,
You mustn't tie yourself to me with too many tears,
But be thankful we had so many good years.
I gave you my love, and you can only guess
How much you've given me in happiness.
I thank you for the love that you have shown,
But now it is time I traveled on alone.
So grieve for me a while, if grieve you must
Then let your grief be comforted by trust
That it is only for a while that we must part,
So treasure the memories within your heart.
I won't be far away for life goes on.
And if you need me, call and I will come.
Though you can't see or touch me, I will be near
And if you listen with your heart, you'll hear
All my love around you soft and clear
And then, when you come this way alone,
I'll greet you with a smile and a "Welcome Home".
Thursday, May 10, 2007 3:32 PM CDT
Happy Mother’s Day to all of you Mom’s and those of you who have Mom’s!
This will be the first Mother’s Day that I will celebrate without Ryan. I have been asked time and time again, if I think it will be hard to celebrate it. My answer is simply “No”; I am planning on embracing it! See I had 6,559 Mother’s Day with Ryan; every day been a celebration of Motherhood with Ryan. There isn’t a day, moment that goes by that I don’t think about him, especially with all his classmates preparing for graduation. But than I have to remind myself that Ryan was borrowed to both Bob and I, and for that I am so very grateful for the 6,559 Mother Day’s we had together.
Below is a poem that I came across that reminded me of Ryan. Ryan loved this time of year; he loved all the dandelions that covered the fields. He made a statement that it was if his Grandpa Ray who was a gifted artist had touched the grass with the tip of his paint brush from heaven, and filled the fields full of the beautiful flowers.
I hope you enjoy the poem as much as I did…
http://www.geocities.com/griefpoetry2/mothersday.html
Dandelions From Heaven
Mothers Day is coming...and I wanted to send you a sign...
Something you can tell others..."Is from an angel of mine".
So I searched the Heavens high and low for that perfect thing..
And low and behold I found it....and a smile I hope it will bring.
So when you look to the Heavens...and see the yellow stars in the sky...
Just think of me...your angel... in the Heavens way up high...
And just imagine those stars...are dandelions up above...
Yes! Dandelions are also in Heaven...,which you know how much I love.
So on this Mothers Day... when you awake and feel blue...
You will notice those yellow stars...are no longer in view...
So just look to the meadows and the dandelions you see....
Are the ones I've tossed down this Mothers Day from me!
And when you find a dandelion that has turned from yellow to white...
You're supposed to make a wish...and then blow with all your might.
For you will be blowing kisses... to me in Heaven above....
And I will be catching them and blowing them back...sent with all my love.
Please know that I am with you...on this Mothers Day...
And also in the days ahead...God and I will never stray...
We will be with you in the morning...when you wake and see the sun..
We will be with you when you say your prayers...when the day is done.
For God and I will never be...very far from your side...
For I can now be everywhere...and God will be your guide...
So...remember when you see dandelions...its your guarantee...
That I am alway close to you....
For dandelions are free to roam.....now just like me.
I will always be with you Mom....
Happy Mothers Day
Love, Your Angel in Heaven.
Monday, April 23, 2007 3:40 PM CDT
Hello to everyone…
We need to apologize for not keeping this site as updated as we would like. I know many you check it out regularly. As we do also for support from your entries.
Here is our attempt to update you since our last entry. March came in like a lion not a lamb at the Shuman household.
Bob’s mom celebrated her 80th Birthday on March 12th.
In April we took a well needed vacation as a family. We cruised through out the western Caribbean. We had a total of three different ports, in each we let some of Ryan’s ashes go in the sea. It was very different not having Ryan with us physically, but he was with us in spirit. Ironically someone on the cruise ship saw Bob wearing one of Ryan’s red bracelets and asked if that was for the boy who passed away in Minnesota.
We arrived home, only to leave seven days later. Bob was awarded a trip to the Legends Golf Tournament in Savannah, Georgia through his employer Liberty Mutual. Bob and I enjoyed five days together.
Next week Bob and I will celebrate our twentieth wedding anniversary. It’s hard to believe it’s been already that long.
We have been busy making plans for the CCRF Time to Fly Walk/Run. This year they are doing it in Ryan’s memory. The event takes place in June, more information will follow.
Recently an article ran in the May issue of Seventeen, from Alicia. Alicia was pictured twice in February’s issue. She wrote the editor, thanking them for the opportunity; they then decided run it in the May’s issue. Check it out if you get a chance.
Thank you all to continue to hold our family in prayer. We really have been taking things day by day, minuet by minuet. We miss Ryan so much but have found such strength in the gift he has left so many. We were recently reminded of this through the sudden loss of our little neighbor girl who passed away suddenly April 14th. We were told by her parents what a deep impression Ryan had left in their daughter’s life, and assured us that Ryan and their daughter are hand and hand together in heaven today.
Sunday, March 4, 2007 8:34 AM CST
Good Morning,
We just wanted to thank so many of you for not only stopping out at the Ridgedale Mall this weekend but to also thank you for your donations for the KS95 Radiothon.
This year Bob,my brother (Steve) and I were working on the phones taking pledges. Ryan’s friend (Zack) worked behind the scenes processing the pledges. It was not only especially neat to receive calls from fellow students and friends but from total strangers that felt compelled after hearing Ryan’s story on the radio.
We were a little nervous because Mother Nature wasn’t cooperating, but on Saturday the total pledges received were higher than last year! The final count was $912,950. What an incredible event!
If you didn’t get to hear Ryan’s story on the radio, we would be happy to forward it to you, Bob’s email is listed on our Home Page.
If you would still like to give, they are still accepting donations, visit this link http://www.ks95forkids.com to find out how.
Thank You!
The Shuman’s
Thursday, March 1, 2007 10:43 PM CST
Good evening,
Well if you are reading this from the lovely state of Minnesota, I am sure you spent most of your day and evening like us, digging out from our BIG snowstorm. This would have been Ryan’s dream, he always loved storms and especially that involved snow.
Alicia was awaken this morning by the sound of Ryan’s voice, today KS95 began their radiothon, and Ryan’s story was the first that they played. Alicia had her alarm set, just as she always did, but never expected to hear Ryan’s voice. What a nice surprise!
I found myself tearing up through out the day as they played many of the children that we met at Fairview University stories. This year we lost not only Ryan, but also two other warriors. Both Laura and Magna’s stories will be played along with Ryan’s through Saturday. All three such brave, courageous children.
I sometimes struggle between, grieving the gift I lost or embracing the gift I had, but then realty brings me back to the understanding that I haven’t completely lost the gift, Ryan continues to make me so proud by the legacy he has left. What I do know is that I am embracing life to it’s fullest, just as Ryan did.
The EPHS boy’s hockey team will play Saturday against Edina. Tonight two of Ryan’s teammates paid us a visit. The boys had stopped to visit Ryan’s gravesite before coming to our house. They arrived with snow soaked pants up to their knees. It was great to see Bob and the boys exchanging Hockey trivia. They definitely made our evening.
This weekend if you’re out and about, we will be at Ridgedale Mall working the KS95 radiothon after 1:30PM. We hope to see you then!
The Shuman’s
Check out the article about Ryan.
http://www.ks95forkids.com
Thursday, February 8, 2007 5:00 PM CST
Greetings from the Shuman’s,
Today both Bob and I met with Greg & Cheryl, radio personalities for KS95, to tape an interview that will run through out the KS95 Radiothon March 1-3.
One of the questions that they asked was so, what does it feel like to find out your child has cancer. A question, neither one us twenty nine months ago would ever have to think of tackling. Yet in September 2004, that was just what we were told. It’s was unimaginable, cancer, not my son he’s never even sick.
The experience shakes you to the core. What I had always believed, what had been a rock in my life when things didn’t go as planned, had been, “well, at least I have three healthy children.” Those words would never ring true again.
Then the journey begins, sleep becomes a distant memory. The twenty nine month journey had its many ups and downs. At times it was a nasty roller coaster ride that none of us, especially Ryan, bought a ticket for.
Some of the blessings that did come with this journey were that the hugs were much sweeter, time with Ryan much more precious and simple things became triumphs.
Thank God for the staff at Fairview Children’s University Hospital they were very supportive. I have no idea how they do what they do. I am still in awe of them-doing what they do, and somehow managing smiles on their faces, while children continue to lose their battles.
People ask us often, “How do you stay so strong?” We get our strength from those who surround us with support. People familiar and unfamiliar to us, continue to help our family mend our broken hearts.
The last question they asked was, what would Ryan want to say to anyone who listening to this interview. Ryan would have wanted to give his support to the kids that are fighting this battle, keep strong, don’t give up! As for the listeners, I know Ryan would want them to know how very important it is to be proactive, not to wait until someone you know or yourself has to go through this.
We will let you know more details as we get closer.
God Bless,
Suzi
*Check out the article about Ryan.
http://www.ks95forkids.com
Saturday, January 6, 2007 9:52 PM CST
It’s Saturday evening, we just finished playing the worlds longest game of UNO, and just in case you’re wondering Jessica beat us both.
Alicia was lucky enough to score tickets for tonight’s Wild game. She is there in a suite with the Kramp family and friends.
We have had a busy past few days; Friday was exciting for our entire family. Fox Sports Network was out at our house filming a segment that will air during the special on January 20th, Hockey Day in Minnesota. Allie Lucia interviewed us both about the past twenty nine-month journey with Ryan. We aren’t sure exactly where it will air, but we can reassure you the DVR will be going for the entire 11 hours.
Friday was also very exciting for Alicia, the February issue of Seventeen magazines hit the newsstands, and Alicia appears twice in it. You can find her on pages 83 and 44. For anyone who is interested, I am sure Alicia would be happy to sign any copies for you. (ha,ha)
Alicia will celebrate her seventeenth Birthday on January 15th. She hasn’t decided on how she would like to celebrate it, but I am sure it will be with friends.
We hope everyone had a wonderful New Years!
There ia a nice article on the KS95 web site on Ryan. The radioathon is right around the corner. We are anxious as a family to participate, it will be our 3rd year. http://www.ks95forkids.com/story20.html
God Bless,
The Shuman’s
P.S. There are new photos and a new
January 1,2007
Happy New Years!
We hope everyone was able to ring in the New Year with friends and family.
This year is the first year where I found myself anxious to actually change to another year. Typically it takes me a dozen times to stop writing the previous year, but not this year. I am ready more than ever to continue life’s journey and Ryan will be there with us in spirit.
I am reminded daily on what amazing gift we were given with Ryan by all the touching emails, caring bridge entries and heart felt comments.
I thank God every day for allowing Ryan to continue to make us proud parents.
We hope you all have a wonderful new year and continue to have breath taking moments!
Suzi, Bob, Alicia and Jessica
Wednesday, December 13, 2006 10:07 PM CST
Thank you to all of you that have sent well wishes on the Caring Bridge website, the cards, and phone calls over the past days. They have been truly inspiring to us to see the support from the community.
Yesterday was a special day – it was the day that we buried Ryan and it would have been his 18th birthday.
The service was very special – a small gathering that included family and some of Ryan’s closest friends.
Both girls are back in school and Suzi and I are getting back to work as we are getting ready for the holidays. The biggest challenge we have today is getting the “thank you” cards out.
Also - please take a look at the link below named Ryan's Video which will bring you to a video that a classmate of Ryan's made for him in his memory.
Also, we have changed the photos.
Our plans are to continue updating the website from time-to-time.
Thank you all for the support and continued prayers.
The Shuman’s
P.S. Check out Alicia's link to the video she created for Ryan
Thursday, December 7, 2006 10:52 AM CST
Where do we begin!
The funeral – a celebration of Ryan’s life – was absolutely beautiful!
Like the Rally for Ryan event, we had a chance to see how many people Ryan had touched.
We started the visitation at 4:00 pm and the processional line continued right up to the 6:30 pm service start time with many people still in line. We couldn’t help but feel bad that there were many people that never made it down to visit Ryan and see us. Not to mention, we had heard that the line flowed outside the church on a very cold night!
It was neat because the visitors were able to write on the casket a special message to Ryan that will stay with him.
The service was led off by a procession of the EP Boys Varsity hockey team, and then followed by Ryan who was escorted by pallbearers (4 of Ryan’s close friends – Matthew Smith, Konstantin Posherstnik, Jake Kelbrants, and Zack Silverman). Then we (the family members and Sophie) followed!
The service was conducted by close friends Pastor Rod Anderson and Pastor Hans Wiersma. Then Coach Lee Smith and four members of the EP hockey team (John Kruse, Adam Heimer, Brian Brooke, David Meyer) came up to conduct eulogies. The words were so strong and were filled with so much meaning. They made use laugh, cry, and most of all, remember Ryan – the Ryan that we all loved and miss!
Then it was time for us to speak. Jessica – his 10-year-old sister led off by a poem she read for Ryan, then Alicia, spoke about the memories and how she will miss his humor, then followed by Sophie – his girlfriend – who spoke of their fun relationship and the memories. The girls did an absolutely wonderful job!
Then it was our turn – we spoke about the fun times with Ryan and shared some great memories and closed out by talking about breath-taking moments and to remind you all how luck we are all are!
At the end of the service, Ryan was led out to the foyer with the boy’s hockey team (with sticks lifted in hand) and the girl’s team right behind them to give Ryan a true hockey salute and farewell.
The processional line continued during the reception until it was time to go home around 9:30 pm.
We do not know how many people were there, but the church was absolutely packed and I know there were hundreds that were there during the visitation but could not stay for the service. The estimated number was over 1500.
Last night, at 7:30 pm, we were met at the door with around 300-400 students from EPHS Christmas carolers. They had parked at Forest Hills elementary school, lit candles, and led a vigil walk to our house, which is a one-mile walk in the cold to show their love for Ryan and support for us! (video footage can be seen on Fox 9 News)
How cool is that. We were completely caught off guard and so moved of the kindness and love this community and school have shown us!
Many of you may have heard us say this before, however, if we could only have half of the determination, strength, and courage that Ryan had, we would be lucky! It is amazing to us the number of people he has touched in his short (almost 18 years) life on this earth!
God bless all of you for the support, the guestbook entries, and just being there for Ryan, his sisters, Alicia & Jessica, and us!
With great appreciation!
The Shuman’s
Sunday, December 3, 2006 10:43 AM CST
Thank you all for the wonderful guestbook entries and your continued support.
Ryan really enjoyed reading all of the entries and we know that he is still reading them. He knew and felt the love from all of you.
He often commented on how many hits were on his website and the words that have been written in the guestbook and was always amazed of the support that surrounded him. He often commented that with all of this support and prayers, he would not let anyone down.
I have to tell you and I think you all will agree – he didn’t let anyone down! In fact, he exceeded all expectation of what a truly great person he was.
Ryan showed us more strength, determination, courage, and the will to fight then most people could ever imagine. Here was a young man that did not want to take his vitamin a few years ago, and suddenly, we was taking sometimes more then 40 pills a day, taking injections and living with pain that was beyond our comprehension. All this to fight this disease to the bitter end.
I can tell you that we are all better people for knowing Ryan! As we read the entries, it is clear that he touched people that he had never personally met before which is a powerful statement of who he is and was.
Yesterday was like so many other days at the Shuman household – Alicia had her friends over and Ryan had his friends over to the house, which was a wonderful thing! They had made a promise that they would play one last round of poker and it was held yesterday at our house.
We will celebrate his life on Tuesday – here are the details:
Funeral service @ 6:30 PM - Tuesday, December 5
St. Andrew Lutheran Church
13600 Technology Drive (1 mile west of 494, along State Hwy 5) in Eden Prairie. Visitation from 4:00 – 6:30 PM.
In Lieu of flowers, memorials preferred for future hockey scholarships in memory of Ryan, the Make-A-Wish Foundation, or the CaringBridge.
If you are planning on attending and if you want to wear your jersey, please feel free to do so – that is what Ryan would have wanted.
God bless all of you and thank you!
Saturday, December 2, 2006 0:00 AM CST
Hello all:
We are writing this journal entry with great mixed emotions.
This evening at 10:30 pm, Ryan peacefully passed away with his family and Sophie at his bedside with the TV on listening to a hockey game. Ryan has now joined his two grandfathers and uncle in heaven.
Ryan’s last day was a wonderful day. His day ended like it started. He was with his family and Sophie, then a massage therapist arrived and gave him a complete massage, which was very soothing for Ryan, then a Fairview staff member came and gave him a complete bath. Throughout the day, Ryan was visited by members of our family, and he had been able to visit with some of his closest friends.
In fact, the last group of friends left the home at 9:30 pm then he was able to spend his time with his family and Sophie.
We know that Ryan is now at peace in heaven and feels no pain and for that we celebrate.
We will make additional entries over the following days and keep everyone posted, but at this time we want to say thank you to all of you for keeping Ryan in your prayers and thoughts. Ryan appreciated the guest book entries and loved to see the support that you all gave to him.
From our family to all of you – God bless and thank you!
The Shuman’s.
Friday, December 1, 2006 12:12 AM CST
Well, things have not gone real well for Ryan over the past couple days and has really taken a turn.
On Wednesday around noon, Ryan began to become incoherent and was having a difficult time communicating. Coupled that with his labored breathing, we knew that his body was showing signs that it had had enough.
Yesterday Pastor Anderson visited with Ryan and us and then we met with Fairview Hospice to help manager Ryan’s pain.
It is evident to us and the doctors have confirmed that Ryan’s body is shutting down. Ryan understands what is going on and seems to be at peace with the fact that he will soon be with both grandfathers and uncle in heaven.
We are taking this time to be together as a family and spend our time with Ryan and as always, Sophie who has been there for Ryan 24 / 7 is at his bedside too as we feel that this is a very private time for all of us.
We will keep the posting updated as frequently as possible.
We just want to thank all of you for your support and prayers!
God bless
The Shuman’s (Bob, Suzi, Ryan, Alicia, and Jessica)
Wednesday, November 29, 2006 6:55 PM CST
Here is the latest update for Ryan.
Ryan continues to still stay at home which is great which allows us to care for him.
His white count continues to stay low as well as his platelets. As a result, Ryan has traveled to the hospital 3 times to get platelets and/or blood. The challenge is that he has had to be transferred via ambulance since he is unable to sit up.
Today, they were able to work out a plan to have a nurse come to the home and give Ryan platelets.
His pain level continues to rise, thus the doctors continue to increase his pain meds. Ryan was on 70 mg of Morphine and they replaced that with 6 mg of Dilauded and 300 mcg of Fentanyl along with his other meds which includes Dexamethasone (a steroid) that helps reduce swelling and acts as a pain reliever.
He currently is very tired and is having a difficult time breathing due the edema.
Today we spoke with Dr. Stephen Skypek from St. Judes hospital who is in the development stage with a drug that will stop cells afflicted with Rhabdomyosarcoma. At this time it is still only being tested on lab animals and won't be FDA approved for some time.
Each day we spend endless hours trying to find something, anything that might make a difference for Ryan, but unfortunetly we haven't been successful.
As you know Ryan has been taking the medicine that we received from St. Josephs Medical Center(Mexico)for nearly two weeks. There hasn't been any changes thus far.
We as a family have left it in Gods hands, he is in control.
Ryan had a great Thanksgiving! We had 17 (including all of us) for a wonderful turkey dinner.
On Friday, he enjoyed watching EP defeat Lakeville South in the State Championship football game
.
On Sunday, Ryan had a visit from 2 of the captains (John Kruse and Danny Vranek) from the EP Hockey team and they presented his with a team warm-up suit and they had a nice visit; which was a great boost for him.
As always, we appreciate and thank you so much for keeping Ryan in your prayers
*New photos have been added
Wednesday, November 22, 2006 10:54 PM CST
Sorry for the delay on this update but here is the latest.
We made it back from our Texas/ Mexico trip and we were very inspired with what we saw and experienced.
We visited a clinic just over the Mexican/Texas border called St. Joseph Clinic that it dedicated to the treatment of cancer patients. We met half dozen couples that were going through treatments they’re ranging from 2 weeks to 6 weeks of treatments. All were very upbeat and the all seemed to me making improvements in their fight against their illness.
We arrived back from the clinic with some natural drugs for Ryan that is intended to boost Ryan’s immune system to fight against the cancer. The hope is that Ryan would be able to travel to Mexico in a couple weeks to begin other treatments. The travel part may be the biggest challenge for Ryan is having a difficult time moving around due to the pain.
Ryan finished up with the radiation treatments to his hip, right knee, and tailbone last Saturday and he was discharged from the hospital on Monday. This proved to be very challenging for his pain was very sever and really could not stand.
Today Ryan’s white count began to rise to 1.4 from 0.9, which is great news! Ryan is taking GCSF to help boost is immune system and he is also taking the stuff from Mexico – question – which one of the two drugs are making the difference. Ryan’s platelets however, were very low, thus requiring Ryan to head to the Masonic Day hospital to get platelets.
Ryan is looking forward to having Thanksgiving at home with the family. No doubt, we will be giving many “thanks” tomorrow.
Thank you all for your support and prayers and have a Happy Thanksgiving!
Thursday, November 16, 2006 10:54 PM CST
Well, the results are in from Ryan’s CT from the other day. They found a tumor in his right knee and his right hip, which explains the new pain.
As always, Ryan is taking that news in stride and is ready to get his radiation treatments underway.
Today, Ryan received the first round of radiation in those two areas plus his tailbone area, which are the areas that are causing the pain. They are planning on three rounds of radiation in those areas so they should be done sometime this weekend or Monday at the latest.
His counts continue to stay low so they are going to continue to hold off on the chemo until the counts come back. They are giving him a GCSF drug to help boost the counts – hopefully that will make a difference in the next few days.
Suzi and I will be traveling to Del Rio Texas tomorrow to meet with a doctor who has some medications that he feels will be helpful for Ryan - special tanks to the Silverman’s who helped arrange the trip to Texas!
The doctors are planning on letting Ryan go home on Sunday and we hope that he can stay out for a while since the holidays are quickly approaching us – not to mention Ryan turns 18 on December 12.
Thank you all for keeping Ryan and the rest of us in your prayers!
Wednesday, November 15, 2006 12:43 AM CST
Here is the latest on Ryan.
Ryan was admitted back in the hospital yesterday (11/14) because his pain in his right leg (knee and hip) and the lower back.
Last Friday, Ryan began to feel some pain in his right leg and over the course of the weekend, the pain got worse. Then his tailbone began to increase in pain too which caused him to be bed bound.
On Monday, they ran his blood tests which showed low white count, low hemoglobin, and platelets - thus he was scheduled to go into the clinic to get blood. When Ryan tried to get up yesterday to go to the clinic - he found that he could not sit up due to the pain. It was then that he realized that he not only needs to get the blood products, but he needs to be admitted to get control of the pain.
Today, they are going to run some CT scans in his low back region and right leg to see the cause of the pain and put together a treatment plan which will more then likely be radiation.
On Friday, they will also do a MRI of the brain to make sure that the previous treatment worked.
Meanwhile Suzi and I are busy checking with multiple clinics/hospitals around the states, Mexico, and Germany for additional and/or alternative treatments.
Overall, Ryan's spirits are still good and he has begun the tutoring to continue to earn his credits so he can still graduate with his class. He is also continuing to make plans for college next year - his big question - is where!
Thank you all for the prayers and support!
The Shuman's
Friday, November 10, 2006 9:32 PM CST
Here is the latest update for Ryan.
Over the past couple days, Ryan’s pain in his lower back region began to increase and his right arm (humorous) began to hurt as well.
Yesterday (11/9) Ryan went to his weekly doctor visit and they decided to do an x-ray of the right arm and today, as Ryan was in getting his platelets, they told us that the results of the x-ray showed a fracture in the arm which explains the pain.
This was a location that a tumor existed and the are speculating that the tumor combined with a great deal of walking with the crutches over the past few days may have caused it to fracture.
To play it safe, they elected to do a one-time dose of radiation to that area to kill any tumor that may be trying to cause problems.
Also, they mentioned that he had a tumor a while ago on his tailbone, which was news to us, and they are making plans to radiate that area too. This helps explains the additional pain in his low back region.
It seems to be that we are playing the “seek and destroy” chase game – the tumors pop up and then we seek to destroy them. We are hoping that the chemo will give us a chance to get ahead of the game and stop the spread of the tumors. They are going to temporarily stop one of the chemo treatments because his counts are so low. We will re-evaluate next week to see if they can get him back on both chemo’s.
Ryan is looking forward to R&R this weekend, getting some studying done that his tutor has given him.
As always, we thank you for the prayers and supports!
The Shuman’s
Monday, November 6, 2006 4:05 PM CST
Here is a quick recap of the past few days… Ryan has kept a busy schedule getting caught up with friends and family.
Last Friday, we tripled dated with Sophie, Ryan and her parents Jim and Sharon. We had a lot of great laughs and not to mention wonderful meal.
Sunday, Ryan and Sophie went to the Red Hot Chili Pepper Concert. They had suite tickets that were given to them by his friend Zach. They said the seats were perfect and the concert was great.
This week Ryan plans to meet up with his tutor to get caught up on his classes. He is still focusing on graduating this year, and would like to attend College in Arizona or Miami. Both schools offer Meteorology programs, something Ryan has been interested in since he was little.
Tuesday Ryan will need to receive Platelet’s and will be seen by his Oncologist on Thursday.
It doesn’t look like the treatments in Bahamas will be a good match for Ryan. They referred us to a Doctor out of Germany, who we actually had done some research on before. We are also looking into an alternative treatment in Del Rio, Texas. If we chose to go this direction, Bob and I will need to fly down and meet with the Doctor there. We had Ryan’s oncologist take a look at the treatments, he said it looked like mostly natural ingredients, so he gave us the thumbs up.
It’s tough, I think we expect some great neon sign to guide us, but what we really need to do is be patient and wait for God’s hand to guide us.
Ryan continues to have great bone pain, he finds himself having to take additional pain killers through out the day. He manages to still remain positive and over all is enjoying himself.
Please keep us in your prayers…
The Shuman’s
Tuesday, October 31, 2006 10:10 AM CST
HAPPY HALLOWEEN!!!
Just wanted to give you an update on how things are going. The days seem to blend together lately, but over all Ryan is doing well! Yesterday Ryan started Cyberknife on his lumbar. We hope that this will bring him relief from the pain he has been having. There was some hesitation on having any treatment in this area, mostly due to the cement that they placed in August, but due to the amount of pain he has they have decided to go ahead.
Tonight Ryan and Sophie plan on camping out in front of the TV with some scary movies.
LivingSTRONG, The Shuman’s
Tuesday, October 24, 2006 10:06 PM CDT
Sorry for the delay on the update for Ryan.
Ryan has been home since Saturday and is doing well – defiantly enjoying home more the hospital.
Great news is that Ryan’s vision is still fine which leads us to believe that the radiation is working. Today Ryan completed the 6th round of radiation and still feels good – a little headache that is not unusual with that type of radiation.
Ryan’s back is still pretty sore in the lumbar area, which has yet to be treated by CyberKnife. Last week we received a call from St. Joseph telling us that they were not going to treat Ryan’s lumbar area due to some planning issues. Today we received a call and informed us that they are going to CyberKnife that lumbar area – this was great news to all of us, especially Ryan since the pain is getting worse.
Ryan’s left knee is really bad and that is the most painful area for him. We would guess that there is a fracture in the femur. Tomorrow I will speak to the orthopedic surgeon to discuss what the possible options are for treating this area.
Good news is that Ryan is in to his second week of chemo and is doing well with it. He has one more week to go to complete his first of round of chemo.
Even though the above sounds like a lot to be dealing with, Ryan is still doing well and keeping an upbeat attitude.
