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Sunday, February 10, 2013 9:05 PM CST Ryan,
It is so hard to believe that close to 8 years have pasted since you left us. We think about & miss you each and every day but know with God's promise one day we will be reunited for eternity.
Love,
Mommy & Daddy
Friday, July 1, 2011 8:04 AM CDT Ryan, it's hard to believe 6 years have
passed since you went to Heaven. Not a day goes by when mommy and daddy don't think about you. We miss you so much!
Love,
Mommy & Daddy
Tuesday, October 26, 2010 8:03 AM CDT Ryan, mommy and daddy miss you so much! It's so hard to believe that you would have turned 8 this month.
Happy 8th Birthday
forever in our hearts...
Love,
Mommy & Daddy
Tuesday, December 29, 2009 3:45 PM CST Dear Ryan,
Mommy and Daddy hope you had a beautiful xmas in Heaven. We miss the joy you brought us here on earth but know you are experiencing even greater joy in Heaven.
Today we learned about your baby sister Chloe... we are thrilled to be have her join our family and we are sure you are looking over her until we are able to bring her home.
Love,
Mommy and Daddy
On October 14, 2002, Pat and I experiened a day full of extreme joy when our precious son Ryan was born. Ryan would have been 7 years old on Wednesday, October 14, and is sadly missed each and every day since he left this earth.
As with July 1st, the day Ryan left us for heaven, Pat and I will honor his memory on Wednesday evening by releasing balloons off of Long Island Sound.
Please take time on Wednesday to honor the memory of our precious Ryan on October 14 by eating a cupcake or releasing a balloon to heaven.
God Bless,
Linda & Pat
Wednesday, April 15, 2009 3:40 PM CDT Please support our team, Ryan’s Angels, in the Kids Walk for Kids with Cancer walkathon on Saturday, May 9, in Central Park. The walk, started by teenagers here in New York, contributes 100 percent of the proceeds goes to pediatric cancer research at Memorial Sloan-Kettering Cancer Center.
This walk is especially meaningful to my husband Pat, and I, since we will be walking in memory of our only child, Ryan, who was lost to a pediatric cancer (Neuroblastoma) in 2005. Ryan was diagnosed with cancer when he was 5 weeks old and fought the battle for most of his life, both in our home state of Michigan and at Memorial Sloan-Kettering. Pat and I are committed to supporting pediatric cancer research in the hope that other parents will be spared the devastating experience of losing a child as we did.
Please help us help more kids and families affected by childhood cancer by supporting Ryan’s Angels.
How can you help?
go to www.walkforkidswithcancer.org - the website will have everything you need to know about the walk.
• Select NY Kids Walk for Kids from the drop down menu where it asks How would you like to use this gift?
• Designate your contribution in Memory of Ryan Connolly and then enter Linda Connolly in the space asking for the walker's name.
Thanks so much for your support!
Linda
Friday, February 20, 2009 8:04 AM CST If roses grow in Heaven Lord,
Please pick a bunch for me.
Place then in my son’s arms
And tell him they’re from me.
Tell him I love him and miss him,
And when he turns to smile,
Place a kiss upon his cheek
And hold him for awhile.
Because remembering him is easy,
I do it every day.
But there’s an ache within
My heart as I think of him today.
We love and miss you Ryan!
Mommy and Daddy
Wed, December 24, 2008 8:48 PM CST Another holiday season is upon us with Christmas fast approaching and the absence of Ryan is painfully with us.
This year I placed one of our favorite photos of Ryan and Santa out which was something I've been unable to do since he left us. It's amazing that it is now over 3 years since we lost him yet the pain we feel for our loss has not changed.
This is our new normal which we have had no choice but to accept.
Pat and I are doing OK and are planning on celebrating the holidays at our home on Long Island with friends and family. We even decorated our home like we used to. Please keep us in your prayers for continued strength as well as other parents/families who have experienced a loss of a loved one.
Yesterday we had dinner with Ryan's teacher Anne Marie from Sloan Kettering; we haven't seen her since Ryan passed. Anne Marie was so wonderful with Ryan. I can remember the time that Ryan went up to Anne Marie to give her a big hug. Ryan loved her very much and so do we!
Happy Holidays!
Linda & Pat
Monday, October 13, 2008 10:04 PM CDT Tuesday, October 14, would have been Ryan's 6th Birthday. We often think about how he would look now if he were still here with us. Would he have the beautiful blue eyes and blond hair we knew?
Now we only have our past memories of a life cut so short but a life which taught us all so much. Ryan taught us all about what's important.
The loss of a child is with you always and the reality hits you with each waking day. You no longer fear death because death has taken your joy, your hope and a large piece of your heart. Your life will never be normal as it once was but you go on realizing it is a new normal.
Ryan, we miss and love you very very much. Happy Birthday in Heaven!
Mommy and Daddy
Saturday, March 29, 2008 12:04 AM CDT It is hard to believe that this July 1st will be 3 years since our little guy left us as we often feel the pain in our hearts as if it happened to us yesterday.
Unfortunately another child we knew, Harrison, recently passed away from this horrible cancer. We met Harrison and his wonderful family while we were at Sloan Kettering with Ryan. Please keep Harrison's family in your prayers.
God Bless,
Linda & Pat
Thursday, November 29, 2007 7:47 PM CST It's hard to believe we are entering another holiday season without our beautiful son. I used to enjoy the holiday season but now I find the holidays only saddens me and reminds me of the pain I carry in my heart. I can honestly admit that time has not helped lessen the pain.
If it wasn't for our faith in God and promise of spending eternity with our son and loved ones... what would we have.
So we get up and face each day knowing that God has a plan for our lives here on earth even when our road is paved with difficulties.
First Corinthians 13:12 says, ...Now I know in part (imperfectly).... Trust will always require us to accept unanswered questions!
Friday, October 12, 2007 3:52 PM CDT 'The unfailing love of the LORD never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, 'The LORD is my inheritance; therefore, I will hope in him! The LORD is wonderfully good to those who wait for him and seek him.
So it is good to wait quietly for salvation from the LORD. For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32
As we find ourselves approaching what would have been Ryan's 5th bithday with us ( 10/14 ), the fact that there will always be that certain something missing in our lives becomes painfully clear. There's really not that much that we can do about that aspect of our loss, but what we CAN do is remember him with all of the love that we developed while getting to know him in his 'all too short' time here with us. We'll always take comfort in the knowledge that he is being held in perfect peace & joy, patiently waiting for that day in heaven when we can all finally be reunited together forever in our Lord's glorious presence. This is God's promise, and this is what gives us more comfort than anything else. In as much as we wish Ryan were still here with us, we look forward that much more to seeing him again one day, and that will be forever. Praise God.
Lord; help us to be worthy, patient, and wise enough to see this journey through to suit your divine plan for our earthly lives. In Jesus' name we pray.
Happy birthday, Ryan. Have a great time up there, and try not to wear Grandma out too much. Although I'm sure that you have no shortage of playmates. So once again folks; blow some bubbles, eat a cupcake, release some balloons, and remember our little man that is the only hero that we'll ever need. Thanks for remembering us...God bless.
Sunday, September 9, 2007 5:40 PM CDT Often I have heard that God only gives us what we can handle; can't say that I agree. Today I read something which made more sense...
"God doesn't give us what we can handle. God help's us handle what we are given."
Pat and I have had a busy summer. Due to the adoption process taking longer than normal we had to reapply with immigration this past month.
We have heard about so many children passing from this horrible cancer recently... please pray for their parents/families. It is a club which no parent should belong to.
God Bless,
Linda & Pat
Sunday, September 9, 2007 2:48 PM CDT Often I have heard that God only gives us what we can handle; can't say that I agree. Today I read something which made more sense...
"God doesn't give us what we can handle. God help's us handle what we are given."
Pat and I have had a busy summer. Due to the adoption process taking longer than normal we had to reapply with immigration this past month.
We have heard about so many children passing from this horrible cancer recently... please pray for their parents/families. It is a club which should no parent should belong to.
God Bless,
Linda & Pat
Sunday, September 9, 2007 2:48 PM CDT Often I have heard that God only gives us what we can handle; can't say that I agree. Today I read something which made more sense...
"God doesn't give us what we can handle. God help's us handle what we are given."
Pat and I have had a busy summer. Due to the adoption process taking longer than normal we had to reapply with immigration this past month.
We have heard about so many children passing from this horrible cancer recently... please pray for their parents/families. It is a club which should no parent should belong to.
God Bless,
Linda & Pat
Sunday, June 24, 2007 10:08 PM CDT Hey folks. It's that time of year again when LInda & I find ourselves in the rather awkward position of remembering the birthday in heaven of our precious son Ryan. I'm quite sure that there's no reminder neccessary for the majority of you, if any, but we still feel compelled to ask so many of you that had touched our lives on so many levels in his short time here to spend a few moments next Sunday remembering that small, brave little hero that meant so much to all of us. The inspiration that Ryan's life represented to so many will never be forgotten by any of us that had the pleasure of having known him, but we simply can't let the memory of his joy, his smile, or his laughter pass by without occasionally stopping to let him know that we still think of him ( often in our case, obviously ). So take a moment next weekend, say a prayer, blow some bubbles, send up some balloons, or even have a cupcake; to remember the only hero that Linda & I will ever need, and think of all the joy that's he brought to us & all the love that he's enjoying now. For those of you in the Fenton area; please stop by and say 'Hi' to Ryan on Sunday if you get the chance. The bubbles almost seem to blow by themselves there, and the balloons seem to rise forever. Maybe the view from heaven is better over there. Save us a good spot little buddy ( I'm sure that it'll be close to a sandbox). We miss you Ryan, and we love you very much!
God bless,
Pat & Linda
Tuesday, April 24, 2007 8:18 PM CDT
Yes, you can officially refer to us as Long Islanders.. well, we haven't moved into our new home yet BUT we closed on Friday, April 13.
Please see the link below to Ryan's best friend Carolyn's site. Carolyn will be participating again in the "Kids Walk for Kids with Cancer" on Saturday May 12. The walk is held in Central Park. Pat and I are hoping to attend.
Carolyn
Please give if you can to this wonderful event.. by donating, you will give children and their families hope.
Each and every day we live with the pain of our loss... please help so other families do not experience this heartbreak.
God Bless,
Linda & Pat
Sunday, March 18, 2007 3:02 PM CDT
Sorry it's been awhile since we've updated the site. Pat and I have been very busy with new jobs, selling our home, finding a new home, etc.
It is hard to believe Ryan will have passed 2 years this July 1st. The pain of our loss, is still with us each and every day, and time has not made it easier but we just keep moving forward.
Max, our 2 year old nephew, gives us so much joy... he certainly is a blessing to our family.
As many of you know, we will be adopting a child from China. China has had our paperwork for about a year now. Pat and I anticipate that we will travel to China this fall or early winter to pick up our new bundle of joy. Although we haven't been matched to our daughter, we picked out her name (Chloe). Giving our daughter a name makes it all more real to us as we talk about her all the time. Of course we've also purchsed many toys, adorable outfits, etc.
Thank you for checking in on us. Although we miss our son terribly... Pat and I know that someday we will be reunited with our son for eternity. Our goal in this life is to follow the path the Lord guides us to, and to continue to trust in him with all our being.
God Bless,
Linda & Pat
Friday, November 3, 2006 5:40 PM CST
Taken from Hope for the Day...
One of the most difficult parts about grief is trying to
find an answer to the question, “Why me?”. Life can be
brutally unfair, and grief is no respecter of persons. When
we least expect it, loss can come knocking at our door
only to leave us feeling totally exhausted, shocked, and
alone in our pain. Nobody is ever prepared for the feelings of loss that accompany the death of someone we love.
Even though “why” is the one question that nags us day
and night, I don’t think there will ever be a way of finding the answer to that question. At least not an answer that is to our satisfaction. Life is very unfair, and because of that, bad things do happen to good people—people who deserve only the best in life!
When pain from loss enters our world that was once so
innocent, it can knock us off our feet for a while. Our
world as we once knew it no longer exists. We must now
learn how to live in a place that is completely foreign to
us. We must learn to speak a new language and adapt to
new and different ways of doing things.
There is a tendency for us to long for life to be as it once was before death entered our world; yet the “normal” we once knew cannot ever be the same again. The life we now have has been transformed by loss. We heal by feeling
what we need to feel when we need to feel it. We heal
by allowing our broken hearts to be embraced by hope.
We heal by believing that life is worth living—even when
we don’t have all of the answers. We heal because we believe that life will one day feel joy again! --Clara Hinton
“Hope gives the broken heart a reason to face a new day
with peaceful anticipation.” –Clara Hinton
“In quietness and trust is your strength.” --Isaiah 30:15b
Saturday, October 14, 2006 1:03 AM CDT Dear Lord,
Thank you for bringing us together to celebrate Ryan’s 4th birthday in Heaven. Heaven which we consider to be our real home. Often I feel that you send us songs as a way of comfort when dealing with our grief… As in the song “Homesick” by Mercy Me which rings so true for us.
You're in a better place, We’ve heard a thousand times
And at least a thousand times WE’ve rejoiced for you RYAN
But the reason why We ARE broken, the reason why WE cry
Is how long must WE wait to be with you
We close our eyes and We see your face
If home's where our heart is then We ARE out of place
Lord, won't you give US strength to make it through somehow
WE’VE never been more homesick than now
In Christ, there are no goodbyes
And in Christ, there is no end
So we’ll hold onto Jesus with all that WE have
To see you again RYAN
To see you again
Today we celebrate the gift of Ryan.. who was our glimpse of Heaven. He taught many of us that life is so precious and even though he was here for such a brief moment Ryan accomplished so much by bringing many to prayer.
Ryan’s work was done so you took him home. We can only ask that we honor you with our work on earth, as Ryan did, before you take us to our real home.
Happy 4th Birthday Ryan.. We love you very very much.
Mommy and Daddy
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On Saturday, October 14, 2006 our sweet little Ryan would have celebrated his 4th birthday. We miss Ryan so very much, and even though time has passed it doesn’t seem to make his absence any easier. He richly blessed our lives and others during his very short time on earth. However, with our faith we hold on in knowing that someday, when God decides to call us home, we will be reunited with him for eternity in Heaven.
On Ryan’s birthday we plan on meeting at the cemetery at 10 AM for a balloon launch and prayers. If you can not attend please think of our special little boy next Saturday by blowing bubbles, launching a balloon and/or saying a prayer.
God Bless,
Linda & Pat
Sunday, October 8, 2006 2:06 PM CDT On Saturday, October 14, 2006 our sweet little Ryan would have celebrated his 4th birthday. We miss Ryan so very much, and even though time has passed it doesn’t seem to make his absence any easier. He richly blessed our lives and others during his very short time on earth. However, with our faith we hold on in knowing that someday, when God decides to call us home, we will be reunited with him for eternity in Heaven.
On Ryan’s birthday we plan on meeting at the cemetery at 10 AM for a balloon launch and prayers. If you can not attend please think of our special little boy next Saturday by blowing bubbles, launching a balloon and/or saying a prayer.
God Bless,
Linda & Pat
Monday, September 25, 2006 2:03 PM CDT Sadly I learned my 37 yr old cousin, Robert, passed away due to pancreatic cancer on Monday.
The funeral will be this Friday. Please keep his wife and children in your thoughts and prayers.
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I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow
And ne'er a word said she;
But the things I learned from her
But oh, the things I learned from her
When sorrow walked with me.
--Robert Browning Hamilton
Sand Fleas
written by Susan Larson
“The death of a child takes you places you’ve never been before, not only in terms of emotions, but in terms of awareness of all that is. I liken the experience to playing on the shore with your friends and complaining about an occasional bite from a sand flea. It’s painful and annoying, but at least everyone else understands how you feel when you’re bitten.
Then one day, a wave grabs you and pulls you out into the ocean where you are bitten by a shark. You feel pain you never imagined could exist. And you’re alone in unfamiliar territory. When you get back to shore, you try to explain your pain to your friends, but the worst pain they can imagine is being bitten by 1,000 sand fleas. That’s all they know. There is no way to explain it to them.
But it’s not just the pain you can’t explain. While struggling under the water you’re suddenly aware that there is infinitely more to life than what we see on the shore. You see the ocean floor with coral reefs and rock formations, things you had never before imagined. You have tapped into the vastness of creation to a higher degree. And again, there is no way to adequately describe this vastness you see and feel. You have nothing to compare it to.
You have a true sense of a greater dimension, and you know that the loved one you miss is out there. You also know your loved one is not lost, but has only gone before you to a place more beautiful and vast than those on the shore could ever imagine. Yes, you still get annoyed with the sand fleas, but you now realize how trivial they are. And even if your friends don’t understand you, you know there is Someone greater out there who does.”
Thursday, September 21, 2006 12:41 AM CDT Taken from God’s Daily Promises
We mourn for many reasons, and each painful loss tears our emotions and causes us to regret past actions and missed opportunities, to wonder what might have been. Certainly nothing hurts more than the death of a loved one—we miss our spouse or child or parent or friend, and we long to hear that familiar voice and feel the person's touch.
Through the Scriptures, however, we learn that, one day, God will turn mourning into gladness and sadness into joy. That is God's plan. Because we know him, our ultimate destiny is heaven, and we have the solid assurance that one day all sickness, death and sorrow will be banished—we will be perfect and complete. All of this earth, including our pain, is temporary, but our joy will last forever.
You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy.
Psalm 30:11 NLT
Tuesday, September 19, 2006 11:46 PM CDT Sadly 9 year old Christi earned her wings on Tuesday after a 4 year fight with this horrible cancer. Please keep the Thomas Family in your thoughts and prayers.
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Taken from Hope for the Day
Loss hurts and we want to know why this pain has come into
our lives. Why did I lose the job I loved so much? Why was my income taken away when I was a generous person with
the money I earned? Why did I get the diagnosis of cancer?
Why won’t my health insurance cover the treatment that I need to get well? Why do I have to begin my life all over again?
Losses of all kinds occur in life and we grieve each one in a very personal way. It is not easy to have joy and comfort snatched away suddenly and then try to find ways to cope and begin filling an empty heart.
Any loss is devastating, but when a child dies that loss is one that stops the clock for a long time. The pain paralyzes us and we seem to get trapped in a tunnel of darkness groping to find away out. When we ask why, only an empty echo returns to us.
Why did my child die? There is no reasonable answer that is good enough to soothe our minds and hearts. Children are not supposed to die. They are supposed to grow and thrive and be full of energy and life. We cannot ever truly reconcile the death of a child, yet we know we must find peace in order to go on.
During times of extreme pain and questioning, we must hold on to the thought that God has not left us alone in our pain. He is our Keeper, our Shepherd, our Hope, and our Father. He is by our side every step of the way. God has given us reminders of His love in the beauty of the seasons. He paints the rainbow in the sky as a reminder of His promises. He is consistent in His unending love for us.
Why did my child die? That question will never be completely answered. God asks us to hold fast to Him, to trust Him, and to place our hope in Him. When we do, peace arrives to comfort our war-torn heart. Hope gives us the reason to go on! –C. Hinton
“Peace fills my soul when I place my hope in God.” --C. Hinton
“O my God, in Thee I trust.” --Psalm 25:1b
Sunday, August 27, 2006 4:15 PM CDT Sorry it has taken awhile for us to update the website. Pat is settling into his new job. We also have our home up for sale, but it is a slow market in Michigan. Fortunately we have seen more interest in the last 3 weeks, but nothing concrete yet.
Time is moving on but our pain, without our precious Ryan, still remains. We've accepted the fact that we must now find a new normal way of life as there is no going back to the way it once was. In some ways we are forever wounded by our pain but we move on with faith. We move on with the promise of eternity in Heaven where we will be reunited with our son. Until that time our goal is to travel the path the Lord has put before us; remaining faithful.