We have found some treatments that are being done in the Bahama’s that may be a possible benefit for Ryan. In this hospital in Freeport, they are currently performing some treatments that are currently being tested here in the states (Minnesota included), which could be a great benefit for Ryan. We are praying that they (Doctors in Freeport) will accept Ryan for these treatments – we should know by the end of the week.
We thank all of you for our prayers and support!!!
************************************************************************
We would like to give special thanks from the Shuman family to all who attended, sponsored, and donated to the event! The support from everyone was tremendous!
We can’t even begin to thank everyone that made this event the event so special – the support and love from everyone is overwhelming and we are lost for words on how to begin thanking everyone.
This event was a big boost for Ryan and enjoyed seeing many people that he hasn’t seen in a while. The event gave Ryan and all of us the encouragement to keep up the fight!!
************************************************************************
Thursday, October 19, 2006 8:45 PM CDT
************************************************************************
We would like to give special thanks from the Shuman family to all who attended, sponsored, and donated to the event! The support from everyone was tremendous!
We can’t even begin to thank everyone that made this event the event so special – the support and love from everyone is overwhelming and we are lost for words on how to begin thanking everyone.
This event was a big boost for Ryan and enjoyed seeing many people that he hasn’t seen in a while. The event gave Ryan and all of us the encouragement to keep up the fight!!
************************************************************************
As of today, Ryan is doing much better.
He woke up this morning and his vision was much better. He thinks that it is around 90% back and one of the first things he did this morning was turn on the TV – something he really didn’t have an interest in for the past couple of days.
Ryan had been complaining of some back pain after his seizure so they decided to run a CT and x-ray of the back and they found a compression fracture in the C2 and T6 vertebrae. They believe that this is a result of his movement during the seizure on Tuesday. The good news is that he is not in that much pain.
The orthopedic surgeon will visit with him tomorrow to share his thoughts with us about how to keep the back stabilized.
We knew that Ryan’s vertebrae would be fragile after the CyberKnife procedure so it was not a shock to everyone that this happened. The Cyberknife specialists said that it could take up to a year before the bones (vertebrae) would get strong again. Until that happens, Ryan will have to be very careful.
Ryan has completed 3 of the 10 rounds of radiation and he is feeling pretty good. Not sure when they plan to get Ryan home from the hospital, however, we are thinking that it will be pretty soon.
Thank you all for the support and prayers!!
The Shuman’s.
Wednesday, October 18, 2006 8:44 PM CDT
***********************************************************
Before I start out with another update on Ryan, we would like give a special thanks from the Shuman family to all who attended, sponsored, and donated to the event! The support from everyone was tremendous!
As I mentioned on the front page of the website, we can’t even begin to thank everyone that made this event the event so special.
We all felt the support and love from everyone and we are still lost for words on how to begin thanking everyone.
This event was a big boost for Ryan and enjoyed seeing many people that he hasn’t seen in a while. The event gave Ryan and all of us the encouragement to keep up the fight!!
***********************************************************
Here is the latest on Ryan as of this evening. Ryan is doing much better today. Yesterday was a little scary. Last night around 9:00 pm, Ryan had a seizure, which they are contributing to some swelling in the brain from the radiation.
They gave him some medication to reduce the swelling as well as some anti-seizure medication. After spending the night in ICU, they moved him back to 5B (his regular room) and has had no complications from today’s radiation.
Today, we are happy to report that his vision is slightly better and Dr. Neglia told Ryan that he feels that he should regain most, if not all, of his vision, which was music to his and our ears!
As I am writing this, Ryan is enjoying a pizza with some friends in his room and his spirits are higher.
Thank you all again for the prayers and support!
Tuesday, October 17, 2006 7:54 PM CDT
Here we go on another roller coaster ride again! Just as things were looking up for Ryan and we were hoping to get him home, something came up.
As you may recall, Ryan was doing great and had a blast at the Rally. He followed Sunday with another good day, and then yesterday came.
Around 6:00 pm Ryan began to experience blurred vision in both eyes as well as having no vision in his left eye.
Last night they performed a CT of the brain, which showed nothing, which was great news, however, didn’t explain the vision issue. Today, Ryan had an n MRI of the brain and a visit from the eye doctor. According to the eye doctor, his eyes looked good, however, felt that something must be causing pressure to the brain.
When we received the results back from the MRI, we were informed that there is a tumor on the surface of Ryan’s right side of the brain in the back of the head. Even though it was on the surface, it has caused some swelling and that they think is what is causing the vision issue. In addition to that, he has had a pretty bad headache over the past 2 days, which can be explained by the tumor too.
The doctors moved in to high gear and began Ryan on a steroid to reduce the swelling hoping that this will improve, if not restore, his eyesight. We should know within a day or two.
We also met with the radiologist today and they began the first of 10 rounds of radiation to the brain. The radiologist felt pretty confident that they would be able to eradicate the tumor with the radiation.
For the first time since his diagnosis, Ryan is pretty scared. The possibility of losing your eyesight or a portion of it is pretty scary!
We have faith that all will work out for Ryan. Especially since he is now 5 days in to his chemo protocol and we are hoping that this will stop the cancer for spreading if not kill the cancer!!
Please keep Ryan in your prayers and we appreciate every ones support!!!!
God Bless!
Friday, October 13, 2006 10:36 PM CDT
Ryan’s latest update:
Thanks to a number of people, Ryan and Sophie were able to enjoy the Wild game in the Pioneer Press suite as they took on the Capitols.
They were able to watch some of the game with Brad Bombadier (see photo) and was able to wear his Stanley Cup ring too!
After the game, we were able to get to see of the players where he was able to catch up with Ben Clymer and a few other guys he met last year from the visit to Washington.
Ryan is still in the hospital and it looks like he might me in there for a few more days. His creatinine level is too high and for that reason, they are uncomfortable to let him go home.
This evening they hat to place another catheter because he is having a difficult time voiding, which is backing up in the kidneys.
We spoke to the doctors today and we were given some good news! In review of his kidneys, they don’t see any abnormal activity. His bladder has not changed since his last CT of the bladder. The Urologist is pretty confident that the thickening of the bladder wall (which is causing the problems) is not a result of a tumor – more then likely it is hardening for the bladder lining from past radiation.
They will discuss with us next Monday as to what they think they will do regarding a more permanent fix for the bladder. One option may by the super pubic catheter again, which is what Ryan had 18 months ago. We’ll see what they say. Either way, this is the issue that is causing him to stay in the hospital.
Additional good news is that they are going to begin his chemo protocol at a smaller dose then originally planned, however, it will be strong enough to hopefully stop the cancer from spreading and begin the process of killing the cancer.
Ryan is expected to be at the Rally tomorrow and he is looking forward to the event and hoping to see many of you there.
Tuesday, October 10, 2006 11:00 PM CDT
Here is the latest on Ryan as of this evening (Tuesday).
While at St. Joseph’s yesterday, they took some x-rays of Ryan’s ribs to see what is causing the pain. The source of the pain is now known – Ryan’s right side (ribs 5 & 6) are fractured and a small tumor in #6. The left side (rib #3) has a small tumor too.
Now that they have discovered this, they will begin local radiation to those ribs tomorrow (Wednesday) at the U of M.
Today, at St. Joseph’s, they finished up with the CyberKnife treatment to his sacrum and they radiated his left medial distal femur (inside lower part of the femur, just above the knee) where that tumor had grown too. All he has left is the lumbar portion of his spine; which will resume on Thursday meaning that next Monday should be his last day of radiation treatments.
Today Ryan was also admitted back in to the U of M hospital due to his creatinine level (a measurement of his kidney function) being elevated to 2.60. His calcium level is elevated too. For this reason, the wanted Ryan in so they can reduce both the creatinine and calcium levels. They are expecting Ryan to be in the hospital for only a short while. They are thinking by the end of the week, therefore, Ryan will be able to attend the Rally For Ryan event!
We would also like to thank all of those who tried to help out with the Wild tickets. Thank you to Steve Chepokas (Miracles of Mitch Foundation), Ryan is all set and is looking forward to seeing a great game!!
For now, the plans are that if Ryan is still in the hospital as of Thursday, the doctors are planning on giving Ryan a pass to leave the hospital for the game and come back to the U after the game.
Only four days remain until the Rally for Ryan event and really appreciate all of the support for this event – it is unbelievable! Ryan’s grandmother called to tell us that she had heard that WCCO was talking about the event in the morning – how cool is that!
Thank you all for the continued prayers and support!!!!
Sunday, October 8, 2006 8:32 PM CDT
Yesterday was a great day for Ryan. He actually had a chance to get out for a while. Ryan and Sophie went out for a picnic, toured EP for a while, and then went to Sophie’s house before heading back home.
Ryan really enjoyed the opportunity to get out – he mentioned to us that the last time he was out around town was over three months ago.
Today, Ryan’s ribs are hurting very badly. His right rib cage has been hurting for the past couple weeks, but today it was really hurting plus his left rib area is hurting now. As a result, we had to give him some morphine, which has caused him to sleep for the balance of the day (11:00 am and on)
Tomorrow, Ryan will head back down to St. Joseph’s to get a second CyberKnife treatment on his sacrum, plus they will also begin treatments on his lumbar spine and his left knee (lower femur). He still has a tumor growing in the same knee that he had surgery on 3 months ago.
Also, they will take pictures of his ribs to see what is going on so they can determine a treatment plan for the ribs. The pain could be caused from tumor, strain, or even a break. Who know – all we know is the sooner they can look at it the better.
As of couple weeks ago, the doctors are planning to begin the chemo again which in our mind, can’t start soon enough.
Ryan’s labs from yesterday (Saturday) looked good. His blood work (white count, platelets, hemoglobin). His calcium level is elevated and his creatinine level is high (1.61). We will begin to run fluids through his IV this evening, which should help, reduce the creatinine level down (Creatinine is an indicator of his kidney functions).
Ryan has tickets to go to the Wild game next Thursday (12th) and he is trying to figure out how to make it there. He is not strong enough to walk up or down the stairs to the seats so we are working on plan B – what ever that is. He is looking forward to watching Ben Clymer of the Capitols play who he met last year.
Only 6 days till the Rally for Ryan event and Ryan is really looking forward to it. When he was out with Sophie, he was able to see some of the signs around EP and was quite touched by that.
As always, thank you so much for the prayers and support!
The Shuman’s
Thursday, October 5, 2006 1:59 PM CDT
Here is the latest on Ryan:
As many of you know, Ryan came home last Saturday and he continues to get stronger each and every day!
He is now able to get up from the couch and bed on his own. Still very limited walking – in fact, once he makes it from the couch, he is pretty much there for the balance of the day unless he needs to go some place – i.e. St. Joseph for CyberKnife.
His counts were great last Tuesday and the nurse was out to the home a few hours ago and we should get his results later on today.
Last Sunday, he received a visit from the three captains from the EP football team where they game Ryan a football autographed by the Seniors on the team and a EP football warm-up suit (see photo).
Ryan had a two-day break from the CyberKnife treatment (yesterday and today) as they were getting set up for the next round of treatments.
They have now completed the treatments to the C spine and the T spine (T spine was much easier to deal with). It appears that the pain in his neck is slightly better which helps!
Ryan will resume the CyberKnife treatments tomorrow (Friday).
Beyond that – everything else is going real well!
Also – don’t forget to see the front of Ryan’s story, which makes mention about the Rally for Ryan event on October 14th!
As always, thank you for checking in and god bless!
Saturday, September 30, 2006 11:45 PM CDT
Homecoming Weekend in Eden Prairie has two meanings as of today (Saturday).
This is homecoming weekend for Eden Prairie High School and today is homecoming for Ryan!
Today we received a call from the doctors at the U of M to tell us that Ryan has been cleared to go home. Ryan will still need some fluids via his IV line at home, which is fine with us as Ryan too.
Ryan’s neck is real sore and is having a hard time moving, but nonetheless, he was happy to get out and get a breath of fresh air.
On Monday, Ryan will resume his travels back to St. Joseph Hospital in St. Paul for his 5th treatment of CyberKnife (2nd treatment on his T6/8/9).
We praise god for answering our prayers to get him healthy to get home. Now Ryan is going to stay focused on staying out of the hospital for a long long time!
We met with the doctors yesterday and they plan to give Ryan one more week off to continue to build up so he can begin a chemo protocol hopefully during the week of October 7.
Thank you all for the prayers and support!
Friday, September 29, 2006 4:14 PM CDT
Here is the latest on Ryan as of today – September 29, 2006.
Ryan just completed day number 4 of CyberKnife treatment.
As you may have noticed from the previous journal entry that the first treatment was very difficult for Ryan. I am happy to report that his last three treatments went better. Still difficult, but through the maricles of some drugs, he was much more comfortable. Not to mention, better on mom and dad too!
On Tuesday, they completed the treatments on his C spine (neck) and today was the first treatment on the T spine (mid back – T6, 8, 9) which was better because Ryan was able to lay his head on a pillow verses and hard head support. Besides that pillow, the only real difference was the amount of time it took for the procedure. The treatments to the T spine lasts 2 ½ hours long – a pretty long time to sit still! Also, Ryan was able to bring some CD’s to listen too which helped pass the time.
Other then that, Ryan seems to being doing much better. His counts look good, his creatinine level (kidney function) is in the normal range and they took out his catheter yesterday.
It looks like they are planning on having him out of the hospital this weekend. Also, the doctors are looking at staring his chemo back up in a week or two. They just want to make sure that his counts stay stable before they give him the next round.
Good news is that the treatment plans have not changed – complete the CyberKnife treatments to kill the tumors then get him on the chemo protocol to kill the rest of the cancer in him before something else pops up.
As of today, he was hoping to be home for homecoming weekend at EP and spend some time with Sophie, friends, and family; however he seems to be OK with Sunday if that happens.
It sounds like things are really building up with the Rally For Ryan event on 10/14 and we really appreciate all of the support in getting this up and running. We added some information on the front of the webpage about the event. Ryan is actually looking forward to this event.
Thanks again for all of your prayers and support.
Wednesday, September 27, 2006 11:28 AM CDT
Yesterday Ryan completed his first of what appears to be twelve (12) CyberKnife treatments at St. Joseph Hospital in St. Paul.
I would like to have reported that this went well, however, it didn’t. This was one of the more difficult procedures Ryan has endured. The actual CyberKnife treatment in itself was not painful, but the prep work was and the overall process was very difficult.
Ryan’s neck (C2 & C3 vertebrae) are very sore and in order for them to irradiate the tumors, Ryan needed slightly arch his head back which caused great pain for him. Then because of the importance of keeping his head completely still during the actual procedure, they placed a molded gage on his head and face, then locked it down to the table. This Ryan could not take – frankly, I couldn’t wear this cage either.
They agreed to proceed with the treatment without the cage; however, for safety precautions, they had to tape Ryan’s head to the table which was still uncomfortable, but better then the cage.
In addition to keeping the head still, they also wanted to limit his body movement. They achieved this by strapping him down at the chest and waist.
Once Ryan was completely immobile, the doctors began the treatment that lasted about 75 minutes.
As I sat with the doctors in separate room from Ryan (he is in a large room all by himself), I watched Ryan on 4 TV monitors with (one from each angle) with a large CyberKnife machine standing about 10 feet away from him shooting radiation beams into his neck, I can't help but wonder what is going through his mind. To be honest with you, this was one of the more difficult things for me to witness.
Words can’t express how strong (physically and emotionally) Ryan is. He knows that this treatment, if successful, will give him great relief from the pain and allow him to begin the recovery process so he can get back to his normal self! It is for that reason, Ryan is enduring this!
Today, Ryan’s neck is very sore from yesterday and he really can’t even move it.
As I write this, he is being prepped to get in the ambulance for another trip to St. Joseph for round #2 of CyberKnife. This will be his 4th ambulance trip from the U of M to St. Joseph and he is getting to know the LifeLink people pretty well.
We are hoping that today’s treatment will go much better and he can get back to the U of M. The next issue is that we need to get him to eat. He really hasn’t eaten for the past 4 days – he just doesn’t feel too good, but he needs to eat – so we are hoping that they can either get him to eat today, otherwise, they will have to feed him through his IV.
His creatinine level is dropping nicely (1.51) today which is almost in the normal range of .60 to 1.20. This means that his kidneys are coming back just fine. The blood in his urine is gone too. This just confirms that the antibiotics he is taking for the BK virus is working.
They are trying to get him home sometime soon – they just need to be able to remove the catheter and get him eating!
Thanks for the prayers and I apologize for the long journal report!
Saturday, September 23, 2006 8:36 AM CDT
Ryan had a pretty good day yesterday.
The catheter made a big difference and he is feeling much better. But the best news came from the doctors.
Ryan’s blood work from yesterday morning showed that his creatin level continued to rise to a dangerous level of 3.00, which shows that his kidneys are not extracting the toxins like they should.
They performed a MRI of the bladder and kidney and saw that there has been no change, not additional blockage or growths which puzzling to the doctors as to why his creatin level continues to rise.
Now for the good news – The doctors identifies that a major side effect to the BK virus is increased creatin levels in the kidney. This is great news – he doctors feel that with proper antibiotics, they will be able to knock out the virus and we should see the creatin level drop.
More good news – the bleeding in the bladder has stopped and the clots have just about stopped.
As of today, we don’t know how long Ryan’s stay in the hospital will be; however, Ryan is hoping to be out by the middle of next week, which seems reasonable.
As always – thank for the prayers and support!
Thursday, September 21, 2006 8:27 PM CDT
Here is the latest on Ryan.
Last night, about 8:00 pm, we received a call from the U of M hospital requesting that we bring Ryan to the hospital right away.
They received the results from his blood work done earlier in the day and his creatine levels (a measurement of kidney function) were very high (2.00 on range of .60 to 1.20) which meant that if left untreated, Ryan would be looking at kidney failure. This is caused by Ryan's inablility to completely empty his bladder, thus causing a back up in the kidneys.
Armed with that information, Ryan arrived back at the U of M hopsital around 9:00 pm.
This morning, Ryan's creatine level was 2.71 which is very dangerous. Around noon today, they were able to place a catheter to help drain his bladder which should begin to reduce that level.
Again, the cause of the blockage in the bladder is not really known, however, Ryan has been dealing with a great amount of bleeding in the bladder which is causing clots to form, which is not easy to pass. This could be a contributing factor. We should know more in a day or so.
They also received some test results and they found that Ryan has a virus called BK. This virus is known to cause bleeding in the bladder. Once this is under control, we hope that his bladder will begin to heal.
Although Ryan was not happy to be admitted again, he was happy to get the catheter in and now feels much better.
They are looking to start the CyberKnife treatments at St. Joseph's in St. Paul next Tuesday which we are all looking forward to. If the procedure works as planned, Ryan's pain in his back should be reduced significantly if not eliminated.
We are not really sure how long Ryan will be in the hospital, however, we are hoping that he will be out sometime in the beginning of next week.
As always, thank you for the prayers and support!
Monday, September 18, 2006 10:40 PM CDT
Here is the latest on Ryan as of Monday, September 18, 2006
He has been home since Friday and he is doing well.
He is still dealing with a lot of pain in his neck, back, and left leg, however he is managing to get around the house.
He went to the doctor today and they gave him some blood and platelets. His white count is great, just having a hard time getting the platelets to stay up to the levels that they want.
We still have not heard from the CyberKnife people as to when he will begin his first treatment. We are optimistic that he can begin them this week. Once the treatments begin, his pain should be significantly reduced. Then he will just have to get his strength up.
No word on his next round of chemo, but we are hopeful that he can begin them next week.
That is all for now!
Thanks for the continued prayers and support!
Friday, September 15, 2006 3:26 PM CDT
Great news!
Ryan is going home today.
He has had a slight temp (off and on) for the past 3 days which has caused him to stay in the hospital. Even though the temp was around 100 today, the doctors feel that it is safe to send him home with some oral antibiotics. The temp is believed to be caused from an infection – more then likely from the PIC line being put in.
Overall, he is feeling much better – the pain is more under control and he is waiting to hear when he can begin the CyberKnife treatments. They are thinking sometime next week.
Yesterday was a long day at St. Joseph again for he was going through phase II in preparation of the CyberKnife treatment. What took the longest was the MRI. Ryan’s MRI took just about 3 hours to do. I have never had an MRI before, however, the thought of being in a tub with only a few inches around your head and staying motionless does not sound like a lot of fun. True to form for Ryan, he was able to deal with it without much complaining! When it was over, Ryan arrived back at the U around 10:00 pm via ambulance.
For now, he really looking forward to being at home and getting a chance to see his friends and hopefully, get a few hands of poker in over the upcoming days.
We know that Ryan will have visits from the Physical Therapists during the next week or so until he can build up his strength.
Gob Bless!
Wednesday, September 13, 2006 10:11 PM CDT
Ryan had a long day yesterday at St. Joseph Hospital.
In preparation to receiving CyberKnife treatment, Ryan spent the entire day at St. Joseph hospital in St. Paul.
His day started with a 7:15 am ambulance ride to St. Joseph’s where they conducted a CT’s and PET scans to determine the exact areas that need to be treated. It is determined that they will treat the sacrum, spine from mid back to the upper region around the neck.
After the scans were completed and we had our consultation, Ryan went in to the operating room, was put to sleep, so they could place small markers in his spine (about the size of a grain of rice) around the areas that will be treated. These markers are actually screwed in the bone.
When it was all done, Ryan arrived back to the U of M via ambulance around 7:30 pm and was very uncomfortable due to the procedure.
Today, Ryan went back in to the OR to have his catheter removed and a new PIC line placed in his right arm. The PIC line is an IV line that is placed in his arm, and then threaded in to a main artery in his chest. This way he will not have to have as many IV’s placed in his arm. He had one of these for the last couple months and he really like the PIC since it saves wear and tear in his veins.
Tomorrow (Thursday) Ryan will head back to St. Joseph for phase II of the treatment, which is to have an MRI done. This will help confirm the exact location of the treatments.
Best news of all is that Ryan is expected to go home after his visit to St. Joseph –providing that his pain in his back is under control.
As it stands today, they are planning to begin his actual CyberKnife treatment sometime next week. Ryan can’t wait for this to get underway for that should significantly reduce his pain if not potentially eliminate it.
We’ll keep you updated and we hope to have Ryan back home tomorrow night!
Thanks to all for your prayers and support!
The Shuman’s
Monday, September 11, 2006 11:52 PM CDT
Here is the latest update for Ryan.
He has been doing great over the past three days. His counts are picking up (white blood is over 3.0), his platelets are building and he is feeling better.
His infection in the colon is almost gone – in fact the pain is no longer there. His eating restrictions have been pulled and he is enjoying food and drink again!
Yesterday was a great day for he had the chance to meet one of his true hero’s – Lance Armstrong. While Lance was in town for a meeting, he took the opportunity to pay a visit to Ryan. The timing couldn’t have been better for the whole Shuman family including Sophie (Ryan’s girlfriend) and Zack (Ryan’s friend) we there too. What a great opportunity to meet one of the greatest athletes in the world and a cancer survivor! It doesn’t get any better then that! (See photos).
Tomorrow (9/12) Ryan will travel to St. Joseph hospital in St. Paul to begin the process of Cyber Knife. Cyber Knife is a medical procedure similar to radiation treatment, however, it is far more accurate. In fact, it uses x-ray image cameras and computer technology similar to that used for cruise missile guidance. It provides concentrated beams of radiation to the tumor from multiple positions and angels without damaging healthy surrounding tissue.
During a conversation with the doctor today about Cyber Knife, he indicated the plan is that the tumors should be eradicated which should eliminate the pain caused by the tumors.
Tomorrow will be a long day of scans and preparation for the procedure. He will travel to St. Joseph via ambulance around 7:15 am and will return back to the U of M around 6:00 pm. We are not sure when they will start the actual treatment, but I would assume real soon. According to the doctor, Ryan will need somewhere between 1 to 5 treatments.
In closing, we can’t tell you how great it is to see Ryan sitting up in bed with a smile on his face, taking in a ball game on TV and enjoying a dinner again!
Thank you all for the prayers and support!
The Shuman’s
Thursday, September 7, 2006 10:17 PM CDT
Today (Thursday) is a better day for Ryan.
His counts are still very low – in fact, there is no change, however, his stomach is starting to feel better which is great. The doctors are considering allowing him to begin drinking and possible eat tomorrow. He hasn’t drank or eaten in close to 4 days and he is getting pretty hungry (Ryan has been getting his nutrition via IV)
In addition, it appears that the doctors have been able to get the right combination of drugs so that his pain is more under control and so that he is not snowed under. Today, Ryan was up and watching TV.
He is still dealing with bladder pain. Much of his bladder issues are a result of blood in the bladder because of internal bleeding due to low platelets. The blood pools in the bladder and creates blood clots. The consensus is that once his platelets rise, the internal bleeding will stop and his bladder should begin to heal.
He is rating his back pain around a 5 (1 low – 10 high rating scale). This is much improved from last week when he was at a 9 to a 10.
We are still waiting for his stem cells to kick in and get his counts to rise, which will allow him to begin his chemo treatments.
They are still discussing the plan to get Ryan to Unity hospital for Cyber Knife treatment (a form of radiation treatment); however, Ryan needs to get a better for them to transfer him to there. With any kind of luck, this will be next week.
With regards to visitors – his counts are real low and visitors are not advised. We hope to see that change in a day or so.
Thank you for all of your prayers and support!
Wednesday, September 6, 2006 2:02 PM CDT
Here is the latest update on Ryan.
As of today, he is still not feeling good. He has been under the weather for the past 3 days.
On Friday, they put a catheter to relieve the back-up in his bladder which has helped his kidney.
On Sunday, his stomach began to hurt real badly and it looks like there is an infection that is causing his intestine to swell. As a result, he is unable to keep any food down. They are giving him meds to clean up that infection.
On Monday, they discovered that he has some fluid in his lung; again, they are working on some meds to clear that up.
On Tuesday, he began spiking temps in the range of 101 to 102.
Throughout this whole process, his blood counts are very low which is an underlining factor in his problems.
Today, his which blood count is .01 which means that he has no immune defense. His platelets are very low too which has caused some bleeding in the past 24 hours.
In speaking to the doctors, they are just waiting for his counts to rise and that seems to be the underlining issue. They gave him back his stem cells last Thursday (6 days ago) and it usually takes 10 – 14 days to have them take hold and improve his counts.
Once his counts rise, and then his body should recover, hopefully his body can fight off the virus in his stomach and he can get up and move.
They are still considering the Cyber Knife treatment at Unity hospital; however, until he improves from his counts and stomach issues, they are unable to transport him.
As of now, he is sleeping about 22 hours out of the day. As for visitors, we advise none for now. We’ll keep you posted on this.
No doubt that this is the most difficult time Ryan has experience as well as us. We are continuing to pray for these treatments to help him and we continue to ask for your prayers and support.
This Shuman’s
Friday, September 1, 2006 4:02 PM CDT
Wow – what a rollercoaster ride we are on.
On Tuesday we were told that his scans from Tuesday showed no change in tumor which was cause for celebration.
Then later on Wednesday, they decided to run a scan on hid neck for he has been experiencing neck pain for the past 4 days. The first reading was clear, then they came back late last night with a final reading and they have found some lesions (another word for small tumor) in the vertebrae in his neck. This would explain the pain.
In addition, the previous scan showed some blockage in the bladder which is not allowing Ryan to fully void which is causing some back up in the kidney. They are still not really sure what the cause of the blockage is, either way; they need to get this fixed.
Today they put a catheter to clear out the bladder and Ryan will continue to keep the catheter in until the bladder is functioning as it should.