Many folks are curious about the adoption process for Chloe. Unfortunately there is nothing new to report at this time. We are so excited about being parents again, and can't wait until that wonderful moment when Chloe is placed in our arms.
Unfortunately, the referral (i.e. match to a child) is taking anywhere from 10 - 14 months from the Log in Date (LID). A year ago the wait was about 6 months. Our LID date is 4/3/2006. We hope you will want to participate in the 100 Good Wishes Quilt project. Please see www.journeytochloe.com to participate. If you have any questions feel free to email us at padwik@yahoo.com
Please pray for Christi Thomas who is going through a very difficult time and has not responded to treatments. Christi was diagnosed around the same time as Ryan, back in 2002, with Neuroblastoma. Pray for mom and dad to have continued strength.
Note: At Christi's website you will want to click on the Blog to see recent journal entries.
God Bless,
Linda & Pat
Saturday, June 1, 2006 1:00 AM “We miss our son. Every day that passes reminds us of what he might have been, or what he could have done. Our disappointment in not sharing his life, however, is overshadowed by the promises of God’s Word. To become more like Christ has become our singular desire until the day of our reunion with our son in Heaven. On that day we will fall down and worship the Lord together with him - forever. What a glorious hope that is! What a glorious hope every parent should have after the death of a young child. The hope of Heaven is truly glorious hope!”
John MacArthur
Safe in the arms of God
(from Jacob's site)
Today is one year since you left us for Heaven. Mommy and Daddy miss you so much. We think of you the minute we wake each morning. The year has flown by so quickly but the pain of losing you is still with us each and every day.
Some days are very hard but we promised God that we will do our best to continue on with this life journey until the day we are called to our real home. As daddy always says “you were our glimpse of Heaven”. You truly were a gift from God that we cherished with all our being.
After Father Harvey says some special prayers with us this morning we will be sending some balloons up to Heaven for you (and a few for your buddy Jacob too).
Forever in our hearts
Love,
Mommy and Daddy
Tuesday, June 20, 2006 6:18 PM CDT Update as of Thursday, June 23 6:00 PM
The last few weeks have been so tragic.
I learned the other day that another relative is terminal from pancreatic cancer. He is only 37 years old and a father to 3 children. Please keep Robert and his family in your prayers.
Also, please pray for Benny who is dying from Neuroblastoma. Pray that his last days on earth are peaceful. Benny
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“We miss our son. Every day that passes reminds us of what he might have been, or what he could have done. Our disappointment in not sharing his life, however, is overshadowed by the promises of God’s Word. To become more like Christ has become our singular desire until the day of our reunion with our son in Heaven. On that day we will fall down and worship the Lord together with him - forever. What a glorious hope that is! What a glorious hope every parent should have after the death of a young child. The hope of Heaven is truly glorious hope!”
John MacArthur
Safe in the arms of God
(from Jacob's site)
Pat and I just returned from a vacation out west. We thought it would be good to get away for a few days before he starts his new job. Since this was Pat’s first Father’s Day without Ryan around it was good to be away.
Jacob is now in Heaven and I’m sure Ryan was among the first to show him around. My cousin Jimmy’s wife, Maureen, also passed away from a rare form of cancer last Thursday. I can recall Maureen and I being in the same classes together as kids in grade school. The last time we saw Jimmy and Maureen was at Ryan’s visitation. Please pray for peace and strength for these families.
I had purchased the recent People magazine on the flight home, and noticed an article about Memorial Sloan Kettering holding a prom for the cancer patients. Pat and I know some of the patients mentioned in the article. I can recall Ryan being fitted for the prom last year but not feeling well enough to attend. I know Ryan would have loved to dance to the music.
No news on the adoption front. The paperwork is in China, and now we have to wait. Just like a pregnancy! It is taking much longer this year for the referral (match to a child). Last year it would take 6 months after China received your dossier (i.e. paperwork)… this year it is taking anywhere from 10-14 months. Please pray that we will learn about our Chloe soon.
It is hard to believe that Ryan will have passed 1 year ago on July 1st. It really seems like yesterday. How I miss holding and kissing my little boy. We plan on releasing balloons at the cemetery on that day, and ask that you please do the same in Memory of Ryan.
God Bless,
Linda & Pat
Saturday, June 3, 2006 8:15 PM CDT Update as of Friday, June 9, 2006
Please keep Jacob and his family in your prayers at this time. We met this wonderful family while at Memorial Sloan Kettering in NYC.
Jacob
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I was cleaning out our email and noticed someone had sent us something, after Ryan passed, titled "The Club" which I never read until now.
The Club by Karen Grover
In January 1987, my husband and I became members of a very exclusive club. We had been only vaguely aware of it's existence, and we thought that surely a chapter in a city the size of ours wouldn't have many members.
We had seen a few people who belonged to the club, but we didn't seem to have anything in common with them. Occasionally, we read stories in the newsppaper about new members being initiated into the club, but it didn't seem likely that we would ever be eligible to join, so we paid no attention.
The price of membership is so dear that we couldn't imagine being part of the club. We must have realized in the backs of our minds that people didn't choose to join and pay the dues-it was done for them somehow. In fact, no one really has any idea how many members are selected. There are a lot of theories; but much of the time, the theories come from non-members who don't understand much about the situation.
The" club" we are now in (although it is not an organized group), is known as "bereaved parents". The cost of membership was the life of our son; and we, like all other members, have no idea why we were selected for membership.
No one wants to be in this club. Even now, months afterward, inside our hearts and minds we continue to fight membership, but their is no resigning from it. It is an automatic lifetime membership. There was no way to avoid it--we did the best we could to keep our son safe. For fourteen years, we guided him through dangers, only to have him die in a seemingly minor auto accident. Though we lay awake night after night, and think of it day after day, there is no answer as to why we have been thrust into this select group. We hate it and we cry out in protest, but their is no way to change it.
We have learned a lot since our membership began. We now understand much about other members. In fact, we seek to be with them, to have regular get-togethers, to discuss our membership, and to try to understand it's value.
Sometimes, those outside the club are afraid of us, fearing that if they come near us or talk with us, they will be selected to become members too! Acquaintances often try to ignore the membership, pretending that it doesn't exist. They seem to think that will make things easier, and then the member's won't feel "different", but really it only makes things worse.
So many times, I have wanted someone to say hello or to tell me she has been thinking of me or to mention something about the absent child who still lives inside me and overshadows all my thoughts. I have heard people say,"I don't want to upset her, or remind her of her son, or say something that will make her cry".
I want to tell them:" The only way you can make me feel worse than I already do is to pretend that he doesn't exist or that it isn't as deep and painful as you surely know it is.
Have you ever experienced the feeling of having one terrible incident go through your mind, day after day, week after week, month after month, wondering why it happened and how you could have prevented it? Well, don't worry about reminding me of my son. I am thinking about him nearly 24 hours a day.
"Sure, sometimes my mind is temporarily distracted--it would have to be to function at all. But if you think there is even one day that goes by without my child's death tearing up my heart, then you have no idea what this club is about."
I appreciate your talking about my child, or at least letting me talk about him. He was a very large part f my life, and ignoring him now will really hurt me. It makes me think that you feel he's no longer important because he's gone. It hurts to think that people don't want to think about him or remember good things about him, just because he died.
"I understand that you don't want to say anything that will amke me cry--sometimes I just don't know, myself. Some days I stay dry eyed through nearly everything. Other days, the slightest thing will start the tears-things you could not possibly imagine or anticipate. Not all the tears are tears of sorrow. Even in the midst of anguish, I sometimes cry tears of joy and relief because you have reached out; because you have confirmed that my son was special; perhaps because you have shared with me some precious memory about him which I had not known before.
Please don't run away from me. Don't pretend his death never occured, or even worse, that he never lived! I still love him, think of him, need to remember. Please share with me and we will both feel better.
"I am learning that God is not punishing me. He did not cause the death of my son. But, He can help me grow through this experience--to become stronger and wiser and more caring, if I have some help. Initially, when I was told by a church member that I would change and grow stronger through this experience, I wanted to scream that if it meant giving up my son, I didn't want to change or get stronger. But I know I have no choice about that now--he is gone. Now my choices are either let God, and friends, help me; or I can choose to allow this grief to destroy me."
I have to experience the grief. I can't pretend it doesn't hurt, or hurry it along. That's what membership in this club is teaching me. I am choosing to allow God to take an unspeakable experience and use it to start life again.
Monday, May 22, 2006 1:10 PM CDT Pat and I want thank folks who contributed to the "Kids Walk for Kids with Cancer" fundraiser. The event was held at New York's Central park on May 13. Please see Carolyn's site for pictures, etc.
Carolyn Coveney's website
Please be sure to keep Ryan's buddy Carolyn in your thoughts and prayers this week as she undergoes tests/scans, etc.
Sunday, April 30, 2006 3:31 PM CDT
10 months have now passed without our beautiful Ryan here. One thing you soon realize after the loss of your child.. is that life will never be the same, as part of your heart is gone forever. You’re also painfully reminded every waking day that the child you cherished with all your being is gone, and now you must somehow carry on.
So you carry on, focusing on what's important in life (faith/family/friends). You carry on with the awareness that the pain of our loss will forever be with us, but through the grace of God we will have new hope.
During the summer of 2004, when Ryan was declared as having no evidence of disease, Pat and I decided to look into adoption. We felt as if God placed this desire to adopt on our hearts. We always wanted to adopt and thought it would be great for Ryan to have a sister to grow up with. In the Fall of 2004, Pat and I started an adoption process from China but the process was soon put on hold when Ryan relapsed.
Last year, after Ryan passed, we started up the process again. Our paperwork is now in China and in about 10 months (hopefully less) we will receive a picture of our daughter (known as a match/referral). We will travel to China anywhere from two week to two months after the referral to bring our daughter (Chloe) home.
Pat and I look forward to having a child in our life again to love and cherish. Although no child will ever replace our sweet Ryan, having Chloe will bring us new joy.