They are also talking about sending Ryan to Unity Hospital to have them do a Cyber Knife treatment which is like radiation, however, more precise.
Ryan did get his stem cells back yesterday and we are hoping that he can begin receiving his full chemo rounds in about 14 days. This is critical for Ryan – we see what the result of not chemo for 5 weeks has caused (neck and bladder), we don’t want to run too much longer.
As usual, Ryan is still in great spirits and is looking forward to getting home – hopefully by the end of the weekend.
Ryan will not be starting school until he is able to get this under control and he can get his PT done. We will be working with the school to keep Ryan on pace for graduation next spring.
As always, thank you for the prayers and support!!!!!
Wednesday, August 30, 2006 6:03 PM CDT
For the most part, today was a good day for the scans that they did yesterday didn't show any tumor growth and his back (surgery area) looked good.
This was very concerning to us and everyone due to the level of pain in his back, coupled with the fact that he had not had his chemo treatments for close to 5 weeks.
Again, the doctors are very pleased with that scan result.
They did however, see what looked like a little thickening of the bladder lining as well as a portion of the kidney area. This is not too concerning to the doctors, however, they want to watch it just to make sure. The cause of this could be from the radiation, infection (remember - he did have a couple viruses less then a month ago), or possibly a tumor.
Again, the doctors will take a wait and see approach on this. Since they were able to start him on the chemo yesterday, they feel that if it was tumor growth, the chemo should be able to knock it out right away.
The source of the pain in his back is still in question. The pain doctors are pretty confident that the cause of the pain is a result of Ryan being taken off of one of the pain drugs. Ryan ended that drug last Wednesday and Thursday is when the pain started coming.
Yes today was good news, however, Ryan had a difficult morning. When nurse checked in with Ryan, she noticed that Ryan was not waking up, he was very cold to the touch, and his lips were blue. The cause of this was too much Fentinal (spelling?), which is a pain drug. Ryan was only breathing about 6 breaths per minute and was not responding. Pretty scary! They were able to give Ryan some drugs to reverse the narcotics in the system, which made him pretty ill feeling.
They are not sure how long he was in this state, but the good news is that they were able correct this and began feeling much better by about 3:00 pm.
Ryan's pain is getting under control, still sore, but he is feeling much better.
Tomorrow they will give Ryan back his stem cells that were harvested from 2 years ago. This will help his body rebound from the chemo much faster and allow him to continue his normal chemo treatments until this stuff is gone once and for all.
As of today, the doctors are saying that Ryan should be able to go home this weekend.
Thank you all for the prayers - they are being answered!
Tuesday, August 29, 2006 11:36 AM CDT
Well – amazing how a couple days change!
Last night Ryan went back in to the hospital at 10:30 pm with severe back pain (10 on a scale of 1 – 10, 10 being bad) in the same area that he had his surgery last month.
Around midnight, they were able to get his pain down to a 5 with some good drugs.
Ryan was scheduled to have a CT of the chest, abdomen, and spine today and they will continue as scheduled. Hopefully this should tell us what we are dealing with.
It could be a number of items – the tumor in the vertebrae is growing and causing damage, it could be from the extra strain on the back from PT, or who knows. However, we should know later today.
Ryan’s counts (White Blood, Platelets, and Hemoglobin) are still low, so the plan is to have him receive a round of chemo (first time in close to 5 weeks), then on Thursday, he will have his stem cells (that were harvested in 2004) given back to him. This should solve the low counts. Ryan will then need to wait about 14 – 21 days, and then he will be able to begin his normal cycle of chemo.
As always, thank you all so much for the thoughts and prayers – we will update the website tomorrow.
Saturday, August 26, 2006 3:27 PM CDT
Hey everyone, just thought I'd leave the journal for a change! Things are going really well being home, I'm walking a lot more and from working with physical therapy my legs are strengthening quite a bit. I'm having some back pain but hopefully that will subside soon.
Today I was able to make it up a whole flight of stairs to get upstairs and shower. It feels great being able to get around now. I meet with Dr. Clohissy on Tuesday to x-ray my back and to see if I need to continue to wear a back brace while I walk, hopefully I won't need it anymore!
Well we will continue to keep everyone updated on everything! I thank you all for your prayers and support! I really appreciate everything, thank you so much!
God Bless!
-Ryan
P.S. We added three new photos, go check them out!
Thursday, August 24, 2006 10:37 PM CDT
Ryan continues to improve at home.
He is able to get up (with assistance of crutches) and walk around the home. He is also making progress with the steps. Hoping that he will be able to make a full flight of stairs soon.
Today, Ryan had a visit with the doctors to discuss his treatment plans. As you may recall, Ryan was having a difficult time keeping his counts (white blood and platelets) high enough to get his chemo.
Good new is that both counts have been stable from last week; however, his platelets are still too low to start the chemo. As of tomorrow, Ryan will have been off chemo for four weeks.
They are going to check his counts next Tuesday. If the counts have improved enough, they will begin his next round of chemo. If they are still too low, they will give Ryan back his stem cells that they took and harvested from him 18 months ago. This should boost his counts in a matter of days, and then they can start his chemo.
Also, they took an x-ray of Ryan’s chest today (he was complaining of a shortness of breath) and we are happy to report that his lungs are clear!
They have tentatively scheduled his next set of scans for either next week (week of 8/28) or the following week. The last set of scans were completed almost 4 weeks ago and they showed stabilization of the tumors which is great for that is the first that means that the treatments are/were working.
We are not sure if Ryan will be ready to make it to his first day of his senior year at EP, however, with therapy, we are hopeful that he will start shortly after. Who knows, with any kind of luck, he could be ready!
As always – thank you so much for the prayers and support – LiveSTRONG!
Saturday, August 19, 2006 8:30 AM CDT
Day #35 is homecoming day for Ryan!
Ryan had a great day yesterday – he started his day by having Krispy Kreme doughnuts with some friends (Jake, Dave, Phil), then had a great day with Phyiscal Thearapy and they gave him the thumbs up to go home!
Our departure was slightly held up, the doctors gave him some platelets around 2:00 pm and then he was on his way home at 5:30 pm to be greeted by his sisters (Alicia & Jessica) who had put up welcome home banners and hugs! Then he had a visit from Matt and Jake, followed by Sophie.
On Monday, Ryan will go to the Masonic clinic to get some more platelets (still a little on the low side). On Thursday, Ryan will then meet with Dr. Negelia to discuss the next round of chemo.
In addition, Physical Therapy will visit Ryan next week (Monday – Friday), then depending upon how he is doing, they will evaluate for the following week.
We thank you for your prayers and support and we praise god for this great day!
The Shuman’s
Wednesday, August 16, 2006 10:39 PM CDT
Day 33
As day number 33 in the hospital comes to a close - it is looking like Ryan can see the light at the end of the tunnel.
His counts have improved - not high enough to get his next round of chemo, they have improved!
His intestinal virus is just about gone and he is pretty much on oral meds verses IV meds.
Lastly, Ryan has been able to actually work with Physical Therapy over the past 2 days. Today, he was able to walk about 30 feet (with a walker) and was able to go up and down 3 steps.
This information has led the doctors to believe that Ryan could expect to go home by the end of the week.
Next - we are hoping that Ryan will be able to begin his next round of chemo by the beginning of next week. This is his third week without his chemo so we don't want to go too much longer.
Also, the other day, the doctors told us that his CT scans that they did last week showed that the tumors have stabilized (no growth) which is excellent news - praise god for that!
We are still trying to determine what our plans are for seeking treatment in Mexico at the CHIPSA Hospital (www.chipsa.com). We want to have a final decision made in the next couple of weeks.
As always, we so much appreciate your prayers and support!!!
Saturday, August 12, 2006 11:11 PM CDT
Well - Ryan is still in the hospital for an unprecedented 29 days (which exceeds his longest stay by one day) with close to 99% of those days on his back. We are hoping that he will make it home by next Thursday.
Even though Ryan is still in the hospital, we have good news to report.
- His counts finally improved. His white count this morning was 2.5. His WC has been around 06 to 1.10 range for the past couple of weeks (good range is 4.0 - 11.0). This is great news because Ryan has missed his last round of chemo because his counts were too low and he may be able to start next week.
- It looks like his virus is getting better. For the first time in over a week, his stomach felt better.
- The only thing that is keeping Ryan from coming home is his ability get out of bed and move. They have been trying to do Physical Therapy for the past week, but because of his stomach pains (from virus), he has not been able to do his PT.
Now that his counts are increasing and stomach feeling better, we are hoping that Ryan can do his PT so he can get home.
We thank you all so much for the messages of support on this website and the continued prayers!
Monday, August 7, 2006 9:57 PM CDT
Mystery solved!
They doctors were real puzzled as to why Ryan was having the terrible stomachaches. Through the course of a number of cultures, blood tests, etc… they were able to determine that he has a couple viruses – Rotavirus and another intestinal virus that we don’t now the name of.
The good news is that now he is now on new antibiotics that should knock out the viruses in a couple of days.
His blood counts still have not come up to a normal level, which isn’t helping the healing process. Thus they still have held off on the chemo treatment. Also, they have stopped the radiation – not sure if they are planning on resuming the radiation or not – we will find out more later.
As for now, he is just is trying to get strong enough to start his physical therapy so he can make it home. As of today, we are hoping that this Friday will be his last day in the hospital.
Thanks for the continued prayer and support.
Sunday, August 6, 2006 10:15 PM CDT
Today marks day number 23 in the hospital for Ryan and he is ready to get home, however, he needs to do some more PT first.
They are trying to get Ryan up and moving twice a day and he has made improvement over the past few days, however, he has been dealing with a sore stomach and he has been spiking a temp which has not allowed him to get out of bed for the last day and half.
His counts are still low from the chemo which ended on July 28 (Ryan was scheduled for chemo last week, however, they postponed it due to counts). We are not sure when they will start the next round, however, his counts need to climb first.
The doctors feel that his stomach pain is a result of the radiation. Ryan is also scheduled for 5 more rounds of radiation which is scheduled for this upcoming week.
As of now, since his counts are low, it is suggested that we keep the visitors to a minimum.
The good news is that his back is feeling better, his leg is feeling better, and once he feels better and he gets his PT done, he is on his way home. With any kind up luck, maybe Wednesday or Thursday.
As always, thank you for the prayers and support!
Thursday, August 3, 2006 2:32 PM CDT
Sorry it has been a few days since we last updated everyone.
Over the past 4 days, Ryan has been doing really well.
When he came out of the surgery, he was in a lot of pain; he wasn't able to lift his head off the bed for a couple of days.
On Sunday (7/30), we were visiting him at the hospital and he did something that he has not done is close to 6 weeks - he sat up in his bed with little pain. At that point, we knew that the surgery was a success.
He began Physical Therapy on Tuesday and was able to stand up yesterday and sat at the side of his bed for about 20 minutes.
The doctors are asking him to wear a back brace for a little while until his spine is healed.
As of today, he is still taking his oral chemo, having radiation on the other tumors. His goal is to get out of the hospital by Friday (tomorrow) so he can attend Sophie's company party on Lake Minnetonka.
A special thanks to Sophie who has spent a great deal of time in the hospital with him as well as many other friends who have stopped by to visit and spend time with him.
It gets pretty boring in the hospital and he really has appreciated everyone who has taken the time to visit with him.
As always, thank you so much for your prayers and the support!!!!
God Bless
Thursday, July 27, 2006 9:52 PM CDT
Ryan’s surgery was finished around 6:30 pm this evening. They had a late start -was scheduled for noon, but didn’t get to the OR until 3:00 pm and the surgery took longer then expected.
Doctor Hunter who performed the surgery met with us after the surgery and and said the in his opinion – “the surgery was a success” which is music to our ears!
They were able to remove the majority of the tumor on the L2 and fill it in with a cement type substance. The remaining tumor should be eradicated by the radiation.
Ryan is under strict orders to lay flat on his back with limited movement of his head and legs so that he does not put any pressure on the lower back for the next 12 hours – the cement needs to harden. They will do a CT scan in the morning to make sure it is healing as expected.
As of now, he is hungry since he has not eaten since last night and his back is in a great deal of pain.
Even though he is in more pain this evening because of the surgery, they said that he could start seeing some significant pain relief as early as 24 – 48 hours to the point that he could begin sitting up and walking.
We are hoping that after some physical therapy over the next couple of days, he will be able to get out of the hospital (without crutches) by the end of this weekend or first part of next week at the latest.
Tomorrow (Friday 7/28) will make two weeks in the hospital on his back and he is looking very forward to getting out soon.
Thank you for all your prayers and support!!!
God Bless
Wednesday, July 26, 2006 11:31 AM CDT
Sorry for the delay since the last posting - here is the latest on Ryan.
He is still in the hospital (day number 10). His back is still hurting, however, with the drugs; he is feeling a little better.
The doctors are going to perform a surgery on his L2 tomorrow (Thursday) to relieve the pain and to remove the majority of the tumor in that vertebrae
The procedure is scheduled for 12:30 pm. They will enter the vertebrae from the back, with a scope type of tool, they will be able to carve out close to 80-90 f the tumor, and they will then fill in the space with a cement type substance.
There will still be tumor that is pushing on the spinal cord, however, with radiation; they should be able to kill the balance of the tumor.
In addition to the above, they expect to see significant pain relief for Ryan which will allow him to be able to sit up and walk which is something he has not been able to do for the past few weeks.
His spirits are up, he is looking forward to the surgery, and he is excited to get out of the hospital and get back to a more normal life.
Also – a special thanks to all of the visitors! That has been a real boost for him. Sitting in the hospital bed for 10 days gets real boring and he really appreciates the phone conversations and the visits.
Thank you all for keeping Ryan in your prayers.
God Bless!
Tuesday, July 18, 2006 8:41 PM CDT
Well – a lot has happened in the past 24 – 48 hours.
They have been able to start the radiation on the L2 to stop the growth, they have completed a complete set of scans, fitted him for a back brace, and started a new chemo protocol.
The scans showed that the last protocol didn’t do the job – he has additional tumors that have developed in his spine beyond the L2. They are looking at the L3, possibly the L4 and L5, T10, pelvic bone, and a couple other hot spots.
Armed with this information, they have changed the protocol again. This protocol they have seen success in recent Rhabdomyosarcoma patients, anywhere from stopping the tumors from growing, to shrinking them, to one patient that no longer has any sign of the cancer. This is very good news.
The doctors are also radiating all of the hot spots, not just the L2, but every hot spot in his body.
Ryan’s spirits are good, however, he is most disappointed about the need to where a back brace to keep his back lines up. The doctors indicated that once they see the improvement in the tumors, then they would consider a surgery to repair the L2, however, as of now, they don’t want him to deal with any more pain.
He is hoping to get home from the hospital by Friday, however, before they do that, they need to get the back pain under control with oral meds vs. IV meds.
Please keep praying that this new drugs do what they are intended to do – kill the cancer.
God bless!
Sunday, July 16, 2006 9:14 PM CDT
Well the scans were completed yesterday and the results show that the tumor on the L2 (lower region of the spine) had increased in size.
Previously the tumor on his spine occupied about 50 he vertebrae, now it appears to me almost all of the L2 is now infected and the tumor is pushing on his spinal cord which is causing extreme pain.
This morning, they began giving Ryan a steroid drug and began with radiation on the L2 to kill the tumor.
The doctors said that it might take a 5 - 10 rounds of radiation before he will see a significant improvement.
Tomorrow, the doctors will determine what type of protocol they want Ryan to begin.
The doctor told Ryan and us yesterday that they have a number of different types of drugs they can take, they just need to find the correct one that will work.
As of now, it looks like he will stay at the U of M for the next few days - hoping to get out mid-week.
As always, we thank you all for keeping Ryan in your prayers and ask that you continue to pray for his healing and they find the right combination of drugs to knock it out again!
God bless!!!
Friday, July 14, 2006 8:26 PM CDT
Well - Ryan made it to the U of M today, however, he was unable to get his scans completed.
Ryan woke up this morning with the same problem that he had on Wednesday - he was in so much pain from his lower back that he was unable to move. Faced with a ride to the U via ambulance, he was able to fight the pain to get in the car and make it down to the U where they promptly admitted him.
His pain was bad enough that once in the bed, he could not move, thus the scans are now planned for tomorrow (Saturday).
The doctors gave him some new medications to get the pain under control. At the time of this note (8:30 pm) he was just starting to be able to move his legs and is now able to have a slight incline to his bed so it looks like they are working.
They are hoping to have his pain under control enough to be able to have his scans completed tomorrow.
The doctor told Ryan that they are confident that they can get the pain fixed, then they will begin working on the source of the pain which will be identified by the scans tomorrow.
The doctors feel it could be a number of items that could be causing the pain - tumor, nerve endings, disk, strain, etc... Once they can see the source, they will begin a treatment plan to fix him up.
As for now, he is just relaxing in the hospital watching the Twins game and visting with Sophie. We expect him to be in the hospital to a few days until they get this fixed.
He is looking forward to being able to be in shape for a fishing tournament scheduled for July 28 on Lake Minnetonka.
We thank you all for keeping Ryan in your prayers!!!
God Bless.
Wednesday, July 12, 2006 10:31 PM CDT
Ryan was unable to have his scans done today because his back was too sore and he was unable to get out of bed to make it down to the U.
Ryan was able to get out of bed around 4:00 pm today and he is able to move a little, however, the pain is still pretty bad.
They have rescheduled the scans for this upcoming Friday (7/14) at noon.
Thank you all for your support and prayers.
God bless!
Monday, July 10, 2006 10:23 PM CDT
Here is the update for Ryan.
His leg is healing great! His leg is getting stronger; he has more movement and is about 50%.
However, now he is dealing with a lot of back pain. In talking to the doctors, it could be one of 3 items – because of his sore leg, he has been walking awkwardly which may be causing pain in his lower back, the tumor on his spine could be healing which can cause some bone pain, or his tumor is growing, or a combination of the above.
As a result, Ryan’s scans which were scheduled for July 17 will be moved up to this Wednesday, July 12 so they can get a good look as to what is causing the pain.
Once this is completed, this will give the doctors a plan of attack to make his back feel better.
He is handling the new protocol well – he has lost 90% of his hair, however, it looks like it may be growing back.
Other then that – he is doing fine.
Please keep Ryan in your prayers as he gets set to go in to his next set of Scans.
P.S. we added some new pictures.
Monday, June 26, 2006 3:36 PM CDT
Today marks two weeks since Ryan’s leg surgery. It’s been a slower recovery than we hoped. Ryan was readmitted last Thursday into the hospital; he was suffering from the ill effects of the nasty Irrinotecan chemo. He continues to need some extra blood here in there to keep up his hemoglobin. His stay at 5B was short; he was discharged late Friday afternoon with slightly rosier cheeks.
He spent most of the weekend relaxing and catching up with friends.
Sunday afternoon he was feeling well enough to go to the baseball game, Twins vs Chicago Cubs. We had great seats; we sat in one of the suites with family and friends. The event was put together by the Miracles of Mitch Foundation. While there he was able to meet the legendary Twins baseball player Tony Olivia. It was great to see Ryan having such a great time.
This week we start the second round of his Phase Study. We hope these next two weeks go more smoothly than the first two.
Thank you so much for all the wonderful gifts, cards and prayers. Ryan also appreciated those of you who stopped by while he was in the hospital. The nurses made many comments about how nice all Ryan’s friends were while visiting.
Tuesday, June 20, 2006 8:41 PM CDT
It has been 9 days since Ryan’s surgery and he is now beginning to get around a little easier.
Last Thursday, the Chepokas family (Miracles for Mitch) and Adam Goldberg (Vikings) brought Famous Dave’s over for dinner and spend the evening playing Texas Hold’em.
On Saturday, Ryan and family traveled to Wisconsin Dells to watch Jessica (Ryan’s sister) compete at the dance Nationals. This was a challenging weekend for Ryan his knee was very sore and made it pretty difficult to get around. We brought a wheelchair with us, which made all of the difference in the world.
This week, his leg continues to get better, however, he is feeling some of the side effects from his new chemo drugs – a little upset stomach and a little tired.
Today, Ryan went to the doctor to get some blood work done and they found a couple blood clots in his right arm in the location where he had his IV inserted for his surgery. The doctors put him on a blood-thinning drug to take care of the clots. In addition, since his hemoglobin was low, they gave him some blood and he is looking better and feeling better as a result.
Overall, Ryan is doing well – his leg is getting better, he is moving around more, and he is looking forward to getting back to normal activity later this week.
As always, thank you for the prayers and support!
Tuesday, June 13, 2006 6:58 PM CDT
Here is the latest on Ryan.
Ryan had his surgery yesterday (6/12) as scheduled and according to the surgeon, it was a success.
They removed the tumor from his lower left femur (just above the knee) and filled it in with a cement type material for strength. According to the surgeon, the majority of the tumor that was removed appeared to be dead which is great. We don’t if the dead tumor is from the past or is a result from his latest treatment- either way that is good news.
They elected not to remove any of the tumor that was at the top of the femur (in the hip joint) because the tumor was small and difficult to get to. The doctor felt that the chemo will take care of that.
In addition, they placed a rod in his femur bone starting at the top of the femur down to the bottom of the femur to give the femur strength and stability.
Ryan will remain at the Riverside hospital through Wednesday and looks to get out some time on Thursday.
Besides feeling sore from the surgery, he is doing great. The doctors told him that he should be back to normal with limited to no pain in two plus weeks.
Thank for your support and prayers!
Monday, June 12, 2006 10:34 PM CDT
We just wanted to give you a quick update as to how Ryan’s surgery went today.
Ryan went in bright and early this morning. The surgery didn’t actually get under way until closer to 9:30AM; by 12:00PM Dr. Clohissy had finished. The surgery went well, as planned. Dr. Clohissy said that the tumor for the most part from the knee was made up of mostly dead tissue. They did not remove any of the tumor from his hip, primarily because it would have involved moving a muscle. Dr. Clohissy felt that everything had gone so well, why take the chance of possibly having a problem. Ryan is settled in his room at Fairview Riverside, resting and healing. He will most likely be there until Wednesday, and discharged on the Thursday. They plan to get him up and moving tomorrow, knowing Ryan he will be anxious to get home.
Thank you so much for all the balloons, cards and gifts. Ryan is looking forward to having visitors tomorrow!
Keep your prayers coming!
Friday, June 9, 2006 1:37 PM CDT
Today marks day four of Ryan’s new protocol. He received his first round of chemo Tuesday, June 6th. That date has two special meanings, first, that it brings the answers we have been waiting for and second; it was Bob’s B-day.
We met with Dr. Clohissy, Ryan’s orthopedic Doctor; he has decided that Ryan’s surgery will take place June 12th at Fairview Riverside Hospital. The plan is to insert a rod from hip to just above his knee. The tumors have managed to destroy a great deal of his left femur leaving the leg comprised. There is a large section near the knee and in the hip that has been taken over by tumor, leaving a portion of the cortex exposed and filled in by tumor. So Ryan has been told to be extremely careful until Monday. He will be in for three days, and then have a 4-6 week recovery period.
Ryan spent last night with friends celebrating the last day of school. This weekend we will spend it as a family celebrating the June birthdays of family and friends.
Thank you for all your prayers, we know we couldn’t do this alone. Your support holds us up when we feel ourselves slipping.
The Shuman’s
Monday, June 5, 2006 10:36 PM CDT
Just a quick update… Tomorrow Ryan begins his new protocol. We will meet first thing in the morning to discuss what, when and how the surgery on Ryan’s left knee will take place. He continues to have significant pain. He had scans last week to determine if perhaps their was a break, scans revealed a breech but not a break. Dr. Clohissy feels strongly that Ryan will feel a great deal better if he proceeds with the surgery. I think Ryan is beginning to actually look forward to it. We will update after our meeting tomorrow. Thanks for your continued support and prayers! The Shuman’s
Sunday, May 14, 2006 10:29 PM CDT
Here is the update on Ryan.
Ryan is doing great! He still has some pain in his leg and back, however, he is doing great!
It sounds like there might be some confusion about how Ryan is doing. In the last update, we indicated that this is a new protocol and have had great success with test tubes and animals. What we omitted is that this protocol has been very successful in adults too.
Please understand that two of the drugs Ryan will be taking has taken before and has had great success. The third drug is new, however, again, it has been working well with adults.
What is new is the combination of these three drugs for children! They have been using this combination with adults with great success.
In addition, Ryan has to wait for three weeks before he can start his new protocol, they are giving Ryan a drug called Avastan which is also successful in killing tumors.
As we move forward with this plan, all of us are very excited (including the doctors) are very confident in this process and we expect that Ryan will make a full recovery from this just as he did last summer!
As always, thanks for the prayers and support!
Wednesday, May 10, 2006 10:20 PM CDT
Here is the latest update on Ryan:
As you may remember, Ryan’s left femur (just above the knee) was the sight of the tumor onset last December. Ryan went through radiation on the femur, however the doctors were not convinced that the tumor was eradicated.
It was that reason they prescribed an oral chemo that was intended to stop the spread of the tumor if indeed there was still tumor present. In February Ryan’s scans looked pretty good – still showing something in that femur, but that was it. For that reason, the doctors were pleased with the results.
On Monday (5/8) Ryan underwent the next set of scans. On Tuesday, we were given the news that these scans were not as good as hoped and it looks like the oral chemo didn’t do the job.
The scans showed an additional four to five additional tumors (right arm, spine, lower back, left hip, and possibly his right rib that was fractured before). This along with the presence of the tumor in his femur led the doctors to discontinue the oral chemo.
The doctors laid out 5 options to work with and we chose what is thought to be the best option. The new protocol will include three new chemo drugs. Temozolomide (new oral drug), Irinotecan (oral), and Vincristine (IV drug which will be given once a week as an out patient).
Ryan had Irinotecan and Vincristine in the past and we had great success while the new one (Temo) is new to the market. Ryan will be one of the first patients to receive all three at the same time however, this combination was successful in test tubes and animals, with that in mind, we are all are very optimistic.
Even though the results were not favorable, we are very optimistic. These three drugs are stronger with the intent to eliminate the cancer once and for all verses keeping at bay in his leg.
How is Ryan doing you may ask? He is doing great! The doctor told him that he will not loose his hair, will not get sick, no port or surgery, no hospital stays, and he can continue to do his normal thing. In addition to that, the doctor has reason to believe that this will work! With that being said – Ryan is just fine. He is confident, as we all are, that this will work!
We really appreciate your support and prayers as we fight to get this of this once and for all!!
Sunday, May 7, 2006 9:01 AM CDT
Hello everyone – here is a quick update for Ryan.
Tomorrow (May 8) Ryan will go back in for his next set of scans which will consist of a full body PET and CT scans. On Tuesday (May 9) we will meet with the doctors to review them.
You may recall from the last update, when we arrived back from Australia and he was complaining of lower back pain, hip pain, and his left knee was hurting. Today, his back is pretty good and his hips no longer hurt. His left knee however is still giving him pain.
The left knee (lower femur) is the area of greatest concern - this is the area where he had the biopsy surgery and radiation - has not healed as we had hoped. However, the doctor is not surprised by the slowness of the healing. The orthopedic doctor mentioned that it would take months to heal. During the last meeting (3 months ago) the doctors, the orthopedic indicated that if the knee (lower femur) didn’t start healing to his satisfaction, he might want to put a plate and a couple screws in that bone to give it more stability. We’ll just have to see what their thoughts are after these scans.
Other then that, Ryan is doing great! He is enjoying school, hanging out with friends, and is looking at finding a job for the summer. Ryan also had his coaching debut with a Bantam and Peewee hockey team, which he enjoyed. We may have a future coach on our hands!
That is to for now and we’ll provide an update after the scans results are in.
Thanks for keeping Ryan in your prayers and thoughts!
Monday, April 17, 2006 11:09 PM CDT
G’Day Mate(s),
We returned on Saturday, from Ryan’s Make-a-Wish trip to Australia. Even though at times it reminded us of the television show “The Amazing Race”, we had the trip of our lives! We did things we never did before and some we had done but seemed extra special.
We spent our first 4 days in Cairns (Northern part of Australia). Here we spent the first day in the Great Barrier Reef where we went snorkeling and scuba diving. The second found us taking a trip to a town called Kuranda in the Rain Forest where held Koala’s, petted Kangaroo’s, Wallaby’s, and snakes. While in the Rain Forest, we also met some Aborigines where we tried our hand a playing the Aborigines musical instrument called the Didgeridoo and tossed boomerangs.
The third day we relaxed on the Fitzroy Island in the Reef.
Then we traveled to Sydney for the balance of the two-week trip where we took in some site seeing, spent some time at Manly Beach and the famous Bondi Beach. We also took in a Rugby match, and deep sea fishing trip.
All in all, it was a trip of a lifetime!
With regards to Ryan – he is doing great! His left knee (lower femur) is still sore from the biopsy and radiation, which has taken a little longer to heal, then hoped for.
Other then that, he feels great – his weight is back up to 170 lbs and he is back to a normal day-to-day schedule. His next scheduled scans are set for May 8.
As always, thank for keeping him in your prayers and thought!
Friday, March 10, 2006 3:00 PM CST
Just a quick update… We spent a memorable weekend spent with friends at the KS95 radiation. This year was so difficult to listen to the stories of the children at both Gillette’s and Children’s Cancer Research. Monday Ryan had a CT done of his left knee that continues to bother him. Probably because we have developed a personal relationship with some of the kids. The scans showed no additional growth or shrinkage. Ryan’s oncologist seemed to be pleased with the results. The oral chemo that they have Ryan on is supposed to react in a steady manner. It seems to be keeping the current tumor in that knee at bay. So there will be no changes in his protocol. We have made some changes to our choices of activities for Australia. There will be no bungy jumping, sky diving or bridge climbing for Ryan. Just as well, I wasn’t looking forward to two out of the three. This weekend we plan to spend some of it at the high school hockey tournaments and Sunday at Jessica’s dance program. Keep those prayers and good thoughts coming!
Tuesday, February 28, 2006 3:57 PM CST
Thirty one days until we leave for “Down under”. Ryan received his passport last week, but no sign of the girls yet. It is and will be the topic of every family dinner until we leave. I’ve asked the kids to start to think about what they might want to bring and what they need to bring. Jessica has narrowed down her sleeping stuffed buddies down to a couple.
If you haven’t heard the Eden Prairie’s Boy’s season wrapped up over this past weekend. After a tough season, we lost to Minnetonka. It’s always sad when the season is over, especially this year, since a lot of Ryan’s teammates will be graduating. But as always we are already looking forward to next year, hopefully it will include Ryan in full gear.
Next Monday Ryan is scheduled to have a CT on his left femur. The hope is that it will reflect that the bone is healing and no sign of any tumor. He continues to have a lot of pain.
This week has kept him laying low; he has been suffering with a nasty head cold. The only good thing about him feeling so lousy is that perhaps it’s given his left leg some time to heal.
This weekend is the KS95athon, and our family will be at Ridgedale on Sunday from 12:00PM-1:00PM, supporting the cause. If you’re out near Ridgedale, stop by and say “Hi’. If you would like to donate money to help fight kids with cancer, you can call in or visit KS95’s website www.KS95 .
Saturday, February 11, 2006 11:36 PM CST
NEW PICTURES OF RYAN
Here is the latest.
We spoke to the doctor this morning and we are pretty happy with the news.
- The spot on his ankle is believed to be an old injury.
- The spot on his rib is still shows a fracture and is appears to be healing. Ryan just needs to stay low and let it heal.
- The spot on his upper portion of the femur is most consistent to inflammation.
- The lower femur is the only area that they want to watch. Not because they feel that is a tumor (although they won't rule it out), they are most concerned with the strength of the actual bone. The combination of the biopsy surgery and the radiation has made the bone rather weak. His orders are to limit any activity that would cause stress on that leg.
They want to scan his next month to see how the bone is healing.
Overall, great news and we couldn't be more pleased with the results.
Tonight, Ryan is having a great time at the High School's winter formal dance called Selgae (Eagles spelled backwards). We'll update the website with photos in a couple of day.
As always, thank you for the prayers and support!
God Bless - the Shuman's
Friday, February 10, 2006 11:09 PM CST
Yesterday (2/9), Ryan started out the day by having his CT of the lower femur of his left leg and the x-rays of his left leg and right rib.
After that, we had our consultation with the doctors. We knew that Ryan's scans showed a few hot spots in his left leg and on his rib.
The doctors report was pretty up beat. They really didn't expect to see a 100% clear scans, however, what they see is pretty good news. As he put it - there is no sign of any cancer spreading.
The lower femur looks to be a fracture in the bone at the biopy site. They still want to have the orthopedic review, but he feels the results look more like a fracture. In his words, even if they think there is a tumor there, it is smaller, thus the treatments are working in his mind.
The rib appears to be the same fracture that has not healed as we expected.
His upper femur hot spot is actually at the joint where the femur meets the hip. Thus, this makes sense that it would be inflamation caused by irritation of teh joint.
The overall report is good news in their eyes, looks like everything is improving and they do not feel that there is any need for change in treatment plans.
As of now, the doctors will plan to scan him sometime in April.
From our standpoint, we couldn't be any happier!
Thank you all for the prayers and support.
God Bless!
Wednesday, February 8, 2006 8:00 AM CST
Here is a quick update on Ryan.
We received a call yesterday for the doctors at the U of M to let us know the results of the scans.
Here is what they told us: The PET scan showed activity in his left leg and right rib. Activity does not always mean tumor growth, which is good. The PET picks up metabolic activity which could mean tumor growth or it can be inflamation as well.
Details for The PET shows the following:
- Activity high on his left femur (just below the hip). Not real big in size, however, something is there. The doctors think it could be inflamation in the joint due to over compensation of the joint due to the knee pain (which is what we are praying for).
- Activity on the lower femur (biopsy site). This could be result of the surgery still healing or the orthopedic doctor thinks that is could be a slight fracture of the femur at the surgery location.
- Activity on his right rib which is the same location of the fracture. There is a good chance that this is showing activity for that reason. His rib is hurting again, however, we feel that he may hav injured it again.
Other then this, we and the doctors are very pleased to see that nothing else has shown up.
On Thursday morning, before our scheduled doctors appointment to review the results, Ryan will go in for a CT of the left leg and x-rays of the rib and leg in an attempt to qualify these hots spots on the PET.
We are very optimistic that the CT and x-ray will show no tumor activity. As always, thank you for keeping Ryan in your prayers and we are now praying for good results from tomorrows tests.
God Bless!
Monday, February 6, 2006 11:02 PM CST
Just wanted to give you all a quick update on Ryan.
With regards to Ryan's scans, the scans went well - they did a PET scan and a CT.
We are scheduled to meet with the doctors on Thursday to go over the scan results.
Right now, Ryan is feeling great, however, his rib is hurting pretty bad again. Ryan's rib had felt great for about 2-3 weeks, then he decided to do some stickhanding, then some slapshots. Just after that, the rib began to hurt. We feel pretty sure that the rib was not healed yet - the doctor said that he needed to give it 6-8 weeks for full recovery.
Ryan's left knee is feeling just about 100% and is hoping to begin working out (lower body for now) in the next week.
We had spoken to so many that were praying for Ryan during the scans and we would would like to thank each of you for your prayers and support!!!!
We'll update the site after our meeting on Thursday. Till then, god bless!
Friday, January 27, 2006 4:26 PM CST
Just a quick update, Ryan is feeling great! He has been going to physical therapy for the past few weeks. He hasn’t seen much improvement, but the physical therapist said it could take 6 to 8 weeks before he does. He religiously does the exercises that they given him, so he’ll remain patient.
We took the kids last week to get their passports taken for Australia. Jessica is asking almost daily about when we will be leaving. Ryan is busy doing research on the internet and trying to narrow down what he really wants to see. The Great Barrier Reef, Melbourne and Sydney are in his top three.
This weekend Ryan plans to spend it hanging out with friends. Ryan was given on the glass seats for the Wild Game for Monday evening. He is so excited to go, between Bob and I we may have to draw straws to see who gets to be his date.
Thursday, February 2nd is Ryan’s next set of scans. We as a family have decided that we can’t hold our breath between scans and or doctor appointments. We know that God is the powerful physician and he will guide Ryan’s team of physicians. We have had such a sense of peace come over us that we feel confident that Ryan will continue to heal. With that being said we want to truly thank each and every one of you for your continued support and prayers. We feel so truly lucky to have such a vast group of family and friends supporting us through the past sixteen months. We have learned so much about not only ourselves but the meaning of life, friendship and strength.
In Christ,
The Shuman’s
Sunday, January 15, 2006 10:56 PM CST
Last Tuesday Ryan ended his radiation treatments on both femurs. His leg is feeling pretty good - he has a little pain from the surgery still, however, that is getting better each day.
With regards to his rib - it seems like just about everyone reviewed the x-ray and CT and everyone is in agreement that this is a rib fracture. Still don't know he ended up fracturing his rib, however, the good news is that it is getting better.
As of now, the plan is that Ryan will continue to take his daily oral chemo and he will go in for his next set of scans around the frist part of February. We are all expecting that he will be clear.
Today, thanks to Ryan's coach (Mike Terwilliger) at EP who arranged for Ryan to meet a friend of his who is an assistant coach for the Senators, Ryan was able to go to the Xcel and watch the Senators practice. After practice, Ryan had a chance to get in to the locker room and meet some of the players. (See pictures).
Thanks you so much for all of the payers and support - the payers are working!
God bless,
The Shuman's
Saturday, January 7, 2006 10:09 PM CST
Yesterday (Friday) we received a call from Ryan's ongologist to talk about their finding on the rib CT scan.
They (doctors and radiologist) all agree that something is on his 8th rib, however, the report does not show any sign of tumor in the rib.
The final report is most consistant to a fracture of the rib.
In our conversation with Dr. Neglia, the question is how did he end up with a rib fracture. Ryan does not recall getting hit in his rib, so the Doctor is thinking it could be one of a couple explanations: 1). The rib may have been weakend by the previous radiation and chemo which shoveling in the snow could have caused the fracture, 2). Maybe there was a tumor in the past that, or 3). It is possible that there maybe a tumor that could be growing in the rib.
As of now, the plan is to have Ryan's primary doctor (Dr. Neglia) consult with Radiation to see if it makes sense to do some light radiation to that rib just to be safe. We will know more on Monday.
Other then that, Ryan is feeling great and is looking to being done with the radiation on his femurs next Tuesday.
As always, we thank you so much for all of your prayers and support!!!
Thursday, January 5, 2006 11:40 PM CST
Just a quick update on Ryan.
As many of you know, Ryan had his x-ray on his rib last Tuesday. The initial report was that his ribs looked fine.
They wanted to have a second set of eyes go over the x-ray just to make sure. Today, we received a call from the doctor and they wanted to have a CT scan of the #8 rib.
After review of the x-ray from Tuesday, one tech possibly saw something on the #8 rib, but was not sure. The other doctors reviewed the x-ray and they could not see anything. Since one person possibly saw something and coupling that with his rib pain, they thought it would be best to get a CT scan of that rib.
As of this evening, we have not heard the results, however, we hope to hear tomorrow of there findings. Actually, we are expecting to have a clear result - again, better to play it safe.
Ryan only has 2 rounds of radiation left on his femur (next Monday & Tuesday).
That is it for now. We'll update the web after we received the final reading from the CT.
God Bless and thank you for keeping Ryan and family in your prayers!!!
Sunday, January 1, 2006 9:54 PM CST
Happy New Year! Ryan and Alicia spent the evening ringing in the New Year with friends. Bob, Jessica and I spent the evening making rounds to our neighbor’s homes. We rang in the New Year skating on a back yard rink at our neighbors home.
Ryan has 7 more rounds of radiation; it hasn’t seemed to slow him down much. He continues to have pain in his left knee and has recently begun to complain about some back and rib pain. We have had the Doctor’s look at it before but it continues to bother him, so tomorrow we are going to request a bone scan just to be certain all is okay. He will start physical therapy for his back and pelvic floor in a few weeks. Hopefully this too will bring some relief.
We are trying to firm up our plans for Ryan’s Make a Wish trip to Australia. We hope to be down under this spring. Ryan has been researching all the possible sites to see.
As we begin another year we reflect back to all that we have gained as a family. We have gained additional friends, knowledge and a renewing of our faith. We feel so blessed to have such wonderful friends and family and caring medical staff. We go into 2006 knowing that God we’ll guide us through our continued journey with Ryan.
In closing,many of you know,Ryan's Urologist,Dr. Leo Fung had been fighting his own recent battle with cancer since this past July. We are deeply saddened to annouce that Dr. Fung has passed away, Dec. 10th. Ryan and Dr. Fung had become very close over the past year. In September of 2004 (see photo), Dr. Fung came to Ryan's bedside on his day off and preformed a surgical procedure that we felt was a true miracle. We had always felt that Dr. Fung was truly an earthly angel. We felt so fortunate to have gotten to know him both profesionaly and personally. Our prayers go out to his family, coworkers and patients.
Sunday, January 1, 2006 9:54 PM CST
Happy New Year! Ryan and Alicia spent the evening ringing in the New Year with friends. Bob, Jessica and I spent the evening making rounds to our neighbor’s homes. We rang in the New Year skating on a back yard rink at our neighbors home.
Ryan has 7 more rounds of radiation; it hasn’t seemed to slow him down much. He continues to have pain in his left knee and has recently begun to complain about some back and rib pain. We have had the Doctor’s look at it before but it continues to bother him, so tomorrow we are going to request a MRI just to be certain all is okay. He will start physical therapy for his back and pelvic floor in a few weeks. Hopefully this too will bring some relief.
We are trying to firm up our plans for Ryan’s Make a Wish trip to Australia. We hope to be down under this spring. Ryan has been researching all the possible sites to see.
As we begin another year we reflect back to all that we have gained as a family. We have gained additional friends, knowledge and a renewing of our faith. We feel so blessed to have such wonderful friends and family and caring medical staff. We go into 2006 knowing that God we’ll guide us through our continued journey with Ryan.
Sunday, January 1, 2006 9:54 PM CST
Happy New Year! Ryan and Alicia spent the evening ringing in the New Year with friends. Bob, Jessica and I spent the evening making rounds to our neighbor’s homes. We rang in the New Year skating on a back yard rink at our neighbors home.
Ryan has 7 more rounds of radiation; it hasn’t seemed to slow him down much. He continues to have pain in his left knee and has recently begun to complain about some back and rib pain. We have had the Doctor’s look at it before but it continues to bother him, so tomorrow we are going to request a MRI just to be certain all is okay. He will start physical therapy for his back and pelvic floor in a few weeks. Hopefully this too will bring some relief.
We are trying to firm up our plans for Ryan’s Make a Wish trip to Australia. We hope to be down under this spring. Ryan has been researching all the possible sites to see.
As we begin another year we reflect back to all that we have gained as a family. We have gained additional friends, knowledge and a renewing of our faith. We feel so blessed to have such wonderful friends and family and caring medical staff. We go into 2006 knowing that God we’ll guide us through our continued journey with Ryan.
Sunday, January 1, 2006 9:54 PM CST
Happy New Year! Ryan and Alicia spent the evening ringing in the New Year with friends. Bob, Jessica and I spent the evening making rounds to our neighbor’s homes. We rang in the New Year skating on a back yard rink at our neighbors home.
Ryan has 7 more rounds of radiation; it hasn’t seemed to slow him down much. He continues to have pain in his left knee and has recently begun to complain about some back and rib pain. We have had the Doctor’s look at it before but it continues to bother him, so tomorrow we are going to request a MRI just to be certain all is okay. He will start physical therapy for his back and pelvic floor in a few weeks. Hopefully this too will bring some relief.
We are trying to firm up our plans for Ryan’s Make a Wish trip to Australia. We hope to be down under this spring. Ryan has been researching all the possible sites to see.
As we begin another year we reflect back to all that we have gained as a family. We have gained additional friends, knowledge and a renewing of our faith. We feel so blessed to have such wonderful friends and family and caring medical staff. We go into 2006 knowing that God we’ll guide us through our continued journey with Ryan.
Friday, December 23, 2005 2:06 PM CST
Just to catch everyone up to speed, Ryan started radiation last Monday. He will have a total of 15 rounds to both femurs. On Tuesday he started the oral chemo and Celebrax, Ryan asked Dr. Neglia how long he would need to take the oral chemo, Dr. Neglia’s response was “Ryan, I retire in about 15 years, so at least that long”. As time passes we will continue to run scans to make sure the chemo is doing its job.
Ryan spent yesterday shopping for family and friends for Christmas. Today he plans to spend time with friends. He has been blessed with great friends who have definitely been there for him.
We hope that everyone has a blessed Christmas and a special thank you to those of you that gave our family a mini holiday home makeover with lights, wreaths, potted tree tops, poinsettia plant and fridge full of food, dinners and the most beautiful Christmas tree one could ever hope for. I know that this is the season for giving, but this was too much.
Merry Christmas!
The Shuman’s
Monday, December 19, 2005 1:12 PM CST
Wow – what a difference a couple days make – the rollercoaster ride continues …
As you may have read in the past journal entry, Ryan’s information was being sent from NIH in Bethesda MD to the Mayo Clinic for a third set of eyes.
On Friday (12/16) around 9:00 pm, we received a phone call from my cousin’s husband who is a doctor at the Mayo informing us that the biopsy in their opinion was indeed Rhabdomyosarcoma (Ryan’s original cancer) and not Osteosarcoma.
With that information, the Mayo had communicated with the U of M and the decision was made on Saturday to not have Ryan admitted for his port implant surgery and not to begin chemotherapy for the Osteosarcoma.
Today, we spoke with the doctors at the U of M and we are going to go ahead with the original plan that was laid out three weeks ago which would include three (3) weeks of radiation to the femur in both legs and to begin chemotherapy in an oral form. The radiation will begin today (12/19) at 3:30 pm at the U of M.
The question now is when they will give him the oral chemo. One protocol would call for him to begin after the radiation is complete (about 3 weeks from now) and the other option is to start right away. They will try to make that decision today or tomorrow at the latest.
Obviously, we would like to get the oral going as soon as possible for we don’t want to take the risk that the cancer in his leg could spread at any time.
We believe that there is a good chance that it has not spread because we did a full bone survey (scan) about three weeks ago and they did x-rays of his chest and legs last week at the NIH and neither of them showed any spread of the cancer.
The biggest question is if this is residual or recurrence of the original cancer. There are many reasons why we all feel that this is residual (which is the best) – too many to list. The doctors are calling it a recurrence of the cancer; however, they have agreed that it could be residual. We won’t know the answer to that until they get him going on the treatments and what the future scans show.
As always, we continue to thank you all for your prayers and support. We are praying that this is residual and that the cells have not spread over the past weeks as they have been trying to get his diagnosis and treatment this figured out.
Isn’t it interesting how Ryan’s results found their way to the hands of some of the top oncologists in the country (U of M, NIH, and Mayo) to make the right decision, how his port surgery scheduled for Friday was cancelled because there was not enough time, then we find out just a couple days before Ryan was to start chemo for Osteosarcoma, that he doesn’t have that which would have been the wrong treatment plan.
For those reasons mentioned above and for many other reasons, we know that God is with us and especially Ryan on this journey and we feel that we are so blessed!!!!!!!
We’ll keep you updated and God Bless and Merry Christmas
Saturday, December 17, 2005 0:12 AM CST
Here is the latest on Ryan.
While at the National Institute of Health – NIH – in Bethesda MD (just outside of Washington DC), they were able to confirm that Ryan does have Osteosarcoma in his left femur. In addition to that, there is a spot on his right femur too, however, they feel that it is too small to biopsy.
They also were able to put together a treatment protocol that will be delivered to Ryan here at the U of M, which is great news to everyone!
The treatment protocol will call for 33 – 36 weeks of chemotherapy, which will include surgery around the 10-week mark. The surgery as we know if today will consist of removal of the lower third of the left femur and replace it with a prosthetic femur bone. Upon completion of the therapy and rehab, Ryan should be able to begin normal activity with the exception of contact sports.
The one question that remained still is how he went from beating Rhabdomyosarcoma to Osteosarcoma in such a short time. Maybe he had both cancers at the same time and they only treated the Rhabdo? Who knows – either way, they will get him fixed again!
As for Ryan – he is heading in to this with his typical great “lets get-r-done” attitude!
On Monday (12/19) Ryan will enter the U of M to get his double port put back in to his chest. They will then keep in the hospital to received his first round of chemo. We are expecting to have Ryan out by Thursday (12/22) so he won’t miss the holidays.
Last year, Ryan met Liz Kaiser (just finished treatment) and Derek Hanisch (a few treatments left) who both had been dealing with Osteosarcoma and went through the same treatment that Ryan is going to go through. Derek, a senior at Eden Prairie, has been a great source if inspiration to Ryan and us. For Ryan, it is nice to know someone to turn to if we have questions.
Back to his DC trip. While in DC, we were able to take in many sights. For Ryan, who is a history buff, enjoyed every minute and is looking forward to a return visit to finish the museums that he missed. A highlight of the trip was the Capitol vs. Red Wings game.
At the end of the game, Ryan was invited to go down to the locker room and met Ben Clymer of the Capitols (thanks to Mike Pasqua – Ryan’s former Peewee A coach who arranged the visit). Ben was able to introduce him to the team, get a bunch of autographs and gave him a tour of the locker room. In addition, Ben introduced Ryan to one of the upcoming superstars in Alex Ovechkan (see photos).
On Monday, Ryan celebrated his 17th birthday by an early dinner with the family, and then had friends over for the evening.
Thank you all for your prayers and support!!!!
God Bless,
The Shuman’s
Thursday, December 8, 2005 9:15 PM CST
Hello from The National Insititute for Health in Washington DC
Today Ryan met with a team of doctors to obtain a second opinion as to what is believed to going on with his left leg.
As many of you know that we flew to the NIH with a couple objectives:
1). To obtain a second opinion on the type of cancer in Ryan’s femur. It was confirmed that it is Osteosarcoma (appears to be localized) and not Rhabdomyosarcoma. In a weird way, that is good news (because they have a good success rate of curing Osteosarcoma patients and that we know that they were able to kill the Rhabdomyosarcoma the first time).
2). To determine a treatment protocol for Ryan. They will be working on that tomorrow (Friday 12/8) and should be able to provide us with their recommendation/s before we leave. As of now, they are leaning to a treatment protocol that would involve 33 – 36 weeks of chemo (a little shorter then the first time through) with local treatment after about 3 of 4 rounds of chemo. Local treatment could consist of either surgery (remove that section of the femur and replace it with an artificial one) or possibly a form of internal radiation – something that would be ingested and travel through his system and actually deliver a form of radiation directly to the infected spot on his leg.
To have two different types of sarcoma is unusual to say the least. They are trying to figure out a couple answers. 1). did he have both before? They don’t think so. 2). could this be an effect of the radiation? Again, they don’t think so either.
They are leaning toward doing some DNA testing with Ryan to see if they can come up with some answers. But for right now, that doesn’t matter – what matters most is getting the correct treatment protocol to get him healed once and for all.
It does appear that they will want to begin treatment with in the next week or two at the latest.
When we arrive back to Minneapolis, our plans are to have this information sent to the Mayo clinic to have another opinion rendered. At this stage, we would be looking to hear what type of treatment protocol they would suggest. It may be the same as the NIH and the U of M, however, we want to make sure that all of the cards are on the table and the correct decision is made on the treatment.
As for now, Ryan is upbeat, as usual, and is ready to meet this head-on. He knows and understands that this is one additional road bump and that he’ll kick this one too!
Both yesterday and today, we went down to DC to see all of the sights. We plan on doing the same on Saturday, only this time, we may take a tour of the city. Tomorrow night, Ryan (mom & dad too) will be attending the Washington Capitols vs. Detroit Red Wings game. Should be lots of fun!
Ryan is looking forward to getting back home, seeing his friends and going to school. Monday (12/12) will be Ryan’s 17th birthday and he looking forward to pending it in Minneapolis verses Washington DC at the NIH.
We will update this as soon as we get back home and we will be updating the pictures then as well.
Thank you all for the support and prayers!!!!!
God Bless,
The Shuman’s
Tuesday, December 6, 2005 9:16 PM CST
Here we sit on the eve of what we hope are some solid answers to a new beginning.
This afternoon our Pastor visited us; he shared with us a passage of the upcoming sermon that I would like to share with you.
Isaiah 40:3-5 “In the wilderness prepare the way of the Lord, make straight in the desert highway for our God. Every valley shall be lifted up, and every mountain and hill be made low; the uneven ground shall become level, and the rough places a plain. Then the glory of the Lord shall be revealed, and all people shall see it together, for the mouth of the Lord has spoken.”
We hope that all our hills and mountains be made low and our ground become level, so that God’s glory can be revealed through his complete healing of Ryan’s body.
Tomorrow Bob and I will leave with Ryan to meet with Dr. Brigitte Widemann in Bethesda, Maryland. We hope to get some of our pending questions answered. They have already received all of Ryan’s previous scans and slides (biopsy). We will be staying at The Children’s Inn, located on the campus of the National Institute of Health.
Our plans are to be home Sunday afternoon, just in time to celebrate Ryan’s 17th Birthday on the 12th.
Please send us all your positive energy and prayers.
In Christ… The Shuman’s
Friday, December 2, 2005 9:18 PM CST
Thursday: Ryan was scheduled to start radiation today, but before we could even get settled in the waiting room, we were rushed off to a room at the far end of the hall. We were told that Dr. Dusenberry, Ryan’s Radiologist wanted to speak to us. As we entered the room not only Dr. Dusenberrry but also Ryan’s oncologist Dr. Neglia and two other residents met us. The look on their face told all, news had changed in regards to Ryan’s diagnosis. We were told that less than 20 minuets ago, the head of Pathology reviewed Ryan’s slides (biopsy) and was certain a mistake had been made. The tumor that they did the biopsy was Osteosarcoma. The good news out of all this confusion is that typically Osteosarcoma is a very treatable cancer, but the question is how to treat it given Ryan has already endured 42weeks of chemo and 43 rounds of radiation. Some of the chemo drugs that were used for the Rhabdomyosarcoma, are the same for Osteosarcoma. There is only so much of some of these drugs that you can have before you start seeing problems with liver and heart. It’s also unknown if perhaps Ryan had both cancer all along, rare but everything about Ryan has been rare. What they do know is that they not only read is slides (biopsy) wrong but didn’t detect the new tumor on his previous scans. Their suggestion is for us to be seen at either the Mayo in Rochester or to make a trip out to The National Cancer Institute in Baltimore.
Friday: Dr. Arndt has agreed to see Ryan in a couple of weeks, but Dr. Neglia feels it would be in Ryan’s best interest to go to NCI. Tonight we were asked to sign a release for Ryan’s slides and scans to be sent to Baltimore for NCI’s to review. We are waiting to hear when they will agree to meet with us; it should be early next week.
We really appreciate all your prayers and support as we continue our journey with Ryan. Overall Ryan is trying to keep a positive focus; he is concerned about having to experience chemo again and perhaps a recession (removal of bone and replaced with another bone) of his leg. I think that was the hardest for him, knowing how that could change the way he lives. But living is what the goal is, so he continues to have that can do attitude.