Thank you for checking in on us. We appreciate your warm thoughts and prayers.
God Bless,
Linda & Pat
**************** In Memory of Ryan (please see below) **********************
Ryan’s wonderful friend, Carolyn, will be doing a walk in memory of Ryan. This gesture touched our hearts, since as with any parent who has lost a child, we really want to keep Ryan’s memory alive.
The “Kids Walk for Kids with Cancer” event will be held at Central Park in a few weeks. Money raised will be used for Neuroblastoma Research at Memorial Sloan Kettering Cancer Center.
One thing Pat and I were very surprised to learn, when Ryan was first diagnosed, is that very few dollars (if any) actually go to children’s cancer research.
For more information please go to
Carolyn Coveney's website
We urge you to PLEASE donate to this wonderful event. Your donation can give hope to so many children fighting this horrible cancer.
Friday, April 7, 2006 4:48 PM CDT
AND GOD SAID...
===============
I said, "God, I hurt."
And God said, "I know."
I said, "God, I cry a lot."
And God said, "That's why I gave you tears."
I said, "God, I am so depressed."
And God said, "That's why I gave you sunshine."
I said, "God, life is so hard."
And God said, "That's why I gave you loved ones."
I said, "God, my loved one died."
And God said, "So did mine."
I said, "God, It is such a loss."
And God said, "I saw mine nailed to a cross."
I said, "God, where are they now?"
And God said, "Mine is on my right and yours is in the light."
I said, "God it hurts."
And God said, "I know."
~ by K.C. and Myke Kuzmic~
Posted on the wall at the Oklahoma City bombing site.
Sunday, March 19, 2006 11:14 PM CST Often we find the words (from Hope for Today) fits what we are dealing with, as we go through this very difficult time of grief.
As described below.. "Holding on seems easier at first, but it only stops the clock and will not allow us to see beyond the tears of today".
Although we will never totally let go, as Ryan's memory will always have a large piece of our hearts, we pray that God grants us strength, hope and courage for this new journey which we face without our sweet Ryan.
*********************************************************************************************************************
It hurts too much to hold on, but it hurts even more not to let go. Holding on seems to only prolong the inevitable. Sooner or later we must realize that life as we once knew
it does not exist any more. The journey that we are now taking is new and different. The steps we take lead us into territory never before explored by us, and we are afraid. Yet, we know we must begin this new journey.
Life after loss is new. Everything that was familiar feels somehow different. The fit isn’t the same any more, and trying to make our old life fit into this new world created by loss won’t work. So, we begin making the new seem less painful. We begin finding ways to create new moments to help us with new hope and courage for our journey ahead.
Letting go of grief doesn’t diminish our love for the one who is gone. Instead, it allows us to celebrate our time together, no matter how brief that time might have been. It allows us to see each day as a new possibility rather than a memory of the past. Letting go fills us with new
hope and courage for the journey ahead.
Letting go is a process that takes a lot of courage. It’s the kind of courage that requires us to be brave and experience our feelings. Holding on seems easier at first, but it only stops the clock and will not allow us to see beyond the tears of today. When we let go, we allow hope
to give us the strength to face each new day with the knowledge that we’re going to make it! --C. Hinton
“Just when I feel like my courage is all used up, a bright star appears to light my way into a brand new day!” –C. Hinton
“Do you know know? Have you not heard? The Everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable.
He gives strength to the weary, and to him who lacks might He increases power.” --Isaiah 40:28-29
Wednesday, March 15, 2006 8:41 AM CST Update as of Friday, March 17, 2006
Pat purchased some St. Patrick's Day balloons and took them out to Ryan's grave today.
We are doing the best we can.. but it
certainly makes us both very sad to not have him here with us. We miss our Ryan so badly.
******************************************************************************
I thought I would post pictures of Ryan’s headstone, as so many folks were asking to see photos, especially since many friends and family live quite a distance away.
Even though it was freezing out yesterday, Pat took some time to take photos of Ryan’s headstone, etc. Pat designed and drew the characters (found on the front side) for Ryan’s headstone, which represented the things which Ryan loved dearly:.. Elmo, bubbles, frogs, and of course Jesus.
The words on the back were written by our wonderful friend Sharon.
Ryan’s final resting place is in the new section of the cemetery. Pat and I selected the site because directly on the other side of the fence is a grade school playground. There is also a large cross with Jesus, next to Ryan’s site, that lights up at night.
I think when you have lost a child, at such a young age, you also realize your own mortality; we purchased the 2 adjoining plots.
God Bless!
Linda & Pat
Wednesday, February 8, 2006 11:41 AM CST It is hard to believe that our sweet Ryan passed over 7 months ago. We miss him so much and always will. I think you get to a point and accept the fact that the pain from our loss will never really go away but you also realize you need to somehow keep going. Life will NEVER go back to the way you once knew it to be.. a piece of our heart will always be with Ryan. Some days may be very difficult so if it means you need to cry you just do.
When you really think about it we are on this earth for a very short period of time so Pat and I really hang on to the hope of being reunited with Ryan some day for eternity. After all Ryan was our glimpse of what Heaven will be like. We only pray that when God calls us home we will hear "Well Done, Good and Faithful Servant." (Matthew 25:23)
Last year a very good friend of mine asked if I would be interested in taking training classes to become a counselor for a religious revival held by Anne Graham Lotz (Billy Graham’s daughter). We both were happy to be a part of such a wonderful event.
I now receive newsletters from the ministry and decided to post the recent newsletter as the words hit home for me.
We and so many folks prayed for Ryan's healing but our prayers were answered in a different way when God took him to his real home. I have certainly asked the question Why??? and often wonder if God’s plan was a personal revival for the both of us.. and perhaps others.
God Bless,
Linda & Pat
P.S. Please keep the children fighting cancer and their families in your thoughts and prayers.
*********************************************************************************************************************
2006 was ushered in as though with a hangover from some bizarre New Year’s Eve party. During the first week of January, our nation seemed to drunkenly stagger from one disaster to another: raging wild fires on the plains that burned hundreds of homes and millions of acres, torrential rains that turned the streets of California towns into rivers, and an explosion that gripped our hearts and riveted our attention on a tunnel two miles underground in West Virginia. How could a year begin any worse?
How has your year begun?
Did you start 2006 with . . . a job lay-off?
a miscarriage?
a divorce?
a death?
the diagnosis of a fatal disease?
bankruptcy?
or as the victim of a violent crime?
Have you shaken your head and wondered, really wondered, in the midst of all the pain and confusion, what in the world is going on? Why . . . ?! Why would God allow such a thing to happen to others? to your friend? to your loved one? to you?
Could it be that an experience of personal revival is triggered by a vision of the Lord that is ushered in, not in a serene moment or a religious setting, but through a life-shaking event?
Whenever something catastrophic takes place internationally or nationally or personally, you and I need to develop the habit of asking God, “Why? Do You have a message in this?”
This concept of a crisis containing a message from God is clearly illustrated in the life of Isaiah, the greatest of the Old Testament prophets. He testified that it was, “In the year King Uzziah died, I saw the Lord.” (Isaiah 6:1)
Sometimes God wraps His glory in hard circumstances or ugly obstacles or painful difficulties, in grief or suffering or loss, and it just never occurs to us that within them is a fresh revelation of Himself.
So when the attack is furious, and the pressure is unrelenting, and the pain is unbearable, my spirit is on tiptoe as my heart whispers, “God, what are You going to reveal to me? What do You have for me inside this crisis? My eyes are wide open!
Monday, January 23, 2006 1:12 PM CST I've read several books on grief and continue to do so.
One day, down the road, I may even consider writing a book about our experience but at this time even the happy moments with Ryan can bring sorrow since we miss him so very much. We absolutely loved him with all our being.
The weekly newsletter received today really sums up a lot of what we are feeling these days.
We pray that God provides us with a "New Song of Hope".
Thank you for checking in on us.
God Bless,
Linda & Pat
Below is taken from Hope for the Day (a weekly newsletter).
Storms enter our lives without warning and can suddenly
shatter our dreams leaving us feeling lost and afraid. Job
loss. The diagnosis of a terminal illness. Addiction.
Betrayal. The most painful storm of all is when death
suddenly comes knocking at our door, and without warning
snatches away the one we loved with all of our being. The
future no longer looks bright. In fact, when our world is
turned upside down by grief, our minds can’t even imagine
the future. It takes every bit of our strength to get through the day hour-by-hour.
Death is something we can eventually understand. We can
even reason it out enough to know that our loved one is free of all earthly sorrow and pain. Yet, there remains the lonely ache to be in the physical presence of the one we love, and we don’t know how to rid ourselves of that empty feeling. It’s difficult to balance pain and loneliness with joy and hope.
In the depths of our sorrow, we cannot imagine ever enjoying the beauty of the magnificent colors of the rainbow stretched across the expanse of the sky.
Not everyone realizes it, but deep within our hearts is a
song of hope that will not ever stop singing its melody.
We may stop hearing the song for a while, but that song
is always there quietly offering comfort and peace. Our
song of hope can be heard when the springtime birds sing
their song of joy as a new season appears. We hear a song of hope when each gentle raindrop replenishes the thirsty earth. With each new sunrise there is a song of hope calling to us to believe in the miracle of a new day!
Today I may be sad. Today I may miss my life as I once knew it. Today I may feel angry about my loss. But, my song of hope will continue to sing its melody until hope springs alive within my soul once again! --Clara Hinton
“My heart always holds a melody of hope.” --C. Hinton
“He heals the brokenhearted.” --Psalm 147:3
Tuesday, January 17, 2006 11:51 AM CST December was a very rough month for us without Ryan so we are glad the holidays are now over.
As one parent said, "with the death of a child life will never be the Old Normal again so you try to establish a New Normal way of life".
Although, I still cry every day and some days are very hard to face with out Ryan around
With this new year..
Pat and I are seeking a New Normal way of life.
The weather was warm enough last week so Pat took this opportunity to set up a garden area with stones and fencing around Ryan's grave site. We will be posting pictures of the head stone soon.
We been trying to watch our diets and exercising to get back into shape. We even went ice skating which was a lot of fun! I've taken up Yoga the last few months and really enjoy going.
Thank you for stopping by to check in on us.
God Bless,
Linda & Pat
**********************************************************************************************************************
Below was taken from Hope for Today..
January 16, 2006
When sorrow enters our world, we often feel like we have
been singled out. We believe that we are totally alone in
this dark journey, and we are scared and in need of someone
to point us to answers and a way out of our pain. We ask
ourselves over and over the timeless questions. “Why?”
“Why me?” “Why this?” “Why now?” “What did I do to
deserve this?”
While the questions are valid, there is a problem. We will
never really know the complete answers to our satisfaction.
We do know that sorrow, loss, and death come to everyone,
and we are never fully prepared for the depth of pain that
enters our heart. We are suddenly thrust into a different
world where everything is foreign to us, and nothing feels
joyful or right.
When our lives have been turned upside down by the pain of
grief, we need to anchor to something strong and secure.
We need to have strength when we no longer have enough
strength of our own. We need someone to listen to us, and
we need to know that person really cares. We need to feel
safe and secure. We need to have hope!
Hope is not pretending that there’s never any sorrow. Hope
is knowing that we will get through. Hope is hanging on
when we’d rather let go. Hope is getting up one more time
when we think we can’t move. Hope is searching for the
sunshine behind the dark, ominous clouds. Hope is trusting
God to carry us through!
If you are weary from your pain, be assured that you will be renewed. The same God who created the heavens can perform a miracle for you, too. Remember that when you ask for a simple ray of light, He holds the sun. Our best asking falls far short of His ability to give. When you place your trust in God, you have reason to hope! --Clara Hinton
“In my waiting I gain new hope!” --Clara Hinton
“Behold, God is…the sustainer of my soul.” Psalm 54:4
Monday, January 2, 2006 6:59 AM CST Today we received our weekly email from Silentgrief.com and felt the words expressed our journey into this new year (see below).
God Bless,
Linda & Pat
-----------------------------------------------------------
Taken from “HOPE FOR THE DAY” from SilentGrief.com
A new year holds personal meaning for everyone. Usually,
a lot of time is taken for some inner reflection. As the old year ends and a new year begins, most people set new goals with lots of enthusiasm and a true spirit of wanting to do better. There is an honest attempt to forget past failures and focus on the future with feelings of bright hope.
When grief has been part of your daily life, it is a real
challenge to be hopeful for a brighter new year. How do
you heal broken relationships? How do you make a more
secure financial future when beginning the new year without
a job? How do you set lofty goals when you are sinking in
a sea of depression? How do you begin to fill the hole in
your heart that has been left when your child died?
A new year does not end all past pain. A new year does not
make every wrong thing right. A new year will not restore
broken dreams. But, a new year is just that—new. It is
the marking of an opportunity to begin again.
It takes great courage to look for a miracle when your dreams have been shattered. Every person alive has a seed of hope planted within the heart that is ready to come alive if given the opportunity. Look at the new year taking it one day at a time. With the breaking of each new dawn, claim one new promise of hope. When you do, your miracle will begin
to happen! --Clara Hinton
“Every new day has the potential to give you a
miracle!” --Clara Hinton
“Let me hear Thy lovingkindness in the morning; for I
trust in thee.” --Psalm 143:8
Sunday, December 25, 2005 10:53 AM CST Pat and I are keeping busy trying to get through this first holiday without Ryan.
We dropped off some toys at the Ronald McDonald House on Friday. Pat had several (never opened) super hero toys for Ryan that he had put aside. It was hard for mom to go inside so I just waited in the car. Of course, once our friend Irma (who works and lives at RMH) learned from Pat that I was in the car she rushed out to give me a big hug.
Apparently, they used a photo of Pat holding Ryan from last year (around October) to publish in one of their mailings for the Ronald McDonald House. It was a beautiful photo, Ryan even had his beautiful blond hair… unfortunately it set us back a bit that day to see our little guy. I may post the photo sometime in the near future.
Please treasure the people in your life as none of us know when the Lord will call us home. A Christmas party, we were going to attend, was canceled on Friday because the family lost their 21 year old nephew suddenly in a car accident.
Pat and I attended service last night (Sat) after stopping by to visit Ryan at the cemetery.
His headstone looks great but since it was raining we haven’t taken a photo yet.
We will be heading to family this afternoon for dinner.
Please pray for Ryan’s buddy Carolyn who hasn’t been feeling that well lately and will be going through scans this coming week.
Carolyn’s website http://www3.caringbridge.org/va/carolyncoveney/
God Bless,
Linda & Pat
Wednesday, December 21, 2005 12:57 AM CST Pat and I are doing OK; hanging in there. We miss Ryan so very much. This year we really did very little decorating (no trees, no lights, very little shopping). Didn't even send out Christmas cards.
The holiday season has a way of reminding of us more of our loss, but most importantly the gift that Ryan was and what our Lord truly means to us all.
We received a call today that Ryan's headstone will be installed on Thursday or Friday (if the weather holds up). Apparently the monument company is extremely happy with the way it turned out; a lot of personal attention was paid to all the detail. Pat designed the headstone so we are looking forward to seeing it.
We plan on posting the picture of the headstone on Thursday or Friday. Please pray the weather holds up.
God Bless,
Linda & Pat
**********************************************************************************************************************
Below was taken from a Note of Encouragement Newsletter (by Chuck Graham) emailed to us each week.
Please be sure to read below.. it certainly had meaning to Pat and I.
May God bless you this day… to see clearly!
Each year Christians around the world prepare for the day…that special day to remember and celebrate the birth of the King. Even as the world tries to move our gaze from the manger to the mall, we prepare. Special services are planned, sermons drafted, and music rehearsed. From the youngest to the oldest, we look forward to sharing a fellowship, history, and bond that only those in the family of God can share. It is a time of rejoicing and expectation. So why is it also the greatest time for depression?
Counselors of all shapes and sizes tell us of different forms of depression, centering on two areas: the physical and the mental. There’s also a good bit of disagreement. Some see depression as a matter of brain chemistry requiring medication. Others dismiss that, saying depression is just the result of being angry with yourself. But as they argue, they miss the cause of depression that comes at this time of year.
…in the twentieth year of King Artaxerxes…the king asked me, "Why does your face look so sad when you are not ill? This can be nothing but sadness of heart." Nehemiah 2:1-2a
Sadness of the heart. This isn’t about being angry or seratonin levels dropping off. But sadness caused by the circumstances of life. Nehemiah was sad because his homeland was destroyed. It wasn’t his fault. He couldn’t have prevented it. The conquest of Israel was one of those things that happens. Kinda sounds like the cities and homes that lie in ruins after hurricanes, tornadoes, earthquakes, tsunamis, and forest fires, not to mention war, terrorism, riots, and the thoughtless, unfeeling criminal acts of others.
But sadness comes in other ways as well. There are loved ones no longer with us, and those who are dying. There are those terribly ill who struggle to save their lives and others who seem bent on destroying theirs. Many lose their jobs while others feel trapped but don’t know what to do. Money may be low or running out. Food may be getting hard to come by. Houses are taken away.
In many situations, it isn’t a matter of anger as much as intense sadness. We look to what might have been, had life not gotten in the way. Our heads tell us that sometimes things just happen, but our hearts desperately want to be happy just like our neighbors, though we fail to see they, too, struggle with what life has thrown in their path. Jesus once described this when He said, “My soul is overwhelmed with sorrow to the point of death.” God knows this “sadness of the heart”.
Many experience this during the Christmas season because it’s supposed to be a time of rejoicing. We look around and see smiling faces. Ads tell us happiness comes with presents, sitting in a cozy house, and being with family. But what if there are no presents to give or receive? What if the house is cold and dark? And what if (I know this is hard to imagine) there are self-centered jerks in the family? Depression can be deadly and so subtle that it overwhelms those who never see it coming. But there is hope.
I was very much afraid, but I said to the king, "…Why should my face not look sad when the city where my fathers are buried lies in ruins, and its gates have been destroyed by fire?"
The king said to me, "What is it you want?"
Then I prayed to the God of heaven, and I answered the king… Nehemiah 2:2b-5a
What did Nehemiah do? He acknowledged he was sad. He admitted he was afraid. He prayed to God. And he confessed what he wanted deep in his heart.
Sadness does not mean we have failed. It does not make us weak Christians. Jesus Himself was sad at times. Sadness is a natural consequence of the difficulties of life. It is a part of our character that allows us to care for others, and for ourselves. Like Nehemiah, we should admit whenever we are sad and afraid, and not hide behind some false façade. Then through prayer, we should confess all of this, especially what it is that we truly, deeply, with all our hearts want. Why? Because when we are honest with God, He guides us through our sadness and fears, leading us to the point where we can move out of sorrow and into joy. We cannot follow truth if we are not willing to face it in our own lives.
Begin this season by getting to know yourself better. As you do, God will open your eyes to see greater joy, and He will lead you to stand with those who also struggle with their own…sadness of the heart.
Sunday, November 27, 2005 9:24 PM CST Just a quick update..
Pat and I flew to Tampa to visit friends for Thanksgiving. Although the holiday season is difficult without Ryan.. it really helped for us to get away and to be with such wonderful folks (i.e. our extended family).
We arrived at their home on Thursday for wonderful feast (tons of food and deserts). On Friday we went to Orlando to see The Holy Land. Saturday we visited Father Paul Pecchie with other family members for mass and dinner afterwards. We took an early flight home today from warm Florida to a very cold Michigan.
Below was taken from a Note of Encouragement Newsletter (by Chuck Graham) emailed to us each week.
Please be sure to read below.. it certainly had meaning to Pat and I.
May God bless you this day… to see clearly!