Wednesday, November 30, 2005 11:38 PM CST
Today Ryan met with the doctors to lay out his treatment plan.
Tomorrow (Thursday), they will begin radiation treatments on both femurs from the middle of the bone to the bottom. They found a small spot on his right femur, they are not sure of that is a tumor or not, however, they want to play it safe - which is fine with all of us!
Ryan will have a total of 15 radiation treatments (everyday except weekend). Each day, Ryan will travel to the U of M for his treatment, then back to school in time for his first class of the day! In the beginning of January, they will scan him again to make sure the all is fine.
They also will start Ryan on some oral chemo drugs. The purpose of this is just in case there are any bad cells floating around his body; this chemo should knock them out.
Ryan will stay on these for better part of a year. The good news about these drugs is that there a virtually no side effects. Ryan will not loose his hair; will not get ill, and no weight loose. In fact, he should feel fine.
The doctors feel that this should do the trick one and for all!
They told Ryan that once his leg heals (in about 6 weeks) he can begin skating and training, and then in about 12 weeks, he can regain full activity with no restrictions.
To be honest, we couldn't be happier with the plan - it looks like we were fortunate to catch this when we did!
Thank you all so much for the support and prayers!!
God bless!
Monday, November 28, 2005 11:35 PM CST
As many of you know, today Ryan went in for a biopsy on his left leg. The procedure took just over 90 minuets. We were supported not only by medical staff but had a surprise visit in the surgical waiting room by a mother of a fellow cancer patient. We know many of you are anxious to hear about how Ryan’s biopsy went today so here is the update.
Ryan’s surgery went well and he is recovering. His leg is very sore and he will have to stay off the leg for a few days.
As for the biopsy results – the surgeon confirmed that the small mass in the lower portion of his left femur (just above the knee) is indeed the Rhabdomyosarcoma cancer.
The question is if this is reoccurring or is this residual. For the most part, it is being perceived as residual meaning that they may have missed this in his first treatment.
When Ryan went through his last round of body radiation last July, they radiated his whole body down to the middle of the femur. This tumor is located at the bottom of the femur, thus a good indication that this may be residual.
We will be meeting with the doctors later on this week to finalize his treatment plan. For now, they are leaning to giving the femur local radiation, followed by scans in about 4 – 6 weeks. If the results are favorable, which is expected, then they considering some type of oral chemo to make sure that there are not lingering active cells hanging out someplace else. The benefit to this is that he would not lose his hair and would not have many negative side effects. This would allow him to keep a normal life style that he has become accustom to. All of which is OK with Ryan.
For Ryan’s leg, Ryan will have to stay low for a few weeks, and will be able to begin pick up his activities at about the 6 week mark and will be able to begin excising. After 12 weeks, he should be able to begin full strength activities, which will keep him on plan to play hockey in the near future.
Thanks for all of the support and prayers!!
The Shuman’s
Mark 11: 24-25
Listen to me! You can pray for anything, and if you believe, you can have it; it’s yours! But when you are praying, first forgive anyone you are holding a grudge against, so that your Father in heaven will forgive your sins too.
Friday, November 25, 2005 11:00 PM CST
We’d like to start off by wishing all of our friends and family a Happy Thanksgiving! We certainly have a lot to be thankful for this year. We spent the holiday with family at our house. Everyone was accounted for except Alicia, she managed to be stuck in bed with a fever and stomache.
As many of you have heard or read, Ryan had his six-month scans on the 11th of November. We were pleased to be told, once again the scans were clear of any cancer. We were scheduled to meet for a general clinic visit on the 22nd of November, just a few days prior; Ryan began to complain of severe leg pain just above his left knee. He had suffered a minor injury in that knee from hockey on the 30th of October, but it didn’t seem alarming. After great debate at his clinic visit with his team of Doctors, an additional MRI was done. It did show some sort of mass just above the left knee, within the bottom of the femur bone. The Doctors are unsure if it is just an infection or if it is a tumor. They have decided the only way we can be sure is to do a biopsy of Ryan’s left leg. On Monday the 28th, Ryan will go in for a surgical procedure to find out for sure what is in his leg. They will make a two-inch incision near his knee, then will drill into the bone and remove a portion of the bone to biopsy. He will have a six-week recovery.
We pray that it’s just an infection. The Doctors are concern that it may be his Rhabdomyosarcoma returning. We know that God is the great physician and will guide the surgeons.
So please keep Ryan and our family and team of professionals in your prayers on Monday. He is scheduled to start his procedure at 12:00PM,at the FV University Hospital.
Friday, November 11, 2005 6:08 PM CST
Hello from the Shuman's.
We just wanted to share some good news!
Today Ryan completed his scans (PET and CT Scans) and we have great news to share with you. We were expecting to hear the results on the 22nd of November, however the doctors couldn't wait to tell us the great news and they called arounf 3:00 today to tell us that his scans were CLEAR!
Praise god!
Ryan is busy trying to get in condition for this upcoming season. He has been lifting weights and some light skating. It was determined that he is still a ways off from being ready to play on a regular basis.
With that in mind, Ryan will spend most of the season getting stronger both on and off the ice.
The plans are that he will continue to lift weights 3 days a week and attend hockey practice each day. The hope is that by December or early January that he could begin skating with the team and with any kind of luck, see some limited game action by the end of the season.
The goal is to get him ready to play this spring, summer, and fall and join the team next winter.
Thanks again for the prayers and support!!!!
The Shuman's
Tuesday, October 25, 2005 4:09 PM CDT
Each day brings a new beginning for Ryan; he continues to put on both muscle and weight. He has begun working out, but I think he would like to reap the benefits a little quicker. It’s hard to be have patience when you’re a teenager.
School is going well; he has managed to be almost there on a regular basis. There are still days that he is under the weather, typically with a stomach or sheer exhaustion, but still manages to get in for a majority of the day.
We just recently spent time in Florida together as a family. Ryan was the most pleased with the vacation since we spent majority of the time experiencing the pre-Wilma rains. He begged to head even farther south than Orlando so he could experience the full effect but we refused.
Our next scans will be on the 11th of November. The Doctors are still very pleased with Ryan’s progress and do not expect any changes come the November scans.
Thanks for keeping our family in your prayers…
Sunday, September 25, 2005 2:02 PM CDT
Here is the latest on Ryan since September 10.
He is doing great! He has been working out almost 5 days a week in trying to get ready for Eden Prairie HS Hockey tryouts which begin November 14.
He has been able to add close to 14 lbs since the beginning of August.
Last night Ryan went to homecoming dance and had a great time (see new photos).
Ryan was seeing the doctor every 2 weeks and now since he has been doing so well, the doctors now want to see him once a month.
His next set of scans will be scheduled for some time in November.
Thanks again for keeping Ryan in your prayers and thoughts.
Saturday, September 10, 2005 11:30 PM CDT
Hello all -
Sorry it has been a while since we last updated Ryan's site.
Ryan continues to feel great.
He is back to school and is enjoying being back to a normal routine.
Last week Ryan started training in at the Athletic Performance Academy (APA) under the direction of Dr. Larry Meadors.
Ryan is currently working 5 days a week to try and get his conditioning back. His goal is to be ready in time for the upcoming HS hockey season.
As always, we thank everyone for your prayers and support!
Monday, August 22, 2005 10:36 PM CDT
Time for Celebration…
Today marks the final chapter of Ryan’s journey. After a long sleepless night, Ryan bravely had his super pubic catheter tube removed. There was some last minuet hesitation, but after great debate the tube was removed. It was removed without any painkillers, but as always Ryan endured the pain with great courage. Tears of both joy and pain flowed from Ryan’s face – not to mention mine too.
Ryan will spend the next 24 – 48 hours lying low as his bladder mends. The removal of the tube left him with an open wound that we’re told will seal on it’s own.
Today Ryan was reviewing his training plans and is looking forward to kicking his training it in to high gear next week.
Ryan had a great weekend – on Saturday we attended the Miracle Kids Triathlon sponsored by Miracles for Mitch foundation. Then headed to the Norapoloza event, which was to celebrate another cancer survivor, Nora Lescarbeau. Nora is the daughter of Mike and Lisa Lescarbeau. While at the event, we happened to see the Brunner’s from Burnsville who’s son Joey is also a cancer survivor. We wrapped up the evening with our annual Neighborhood Block Party.
On Sunday, we spent the day at the Renaissance festival. The folks from Children’s Cancer Research Foundation were gracious enough to supply our family with tickets.
Thanks to everyone for all of your continued support and prayers, we feel honored to have such great friends and relatives.
Just a quick note-for those of you who are BIG "Five for Fighting" fans, see the following URL http://www.fiveforfighting.com for journal entries dated 12/7/04 and 8/15/05. Thanks to our close friend and neighbor for his caring heart.
Thursday, August 18, 2005 10:56 PM CDT
Well Ryan has enjoyed his past days being port free.
Tuesday and Wednesday Ryan went through his first set of scans since being declared cancer free.
Talk about nerve racking – Ryan spent the past two days running an array of scans. Tuesday, which included a 4 1/2 hour MRI, Skeletal survey and abdomen x-ray and then finishing with a PET Scan and CT on Wednesday.
Today (Thursday), we had the meeting with his medical team to go over his results which were exactly what we were looking to hear – Ryan’s scans showed that he is clear and there is no sign of cancer in him.
We expected this result, but until you hear the doctors actually say that he is “clear” you don’t rest very well.
Also, on Monday (8/22), Ryan will finally have his super pubic tube removed from his stomach.
We’d like to close with a verse that Ryan actually is wearing on his wrist.
“With God all things are possible” Mark 10:27
Saturday, August 13, 2005 10:05 PM CDT
It’s been over twenty-four hours since I have been port free, and it feels great! My surgery went well, I’m pretty sore today on my chest but feel good otherwise.
Some folks from Make a Wish delivered tickets for me Friday evening for the Vikings Game. It was perfect timing, since I spent majority of the afternoon on the internet, trying to get tickets.
Today I relaxed with friends and family, tonight we went out for dinner downtown and ice cream by the lake.
I’m anxious to get back on the ice, and plan to begin to work out on a more regular basis starting sometime this week.
Thanks again for all your prayers, I couldn’t have gotten through this year without all of you.
Keep praying for me… Ryan
Tuesday, August 9, 2005 10:30 PM CDT
Hello all:
Sorry for the delay in updating the website - we have been so busy, time just slipped by.
Well, Ryan did not have the surgery last Friday as planned - the doctors postponed it for this Friday (8/12) for 7:30 am. Ryan's counts just were not where the doctors wanted them to be at prior to the surgery, therefore, they didn't want to risk it.
Counts are now fine and he is all set for this Friday morning at 7:30 am which he is very excited about. Ryan is however, disappointed that they are not going to remove the super pubic catheter out of his stomach. They are going to hold off for a week or two - scheduling issues.
Other then that, Ryan is feeling great! He started working out at the Hockey Performance Academy this past weekend - shooting, riding the excerise bike, and lifting dumbbells. His appetite is back too - he has gained back about 10 pounds over the past week plus.
The doctors have also scheduled his next set of scans for August 16 and 17. This will be his first set of post cancer scans. They will run scans every 3 months for a period of a couple of years.
As always, thanks for the support and prayers!!
Saturday, July 30, 2005 12:29 AM CDT
Hello everyone – Here is a quick update on Ryan.
Ryan was scheduled to have his port taken out if chest yesterday, however it was postponed for one week (August 5). The doctors made the decision because he hadn’t recovered as they had hoped.
The chemo / radiation combination was just a little too much for him. As a matter of fact, Ryan is just now beginning to eat solid foods, however, his throat is still sore.
Other then that, he is feeling good and getting ready to resume his normal life once next Friday is over.
All of us would like to thank everyone for the support of the Relay For Life in Eden Prairie last weekend. This event passed the goal of $92,000. The last I heard that we are close to $100,000 and money is still coming in!! Thank you!
Even though Ryan’s counts were extremely low, he was able to make it from 5:30 pm to 1:30 am. Ryan was also able to make the survivors lap at 6:30 pm and one again at 9:30 pm after he spoke.
Overall, we had a great time – Ryan had a chance to catch up with many friends and meet many new ones.
Thanks again for the support and prayers!
Wednesday, July 20, 2005 9:41 PM CDT
Just a quick update… The past few days have been tough, Ryan is still struggling with the recovery period from radiation and chemo. They decided to discontinue the last two sessions of radiation. They reassured us that Ryan has had more than enough, and could skip them. It’s just as well since Ryan is extremely exhausted and is suffering from what we call “radiation fall out”, with symptoms of vomiting and sore throat and tender tissues. As for the stem cell transplant, all went as well as expected. Our hope is that it will help rejuvenate his white cells more quickly. We had some concerns with this procedure, since it’s really unknown for sure where cancer cells develop. The Dr’s felt confidant, since Ryan’s cancer wasn’t in his marrow or blood stream, he shouldn’t have any chance of having affected stem cells, that could be cancerous. They also told us, Ryan had received three rounds of chemo prior to the draw in January, should there have been any cancer, and it would have destroyed any cancer.
Two days from now, we will participate in Eden Prairie’s Relay for Life. Ryan is still planning on speaking at it, but his speech will be shortened due to the soreness he is experiencing in his throat and fatigue. So many friends, family and neighbors have either joined our three teams and or donated. Ryan’s little sister Jessica, has been collecting change with the neighborhood kids. They have raised money with bike washes, door-to-door, lemon aide and snack sells. It’s really neat to see the excitement they have for the event. The event is at Central Middle School and will start with a survivor lap, which Ryan will get to participate in! The event is open to the public and will run 6 pm, Friday to Saturday at 6:00 am, please feel free to join us. If you would like additional information on the Relay for Life, visit the link before. We hope to see you all Friday evening.
Saturday, July 16, 2005 10:28 PM CDT
We are happy to say, Ryan came home late yesterday evening. I think Ryan would agree that out of the forty-two week protocol, last week was the longest. I’m sure the anticipation of finally being done had a lot to do with it.
We found it more difficult to get Ryan motivated for this last round of chemo. Overall the week went typically normal, we did have to sedate Ryan to give him a break from being sick from the chemo and radiation.
He was fortunate to have Derek as his roommate. Derek is also an EPHS student, battling cancer. The two are good support for each other. Since he has been home, Ryan has been mostly relaxing. He was scheduled for radiation this morning, but when he arrived the machine was acting up and sent home. His last round of radiation will be Monday, followed by him receiving his stem cells.
As of July 15th, Ryan will have two days to celebrate each year - December 12th (birthday) and now the 15th of July, when Ryan will be in “remission”.
He had a couple of friends stop by in the afternoon to sign up for his team for the Relay for life, which takes place next Friday. He’s slotted to speak, but at this point he may not be able to due to his throat is sore from radiation. Tonight Ryan is just lying low, trying to recoup.
As always – thanks for all of your prayers and support!
God Bless
Please note, new photos have been added!
Monday, July 11, 2005 9:07 AM CDT
Sorry for the delay in updating Ryan’s website. As they say – no news is good news and that is the case with Ryan.
The past couple of weeks have treated Ryan well. In between his radiation rounds (9 in the past 2 weeks), Ryan has managed to play a lot of poker, took in some fishing and was able to have perfect attendance at summer school where he is trying to make up a couple credits from this past year.
As we enter the week of July 11, Ryan will head down to the U of M hospital for his fourteenth and last round of chemo. This round of chemo will require a weeklong stay at the U which Ryan is not looking forward to, however, knowing that this is his last one makes it a little easier to handle.
In addition to that, Ryan will also begin his last 6 radiation treatments, which will conclude on Monday July 18.
Ryan is also excited that his hair is growing back and he is hoping he won’t lose his hair with this last round of treatment.
Thank you so much for the prayers and support!
God bless!
Wednesday, June 22, 2005 11:38 PM CDT
Tonight a familiar sound is coming through the vents at our home; Ryan has a basement full of friends playing poker. I think it’s one of the things both Bob and I have missed the most since Ryan has become ill. It’s so nice to get back to some sort of normal, even thou we’ve decided that normal at our house will never be the same.
Ryan spent the afternoon down at the University Hospital, getting staged for his upcoming rounds of radiation. The plan is to start both Tomo radiation and regular (traditional) radiation on Monday the 27th of June. He will have a total of 15 rounds of radiation. Ironically Ryan will end both radiation and chemo within days of his original injury, on the 14th of July last year.
Saturday is the Children’s Cancer Research fundraiser, Time to Fly. Ryan will be speaking at the opening ceremonies. They have been running the commercial that features Ryan and two other children on channel 45 for the race for quiet some time, hopefully lots of walkers and runners will turn out.
Many of you have showed your support over the past year and now continue to ask, “What can be done in his final weeks of treatment”. Since the next few weeks of chemo will be coupled with radiation, it may be his most difficult week of treatment. We are suggesting that you either send a note of encouragement on the Caringbridge site or a card of support and congratulation on his victory over cancer.
The plans are in the works to celebrate Ryan’s victory over cancer, we will provide information with the details once they are finalized.
Our family can’t begin to even thank you all for your prayers and support. We have grown so close to all the medical staff at Fairview University and Fairview Homecare. It’s always difficult to say goodbye, but we really don’t feel that’s the case. We feel that we have really extended our immediate family to include the medical staff but also friends, neighbors and countless others. If we could ask of one more thing from all of you, continue to keep Ryan and our family in your prayers as we continue to help Ryan stay cancer free. God bless you all …
Bob and Suzi
P.S. We are still in need of some more Relay for Life participants for Ryan team - Fish'in for a Cure, Alicia's team - Cheering for a Cure, and our team - Team Ryan Shuman.
If you are interested in participating on either of these teams on July 22-23, registration is fast and simple - go to www.acsevents.org/relay/mn/edenprairie.com and select SIGN UP HERE, then JOIN A TEAM, then select one of the TEAMS.
Thanks again for the support!
Saturday, June 11, 2005 10:49 AM CDT
Here is the latest update for Ryan.
On 6/1, Ryan started his first of 18 radiation treatments on his spine (T-9 & T-10) – pretty uneventful!
On 6/8, we had a meeting with the medical team to discuss the final chapter of Ryan’s treatments. In that meeting we were presented with 2 options:
Option A: Since Ryan has done so well with the chemo treatments, we could discontinue all treatments after his last round of chemo (around the first of July).
The down side to this option is that they can’t guarantee that all cancer cells inside the bones are dead. From all of the scans, they don’t see any living cells, however, there could be some active cells still in the bones. If we stop treatments and the cancer comes back, it will be more difficult to treat, plus Ryan would have another 6 rounds of chemo and a month plus in the hospital with a full bone marrow transplant (BMT).
Option B: Give Ryan another 18 rounds of a full bone radiation. This means that all of his bones from his shoulders to his knees will be irradiated. This will kill any living cancer cell that the chemo didn’t get. When this is done, then Ryan will be finished with all treatments.
We chose option B. It seemed like a “no-brainer” to us. Doctor Naglia put it this way “our goal is not just to have Ryan live a few more years, but to kill all of the cancer in his body and to give him a chance to live a long healthy life and we feel that option B will do just that.”
A positive for Ryan is the medical team is working with Ryan’s schedule to make sure that he achieves his time-line for hockey – back on the ice in early July and full training by August 1. The doctors said “no problem” and that Ryan may be ready sooner then that.
Ryan will go in next Monday for his second to last round of chemo. They have reduced the number of drugs that he needs, thus this will only be an overnight stay. Then wait for a couple of weeks, then start the radiation treatments.
Other then that – he is doing well. The pain in the lower region is starting to feel a little better, his appetite is back, and he is starting to gain weight again!
_________________________________________________________
JUST A QUICK NOTE – WE ARE TRYING TO GET 2 RELAY FOR LIFE TEAMS AND WE ARE IN NEED OF A FEW MORE PEOPLE TO COMPLETE THESE TEAMS.
Please contact us at rshuman@mn.rr.com of call us at 952-937-7585 to let us know if you can participate. We have just about a week to get this done.
Sunday, June 5, 2005 10:07 PM CDT
Sorry it’s been a few days since our last update, here’s our attempt to bring you up to date.
Saturday-May 28th
After great debate, Ryan came home late this evening. He still is experiencing quiet a bit of discomfort. The doctors are doing the best to figure out what care would aide him, but so far no luck. They did up his pain medication, but he still doesn’t have any appetite. He weight is down about 25lbs and he has little energy. He visited briefly with two other kids on 5B as he was leaving. Both Derek (Junior from EP) and Liz are battling the same cancer, ostiosarcoma (? spelling). Both are doing well; please keep them in your prayers too.
Sunday-May 29th
Ryan is still taking it easy. He is anxious to get to the lake for a little fishing, but for now the closest he’ll come to fishing is with his Playstation Game “Rapala Pro Fishing”. It’s especially tough when the weather is cooperating. Ryan is pretty much the same. We are hoping for the day when Ryan gives us the thumbs up for a great day.
Monday-May 30th
We spent the holiday with some good friends. Steve and Becky Chepokas are the founders of Miracles of Mitch. It’s a wonderful foundation that helps families in countless ways. They were gracious enough to have us over for a barbeque, and we’re happy to say Ryan sunk his teeth into some steak and corn on the cob. It was fun to spend some time with them and their daughter. If you would like to learn more about their foundation, here is their address: www.miraclesformitch.com
Tuesday-Thursday
All is quiet… That’s a good thing; Ryan seems to managing his pain a little better. His appetite is slowly returning also. On Wednesday, he starts radiation on his T10 and T9 (spine). They are planning on a total of 18 treatments at a lower dosage than he received previously last March. It’s so difficult for both Bob and I when Ryan starts radiation. They temporally make a tattoo on his chest cavity and rib cage with markers, to help guide them where to radiate. It’s in the shape of a cross; we always say it’s a visual marker of the love of Jesus from his heart showing through. Please keep Ryan in your prayers.
Friday-Sunday
Ryan spent the past two days with friends and family. He was even able to get in some fishing. He caught just two bass but nonetheless had a great time. He had a couple of friends sleep over Saturday and caught a Twins Game on Sunday. At the Twins Game he met Ron Coomer and Kevin Tapini (photo to be added soon). The Miracles of Mitch Foundation had a gathering prior to the game. Ryan also met a girl close to his age that also has Rhabdomyosarcoma. Trista is currently going through radiation. Please keep both Ryan and Trista in your thoughts and prayers while they both go through their treatments this week.
RELAY FOR LIFE
The Relay For Life which will be held in Eden Prairie on July 22 from 6:00 pm to 6:00 am.
We are just past 50 percent our goal or having 50 teams registered for the event.
We encourage all of you to visit the website www.acsevents.org/relay/mn/edenprairie to learn more about either participating on a team or starting your own team.
If you have additional questions, please let us know or you can contact Joleen Petersen @ jopetersen@mn.rr.com or Amy Nylander @ nylander@mn.rr.com.
Again, we thank all of you for your prayers and support!
Friday, May 27, 2005 3:37 PM CDT
This morning Ryan went in for an exploritory surgery with Dr. Rosenthal - Chief of Colon Recotol Surgery - to see what is causing all of the pain. The same procedure that he went through a couple of weeks ago.
This time, they were able to see a couple very small fisers (small tear in the lining) and every thing else looked good.
The doctor feels that the pain may be a result of nerve reaction because of the original tumor's size and some reaction still from his radiation last March.
Again, good news is there is nothing major that is wrong, the bad news is that he may have to deal with the terrible pain for a while until it just goes away.
While in surgery, the doctor removed part of a muscle close to where the main tumor was to relieve some pressure which may help him heal faster. However, now he is dealing with a lot of pain from that procedure.
Ryan was scheduled to be released from the hospital tomorrow,however, because of this surgery, we are not sure. We'll take day by day.
On a brighter note - Ryan is busy making plans for his hockey comeback. A customized training schedule is being put together from him. The way it looks, he'll have about 4 months to get back in to shape before the next hockey season starts.
He has also been asked to particiapte in a baseball tournament in late July. Not sure if he will be ready for that, however, he is making that one of his goals.
RELAY FOR LIFE
The Relay For Life which will be held in Eden Prairie on July 22 from 6:00 pm to 6:00 am.
We are just past 50 percent our goal or having 50 teams registered for the event.
We encourage all of you to visit the website www.acsevents.org/relay/mn/edenprairie to learn more about either participating on a team or starting your own team.
If you have additional questions, please let us know or you can contact Joleen Petersen @ jopetersen@mn.rr.com or Amy Nylander @ nylander@mn.rr.com.
Again, we thank all of you for your prayers and support!
Thursday, May 26, 2005 10:44 AM CDT
As Ryan enters day 3 of his third to last chemo session, with the exception of his lower region pain, he is feeling great.
The chief of Colon Rectal Surgery has scheduled a batery of exams for Ryan on Friday to get to the root of the problem. He feels that there is an internal tear that was missed before and they can get this finally fixed!
Next Tuesday, they will begin radiation on his spine (both T10 and T9). Even though there are no signs of cancer there, they want to play it safe and give it a few does of radiation just to make sure there isn't a living cancer cell. Better to be safe then sorry!
Also - finally, we have added some new pictures!
RELAY FOR LIFE
The Relay For Life which will be held in Eden Prairie on July 22 from 6:00 pm to 6:00 am.
We are just past 50 percent our goal or having 50 teams registered for the event.
We encourage all of you to visit the website www.acsevents.org/relay/mn/edenprairie to learn more about either participating on a team or starting your own team.
If you have additional questions, please let us know or you can contact Joleen Petersen @ jopetersen@mn.rr.com or Amy Nylander @ nylander@mn.rr.com.
Again, we thank all of you for your prayers and support!
Monday, May 23, 2005 2:20 PM CDT
Tomorrow (May 24) Ryan will enter the hospital for next round of chemo which will last for the balance of the week. If all goes well, he should be able to get out on Friday.
On Sunday, Ryan had a chance to enjoy the sunny day on Lake Minnewasta (? on spelling) while particiapting in Carver County's "Fish with the Sherrif" event. Ryan was invited to participate in that event by Steve Chepokas (founder of Miracles For Mitch foundation).
Ryan started out the day by having brunch with Steve and Vikings Adam Goldberg, then headed off to the lake to do some fishing. Not only was Ryan able to share the boat with Adam and Steve, he was also able to meet and fish with Josh (the 13 year old Gymnast from Watertown). You may have read about him - he was the boy that had the freak accident that left him paralized from the waist down. What a great kid and a true inspiration he is!
To quote Ryan "It doesn't get much better then this"
MIRACLE MONDAY
Today is Miracle Monday at all of the Culvers in Minnesota. Today only, 10 percent of all food sales will go to the Miracles for Mitch Foundation. To learn more about this great organization, please visit their website at www.miraclesformitch.com.
RELAY FOR LIFE
The Relay For Life which will be held in Eden Prairie on July 22 from 6:00 pm to 6:00 am.
We are just past 50f our goal or having 50 teams registered for the event.
We encourage all of you to visit the website www.acsevents.org/relay/mn/edenprairie to learn more about either participating on a team or starting your own team.
If you have additional questions, please let us know or you can contact Joleen Petersen @ jopetersen@mn.rr.com or Amy Nylander @ nylander@mn.rr.com.
Again, we thank all of you for your prayers and support!
Wednesday, May 18, 2005 3:59 PM CDT
Here is the update on Ryan - sorry for the delay since our last update.
As they say - no news is good news. We'll that is almost true for Ryan. He continues to do well with his chemo treatments and only has 3 left. Also, now knowing that the tumors are gone, Ryan is on top of the world.