Each year Christians around the world prepare for the day…that special day to remember and celebrate the birth of the King. Even as the world tries to move our gaze from the manger to the mall, we prepare. Special services are planned, sermons drafted, and music rehearsed. From the youngest to the oldest, we look forward to sharing a fellowship, history, and bond that only those in the family of God can share. It is a time of rejoicing and expectation. So why is it also the greatest time for depression?
Counselors of all shapes and sizes tell us of different forms of depression, centering on two areas: the physical and the mental. There’s also a good bit of disagreement. Some see depression as a matter of brain chemistry requiring medication. Others dismiss that, saying depression is just the result of being angry with yourself. But as they argue, they miss the cause of depression that comes at this time of year.
…in the twentieth year of King Artaxerxes…the king asked me, "Why does your face look so sad when you are not ill? This can be nothing but sadness of heart." Nehemiah 2:1-2a
Sadness of the heart. This isn’t about being angry or seratonin levels dropping off. But sadness caused by the circumstances of life. Nehemiah was sad because his homeland was destroyed. It wasn’t his fault. He couldn’t have prevented it. The conquest of Israel was one of those things that happens. Kinda sounds like the cities and homes that lie in ruins after hurricanes, tornadoes, earthquakes, tsunamis, and forest fires, not to mention war, terrorism, riots, and the thoughtless, unfeeling criminal acts of others.
But sadness comes in other ways as well. There are loved ones no longer with us, and those who are dying. There are those terribly ill who struggle to save their lives and others who seem bent on destroying theirs. Many lose their jobs while others feel trapped but don’t know what to do. Money may be low or running out. Food may be getting hard to come by. Houses are taken away.
In many situations, it isn’t a matter of anger as much as intense sadness. We look to what might have been, had life not gotten in the way. Our heads tell us that sometimes things just happen, but our hearts desperately want to be happy just like our neighbors, though we fail to see they, too, struggle with what life has thrown in their path. Jesus once described this when He said, “My soul is overwhelmed with sorrow to the point of death.” God knows this “sadness of the heart”.
Many experience this during the Christmas season because it’s supposed to be a time of rejoicing. We look around and see smiling faces. Ads tell us happiness comes with presents, sitting in a cozy house, and being with family. But what if there are no presents to give or receive? What if the house is cold and dark? And what if (I know this is hard to imagine) there are self-centered jerks in the family? Depression can be deadly and so subtle that it overwhelms those who never see it coming. But there is hope.
I was very much afraid, but I said to the king, "…Why should my face not look sad when the city where my fathers are buried lies in ruins, and its gates have been destroyed by fire?"
The king said to me, "What is it you want?"
Then I prayed to the God of heaven, and I answered the king… Nehemiah 2:2b-5a
What did Nehemiah do? He acknowledged he was sad. He admitted he was afraid. He prayed to God. And he confessed what he wanted deep in his heart.
Sadness does not mean we have failed. It does not make us weak Christians. Jesus Himself was sad at times. Sadness is a natural consequence of the difficulties of life. It is a part of our character that allows us to care for others, and for ourselves. Like Nehemiah, we should admit whenever we are sad and afraid, and not hide behind some false façade. Then through prayer, we should confess all of this, especially what it is that we truly, deeply, with all our hearts want. Why? Because when we are honest with God, He guides us through our sadness and fears, leading us to the point where we can move out of sorrow and into joy. We cannot follow truth if we are not willing to face it in our own lives.
Begin this season by getting to know yourself better. As you do, God will open your eyes to see greater joy, and He will lead you to stand with those who also struggle with their own…sadness of the heart.
Monday, November 7, 2005 9:21 AM CST Below is taken from
"HOPE FOR THE DAY” from SilentGrief.com
http://www.silentgrief.com
-----------------------------------------------------------
Losing somebody we love is terribly difficult. It leaves
us feeling all mixed up—almost like we’re going crazy.
For a while, when the grief is so new and the pain is so
raw, our world feels like everything has been turned upside
down. We can’t see straight, much less think straight.
The worst thing of all is the feeling we get from being
separated from the one we love. We suddenly become
acutely aware of everything about living—the common
sounds of dishes clinking in the sink, water running in the
shower, and the happy chatter of people laughing and
talking. We miss every noise, every smell, and every touch
that made life feel warm and happy when the one we
loved was alive. When we lose a person we love, our
hearts fill with an ache that we never knew existed.
It takes a long time to adjust to the loss of someone close. There’s no reason to apologize if we’re having a particularly emotional moment and we are reduced to tears long after our loved one has died. Grief comes back often to visit.
It takes courage and time to find our place in life following the death of someone we love. The path we are now traveling feels bumpy and full of obstacles. We have been given a special gift, though, to help carry us through. That gift is hope. Hope promises us strength enough for today. Hope gives us purpose to go on. Hope sends a ray of sunshine just when we need it the most. Hope reassures us that with every new sunrise there is a brand new day welcoming us. Hope reminds us that step-by-step we are walking out of
the dark! --Clara Hinton
“When I asked for a ray of light, God gave me the sun to
light up my entire universe.” --Clara Hinton
“This is what the Lord says—‘I have summoned you by
name; you are mine.’” –Isaiah 43:1
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Sunday, Oct 30, 2005
There is a story regarding the heart cloud Ryan sent us (see above).
This past week we received a precious gift from Ryan’s friend Carolyn. Ryan used to play with Carolyn while we were living at the Ronald McDonald House in New York City. Carolyn would always kiss the top of Ryan’s bald head.
This past August, Carolyn’s mom Jen, bought some hearts with names on them for Carolyn while she was in the hospital. Jen also purchased 2 hearts to send to Pat and I as well. One of the hearts had “Ryan” on it and the other heart had “Forever and Ever”. Jen connected the 2 hearts and showed the hearts to Carolyn.
When Carolyn saw Ryan’s hearts she immediately took the one with her name and joined it to Ryan and Forever and Ever. Carolyn kept the 3 joined hearts by her bedside while in the hospital and now they are on her bedside table at home. According to her mom.. Carolyn looks at the hearts each night and kisses them.
We received the other set of joined hearts last week, along with Jen’s note about the story behind the 3 joined hearts. Pat and I were very touched. Carolyn made the hearts even that more special. She is one very special child whom we love very much!
So about the heart cloud..
Pat was taking a walk a day or so after we received the package with the hearts. Pat was praying and thinking of Ryan when the clouds suddenly broke and the sunshine came through. This made Pat look up, and after what he saw, Pat found himself scrambling for his camera phone.
Ryan must have really liked the hearts that Carolyn had sent, because he sent her back one of his own.
Sunday, October 30, 2005 2:58 PM CST Update as of Wed, Nov 2, 2005
We left town the night of Halloween and stayed at a hotel. It was just too painful to be home as we have tons of kids in our neighborhood. So many kids on Halloween, in our neighborhood, that they can be lined up down your driveway waiting for candy.
Please pray for our strength as it is so hard for us during this time. Ryan's 3rd birthday, Halloween and upcoming holidays.. makes not having Ryan around EXTREMELY painful.
God Bless,
Linda & Pat
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Sunday, Oct 30, 2005
There is a story regarding the heart cloud Ryan sent us (see above).
This past week we received a precious gift from Ryan’s friend Carolyn. Ryan used to play with Carolyn while we were living at the Ronald McDonald House in New York City. Carolyn would always kiss the top of Ryan’s bald head.
This past August, Carolyn’s mom Jen, bought some hearts with names on them for Carolyn while she was in the hospital. Jen also purchased 2 hearts to send to Pat and I as well. One of the hearts had “Ryan” on it and the other heart had “Forever and Ever”. Jen connected the 2 hearts and showed the hearts to Carolyn.
When Carolyn saw Ryan’s hearts she immediately took the one with her name and joined it to Ryan and Forever and Ever. Carolyn kept the 3 joined hearts by her bedside while in the hospital and now they are on her bedside table at home. According to her mom.. Carolyn looks at the hearts each night and kisses them.
We received the other set of joined hearts last week, along with Jen’s note about the story behind the 3 joined hearts. Pat and I were very touched. Carolyn made the hearts even that more special. She is one very special child whom we love very much!
So about the heart cloud..
Pat was taking a walk a day or so after we received the package with the hearts. Pat was praying and thinking of Ryan when the clouds suddenly broke and the sunshine came through. This made Pat look up, and after what he saw, Pat found himself scrambling for his camera phone.
Ryan must have really liked the hearts that Carolyn had sent, because he sent her back one of his own.
Saturday, October 22, 2005 1:32 PM CDT Pat and I want to thank everyone for reaching out to us during this difficult time. Your cards, phone calls, emails, mass cards, guest book entries, etc.. were appreciated. Thank you Sharon.. for taking us out to dinner on what would have been Ryan's 3rd birthday.
So many folks released balloons and had cupcakes on Ryan’s birthday.. it helps Pat and I to know that our little guy is still being remembered. We also know that Ryan was looking down from Heaven smiling at all of us on this day.
Pat and I still cry each and every day and wish so much that Ryan was here with us but we also know, as hard as some days are, we must somehow go on. Today I came across Ryan's pictures from the day he was born it is so very painful.. I miss Ryan so much!
This past week we watched my two nieces (Tina & Becca) while their parents (Rich & Helen) were in Vegas; business trip for Rich. They live about an hour from where we live near Romeo, Michigan. The girls were great and we enjoyed spending time with them. Pat even took Becca to a movie to see Wallace and Gromit.
Pat also went to Stoney Creek Metro Park, across the street from their sub, for some exercise while the girls were at school. I was busy studying for two tests and working on a paper that was due on Friday; I had returned back to school for nursing. Currently finishing up my last two prereqs (Microbiology, etc ). I am applying this week to get into the nursing program which starts in January ’06. Only 30 students are accepted each Winter and Fall.
This month two more children (Madison and Michael), one of whom we met while in New York City, passed away from neuroblastoma (NB). Michael, who fought bravely for seven years, passed away this week.
We ask for your prayers for these families, as they enter a difficult time, without their children. We ask also that you please pray for our continued strength.
God Bless,
Linda & Pat
P.S. Ryan's good buddy carolyn, a NB survivor, will be participating in a charity Fun Run for the Ronald McDonald House of New York City. While in NYC for Ryan's treatment we spent 6 months at this Ronald McDonald House.
If you wish to donate to this wonderful cause, please go to
Carolyn's website noted below.
http://www3.caringbridge.org/va/carolyncoveney/
Friday, October 14, 2005 HAPPY BIRTHDAY RYAN! WE LOVE AND MISS YOU VERY VERY MUCH.
LOVE, MOMMY AND DADDY
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Thursday, October 13, 2005 9:45 PM CDT
As many of you I'm sure are aware; tomorrow would have been Ryan's 3rd birthday, so we're really feeling the loss especially hard this week. So if you think that you, or your kids might be into it; give them a cupcake tomorrow ( Ryan loved cupcakes the most on his birthday ), blow some bubbles up towards the sky ( chasing bubbles was one of his favorite activities ), light a candle, or maybe release a couple of balloons with notes to Ryan either written on them, or tied to them. He would want us to be happy on his birthday, so go have some fun.
If you can spare any other prayers send them along to Mom & Dad; we could sure use them, Thanks again.
Linda & Pat
Tuesday, October 11, 2005 9:57 AM CDT A wonderful way to help out...
Today through next Sunday (October 16) is the annual Volvo for Life Days promotion—for every test drive taken during the promotion, Volvo will donate $20 to Alex’s Lemonade Stand for pediatric cancer research.
Last weekend I attended a religious conference for Woman in Grandville (near Grand Rapids, MI) on Friday and Saturday morning. The conference was spirit filled and uplifting. Pat kept busy while I was at the conference with friends. On Saturday evening Pat and I got together with Doug, Cheryl and Brent (my brother, sister-in-law and nephew) for dinner. Doug and Cheryl live in North Muskegon. It was good for us to get away for the weekend.
Through the grace of God.. we are getting through each day but miss Ryan so deeply. Our hearts ache in his absence. Ryan’s 3rd birthday would have been this Friday, Oct 14. We had so many hopes and dreams for our son. Ryan gave us so much joy for the short time he was here on this earth. Pat describes it best "with Ryan God has given us a glimpse of Heaven".
Ryan was on birthday lists for toy stores that we have gotten several reminders in the mail. It was hard to contact these folks to have his name removed from their lists.
Pat and I plan on putting balloons out at his site and releasing other balloons as a tribute to Ryan on Friday. We are also having service said on Ryan’s behalf on his birthday. Unfortunately the headstone won’t be in place by his birthday.
We ask for your prayers during this difficult time.
Linda & Pat
P.S. Please check out Ryan's friend Carolyn's site (see below).
Carolyn has had a difficult time since Ryan and another young boy (Brice) passed. Be sure to keep Carolyn and her family in your thoughts and prayers.
http://www3.caringbridge.org/va/carolyncoveney
Monday, October 3, 2005 10:19 AM CDT “Hopeless is not a word in God’s vocabulary.” --C. Hinton
“Be still and know that I am God.” --Psalm 46:10
Time is going by but the grief still lingers. Some days are harder than others. Like this morning when we came accross his birth announcement.
I don’t think Pat and I will ever be the same (or any parent who has lost their child) but with our faith we have comfort that the Lord is carrying us through our pain. Although we miss Ryan so much.. we hang on to the belief that God had a special plan for Ryan which Pat and I will learn when we join Ryan in Heaven some day. I can’t imagine where we would be without our faith.
It is amazing how the photo of Ryan on this page looks so real. I often feel I am looking right at Ryan and kiss his photo often. I am so grateful to our good friend, Maureen, for taking this photo.
Most of Ryan’s furniture, toys, etc, is in storage. We will probably wait until next summer to go through all of it; it would be too painful right now. As you can imagine Ryan was pretty spoiled and his toys took over most of our house. Pat did go to the storage facility this weekend to drop off a check and I sensed he would take a peek (sure enough he did). Of course it was bittersweet.
We are still keeping pretty busy with various things. School started this past week so it’s back to the books for me; lots of reading to do, papers, etc.
Saturday we had dinner at my brother and sister-in-law (Rich and Helen). Chef Rich enjoys cooking and definitely excels at it. He always has some new gourmet dish for us to try. Always delicious!
On Sunday afternoon Pat and I went kayaking at the Mill Pond (only a few blocks from our home) which flows into a river. The weather was so warm we thought we would take advantage of it. We have 2 single kayaks so as you can imagine Pat is always ahead of me.
Next Friday I will be heading over to the west side of the state with 3 friends to attend a religious conference for woman (Joyce Meyers).
We appreciate your reaching out to us. Thank you for your kind thoughts and prayers.
October will be a very difficult month (Ryan's would have celebrated his 3rd birthday on Oct 14) we ask that you please keep us in your prayers for strength during this Winter Season in our lives.
God Bless,
Linda & Pat
Monday, September 26, 2005 8:53 PM CDT It is hard to believe we are coming up on 3 months already since Ryan passed. Pat and I are doing as best as we can. We are keeping busy but there isn’t a day that goes by that we don’t shed a tear over Ryan; we miss him so very much.
Pat and I already knew about loss, as our mothers passed when we were both in our teens, but this is different and much more painful. However, our faith has been a continued source of strength for us so we keep digging into our faith.
Since returning from our vacation we’ve been getting together with friends for dinner dates, etc. We are blessed that friends are reaching out to us. Yesterday we went to a Tiger’s Game and they actually won!
My friend Mary and I were counselors on Friday at a revival this past weekend at the Palace (Just Give Me Jesus). Pat and I returned on Saturday in the afternoon for the bible study.
This week I start up school again (finishing my nursing prereqs) and Pat is looking for work.
October will be a difficult month as Ryan would have turned 3 on Oct 14 also Halloween was something Pat always looked forward to with Ryan. Please keep us in your prayers for continued strength during this Winter season in our life.
Linda & Pat
Monday, September 12, 2005 1:58 PM CDT "The good men perish; the godly die before their time, and no one seems to care or wonder why. No one seems to realize that God is taking them away from evil days ahead. For the godly who die shall rest in peace." Isaiah 57:1,2 TLB
Aloha! Pat and I just returned on Saturday from a trip to Hawaii. We stayed in Waikiki Beach on the island of Oahu for 3 nights then flew to Kauai where we stayed for a week. We are very grateful to my brother and sister-in-law (Rich and Helen) who gave us their timeshare to use. Family/friends also used their points to purchase our airline tickets.
The trip was to celebrate our 10 year wedding anniversary (10/21) and for a much needed get away. Hawaii was certainly beautiful but the trip was bittersweet for both of us as we would often think of Ryan. Or folks whom we met would ask “Do you have any children”? We really needed this trip but found it difficult to do nothing so we kept busy.
We did a lot of walking, took a catamaran cruise around the coast of Kauai (saw dolphins and turtles), went kayaking, snorkeling, took a water color class and of course took in a Luau. We also visited a few churches. For Ryan’s birthday (he would have turned 3 on Oct 14) a mass will be celebrated in memory of him at a church in Waikiki Beach and Kauai. We certainly seen a good number of toads, frogs (Ryan liked his toy frogs) and wild chickens while in Kauai.
With the 6 hour time difference and 3 flights to get back we definitely have a bit of jet lag to get over. Please don’t take this the wrong way (we certainly don’t have a death wish) but while flying back we realized that we have no fear of death because it would only mean we would see our son Ryan. It is really a sense of peace we have experienced with our faith.
It was good to see our puppy Yoda! He has gotten so much bigger since we left. Yesterday we went to church service and visited Ryan’s grave. His headstone should be ready sometime in October. We will be sure to post pictures on the website at that time. We also hope to invite friends/family to a balloon launch for Ryan when that time comes.
It helps us to know that Ryan is still being remembered by so many. A wonderful friend, Chris, whom we got to know while in NYC recently ran a ½ marathon in Central Park in honor of Ryan. Chris worked very hard in helping us to get the word out (throughout the world) of Ryan’s need for prayer. It is amazing how many folks Chris reached as we still receive letters and mass cards in the mail (forwarded by Chris) as well as from other folks who have reached out to us.
I received several books on grief from friends/family after Ryan passed and purchased some as well. I found some of the books very helpful and will be sure to list the books, on the website at some point, for other angel parents. The scripture listed above (from Isaiah) was taken from one such book "Mourning to Morning" by authors Harry and Cheryl Salem (parents who lost their daughter, Gabrielle, to cancer).
OTHER BOOKS ON GRIEF
* Gone But Not Lost by David W. Wiersbe
Could not put this book down and finished reading the same day.
* Embraced by the Light
by Betty Eadie
This book is about the authors own experience with death (brought back from death after several hours).
Not my favorite. I did not gain any comfort from reading this book.
Thank you for checking in on us.
God Bless.
Linda & Pat
P.S. If you reside in Michigan you may be interested in attending an upcoming spiritual revival at the Palace of Auburn Hills which will be held on Friday, Sept 23, 7-9 pm and Saturday, Sept 24, 8:30 am – 5 pm.
After Ryan passed a good friend approached me about attending training sessions with her to help out at this wonderful event. The purpose of this event (Just Give Me Jesus), featuring Ann Graham Lutz (Billy Graham’s daughter) is to draw us into a fresh personal relationship with our God and Savior.
Thursday, August 25, 2005 11:23 AM CDT Update as of Sunday, Aug 28, 2005 1:22 PM
Check out the latest issue of People Magazine on page 85. Dylan, a young boy also suffering from Neuroblastoma was shown in an article with Nicole Kidman.
Dylan and his parents traveled from Australia to NYC to seek treatment at Memorial Sloan Kettering Cancer Center. We met Dylan and his parents (The Hartung Family) while Ryan was receiving treatment. They, like us, reside at the Ronald McDonald House on the Upper East Side of Manhattan.