That said, he is still dealing with a lot of pain which was a side effect of his chemo treatments back in March. On Monday, Ryan went to a pain specialist to see if they can adjust his medications and get some relief. It seems to have worked over the past couple of days.
Also - I have to mention the Relay For Life which will be held in Eden Prairie on July 22 from 6:00 pm to 6:00 am.
Last count, I heard that we have 26 teams signed up which is great, however, that is about 50% of the goal for this year.
We encourage all of you to visit the website www.acsevents.org/relay/mn/edenprairie to learn more about either participating on a team or starting your own team.
If you have additional questions, please let us know or you can contact Joleen Petersen @ jopetersen@mn.rr.com or Amy Nylander @ nylander@mn.rr.com.
Again, we thank all of you for your prayers and support!
Thursday, May 5, 2005 8:47 PM CDT
Here is the latest update on Ryan.
As many of you may know, Ryan was admitted last Saturday with some severe pain. The doctors worked diligently to try and find out the cause of the pain - they did 3 exams - the second exam was a colon-scope which required the to put Ryan to sleep for that one. The third exam was another MRI.
Good news/Bad news. The good news is that they could not find anything wrong - everything looked great. The bad news is that they don't know why he is having so much pain.
Now that they can rule out any sign of infection, the doctors decided to go ahead with his chemo today which is still 4 days ahead of schedule.
They also decided to move Ryan from narcotic drugs to non-narcotic drugs to help stop the pain. I am in favor of this especially after the report of a local 17 year old that lost his life due to oxicondone which is what Ryan has been taking for the past 6 months.
Today we met with the doctor to map out a schedule for his last round of radiation for his spine, pelvic, and femur. To our pleasant surprise, the tumor on his spine was no longer present on the latest scans. They will continue to radiate as planned to make sure that there are no remaining cancer cells left. We should know in a couple of days when they plan to do his spine - but it sounds like it might be on his next round of chemo (3 weeks from now).
Thanks again for all of the support and don't forget to put together your Relay for Life team!
Sunday, May 1, 2005 5:32 PM CDT
Well, Ryan is starting off the week of May 1 by hanging out in the hospital.
Yesterday, Ryan shot a commercial with 2 other cancer survivors and a local actor at Harriet Island for channel 45. The commercial is for the Time To Fly 5K and 10K run in July. We're not really sure when the commercial will air, but I would assume soon.
As most of you know, the weather was not on our side. It was cold and windy which by most counts is not that big of deal - except that Ryan's counts were very low, in fact, last Thursday, his white count was 0.4. With a count like that, he really has no ability to fight off anything. Ryan was joking by saying that "if someone sneezes a mile away from him, he thought that he would catch their cold".
After that event, Ryan went to the U of M hospital to be seen for some severe pain in his colon region and ultimatly admitted. He had been dealing with some severe pain in the stomach and colon area for some time (since he ended the radiation in March)
The pain was no longer managable and the doctors plan to keep him in until they can get him on the mend. They are thinking that it could be an abscess or celioitus in the colon region.
As of today, they are rulling out an abscess which is good for that would require a surgery. The celioitus can be treated by antibiotics. We should know more in a day or so.
So for now, Ryan will be at the U of M for a few days getting caught up on one of his favorite day time shows - the Price Is Right, not to mention that he will continue to hone his Play Station 2 skills.
Ryan is hoping to get out by Tuesday so he can have a day out of the hospital before he is admitted on May 5 for his next round of chemo.
He is keeping focused on the fact that he only has 4 more rounds of chemo and when he kicks off the Relay for Life event in EP and the Time To Fly run in July, he too will be labeled as a Cancer Survivor and nto a cancer patient!
Thanks to everyone for the support and prayers. It's been a marathon in which Ryan is in the last stage before he finishs the race.
Saturday, April 23, 2005 1:15 PM CDT
Yesterday (Friday), the catheter change went well for Ryan. The doctors gave him plenty of drugs in an attempt to reduce some of the discomfort of the change which helped. It is believed that the old catheter may have been the cause his Ryan's illness last week.
Ryan made it out of the hospital today (Saturday) only one day later then expected. Not bad considering how he had been feeling the past couple days.
As most of you know, one of Ryan's goals to get back on the ice as soon as possible so he can get start training for next hockey season. Since the doctors are aware of this goal too (surprise), they're trying to help him meet his goal of full contact by August 1. With that in mind, and because he rebounds so well from his chemo treatments, the doctors moved his next round of chemo up four day to May 5 from May 9th.
If the doctors are able to coninue to move his schedule up, Ryan could be done with the chemo treatments sometime between the end of June and the first part of July instead of mid July. This is important since he will still have some radiation on his pelvic and femur bones after his last round of chemo.
As for now, he is home and resting and will begin working hard on the Relay For Life event that he is involved with.
If anyone is interested in participating in the event by either participating on a team or being a captain of a team, feel free to contact us or check out the website at
www.acsevents.org/relay/mn/edenprairie. The teams consist of 8 to 15 participants. This years event will he held on July 22-23 at Central Middle School in Eden Prairie. Hope to see you there!
Thanks for the support and prayers!
Thursday, April 21, 2005 3:40 PM CDT
Well, what can we say - Ryan is celebrating his good news on the scans by getting sick.
Yesterday (Wednesday) Ryan woke up not feeling so good - his stomach was a little unstable, light headed, and real tired which is not like Ryan at all.
He had some visitors yesterday and on Tuesday which really perked him up!
As for his illness, the thought was this may be a combination of an infection that was in his catheter site from the previous week and the fact that he had been up real late on Monday and Tuesday nights dealing with emotional garbage.
That seemed to pass during Wednesday, however, by 7:00 pm, his temp started to rise and continue to become more light headed. By 11:30 pm last night, he had spiked a temp of 102.1 and severe diarreha (more information then you wanted to know I'm sure). The doctors were able to get the temp down to the 99 range, but still is feeling very light headed and sleepy today.
They started running antibiotics in him last night around 8:00 pm and they plan to continue to do so through tomorrow. The guess is that there is still an infection running through him from the catheter site - they hope to get the cultures back soon to verify.
Either way, it does not look like he will be getting out of the hospital on Friday as planned. Ryan was also informed today that they are going to change his super pubic catheter tomorrow which is very painfull. This is a when they take the tube out of the stomach and bladder and insert a new one. Unfortunalty, this is done without any real pain relief. As Ryan would tell you, this is one of the most painfull procedures that he has ever endured.
The old catheter may well be the primary cause of the infection, therefore, it must be done. Ryan was hoping that he could hold off for a few weeks and get it removed permanently - no such luck. As it looks now, the doctors are thinking that they catheter will stay in his stomach for another 3 to 5 weeks. He needs to demonstrate the ability to expand his bladder before they remove it. As of now, when they clamped off the catheter, he urinates every 30 minutes. The doctors want his bladder to be able to holf for at least 4 hours.
That's it for now - thanks to all for everything!!!
God bless!
Tuesday, April 19, 2005 4:11 PM CDT
Today was a great day for Ryan and the rest of us.
As many of you know, Ryan went through rigorous schedule of scans over the past few days which Ryan handled with flying colors.
So here is the good news - Although not all of the scans had been read yet - they were able to determine the following:
- The main tumor between his bladder and prostate which was the feeder tumor and the most dangerous is now GONE!!!
- Lymph nodes - still clear and no signs of cancer in them either!!!
So what is next for Ryan?
He will continue to receive four additional rounds of chemo after he completes the current one.
They will look to schedule radiation on his spine over the next 30 - 45 days to remove that.
Once that is completed, the doctors still want to radiate portions of his pelvic bone and femur bone because in the original diagnosis, the scans did indicate cancer in those areas. The doctors feel that it is better to radiate those spots and be on the safe side - can't agree more! That will happen towards the end of his treatments - sometime around July or August.
Other news today - the doctors clamped off his super pubic catherter today to see how well Ryan is able to urninate on his own. If the doctor is pleased with what he sees, he will schedule a time for Ryan to have the SP catheter removed. We'll update you later on this!
The only issue that Ryan will have to deal with is the frequency of urinations. Since hs has not used the bladder since September, the bladder will need to be trained to hold larger volumes of urine.
Overall - Great news and we can truely say that we can see the light at the end of the tunnel!!!!!
As allways - thank all for the support and prayers!!!
God bless,
The Shuman's
Saturday, April 16, 2005 2:26 PM CDT
Over the course of Ryan's treatments, I have heard many people say that you either have a good day or a bad day.
We have found that with Ryan, he either has a good week or bad week. We/Ryan have been blessed with many more good weeks than bad weeks, however, this last week for Ryan would have been categorized as a bad week.
Here is a review of the week for Ryan:
Saturday (4/9): Ryan spent close to 8 hours in the Southdale ER receiving medicine via his port due to an infection in his super pubic catheter site in the stomach resulting in Ryan spiking a temp.
Sunday (4/10): Ryan had to go through another round of meds to fight off the infection, good news was the nurse came to the house and administered the meds at home. No hospital visit!
Monday (4/11): Back to the Masonic Cancer Center at the U for an exam of the infection followed by a blood transfussion. Kind of a whole day event again for Ryan.
Tuesday & Wednesday (4/12-13): Feeling better, but not able to go to school - his counts were very low from the last round of chemo, plus he was dealing with a cold.
Thursday (4/14): Now that the radiation was completed over 3 weeks ago and his last set of scans were back in December, it is now time to run another set of scans to see how Ryan is doing.
There are a total of 6 different scans that they will perform. The first set of three scans (pelvid MRI, full body PET scan, and full body bone scan)were performed.
Friday (4/15): School was on the agenda for the first time this week. Ryan made it to 9:30 am and had to come home due to stomach pains.
This weekend - so far so good!
Monday (4/18), Ryan will have a busy day - he will have another other 3 scans performed, then be admitted to the hospital for 5 days while he received his next round of chemo. Later on that day, Ryan will meet with the Doctor to discuss the super pubic and determine the plan of action to remove the super pubic catheter from Ryan's stomach.
Tuesday (4/19) Ryan will have his full consultation and review of the scans. We are hoping and praying that the results will be favorable. We are optomisitic that they will be.
As always, we thank everyone for their support! With these important days ahead of Ryan (scans and consultations), we ask that you keep Ryan and us in your prayers.
God bless!
Saturday, April 2, 2005 1:28 PM CST
Well - Ryan made it through this round of chemo with flying colors and came home yesterday (Friday) and now has only 5 more sessions left.
I would have to say that this was his best round - I don't think he even had a headache from this round.
Last Thursday, they ran a set of x-rays on his lower back and on Friday they had Ryan do an MRI of the lower back. He had been complaining of lower back pain and the doctors wanted to play it safe. The x-rays were normal and we have not heard the results of the MRI, however, we are expecting them to be normal too. It is great to see Ryan's medical team being so proactive.
Now that spring is upon us, his mind is starting to shift from hockey to baseball. Next week the EPHS baseball players will be heading to Florida for their annual baseball trip. This was an event that he was looking forward to, hopefully next year Ryan will be able to go!
Like hockey, this baseball season will the first one he has missed since he was in first grade and I think that he is now realizing it.
Ryan plans on attending as many of the games as possible and is looking forward to cheering on his firends and will be looking forward to getting back on the field again too.
Monday, March 21, 2005 1:22 PM CST
Wow - it has been about a week since the website was last updated - sorry about that!
Last Friday (3/18), Ryan ended his 6 week chemo / radiation combo treatments (28 in total) and is feeling pretty good, still has some stomach issues from the last chemo drug, but compared to a couple of weeks ago, he is doing great!
Ryan will take this week off from treatments and should be able to get a full week of school in. I think the last time he was able to attend a full week of school was close
to 2 months ago.
On Monday (3/28), Ryan will begin the first of what should be his last six rounds chemo sessions and will continue every 21 days until July.
Over the last 6 weeks, the doctors removed the chemo drug that causes the hair to fall out, therefore, Ryan is starting to get his hair back. The bummer is that when he goes back on the regular chemo treatments, they will be adding back that drug that will more than likely cause him to loose that hair again!
We should find out sometime this week when they are planning on running his next set of scans - we are thinking sometime around the first week of April. If the chemo / radiation treatments went as planned - Ryan's tumor in the bladder/prostate area should be gone (as well as the lymph nodes)leaving the tumor on his spine (T10) as the last tumor. That will be removed via radiation sometime in the near future - no date scheduled yet. The doctors want to give his body some time off to recover from these radiation treatments before they start again.
They will also make plans on removing the super pubic cathater from his stomach. Ryan is a little nervous about that, but as long as there is no debrise left in his bladder, he should do just fine.
As always - thank you for the prayers and support to Ryan and the rest of the Shuman family!!!
Wednesday, March 9, 2005 8:55 PM CST
What a great couple of days for Ryan.
On Sunday, Ryan and Suzi were manning the phones for the KS95 Radiothon for Kids while Alica, Jessica, and I were in the mail room. They raised over 1 million dollars over the 3 days. How great is that!!
Ryan was told that he will still have one additional week of chemo / radiation making it a total of 6 weeks (28 session in total). So far so good. He is going in tomorrow for another blood transfussion (had one on Monday too) to keep his counts up.
We were also given some great news - they are going to discontinue the radiation on the lymph nodes today. The reason is that the doctors said that they (nodes) are clear.
Actually, in December, we were told that the scans in December were good, we just didn't know how good they really were. They were hesitant to get to excited because Ryan was only a third of they way through his treatments.
Today the doctors showed us the detailed results from the scans in December and all of the tumors and lymph nodes that was on the September scans when he was diagnosed were clear. The only signs of cancer left in Ryan was the tumor above the prostate (which had shrunk to a size of a quarter) and the tumor on the spine.
The purpose of the radiation is designed to completely eliminate the tumor above the prostate and to make sure that there were no cancer cells left in the lymph nodes.
As of today, we are happy to report that everything is going as planned and his doctor said that she couldn't ask for better results. Ryan will have additional radiation on his tumor on the spine in a few weeks and we were told that it won't take much to get rid of that since it is on the outside of his spine.
On March 28, Ryan will start what should be his final phase of treatment. This will consist of six rounds of chemo treatments. The purpose of these treatments is to make sure that there are no cancer cells still hanging around his body. As of now, the schedule calls for him to complete his chemo on July 11 and remove the port catheter in his check shortly after that.
It also sounds like the plans are to remove the super pubic catheter from his stomach within the next 3 to 4 weeks. Ryan is counting down the days!
The doctors told us that they couldn't be happier with Ryan's results! We can now say that we can see the light at the end of the tunnel.
Thanks for the continued support and prayers - we know the prayters are being answered!
God bless!
Saturday, March 5, 2005 10:43 AM CST
Ryan finished his fourth week out of five. During the fourth week of treatment, they decided not to give Ryan the chemo drug due to the difficult time that Ryan was having.
Good news was that it made a difference, his stomach is much better and was able to attend school on Wednesday and made it to the High School tournament on Friday and plans on attending some of the games again today.
The bad news is that Ryan will have the chemo drug given to him this week and next week too (to make up for last week). Ryan is ok with it - he knows that it is a small price to pay for what the drug will do for him.
We have been listening to the KS95 for Kids Radiotion since it kicked off on Thursday and I have to say that there are some wonderful stories being told. We were able to hear Ryan's story twice yesterday and they said that they will be running multiple times a day thoughout the radiotion.
If you would like to learn more about the about the KS95 for Kids or to see Ryan's story - visit the following link http://www.ks95.com/radiothon/index.htm.
Ryan will be working at the ratiothon at Ridgedale on Sunday from 4:00 - 6:30 pm - feel free to stop by and say "HI".
Sunday, February 27, 2005 8:33 PM CST
As Ryan gets set for his fourth week of his five week of chemo / radiation schedule, he still is working through his bad diarrhea and stomach aches. In speaking with the doctors, it looks like the radiation may be contributing to his stomachaches as the chemo is. One thing for sure is that the radiation is very taxing on the body – given the chance; Ryan would sleep most of the day as well as the night.
Last Thursday, we found out that this five-week chemo / radiation is just for the mid-section of Ryan’s body (bladder/prostate, and hip area) and not the chest and back area.
They will start another radiation regiment for that area in a few weeks after Ryan has recovered from this round. Don’t know how many sessions of radiation they are talking about, hopefully not 5 weeks, however, even though Ryan is disappointed to here that news, he is taking that “bring-it-on” type of attitude that he has had since the beginning.
Ryan missed last week of school and we are anticipating that he will be out for most of this week as well.
We were watching the Academy Awards this evening and to our surprise, we saw the KS95 Radio-a-thon commercial with both Ryan and Suzi – if you see this commercial in the future, Ryan and Suzi are in the back on the right side of the large group.
The KS95 Radio-a-thon will run this Thursday through Sunday. This year, KS95 will be set up at Ridgedale and if you are in the neighborhood on Sunday, please stop bye and say “hi”. Feel free to visit the radio-a-thon at www.KS95.com.
Also, Ryan television interview with WCCO will be aired TODAY (2/28)at 5:00 pm.
Thanks for the support and prayers!
Monday, February 21, 2005 8:58 PM CST
Well as everyone knows, Ryan started his five week chemo / radiation treatment program 2 weeks ago. The protocol was to change his chemo drugs by removing two of the standard drugs that he had been taking and add a new one – Irinotecan (spelling?), which has recently proven to be very effective with Ryan’s type of cancer.
He would take this new drug along with his radiation every day for two weeks, then week three with radiation only, followed by two weeks of chemo / radiation. I remember the doctors telling me that he will need that one-week break from that drug to help his body recover from this drug.
Well, here we thought Ryan was going to breeze through this chemo / radiation combo with flying colors like he had with the previous chemo sessions, however, on Sunday, we were proven wrong – that new drug caught up to him.
One of the major side effects of this drug is diarrhea and for Ryan, it hit him pretty hard – severe enough to cause internal bleeding.
The end result was having to admit Ryan in to the hospital Sunday afternoon to get some stronger medicine to control this along with some IV fluids to get him hydrated.
He is still getting his radiation treatments this week, but thank god, no chemo.
As of this evening, he is starting to feel better, still not a 100%, but I would say he is about 50% better. Ryan also began having some soreness in his left shoulder and the doctors are watching just to make sure that is not a blood clot is the cause of this.
Ryan still remains optimistic that he will be out by Tuesday and with a couple days of rest; he will be able to make it to the hockey game Thursday night.
Also on Thursday, WCCO news is going to do a special report on the new Tomo Therapy radiation machine that Ryan is on. Since Ryan is one of two patients under treatment with this machine, they want to do a report on Ryan, his doctors, and the Tomo machine.
We are not sure when they are going to air that report – we are guessing it will be that Thursday evening – if this is the case, we’ll have to get the VCR going for Ryan plans on being at the Hockey game. We will keep you updated on that.
Thanks again for all of the prayers and support!!
Saturday, February 19, 2005 11:06 PM CST
Two weeks down, three to go of Ryan’s chemo/radiation sessions!
We are hoping this week will be a little better. The new chemo drug that Ryan is on is giving him some terrible stomachaches. Week number three is just radiation only, that will give him one week to rest up his body before he starts the fourth and fifth week of chemo and radiation treatments.
This evening, the Eden Prairie Eagles knocked off Wayzata in the Section 6 semi-finals 6-3, now they play Jefferson for the section 6 championship on Thursday – GO EP!
Today, Ryan asked to get his skates sharpened – I think that is his way saying that he is getting ready to hit the ice soon. He is planning on having his super pubic catheter our after the chemo/radiation is done in three weeks.
Thursday, February 17, 2005 10:40 PM CST
Tonight was Eden Prairie’s Varsity Hockey first sectional playoff. It was a very exciting game, but I’m happy to say the Eagles came out victorious. The final score was 4-2. Before the game Ryan was presented with a framed picture of a varsity game jersery signed by the coaches and players of both the varsity and junior varsity. Ryan has already picked out a spot for it near his second love the pool table. A special thanks goes to the Eden Prairie Hockey Association for all their support.
Ryan’s treatment went well today, it left him quiet exhausted thou. We’re anxious to know how the radiation and the new chemo drug are working, but unfortunately there isn’t really any way to know until we run scans again from head to toe. They usually run the scans two weeks after the treatment is done. So we’ll be anxiously waiting until then, it should be around the week of March 28th.
Please keep Ryan in your prayers and say an extra one for all the children on 5B at the University.
Tuesday, February 15, 2005 2:19 PM CST
Today Ryan and I spent the morning filming a commercial for the upcoming KS95 Radiothon. It’s just a brief commercial that will run in the next few weeks. Early in December Ryan was interviewed (see photo) by Greg and Cheryl for a radio commercial. It was fun to see how much work goes into setting up and filming for commercials.
Be sure to tune to 94.5/KS95 for the kids Radiothon, broadcast March 4-6 from Ridgedale Center. In the past seven years it has raised more than $6.3 million for Children’s Cancer Research Fund and Gillette Children’s Specialty Healthcare. For those of you who would like to make a pledge, you can visit www.KS95.com
Sunday, February 13, 2005 8:18 PM CST
The amazing support just keeps on coming… Last night the Bloomington Hockey Association presented our family with a check to help offset our medical expenses. The association had been collecting money from the “Chuck a Puck” for weeks. A long time friend, Don Cameron, presented to the check. We can’t even begin to thank Don and the entire Bloomington Hockey association for their support. Ryan was quiet moved by their gesture.
The game was symbolic to the fight that Ryan is experiencing with cancer. Both teams came out strong fighting with all they got; each teamed had their struggles and found themselves fighting on reserves. The game resulted in a tied, leaving both teams as a winner. Ryan got together after the game with friends for a post game celebration.
Today Ryan rested most of the day. He woke up not feeling his best, stomache ache mostly. It seemed to subside slightly later this evening.
Tomorrow he will start his second week of radiation/chemo. His sister(Alicia) tried to put it in a positive manner by saying “Ryan just four weeks to go till your done with radiation”. I think that sounds a lot better than dwelling on the fact that it’s still twenty one more times.
Keep those prayers coming our way…
Friday, February 11, 2005 10:27 PM CST
I just wanted to send a quick note of thanks to those of you who have sent well wishes my way. It sure does help carry my spirits when I am down. I also want to especially thank John Millea from the Star and Tribune for the article about me in the sports section of today’s paper.
Today my chemo and radiation went well. I have noticed that I am a lot more tired than I have been before. I even missed dinner last night; anyone who knows me well knows that never happens.
Tomorrow is our final game before sectionals. Hopefully I will see a lot of you at the game in Bloomington.
Keep the well wishes and prayers coming my way…
Thursday, February 10, 2005 10:00 PM CST
It’s day three of radiation, twenty-two to go but who’s counting. Ryan seems to be a little more tired this evening than he has the past two nights. He fell asleep on the couch shortly after 5:30 PM; he even managed to sleep through dinner.
Bob arrived home tonight with roses in hand, he must have known how emotional this week has been for me. It’s nice to have him home for moral support.
One more day of radiation for Ryan and than he has a two-day break. Saturday the Bloomington Hockey Association is honoring Ryan at their Varsity Hockey Game vs. Eden Prairie. It’s the final game of the season before sectionals. The Bloomington Hockey Association has been running a fundraiser to help off set Ryan’s medical bills. Again the outpouring of support overwhelms us.
Please continue to send those prayers our way.
Thursday, February 10, 2005 8:19 AM CST
Good morning… That’s an understatement at the Shuman House. Ryan is on his third day of radiation/chemo, and he is doing very well! Besides a slight stomache ache and soreness around the site of his super pubic catheter, he’s feeling fine.
As planned he started chemo on Monday. The new drug that they gave Ryan didn’t cause him much discomfort. Tuesday was his first day of radiation and chemo together. I think I worried more than Ryan did about this day. I found myself through out the day watching the clock in anticipation to his scheduled radiation.
Ryan is the first pediatric patient to receive his radiation by Tomo Therapy. We feel quiet blessed to have the opportunity. The scan itself only took 8 minuets, but the set up took close to forty minuets. Ryan has to lay in a molded cast of his body the entire time. It’s a long process but I’m sure as the techs become more familiar with the Tomo the process will become more stream lined.
Wednesday, Ryan had his second day of treatment. We were kept company by a journalist from the Star and Tribune who will be writing an article on Ryan in Friday’s paper this week. We had a nice visit with our Pastor later that evening. He was anxious to see how Ryan was doing. We shared communion together and prayed for healing.
Ryan is at school this morning; I’ll pick him up at 1:00 PM for his treatment.
I just wanted to send out a special thank you to our neighbors who have time and time again come to our rescue with rides, meals and emotional support. Bob is out of town on business and again our neighbors have been there without questions.
Thank You…
Saturday, February 5, 2005 10:25 PM CST
Here we are the eve of the Super Bowl. If all goes well Ryan will spend it with friends, downing wings.
Ryan ended up in the ER of Fairview University Friday evening. He wasn’t feeling well Friday morning, sore throat and cold like symptoms. By the afternoon Ryan had a temperature of 101.5. After a call to his doctor we were told an ER visit was in his near future. After five hours of a battery of tests and x-rays, they gave Ryan some antibiotic through his port. Unfortunately they also requested for Ryan to come back to ER Saturday for a follow up and another dose of antibiotic. As of now he is feeling a little better, his fever has broke but he still has a very sore throat and clogged up nose. So as for now his Super Bowl plans are on hold.
Ryan starts Chemo/Radiation this week. I think he’s somewhat anxious to get started. He looks at it as just one step closer to being cancer free. He’s almost at his six-month marker since being diagnosed with cancer. Ironically the six-month mark lands within days of the KS95 radioathon. Ryan was asked to participate in the radioathon this year, Ryan and Bob and I recorded a commercial in December with Cheryl and Greg from the morning show. I believe the radioathon will be held at the Ridgedale mall, March 4-6th. We were pretty exhausted when we recorded the commercial; we had just finished Ryan’s scans and had been given the good news of his results. We were both physically and mentally drained the day of the taping. So don’t expect too much from our big debut.
Thanks for all your emails, cards and well wishes. I know they really carry Ryan through of those partly cloudy days.
Saturday, January 29, 2005 11:10 PM CST
Here’s a quick update on Ryan… The past few days have gone relatively well for Ryan. He has had some discomfort, but as always Ryan rarely complains.
He has started a new quarter at school. He was a little disappointed that he couldn’t take biology; it would be too difficult for him to keep up with the labs. He really was bummed when he heard they were discussing stem cells.
As for time behind the wheel, Ryan has become our errand boy. Today we even sent him to pick up a freezer. He didn’t seem to mind as long as he could drive.
We received Ryan’s calendar for his up coming radiation schedule. Ryan will begin radiation on February 7th. The radiation will take place five days a week for five consecutive weeks. He will continue to receive chemo but they will be removing two drugs in replace it with a new drug. The drugs they are removing wouldn’t be affective with the combination of radiation. Apparently the new drug that they will be using is actually the newest and most affective in fighting Rhabdomyosarcoma. We feel quiet lucky to have such a great team at the U of M. I think were anxious but nervous about what holds ahead of us. But we’re putting our trust in the lord and knowing that comforts us. Please keep Ryan and our family in your prayers…
Saturday, January 22, 2005 10:29 PM CST
WELCOME HOME !!! Ryan came home this afternoon, just in time for the Varsity Hockey Game. Even though we have numerous friends on the Rosemount team, we are happy to say we won 5-1.
Ryan had a very quiet, uneventful visit to the hospital this round. I think he’s happy to be home, in his own bed. The phones have been ringing off the hook with friends touching base.
He’ll have some time off now until his next round. His next scheduled chemo is February 7th. Still no date set for radiation.
Thanks for all the cards, congratulating him on getting his drivers license. Now that he is home, he plans on getting a little time behind the wheel.
Thursday, January 20, 2005 10:10 PM CST
As the saying goes… No news is good news. Ryan is doing well, bored thou. He’s mastered every playstation 2 games he owns. The hospital had a few he hadn’t played before, so for now he is slightly entertained.
Ryan had an unexpected visitor today. Elmo and Zoey from Sesame Street stopped by. If that wasn’t embarrassing enough, Channel 4 and 11 took pictures too. Poor Ryan had to answer questions from them and had photos taken together. We had to sign a press release, so who knows where these photos will show up (ha, ha, ha).
It is still looking like Ryan should be home Saturday evening, just in time for the Varsity Hockey Game.
Keep the Faith…
Tuesday, January 18, 2005 8:40 PM CST
Ryan is officially a licensed driver! Now all he needs besides time to drive is his own vehicle. The nurses played a trick on Ryan when he arrived for chemo today. The staged a call from “Wally Mc Carthy”. They told Ryan the car lot was on the phone wanting to know what color hummer Ryan would like out front. Ryan was skeptical but chose “silver”. They said that they were out of silver so than Ryan chose "red". Unfortunately it was only a joke, he's stuck with the family car for now.
So far everything is going smoothly, Ryan plans to be out by Saturday. He’s up for visitors for those who can. Ryan is really lucky this time he has a two-bedroom suite, actually it’s a room with two beds. The nurses have assured Ryan he’ll most likely be alone thou.
Thanks for all the cards and well wishes.
Saturday, January 15, 2005 10:06 PM CST
Here’s the latest on Ryan… Thursday, the hospital informed Ryan his bone and stem count was at 104. Their concern was that perhaps during the freezing process, Ryan could loose some of his harvest. So the decision was made for Ryan to continue with one more additional day of draws. At this point Ryan’s arms were so raw from the past three days, but as always Ryan put on his game face and agreed to the additional draw. Bob spent the majority of the day with Ryan at the clinic. While Ryan is receiving the draw, he can’t move either of his arms. There’s only so much television one can watch. He has to be fed by hand. I think in a way Ryan might somewhat enjoy it thou, being waited on hand and foot (just kidding). Ryan’s draws were finally finished around 3:30PM. The plan was then to head directly upstairs to the oncology floor. Once he arrived there, Ryan was told that their had been a miscommunication between the BMT Clinic and Oncology. First Ryan actually had a great draw on Wednesday, his final count for that day alone was 110. Thursday’s draw was unnecessary after all. The second confusion was that Ryan wouldn’t be able to start his 6th round of chemo for forty-eight hours. His blood work was so off due to the excessive amounts of GCSF that had been given to him for the past week. It would be unsafe for Ryan to start chemo. The heightened levels could alter the chemo’s effectiveness. We were quiet disappointed to learn of all the confusion that had taken place, especially since we had questioned the heightened GCSF levels earlier in the week. The answered we received was “no” it wouldn’t have any concern. The main concern we had besides feeling bad that Ryan had to endure another draw procedure, was that this delay would again set his protocol back an additional four days. Between this conflict and the harvest Ryan will be fourteen days behind with his protocol. The doctor reassured us that Ryan is doing so well that he is actually ahead of schedule. Nonetheless we are still concerned. The plan is that Ryan will now start chemo on Tuesday the 18th. Two positive things did come out of all this, first Ryan was able to be at home for his oldest sisters Alicia’s 15th birthday and he will be able to take his drivers test Tuesday morning before he heads down to the University for his five day chemo. Ryan was also able to get one day in for school also, which he so enjoys. As always lots of excite here at the Shuman’s.
Wednesday, January 12, 2005 10:19 PM CST
Today was another long and boring day at the bone and stem donor center. Our day began bright and early. Ryan had a larger count from his last draw, Monday’s total was 33 and Tuesday’s results were 41. Hopefully today’s draw will be at least 26, 100 is the goal. If he’s short he’ll need to do another day of draws tomorrow. Unfortunately this is delaying his chemo. Tomorrow we’ll pack with hopes of starting chemo. Bob will be back from his business trip late this evening, so perhaps the delay is good.
I’ll close with a quote I found written in my fathers worn bible.
Please give me strength and courage, Lord,
To bear what I must bear,
And nudge me when my faith is weak
To remind me You are there.
Give me hope for my tomorrows,
Tell me life will still go on,
Show me, Lord, that all this darkness
Will be followed by dawn.
You have led me through so many things,
You’ve pulled me through before,
Hold me up, Lord,
Till I’m through this
And I am strong once more.
I think all of us need that nudge sometimes; Ryan’s latest journey through life has been a nice reminder that the Lord is always there.
“Hold me up, Lord.”
Tuesday, January 11, 2005 9:36 PM CST
First let me apologize for not updating Ryan’s site sooner. Lately days have blended together and I find myself checking the calendar to verify what day it actually is. So here is my attempt at catching everyone up to speed.
Early last week the decision was finalized for Ryan to go ahead with the bone and stem harvest. His oncologist and everyone else on his medical team were in complete agreement that this would be a very good procedure for Ryan. By harvesting Ryan’s bone/stem marrow, Ryan would be able to store it for quiet sometime in case he may need it. The concern was once Ryan began radiation his marrow would be damaged/destroyed. This gives Ryan a safety net of sorts in case down the line he endures a cancer that affects his marrow.
Monday/January 10th- Ryan started his first day of his harvest. He began receiving increased dosages of GSCF (a drug to increase blood cells). They also changed him from coumadin to an injection of Lovenox. Lovenox helps prevents clots in blood vessels. Ryan didn’t appreciate the injections in his stomache, nor did I enjoy having to give them. His first day of harvest went well overall. He didn’t get as much stems cells, as they would have liked to see thou. The procedure took about six hours. Ryan rested for the majority of the time.
Tuesday/January 11th- today is day two of our three-day harvest. We are all keeping our fingers crossed that today bring a higher count. Ryan was quiet tired throughout the procedure.
This evening Ryan attended both the Eden Prairie JV/Varsity Hockey Games. The hockey players honored their favorite teachers at the game. Ryan chose his first and second grade teacher Mrs. Holman.
Tomorrow Ryan will finish up with his third day of bone/stem harvest. Ryan will start his sixth round of chemo that evening. This round last for five days, radiation will then start at the end of January. His radiation will run for five weeks, twenty-five treatments long. Please keep us in your prayers; we know the power of prayer is so strong. We can endure anything with God.
Saturday, January 1, 2005 10:46 PM CST
Happy New Year !!!
Hopefully 2005 brings all who read this update all you wished for. I again like most years made numerous New Years Resolutions. One I plan to defiantly fulfill is to make sure I get more involved in volunteer opportunities. Our entire family actually plans to make this a goal. Ryan would like to work more with kids at hockey camps or at the hospital. Generally my resolutions last a few days, but this year I plan to really make an effort to keep.
Our new puppy “Dakota” is adjusting well. Simon, our cat, seems to have taken to him. They have become good friends, exchanging kisses and sharing each other’s food. The vet gave Dakota a clean bill of health. He weighed in at 3lbs (See photo).
There has been a slight change in Ryan’s schedule of care. Ryan will go in on the fourth of January for a consultation on his bone and stem cell draw. He’ll also meet with Radiation to get a “blueprint” with a CT scan for his upcoming radiation. They’ll begin giving Ryan a double dose of medication (GCSF) to boost his cells for about seven days, and then they will do the bone marrow and stem cell harvest. Were hoping they will be able to take the draws by an I.V. in the arm. The other alternative is by a surgical procedure where another type of port would be placed on the opposite side of Ryan’s chest. They’ll make this determination at our consultation on the fourth, please keep us in your prayers. The harvest takes 1-3 days, depending on how long it takes to get the adequate amount. Ryan will return to his chemo protocol immediately after the harvest. This chemo will be the five-day regimen. Radiation will start sometime after that. So please keep us in prayers for we have a long few weeks ahead of us.
In closing I would like to make a special word of thanks to the many neighbors, friends and family members who have been there for our family for support. I know so many of you want to know what else you can do for us. What you don’t realize is that your continued support and prayers are more than we could ever ask for. Thank you …
Tuesday, December 28, 2004 11:13 PM CST
Merry Christmas and Happy New Year
We are hoping this update finds you all well and enjoying the holidays. This Christmas is was very special for our family. We not only celebrated the birth of Jesus but our early gift of positive results from Ryan’s scans. No gift purchased could be as precious. Ryan continues to feel pretty good, with the exception of bone and urethra pain. Ryan doesn’t usually complain so it’s always tough for us to know how he is exactly feeling.
We spent majority of the past few days with family and friends. Ryan has also managed to get in a few hockey games. He attended the Gopher Dodge Holiday Classic. After the game Ryan was able to go down to the Gopher locker with a gopher player Tyler Hirsh. Tyler has been keeping in contact with Ryan since his visit in the fall to the hospital. Not only is he a talented hockey player but a very caring young man. His comment to us after the game was that Ryan was an inspiration to him. Ryan thinks the same of Tyler.
We finally were able to spend some much needed family time together, the past three days we the World Junior Championships in North Dakota. Not only did we see amazing talented players but also ended up with an extra passenger. The kids talked us into a new addition to our family, a puppy. He has been named Dakota, with a nickname of Coty. We have really been enjoying his company.
Thanks to all who sent cards and emails for the holidays. Ryan goes back in for round his sixth round of chemo on the 4th of January.
Sunday, December 19, 2004 3:08 PM CST
Happy Holidays…
I just wanted to thank everyone for the birthday wishes. It’s hard to believe it’s only 6 days till Christmas. I’ve barely made a dent at the malls for gifts. I plan on going again this week to finish up.
My 5th round of chemo went pretty good. I am still having bone pain and I am more tired than normal.
I am looking forward to the Holiday Classic (Edina) Tournament. I’ll be there rooting on my team. We did really well last night against Chaska, winning with a score of 6-1. I can’t wait until I can get back on the ice. Saturday, I helped out at my dad’s new facility “Hockey Performance Academy” was fun stick handling with the players.
Thanks again for your continued support and prayers…They’re working !!!
Ryan
Wednesday, December 15, 2004 7:42 AM CST
It's day three of Ryan's Fifth round of chemo, all is going well.
He came to Fairview Univeristy on Monday, his day started with a skeleton scan and an ultra sound of his kidneys. The scan is for his upcoming radiation treatments, we ran the ultra sound to make sure the bacteria infection in his bladder hadn't spread into his kidneys. So far it looks like it hasn't. They started chemo late that evening.
Tuesday Ryan slept a good part of the day, he continued to receive chemo.
Today Ryan will wrap up this round of his chemo, it should be done late this evening.
Unfortunetly he will have to stay an additional day for his pet scan. He's hoping to be home by dinner on Thursday.
Please keep up the prayers and thank you for all the the "Happy Birthday" wishes. Ryan said it really was the best birthday ever.
Sunday, December 12, 2004 9:45 PM CST
Happy Birthday 16th Ryan !!!
Today Ryan turns 16 years old today and not a minuet too soon for him. He has his last behind the wheel coming up at the end of December, then plans to take his drivers license in January.
Ryan celebrated with friends and family for the past three days. It started on Friday; Ryan had a surprise party with about twenty of his friends. There was lots of food and lots of poker and pool. That evening we attended the new professional La Crosse game at the Excel Center with Ryan’s friend Mandy and her father. Saturday, Ryan had an unexpected early birthday gift from a family who had bid on Allanis Morissette’s personal signed guitar. The Cook family had asked Alanis whom they would like the guitar to go to, Allanis chose Ryan. Ryan was so thrilled to not only get the guitar but to meet this amazing family (see photo). Later that afternoon, our neighbor from down the street came with a card for Ryan’s birthday. In the card was some money that our neighbor’s place of business had collected for our family. We were so moved by their kindness. The money will come in handy with the expense of parking and the on going medical expenses. Sunday, Ryan celebrated with family for his birthday dinner at Chevy’s Restaurant. What a great 16th birthday, Ryan was so touched by all the emails, cards and gifts that many of you sent.
Tomorrow Ryan starts his fifth round of chemo. This one is shorter in duration but tends to ware him down more. If all goes well he should be home by Thursday. They will most likely run a skeleton scan and a pet scan while he’s there. These scans will give Dr. Dusenbery the road map for Ryan’s upcoming radiation in January. As of now it looks like Ryan will indeed get to have the Tomo Therapy for his radiation. We will be harvesting his marrow and stem cells during this visit to the University for possible use in the future. Overall Ryan is feeling quiet well, he seems a little tired but still remains positive.
He really enjoyed getting to go to school as much as he has in the past few weeks. He’s managing to still keep up with schoolwork with the help of his tutor John, who has definitely been a Godsend.
We can’t even begin to thank you all for all of the prayers and support that you continue to give our family. I know that so many of you ask, “what can we do” whenever we see you. What you don’t know is that just the acknowledgement that you are aware of our situation and that you are praying for us is more than we could ever ask for. The random acts of kindness continue daily. Thank you for the neighbors that left the Christmas tree on our step and to the friends and families who have offered to run errands and take care of the kids so Bob and I can spend some time together. You all mean so much to our family, Thank you.
Tuesday, December 7, 2004 11:02 PM CST
As many of you are aware that today we met with Ryan’s medical team. The meeting included his oncologist Dr. Joe Neglia, radiologist Dr. Kathryn Dusenbery and urologist Dr. Leo Fung. Our morning started with Dr. Neglia, where we received wonderful news that the largest tumor located near the prostate had shrunk significantly. The original size of that tumor was similar in size of softball, now it’s measuring closer to the size of a quarter. Dr. Neglia seemed very happy with the results of the chemotherapy drugs Ryan has been receiving. The additional tumors that were located within the bones of his hip, pelvic and sternum are still present but haven’t grown or hadn’t spread into any other locations. The limp nodes that were enlarged previously have shrunk down enough to not be present when physically examined, they did still show on the scans but to touch have gone down in size. There was one “hot spot” on his recent scan at the base of his skull that hadn’t been on previous scans. Dr. Neglia didn’t seem overly concerned but none the less recommended Ryan have an x-ray of his skull. So from Dr. Neglia’s point of view, Ryan seems to be on the right track.
Our next visit was with Dr. Dusenbery just after lunch. Dr. Dusenbery had already viewed our scans and had spoke with Dr. Neglia and was also very impressed with Ryan’s progress. Ryan was so exhausted that he slept through most of our visit with her. Dr. Dusenbery felt that Ryan’s best choice would be to continue with our chemo protocol and to add radiation to his calendar. Dr. Dusenbery brought us to a new area that was being constructed for a new state of the art radiation machine. It’s called Tomotherapy, the University is only one out of a dozen in the nation. The Tomotherapy allows the radiologist to run a CT and radiate at the same time making it much more precise and limiting damage to other surrounding organs. The Tomo at the University is slotted to be available for use starting in January. If all goes as planned Ryan may be one of the first pediatric oncology patients to benefit from it.
Our last visit was with Dr. Fung at the end of the day. Dr. Fung felt that at this point surgery was still too risky and unnecessary. He felt that radiation was our best choice. Surgical removal of any of the tumor at this point would involve a lot of reconstruction surgery.
Thursday of this week will be the day that the three Doctors make their final decision, but as far as it stands now, we will most likely start with chemo on the 13th and start our five-week radiation treatment as of the first of the year.
We are so pleased with Ryan’s results and know that without our faith and all of your thoughts and prayers our news could have been different.
Tonight at Ryan’s Hockey game against Rosemount, Landon Vath, Jim Hamilton (former coaches and parents of 2 Rosemount players), and the Rosemount High School Hockey Team presented Ryan with a gift certificate. Ryan played with six of Rosemount’s players previously as well as the 2 coaches. We have found ourselves becoming very close to numerous families on this team and were very touched by their generosity. It’s funny how hockey has become an extension of our family, even prior to Ryan’s illness had we had such a close bond with so many.
Please keep up all your prayers…
Suzi and Bob
Monday, December 6, 2004 10:35 PM CST
Ryan had a jam packed weekend. Saturday,Ryan celebrated his little cousin Justin's 4th birthday. He also had his first varsity home game against Kennedy,Eden Prairie won 5-0. Sunday we had dinner with hockey friends from Rosemount. Ryan attended a full day of school today. He still getting some additional tutoring to help him stay current. Tommorrow we meet with Ryan's medical team in regards to his scans that he had last week. I think were anxious but somewhat hesitant to find out the results. We've decided that it's really out of our hands, we are leaving it in Gods hands. Please keep us in your prayers...
Wednesday, December 1, 2004 4:27 PM CST
Last night Ryan attended the Eden Prairie Varsity Hockey Game. The team had a rough night, but nonetheless Ryan enjoyed being able to be on the bench supporting his friends. All the excitement and perhaps a little anxiety of his upcoming scans kept him from getting a full night sleep. Tonight Ryan plans to relax and get in some playstation 2, fishing has become his game of choice. As many of you know, Ryan is scheduled for scans tomorrow. His first scan is at 7:30am and last of the four to start at 12:00pm. He’ll be having a bone scan, MRI of his pelvis and a CT of his chest, stomache and pelvis. The results won’t be available until the 7th. Please keep us in your prayers, perhaps while your having breakfast and again at lunch throw in an extra prayer for Ryan and our family. We also would ask that you pray for the Lord to give the physicians and technologist the knowledge to read his scans successfully. We have received lots of incredible verses and prayers but one that was received by one of our relatives has become our choice of prayer for bedtime is…
God who made the world,
create in me a new body
renewed in strength,
vigorous and sound.
Remove from this body
any blemish,
that would keep it from being
the perfect body.
Cast the beam from my eyes
that I may be healed now.
I know there is no disease,
no illness,
no blemish,
that you can not set straight.
To limit God
is an error of my mind.
Amen
Sunday, November 28, 2004
Today Ryan had a full day; it started off by attending church and ended with dinner with family friends. Today the verse on the cover of the church bulletin was, Mathew 24:42. The first sentence read, [Jesus said to the disciples,]“About that day and hour no one knows, neither the angels of heaven, nor the Son, but only the Father.” Once we got home Ryan and I had a discussion to how we each interpreted this. Ryan’s analogy is that we need to be living as Christians every day. Not be on “cruise control” as our Pastor Rod Anderson said. Isn’t that so true for most of us, just cruising on hold until a bump in the road comes along and we find ourselves going for the break or struggling to regain control of the car. This situation that we are facing with Ryan has forced us as a family to slow down and regain control. We have come to a conclusion that one must crawl before they can walk. In Ryan’s case he as a baby never crawled, he began to walk at nine months old. Now he is crawling, taking everything in stride.
Sunday, November 28, 2004 9:56 PM CST
Today Ryan had a full day; it started off by attending church and ended with dinner with family friends. Today the verse on the cover of the church bulletin was, Mathew 24:42. The first sentence read, [Jesus said to the disciples,]“About that day and hour no one knows, neither the angels of heaven, nor the Son, but only the Father.” Once we got home Ryan and I had a discussion to how we each interpreted this. Ryan’s analogy is that we need to be living as Christians every day. Not be on “cruise control” as our Pastor Rod Anderson said. Isn’t that so true for most of us, just cruising on hold until a bump in the road comes along and we find ourselves going for the break or struggling to regain control of the car. This situation that we are facing with Ryan has forced us as a family to slow down and regain control. We have come to a conclusion that one must crawl before they can walk. In Ryan’s case he as a baby never crawled, he began to walk at nine months old. Now he is crawling, taking everything in stride.
Saturday, November 27, 2004 7:28 AM CST
Good morning… If you’re wondering why this entry is so early on a Saturday morning, well we are back to our typical hockey schedule. Ryan had an early hockey game down at Mariucci arena. The Eden Prairie Varsity hockey is taking on Holly Angels. Ryan was so excited to get to go, he has friends on both teams but is of course partial to EP.
Tonight our family is lucky enough to have scored some tickets for the Gopher Hockey Game. I can’t even remember the last time we all were able to attend a college game together, we are so excited. First our neighbors, the Weisners offered to take Ryan and then the hospital called with four additional tickets. The girls are even excited about going tonight especially because; our neighbor’s daughter Alyssa Weisener is a Gopher cheerleader for hockey. Alyssa has been very supportive to Ryan, she arranged for one of the Gopher players by the name of Tyler Hirsh to stop by and visit Ryan. Alyssa also managed to have a stick signed by the team.
Ryan received a card that has helped summed up the meaning of this journey well. The writer of the card wrote “I know that this is a hard time for you and words can only do so much, but you need to understand your purpose in this. This illness is only a bump in the road for greater things to come”. How true of a statement this is, it makes us all think about challenges we have faced in the past and how different meanings have resulted from them. Greater things do lie ahead for Ryan.
In Christ… The Shuman’s
Thursday, November 25, 2004 6:53 AM CST
Happy Thanksgiving to all… What a beautiful day for Thanksgiving. The sun is out and it’s not too cold, and everyone is well.
Typical Shuman holiday protocol, lots of activity at our house, out of town friends has been calling and visiting our family while in town. It’s been so much fun especially seeing all the neighborhood kids back from college. They came with gifts from colleges, Iowa and Minnesota to name a few.
We’re having dinner at my brothers house in Shakopee, both the Shuman’s and the Orosz immediate family will be there. Each year Ryan traditionally weighs himself before Thanksgiving dinner and after. This year was no different; Ryan weighed 153 lbs prior to the feast and 157 lbs after. It wasn’t the highest weight gain as he has had in the past, but Ryan seemed satisfied with it.
Each year we ask ourselves “what are we thankful for” this year had different a response. We typically are thankful for family and friends, and of course that hasn’t changed. What has changed is how we look at life and all that it holds, we know without the continuous support from our family and our friends this Thanksgiving would have been different than the norm. We’re especially thankful for the medical support staff that has become part of family for the past eleven weeks, for the strangers who have reached out to our family and to the support we have received through the Eden Prairie school district. But most of all this year we’re thankful for life…
LiveSTRONG…
The Shuman’s
Tuesday, November 23, 2004 10:54 PM CST
Ryan has been home, relaxing and recovering from his fourth round of chemo.
They've set his dates to be scanned for December 2nd, and then a conferrence on December 7th with his oncologist (Dr. Neglia), and urologist (Dr. Fung) and Dr. Dusenbery the department head of radiation oncology. They'll go over his results and make a determination to continue with just chemo or try radiation and or to try and surgicaly remove his largest tumor above his bladder.
Please keep us in your thoughts and prayers. I think Ryan is a little nervous about the scans, he really needs to keep his positive attitude. His friends continue to be such a great support with visits, calls.
Tommorrow Ryan has his first behind the wheel, one step closer to getting his drivers license. He hasn't been driving much since August, so a word of advice stay off the roads tomorrow (just kidding). LiveSTRONG...
Sunday, November 21, 2004 10:43 AM CST
As Ryan heads in to day four of his fouth round of chemo treatments, he continues to do very well and is experiencing virtually no side effects that typically comes with chemo - which is awsome!
He entered the hospital with hives (believed to be an alergic reation to something he ate) and a staph infection which is under control. As of yesterday, the hives were gone, however, he woke up this morning to have the hives back. The staff was quick to respond and is feeling better already.
Ryan is looking forward to getting home, heading back to school, and to the rink with the HS team (depending on his counts). Even though he is unable to play, he enjoys the opportunity to spend time at the rink with his friends.
Even though Ryan is able to be at the rink with his friends, he was saying that it has been very difficult to watch and not play. He feels fortunate greatful that he is still part of the team, however, this is Ryan's first year that he has not played since he was 4 years old.
He is hopefull that they can remove the catheter from his stomach some time in December which would allow him to put on the skates and skate around, stickhandle, and shoot (when he is feeling up to it). As he put it yesterday -"that will be my first step to my come back for next year".
We continue to receive prayers and support and we appreciate it so much - we know it is working!!
Thank you and god bless!
Friday, November 19, 2004 6:04 PM CST
Day Two of Chemo and all is going well. Ryan’s hives have gone down and the swelling is starting to decrease in his face, hands and feet. The results came back from his culture of his catheter site and it did turn out to be a staph infection. They are continuing to treat him with antibiotics.
He spent majority of the day playing Playstation, which is beginning to get old I think. Tonight he is planning on having a visitor and watching the Gopher Hockey Game on T.V.
Ryan is starting to realize that he has to miss out on some regular day-to-day things that he has always enjoyed, like missing the pictures for the for the high school Hockey team. Small things like this have come up recently that have been somewhat frustrating to him, but Ryan knows what the most important goal is to continue to get better.
Keep the faith…
Visitors: Green/Call First * He is a typical teenager, he sleeps until noon generaly.
Thursday, November 18, 2004 2:19 PM CST
It’s hard to believe that it has been ten weeks as of yesterday since we began this journey. Ryan is back at Fairview University for his fourth round of chemo. Since he left from his last round of chemo, he managed to make two unscheduled visits to the Masonic Cancer Clinic. The first was as we mentioned before as confusion on one of his medications and the other was as recent as yesterday. Ryan managed to break out in severe hives head to toe. The doctors are not quite sure what would have caused such a reaction; they took many cultures of the site of his super pubic catheter, but no results yet. Their plans are to still proceed with his chemo. Ryan is so swollen with fluid that he was unable to even walk into the hospital. They are treating him with Benadryl, which will help with the severe itching.
Our family just wanted to thank you all for your continued support through e-mails, visits and cards. The response we got from Ryan’s recent article in the EP News was overwhelming. We are happy to say we have met another local family that had a son who also went through Rhabdomyosarcoma eight years ago, and is Cancer free today !!! I plan to get together in the next week with his mother to exchange hugs.
Each time we come back for our treatments here, we are moved to continue to fight for a Cancer free world. We have met so many people who have been touched by the grips of this disease; it’s heart breaking to see how many have been. Ryan is encouraged by the efforts being made throughout the country thou and is keeping the hope.
Please continue to keep our family in your thoughts and prayers.
Wednesday, November 10, 2004 8:59 PM CST
Let me start off by first apologizing for not keeping up with this web site, we know so many of you check on Ryan’s status daily. The good news as the saying goes “No news is good news”. Ryan has been doing very well for the past week. He has managed to get in a few days of school last week and Monday of this week. Tuesday put a slight damper on his plans for school thou, he had a slight mix up on one of his medications. The pharmacy managed to change the milligram size but not inform us. The pill was the same size as previously, instead of taking 4mg of warfarin he had been taking 16mg for the past eight days. The mistake was not an immediate threat but could have been extremely dangerous if Ryan sustained any injury. So an unexpected visit to the Masonic Cancer Clinic Tuesday was the result.
Ryan has been taking it easy for the past three days; his blood counts are extremely low. This is typical for Ryan following chemo, generally 10 – 14 days is when he hits his lowest counts on his blood work. He then generally bounces back relatively quickly. Unfortunately his medication scare did hold him back from a mini trip with Bob to Omaha this week. Bob and Ryan had planned to spend a few days in Omaha and had planned to catch an Omaha Lancers Game. Ryan was so excited to go since he had received a Jersey from the team last month. John Donavan (EP coach & part owner of the Lancers) had even arranged V.I.P. tickets on the glass for both Ryan and Bob. Bob still went since he also had business to follow up on in Omaha, but really missed sharing the experience with Ryan. We plan to make a family trip to see a game in December for Ryan’s birthday.
We continue to receive so much support from family, friends, neighbors and from those we do not even know. We know that all your prayers and good wishes will continue to bring the much-needed support to our family.