Hopefully this will article, amoung others with Dylan (US magazine, etc), will focus attention on this horrible cancer.
www.caringbridge.org/me/dylanhartung
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Pat and I are hanging in there. There is just no way of avoiding grief; you just have to go through it one day at a time. How I wish I could have Ryan back in my arms again. It is so hard some days as everything we see and hear can remind us of Ryan (going to a store and seeing a book Ryan loved for me to read to him or Pat accidentally finding a wish list of things (toys, etc) he wanted for Ryan).
We miss the joy he gave us.. Ryan was such a happy little guy even with everything he endured. Pat and I go to grief counseling once a week and learned that if you try to suppress the grief you will be in the same place 2 years from now. In our hearts we know that Ryan is in Heaven.. free of illness and is experiencing only pure joy.
Pat attended a men’s retreat last weekend which was very helpful for him. The men were all very supportive. Many friends/family sent Pat letters of support (which he received at the retreat). The letters were a wonderful surprise for him. I also sent Pat a letter and felt the Holy Spirit truly guiding me.
We go to church service 2x a week which helps us both so much. Wednesday night is more like a bible study since it is for deep believers in Christ (we reference our bibles throughout the service). Last night the pastor discussed the Book of Job. We walked out of Wednesday night service thinking.. Wow.. how relevant this was for us to hear at this time.
The pastor spoke about how Job went through a Winter in his life; as all folks will experience sooner or later in different ways. He also talked about how there is a stage on Earth and also a stage in Heaven.. where things are being played out. If we only knew what was happening on the Heaven stage the Winter we are experiencing would make so much more sense to us. The pastor ended the service with a message to “Hold On” and continue to believe in God’s goodness and plans for all of us... that we shall see Summer again as Job certainly did.
Pat and I have been blessed by friends and family who continue to reach out to us.
We have a pretty full calendar these days and don’t know where the time is going.
Your emails, phone calls, cards, guest book entries, etc.. are appreciated.
God Bless,
Linda & Pat
P.S. Please keep Jacob and his family ( Duckworth Family ) in your prayers at this time. We were blessed to meet this family at Memorial Sloan Kettering. Jacob has been given only a few days.
Also.. please pray for Christi Thomas and her family. Christi, like Ryan, relapsed with Neuroblastoma. We met this wondeful family (aka The Thomas Team) at a Neuroblastoma Conference.
Christi's Site:
http://www.christithomas.com/journal.html
Jacob's site:
http://www2.caringbridge.org/fl/jacob/
Thursday, August 17, 2005
Waiting For You
I'm sending you this message just to say, I'm safe here in heaven to run and play.
The Angels watch over me all of the time, The biggest one here is mine, All mine.
There's so much here to see and do,
My only wish is that you were here too.
Don't worry about me or think I'm alone, Jesus has been with me, since I've been gone.
We sat by a river that is crystal clear, He said no one here ever shed's a tear.
I told Him of you and all the fun we had, He just smiled and said, "don't be sad,
For someday soon you'll see her again,
But until then I will be your friend."
So when you miss me, please don't be blue, I'm just playing in heaven, waiting for you.
Update as of Wed Aug 10, 2005
Just a quick note.
Pat and I want to thank you for the kind notes, emails, etc. We are doing OK.. the time certainly has been flying by.
Although, Pat and I are taking time off to de-stress and adjust/grieve our schedules seem to be pretty busy. I have to keep track of everything on a calendar.
We do have a new puppy (1/2 maltese and 1/2 toy poodle) named YODA. He is very cute and very small; should weight no more than 6 lbs. Having a puppy around makes the house seem less empty. Also it helps to have a puppy to take care of as we are so used to putting all our effort (24/7) towards taking care of Ryan; it has been a difficult adjustment for us.
Pat designed Ryan's headstone. It should be a beautiful tribute; one of a kind. Of course Elmo will be sandblasted on one side of the headstone blowing bubbles. It should be ready early Oct and I will post a photo on the website. We also purchased a granite bench so folks are able to sit when they visit Ryan.
We plan on keeping the website going (for how long we aren't sure).
God Bless..
Linda & Pat
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Trials are not enemies of faith, but are opportunities to prove God's faithfulness.
– Unknown
Although we certainly have our rough moments/days the Lord is certainly with us and helping us tremendously through our grief.
We also feel the many prayers surrounding us during this time.
Thank you for reaching out to us!
Linda & Pat
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"Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief."
Psalm 31:9
Yes, we are still here. Things are day-to-day for us. Some days are okay; others we can barely
stand to get out of bed because the pain is so bad.
We allow ourselves the chance to cry once a day; at least. We are keeping busy (walking, biking, visiting friends/relatives, etc) but you can not escape grief as it quickly catches up with you.
Yesterday, being one month, was a difficult time for us. Obviously we know that Ryan is far better off now than he could ever be with us ( Jesus will see to that ), but it's still so hard to imagine our future without physically having him here. We miss him so very much it is like your heart is cut in half.
One can't love a child that much & not miss him or grieve hard. We have to believe that we'll have quite the reward waiting for us one day; being able to spend an eternity with our Lord & Ryan; just continue to pray that we find the wisdom, patience & peace that it will take Linda & I to finish our journey here.
I know that it will be worth the wait in the end & that Ryan will always live on in our hearts & minds. A life of purpose, grace, joy, faith, & compassion would be a testimony in itself to the legacy Ryan has left behind for us all.
Ryan has also been announcing himself to various people through signs such as frogs, rainbows, feathers, pennies, & now monach butterflies; so keep your eyes peeled if you find yourself thinking about him. We certainly don't plan on disappointing Ryan in promising him ( & God ) a reunion in heaven one day. We all owe him at least that much.
We did get a puppy as well; it's a Malti-Poo, a half Maltese-Toy Poodle hybrid. His name is Yoda. His weight should top out at 5-7 pounds; he's a little one. We ask you again to please continue to pray for Ryan and for us as we begin our journey without him by our side and thanks so much to all of you for your love, prayers and support in the past, present, & future. We certainly can use it.
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Our plans are still to establish a memorial to celebrate
Ryan's life.
Donations would be
greatly appreciated to the
Ryan Connolly Fund
(see below)
The State Bank
Attn: Ryan Connolly Fund
175 N. Leroy
P.O. Box 725
Fenton, MI 48430
Thank you!
Pat & Linda
P.S. If you wish to send the Connolly Family a card via US Mail please send to:
Linda & Patrick Connolly
750 Second Street
Fenton, MI. 48430
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Thursday, June 30, 2005 4:59 AM CDT Prayer for Trust in Jesus
O Christ Jesus,
when all is darkness
and we feel our weakness and helplessness,
give us the sense of Your presence,
Your love, and Your strength.
Help us to have perfect trust
in Your protecting love
and strengthening power,
so that nothing may frighten or worry us,
for, living close to You,
we shall see Your hand,
Your purpose, Your will through all things.
- St. Ignatius of Loyola
Does God Heal Today?
By Robert Kolar, a believer in miracles.
I've heard people say "It's God's will" or "I'll just leave it up to God" when faced with a serious illness or tragedy. Don't fall into that trap. God wants us to pray to him for help. In Luke 18:1 Jesus told his disciples that they "should always pray and not give up." and then Jesus asked "...will not God bring about justice for his chosen ones, who cry out to him day and night?" Pray to God from your heart for healing. Don't stop. Don't give up. God wants us to ask him for help. He loves us.
Over 20 percent of the Gospel is about the healing ministry of Jesus Christ. Jesus taught his disciples how to pray and heal. He sent them to carry on his work. Wouldn't Jesus want his followers to pray for healing today?
Not much has changed since our last update..
Ryan is still in a lot of discomfort as his abdomen is pretty distended. Ryan’s liver and possibly spleen is enlarged and pressing against his ribcage which makes his breathing more labored. We give Ryan narcotics (Dilaudid) for pain which is also giving him constipation (also treating him with meds for this) and the list goes on. He has had fevers but not as frequent or as high as in the past. Even through he is on anti-nausea drugs.. Ryan has only wanted milk to drink (for some time) so he certainly ihas lost a great deal of weight. We recently added some whipping cream to his milk which is helping a bit. He has also required blood and platelet transfusions this week since his counts are now falling from the chemo he had the prior week. We anticipate being inpatient over the holiday weekend.
While many days are extremely difficult for us.. we find our only strength through prayer.
We ask that you please continue to join us in prayer for God’s promises.
Please take the time to sign Ryan's website.
God Bless,
The Connolly Family
IMPORTANT ***************************************
WE ASK THAT YOU PLEASE ALSO INCLUDE IN YOUR PRAYERS....
Tim Schroeder who is a Master At Arms in the Navy.(thats the same thing as a policeman) and he also is a dog handler. His dog's name is Emo. He and Emo will be deployed to Iraq on August 15 for 6 months. All prayers and thoughts for all our men and women doing a very difficult and dangerous job are needed as they continue to keep our Nation a free land and also the freedoms of all God's Children that have been deprived of such for so long!!
Friday, June 24, 2005 6:03 PM CDT
2 Corinthians 1:10-11
'On Him we have set our hope that he will
continue to deliver us, as you help us by your prayers.'
Ryan’s finished his chemo on Thursday.
Today we returned to the hospital so he
could be given anti-nausea meds which
stay in his system for 24 hours. Unfortunately
he ran a slight fever when we first arrived
but it seems to be under control now.
We spent the day at the hospital as Ryan
had some nausea and had thrown up. So
we kept him in to insure he received hydration.
I can't say enough about how wonderful
the staff (nurses, doctors, etc) have
been at NY/Columbia/Presbyterian..
we are blessed!
Ryan’s stomach was very distended,
due to his enlarged liver, which pains
us to see. How we miss his running around
playing, etc.. as he pretty much rests
in bed.
Ryan is very constipated again,
probably due to narcotics, which is
causing some of the
distention in his abdomen. We doubled
the dose on the stool softener which is
helping. We return to the Ronald McDonald
House each evening and pretty much stay
put to insure Ryan is comfortable.
Many days are very exhausting physically and emotionally.. but