Thursday, November 4, 2004 2:34 PM CST
Ryan ended his chemo last Saturday and was able to make it home in time to pass out some candy for Halloween. He managed to make it school for two classes on Tuesday and one class on Wednesday before he had to come home due to cold that he caught.
Ryan’s third chemo treatment was his best to date. I think Ryan put it best “if it wasn’t for the urology problem, chemo would be that bad!” Ryan continues to react very well to his chemo treatments.
We have some great news to report:
As many of you know, when Ryan was diagnosed and leading up to his first treatment, he was experiencing the following:
- 24x7 extreme pain in his back (spine) where the tumor was located.
- 24x7 extreme pain in his left leg due to a enlarged limp node pressing on his nerve,
- Difficulty urinating due to the growth of the main tumor closing off his bladder – in fact, just before he had his first chemo, he could no longer urinate.
Here is the good news:
- Three days after Ryan’s first chemo treatment, the main tumor above his prostate began to break-up and it continues to break-up daily.
- The pain in his back is gone!
- The pain in his leg is gone!
- And the Doctor can no longer feel the enlarged limp nodes in his mid-section that he felt during his initial exam.
Keep in mind that Ryan’s first set of scans since he began his chemo are scheduled for the first part of December. It will be at this point when we find out how well the chemo is working. The Doctor told us that it looks like “Ryan is ahead of the game and I don’t think we would be any happier with what we are seeing!” We couldn’t agree more!
If all goes as planned, Ryan will begin his radiation treatments in December. These treatments will be 5 days a week for 5 consecutive weeks with the goal of eradicating the main tumor above the prostate. Ryan would then continue with his chemo treatments for the balance of his scheduled 40 – 52 week treatment program.
We continue to say thank you for all of the support and prayers – we are confident that the prayers are being answered! Please continue to keep Ryan in your prayers!
God bless and LIVESTRONG!
Saturday, October 30, 2004 9:54 PM CDT
Ryan will end his third chemo treatment this evening and is looking forward to going home tomorrow.
This round of chemo went very well for him, in fact, he was able to put on 4 pounds over the past couple of days. Still trying to gain back that 26 lbs. he lost!
The fact that the Gophers hockey games were on FSN meant that Ryan was able to see both game - this gave him something to look forward to on Friday and this evening.
Ryan also had a special visitor today - Alanis Morrisette (singer) was in town to perform at a cancer fundraiser. While in town, she visited a few patients and Ryan was one the patients she visited for a while. Look for picture/s later this week.
We would like to say thank you to all of you for keeping Ryan in your prayers and providing the support needed to fight this battle.
Thank you again and god bless!!
Friday, October 29, 2004 8:47 PM CDT
Day number two for Ryan's chemo treatment and he is doing great.
Ryan will finish the last of the three drugs tomorrow evening and providing that everything continues to go as they have, they plan to discharge him either late Saturday or Sunday (I would guess Sunday).
This would be great for he is planning on passing out candy to all of the trick-or-treaters.
Not much more to report - as they say - no news is good news!
Visitors = should be fine, just call first (612-273-0329)
Thursday, October 28, 2004 5:18 PM CDT
We arrived today for our third round of chemo. Ryan is feeling stronger than he has before any of his other chemo’s, hopefully this is a good sign.
We met with his doctors this afternoon to decide when they would run scans to see how Ryan is doing. They’ve decided to wait to run his scans until around the first week of December.
Ryan will have his fourth round of chemo on the 18th of November. This round is the longer of the two it last five days long. By the first week of December the chemo should have taken it’s full effect.
I’ve never been a very patient person, Bob would agree with that. I’ve been known to unwrap and rewrap my own Christmas gifts because I couldn’t wait. Part of me isn’t actually in any big hurry; the other part of me just wants to know.
Dr. Negelia, who is the head of the pediatric oncology department, feels things seem to be looking good also. He agrees that the scans will give us a better picture, but that Ryan is actually on the most recent and not even published pediatric protocol out. This protocol will be use for children all over the world that have the same cancer that Ryan has once the National Cancer Society recognizes it, which should be any time. His associate Dr. Wyatt here at the University is the Doctor who has developed this protocol.
So as far as we know between prayer and medical, we are doing the best as we can.
Ryan is able to have visitors at this time. It’s probably best to call for first. Thanks again…
Monday, October 25, 2004 10:35 PM CDT
Ryan made it to school today. He said it felt good to be slightly back to normal and he really enjoyed getting to see his friends. He met with his math tutor this afternoon, he seems to be keeping a steady pace with his class.
After a very active afternoon,he came home and took a long nap. He plans to attend classes again tomorrow.
It looks like tonight will be his last night of running the fluids for his bladder, providing his spasms stay manageable.
He's starting to get nervous about returning to the hospital. Hopefully he will be out in time for Halloween. We packed up some goody bags for the other children down on 5B for trick or treating. Jessica is trying to talk Ryan into being Dr. Evil from Austin Powers, so far Ryan isn't interested.
Sunday, October 24, 2004 9:56 PM CDT
It's almost hard to believe it's almost the end of October. Todays weather felt like late September.
Ryan was able to make it to church this morning. Ironically the sermon was about peoples perspective about illness in times of dismay illness.
This afternoon we had lunch with a family we met at the University, who's (15 year old) son is fighting cancer(Hodgkins) also. He is doing well and is back at school and playing Hockey. It was fun to get together outside of the hospital.
Later this afternoon, Ryan visited with friends. Tomorrow he is planning to get in some school.
He is already not looking forward to going back to the hospital but is keeping a good attitude overall.
Saturday, October 23, 2004 11:03 PM CDT
Saturday was a great day for Ryan. He started out with a visit to the Hockey Performance Academy, then headed to Blaine Super Rink to watch some of the Junior A Showcase.
He felt great all day - he continues to have debris draining from his catheter which is great.
He's planning on attending school next year,and will start with to work with a tutor three days a week to help get him up to speed.
All the home cooked meals we've been receiving must be working. Ryan has put on seven and half pounds since we've been home,we won't say what we as a family have put on thou. Thanks again...
Thursday, October 21, 2004 10:36 PM CDT
As mentioned in yesterdays journal entry, Ryan had been experiencing frequent spasms and we were hoping not to make a trip to the ER.
Well, we ended up going to the U of M Emergency Room last night at 10:00pm. The doctors had to remove the super-pubic catheter and replace it with a new one which was not an easy task.
Ryan had a tissue clot (tumor debris) that was the size of marble that was stuck inside the catheter that caused a blockage.
The Doctor had a difficult time removing the catheter because the base (inside) was extended due to the clot which resulted in the Dr. virtually ripping the catheter out of the stomach.
The Dr. was also able to remove additional tissue clots.
Good news, the Dr. was able to put another new catheter in, stitch it up, and Ryan was able to come home around 4:00am and has had limited spasms since then.
His stomach is still sore, but feeling better.
Tonight Ryan is resting peacefully. His counts have come back up and plans to get together with friends this weekend.
Thanks for keeping us in your prayers...
Wednesday, October 20, 2004 9:26 PM CDT
Tomorrow (Friday) will mark one week from being discharged from the hospital after Ryan’s second chemo treatment.
He continues to have bladder spasms every 90 minutes since he returned from the hospital. Today, the spasms have been more frequent and severe. The resident urologists assure us that we are doing everything that should be done. We tried adjusting the length of the tubing at the site of the super pubic, some relief came from that. We also had Ryan put a heating pad to relax the muscles. Our biggest concern is there hasn’t been any out put we hope this doesn’t mean a visit tonight to the hospital.
Ryan had a couple of visitors the other night and was able to get in a little poker. Today, even though his counts are very low, he was able to sneak in to school and order his class ring.
Ryan received a package from long-time friend Ulf Dahlen from Sweden. In the package was a Swedish National game jersey that sported #22 and Shuman on the back. As many of you know, Ryan is an avid memorabilia nut and he will be able to add this jersey to the other ones that he has received. To date, Ryan has received a number of prized autographed jerseys & sticks and a special thanks to the Fagerhaugs (Bemidji State jersey), McLean’s (UMD jersey), Burke’s (Vikings jersey), LaCombes (Lancers jersey), Gordie Roberts (Canadian stick), and District 6 for 2 autographed sticks. Also a special thanks to all of you for the gift (hats, games, etc...).
Suzi and I would also like to thank the Kruse’s for opening up their home for a surprise party for the both of us. It was a great way for us to see a number of our closest friends from hockey, neighbors, and family. Thank again!
Friday, October 15, 2004 8:34 AM CDT
Goodmorning-
Well it looks like Ryan is coming home today,and I have everything ready to go. The doctors should be in any minuet to give us their final blessing. I've planned ahead this time and made sure to keep a close watch on his hemblogin,once it began to get under 8.5 I made sure Ryan received extra blood. Last time they sprung it on us at the last mineut,exstending his depature by 8 hours. He has quite a bit more energy after receiving just one pint this time.
He is continuing to have the painful bladder spams and will continue on heavy pain killers at home. They are planning to send him home on I.V.'s so that I can continue to do manuel irragations and give him whatever sedative he may need.
He is down 26lbs but overall looks good. His appetite is sporatic,mostly due to his pain.
We are planning on a quite weekend,perhaps we'll try and get some pumpkins before the snow falls.
His next round of chemo again is on the 28th of October. During this stay they plan to run scans,please pray that things are going in the right direction.
Thursday, October 14, 2004 9:09 AM CDT
Things have been to hectic lately,I just relized that its been awhile since Ryan's web site has been updtated. I know I have tried numerous times but always got delayed.
Here's my effort to get everyone up to date. I am slightly tired so I'll appologize up front for any grammar or spelling errors.
Tuesday-Ryan still has a tempature and is feeling tired and nauseated. He managed to have a couple of visitors and got in a few videos with me. At around 12:00 AM,Ryan started to have intense pain with bladder spasms. The spasms caused him great pain in his back and bladder and bowel. The spams came in twenty minuet rounds,lasting 30 minuets in duration. Ryan passed a few large clots on his own but continued to be very uncomfortable. They gave Ryan a cocktail of pain killers and tried to hand irragate him with little results. At 7:00AM Ryan was finally able to fall asleep from shear exhaustion.
Wednesday-Ryan continued to sleep until around noon,the doctors came into speak to us both. They first wanted to let us know how disappointed they were with both the care Ryan received the night prior and the ammount of time Ryan endured with his horriable pain. They also informed us that Ryan's results from his urine and blood cultures came back,all was negative. Finally some good news. They gave Ryan a be causing his pain,the results would not be available until later that evening. Ryan continued to rest most of the afternoon and evening. At 11:30PM Ryan began to have pain again from the spasms. Ryan was getting quite concerned that he was going to have another painful night. At this point a call was placed out to the resident urologist.
Thursday-At 1:00AM the resident urologist came in and hand irragated Ryan's bladder. He was only able to extract a few small clots. At this time the preliminary results had come back from Ryan's ultrasound. It revealed Ryan indeed has a large clot on the wall of his bladder and at the tip of his internal super pubic catheter. The doctor reassured Ryan this was the cause of his pain and that in time it would loosen and expell. It didn't seem like much comfort to Ryan but did ease his mind that it wasn't a repeat of the situation that occured on the ever still present in our mind "Sunday" episode. They gave Ryan some stronger pain killers that allowed him to rest peacefuly.
It's just after 9:00AM and we are still waiting for the doctors to do their rounds. We are hoping they will let Ryan head home today. His tempature has returned to normal and his pain seems under control.
Bob will return from his business trip tomorrow. He managed to get a earlier flight home,it's been really hard for him to be without Ryan this week.
We have made some close relationships here with different families on 5B. It's amazing the relationships that develope in tragic situation,a bond like no other. As many of you know our previous situation with the premature birth of our second daughter(Alicia)we developed relationships then that are still a great part of us today and those relationships will carry us through this journey with Ryan. Faith was a big part of Alicia's sucess and will also be with Ryan's.
So thank you so very much for all your continued support.
The Eden Prairie Hockey Association is holding their annual haunted house again this year. It's called "Something scary on the prairie". It's located next to the Eden Prairie Menards. It will be held the weekend of Halloween and the weekend prior. They have both evening and matinee showings. The matinees are not as scary and are suggested for children under twelve. This year a portion of the proceeds will go to a fund for Ryan. It's been a hit in years past and is a fun thing to do with family,friends and groups or teams. If you have any additional questions,log onto the Eden Prairie Hockey web site and click under "special events".
Monday, October 11, 2004 11:25 PM CDT
Today was a little tougher than normal for Ryan. Ryan ended up running a temp. majority of the day and evening.
They ran some blood and urine cultures. The blood tests won't come back until tomorrow, but the urine was negative.
He had a pretty upset stomache the entire day and his joints are uncomfortable. The nurses and doctors reassure me it's par for the course with the type of chemo he is receiving.
Tonight is the last round of chemo for this span of time. Hopefully all that had occur won't delay him from coming home.
Our next round of chemo is scheduled for the 28th of October,it would be nice to have a couple of weeks instead of days in between the next time.
Sunday, October 10, 2004 8:23 PM CDT
Ryan is on his third day of chemo. He is still very tired and has now managed to develope quite a few ulcerated sores in his mouth and throat. The doctors are just going to watch them for now. They gave him some medicated mouth wash for him to use 3x a day,left untreated these type of sores can be very uncomfortable and serious. His last blood counts were still good,so we hope they will just heal on their own.
The unit is quiet,so Ryan is getting a lot of attention from the nursing staff on 5B. The staff seems to really enjoy working with him.
Ryan had a few visitors again today,one came with a Little Ceasar Pizza for dinner. Ryan managed to have a slice,even with his sore mouth.
Our plans tonight is to catch a little t.v. and then hit the hay early.
Saturday, October 9, 2004 3:47 PM CDT
So far Ryan's stay here at Fairview University has been uneventful and peaceful. Ryan has been resting majority of the time between rounds of chemo. We are told that most teenagers sleep during their chemo,most just want to come in and get down to business.
Ryan is continuing to receive all the thoughtful gifts,cards and e-mails. They really perk up his spirits and some cases have perked up his family weight (brownies,cookies,candy and snacks)
We were looking through different scriptures and came across this one which describes so many of you whom have added Ryan and our family to your own personal prayer list and or have added him to you prayer chain.
"Is any sick among you?
let him call for the elders of the chuch;
and let them pray over him,
annointing him with the oil in the name of the Lord:
And the prayer of faith shall save the sick,
and the Lord shall raise him up;
and if he have committed sins,
they shall be forgiven him."
James 5:14-15
The power of prayer is so much greater than us... Thank you
Thursday, October 7, 2004 7:39 PM CDT
Today Ryan is back in for round two of chemo. He isn't exactly anxious about starting chemo again,but knows it's one step closer to getting better.
He has pretty much lost all of his hair by now but is still down pounds,eighteen to be exact. He gain some but has lost what he gained unfortunetly.
It's so sad to come back to 5B at Fairview University,so many of the kids are either still here or have also returned again like Ryan. There is quite a few new children here also. If anything this has taught us to be thankful each day for the health we have and the amazing steps that are being made for cancer and other horriable diseases.
Ryan should be here till atleast Tuesday of next week. If you plan on visiting,please keep in mind to call first and to withhold your visit if you are ill of any kind.
Please continue to hold Ryan and our family in your prayers. We can't thank you enough for everything.
Sunday, October 3, 2004 2:10 PM CDT
After a very eventful night at homecoming,Ryan awoke like most teenagers at noon. He really enjoyed getting to see quite a few of his friends.
So far he is managing being home very well. He spends majority of the day just relaxing with play station 2 or t.v.. Most kids would like that kind of schedule,but Ryan is anxious to get back to a more normal schedule.
Tomorrow Ryan is planning on attending a partial day at school. The staff at EPHS have been very helpful and supportive to both Ryan and our family. Ryan is looking forward to getting back in class. This week he will attend school through Wednesday.
Ryan goes in for his second round of chemo on Thursday,October 7th. He's trying to build up his strength this week with a light schedule and good nutrition. He's put on a total of 5 lbs. since he's been home,just 14 lbs. to go from his originating weight. Overall he still has his positive attitude.
Thanks again for all your thoughts and prayers...
Wednesday, September 29, 2004 11:40 PM CDT
It's now been over twenty four hours since Ryan has arrived home. He spent most of the evening last night just walking around the house in circles, reaquainting himself with the lay out I guess. Today he was able to get out for a few hours.
Tomorrow Ryan will be meeting with the counselors at EPHS to set up a plan for the rest of the year. He is planning on attending a partial day Friday and hopes to be at the football game that evening.
We will continue to update this journal. Please feel free to give Ryan a call or send him a email.
Thank you for your continual support through prayers, emails, dinners at home, gifts, and transportation for the girls, etc... Words can't describe how we feel.
Monday, September 27, 2004 8:26 PM CDT
Hello to everyone... In less then 24 hours I hope to be a free man. I just wanted to thank everyone for all of your support and prayers. I am looking forward to getting home and oddly enough back to school. I am starting to feel like myself again, hungry as usual. I've read all of the journal entries and can't wait to catch up with everyone soon.
Thanks again, Ryan
Sunday, September 26, 2004 6:50 PM CDT
Ryan was able to get out for a stroll around the U of M hospital today (in a wheelchair). He really seemed to enjoy seeing a little of the campus.
His white count is now picking up as well as his energy.
Ryan continues to recieve alot of support from both the journal entries and visits at the hospital. He is really so touched by all of the prayers and acts of kindness.
Visitors = Yellow (should be fine, call first - just as a reminder,make sure that you are not ill with a fever within the last 48 hours and or a cold of any sort].
Saturday, September 25, 2004 10:02 PM CDT
Ryan spiked a slight temp last night (100.6) and the doctors were able to bring it back down to 99.2 as of 5:00 pm today.
Other than that, today marks another good day for Ryan.
He had a visit from Cal Dietz (U of M strength and conditioning coach) and talked about nutrition. It is amazing how eating the right foods and supplements can improve the results of the chemo. It looks like Ryan will be starting a new diet.
Ryan was also able to do something that he hasn't done in close to three weeks - he was able to hop on a wheel chair and get out of his room. In fact, he was able to get outside for 20 minutes and enjoy the great day.
The nurses were going to get him to take a little walk and excersize this evening before he goes to bed. Ryan entered the hospital weighing around 165 pounds, and has lost close to 20 pounds since checking in to the U of M hospital suites.
Visitors = Call first
Friday, September 24, 2004 9:09 PM CDT
Ryan had a good day. He is a little sore due to the procedure he had on Wednesday night, other than that, it was lots of sleep and video games for the day.
The doctors are starting to take Ryan off the IV drugs and are now giving him oral drugs. This is good for this is the first step in getting out.
His blood count is beginning to drop, which is to be expected. They will watch him closely to make sure that he doesn't get ill during this time. It is just as well that he will be in the hospital for the next 3 days while his count begins to build up again.
The entire staff at the hospital knows that his goal is to make it to homecoming next weekend and that they are all doing what they can to make sure that he is out and strong enough to make it.
Visitors = call first
ALSO - At last - I was able to add some pictures. Click on the VIEW PHOTOS for a couple of recent photos.
Thursday, September 23, 2004 8:27 PM CDT
Great day for Ryan, the super-pubic catheter has really made a difference. He has had only a couple of bladder spasms since the surgery.
The doctor met with him this evening around 7:00pm and told him that if everything goes well over the weekend, Ryan may be able to go home this next Monday (9/27)or Tuesday (9/28).
That would be great to have some time at home before he has to come back for his second chemo treatment which is scheduled for October 6.
Visitors = Yellow/Red.
We are waiting for the blood work to come back to see what his count is at. That will determing if he is able to have visitors. For now, if anyone is planning on coming down, I would call first. (I will update this message once the results are back).
Wednesday, September 22, 2004 10:29 PM CDT
Ryan just arrived out of the surgery (they had a late start - 7:00pm) and everything went well.
They purpose of the surgery was to enter the bladder with a scope to see what is causing his bladder spasms that he was having every hour.
While in the bladder the doctor was able to clean out a significant amount of debris which is believed to be the primary cause of these spasms. We will find out what the debris is later on.
They also decided to do a super-pubic catheter. This is where they place a catheter through the lower abdomin (just below the belly button) and in to the bladder. This is actually a good thing for he should have less spasms and will allow him to get up and move around.
He is doing well and is asking for some chicken taco's, pizza, and mashed potatos.
Visitors = Red (no visitors for now) only calls.
Tuesday, September 21, 2004 8:35 PM CDT
From a chemo, Ryan continues to do well. From a bladder standpoint, he continues to have problems.
sometime around 5:00pm tomorrow (Wednesday), they are going perform a scope surgery on the bladder. The purpose of the scope surgery to see what is causing the spasms and bleeding as well as to do a complete airigation (?spelling) of the bladder and remove any old blood clots.
We hope that this procedure will help Ryan turn the corner on the bladder stuff.
We will post after the surgery is finished.
Visitors for tomorrow (Wednesday) = Red - no visitors.
Monday, September 20, 2004 11:14 PM CDT
Great day - Ryan felt real good for most of the day and the Twins won and clinched the division title! What could be better - a Vikings win and Ryan at home! We'll take 2 out of 4 any day.
Ryan met with the doctor today and was very encouraged when the doctor indicated that he may be able to go home around mid week. Although it will more than likely be with a catheter, at this point, he will take it and so will we!!
As of school, if all goes well, we hope to see him get to some classes some time next week just before homecoming.
He was shocked to hear that he has lost 10+ pounds in the last 2 weeks from being in the hospital, however, that does not concern us for he has 2 more Little Ceasar Pizza's waiting at home for him - Our guess is that he find those pounds that he lost real soon.
Ryan continues to make sure the I let everyone know that he really appreciates all of the emails, website entries, visits, cards, etc... Knowing that people are thinking of him is really motivating to him.
Visitors = Yellow/Caution.
Sunday, September 19, 2004 10:23 PM CDT
Today was a difficult day for him; he woke up this morning to having bladder spasms, which causes bleeding in the bladder which results in blood clots which clogs up the catheter.
After 3 hours of fixing him, he had a good day only to go through the same thing happen this evening.
The doctors have been trying to get these spasms/bleeding/clotting under control, but they have not had any success. We should know more tomorrow how they are going to attack this problem.
From a chemo standpoint, he did great!
We knew that Ryan was a strong and tough kid, but what he has gone through and how he is dealing with it is awesome!! We can't express how proud we are of him!
Visitors - Yellow/Caution (call first).
Saturday, September 18, 2004 9:03 PM CDT
Ryan had an excellent day - still no side effects from the chemo and his spririts are up!
We are hoping to see his at home sometime during the middle of the week and with any kind of luck, a little school the following week (week of homecoming).
Not much else to say for today. As they say - "no news is good news!"
Visitors - Still Yellow/Caution (call first)
Friday, September 17, 2004 7:43 PM CDT
Well, today was a bitter/sweet day.
He just finished his first chemo treatment with all three drugs and he is doing very well and has not experienced any side effect issues as of yet - lets hope that Ryan will be one of the patients that handles this chemo well.
He did however, have another bladder setback. He began to experience some significant blood clotting which caused the catheter to block, which was bringing back memories of last Sunday for him. The doctors were very quick to react and was able to get it under control before the pain escalated.
One of the doctors said that the bleeding in the bladder (which caused the blood clotting) may be a result of the tumor above the prostate shrinking - lets hope!!!!
He is resting now which is a concern because I think he is becoming nocternal. He has been staying up until 4-4:30 am each night and sleeps late in the day. If that is the worst problems, then we will take it!
Visiting = still a yellow/caution - call first.
Thursday, September 16, 2004 10:07 PM CDT
As the night comes to an end, Ryan is 50% through his third chemo drug for this treatment and he is still feeling ok.
They say that the first treatment is always the most difficult because you don't know what to expect and how the patient, in this case Ryan, will react - time will tell
Keeping things in perspective, this is the first of approx. 13 treatments, after tomorrow, he can say that he only has 12 more to go.
He is staying real strong and positive and your comments that you many of you have added is keeping him focused and motivated! He thanks you!!
He did finally get a computer in the room with internet access, however, he has a dial up connection which is very slow. He will have to figure out how to email or instant messenger tomorrow - that will keep him occupied for a while.
Visitors = Yellow/Caution. If anyone is thinking about visiting, I would call him or Bob/Suzi at the hospital first.
Wednesday, September 15, 2004 8:23 PM CDT
Today has been another great day for Ryan - his pain continues to get better and they keep reducing the pain meds. His stomach is getting back in to shape too - he ate 3 slices of Little Ceasar pizza for dinner.
Great news - he started his chemo today around 6:00pm with the first of 3 different drugs. The first one only took 2 minutes to administer, then followed by a second drug that took an hour, and they just started his third and final drug that will take 48 hours to get in him. All of these are done via an IV in his port that was implanted in to his chest, so there is no discomfort.
We are all waiting with great anticipation to see how he does with the chemo - so far-so good! However, they say that he could experience some side effects any time between now and next week. For now, we'll this as a positive!
It looks like he'll be in the hospital for another week or so - give or take a day or two. This is dependent upon how quickly the tumor above the prostate begins to shrink.
As of now, he is making plans to be at homecoming and is hoping to be at school soon. He'll just take a take a wait and see approach to this - a lot will depend on how his white count in his blood is doing at that time. We just don't want him to run the risk of getting ill because his immune systems is low, which could be a major set back.
As for visitors - we have had a lot of requests as to his ability to have visitors during his treatments. Therefore, we will leave a notation at the end of the daily journal indicating his ability to have visitors for the following day. Keep in mind that this could change throughout the day, however, we have thought that this should help. You can also call him at 612-273-0333 just to confirm that a visit is ok just before you are planning on coming down.
For now, it is a green light for anyone that is not ill. visits should be limited to short stays and anyone entering his room needs to wash their hands before entering.
We will update this tomorrow.
Tuesday, September 14, 2004 4:19 PM CDT
Wow - yesterday was a good day and today is even better. Ryan has been feeling better and better to the point that they have been reducing the pain medication and he is getting back to himself.
Today has been a great one so far. He woke up to a MN. Vikings game jersey that was signed by a number of Viking's that read "Ryan - you have been cheering for us long enough, now it is our turn to cheer for you!"
He also had a visit from the ortho from EP to remove his braces and his smile looks great!
Later on he received 2 autographed sticks - one from Kieth Primeau and another from both Dave and Bill Christian of the 1980 & 1960 Olympic teams.
Today, around lunch time, Ryan received a visit from Tanya (manager of the Little Ceasars Pizza in Anoka) with 2 pizza's for him. The other day, friends of the family asked Ryan "If you could eat anything, what would that be? In typical Ryan fashion, he said "Little Ceasars Pizza" (thinking the closest location was in St. Cloud). When Tonya heard this, she took it upon herself to personnaly deliver them to him. Today, was really the first day in a week that he ate something other than jello - and go figure - it was L.C. Pizza!
Ryan and family would like to like to thank everyone for the gifts, emails, phone calls, cards, supportive comments and prayers. He is ready to get on with the chemo tomorrow and we'll keep you updated.
The comments that have been written in the guest book are printed off and given to Ryan daily - thank you! He is hoping to have a computer hooked up by Thursday so he can communicate vis email himself.
We will be adding photos later on this evening.
Thanks again for the support.
Monday, September 13, 2004 5:42 PM CDT
After a difficult day yesterday, Ryan is feeling a lot better and back to himself - smiling and cracking jokes!
As a result of yesterdays episodes, they have rescheduled his first chemo treatment for Wednesday, September 15th - the day the the NHL's collective barginning agreement expires.
It looks like Ryan will be in the hospital through the first part of next week!
He is looking forward to a good poker game soon.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |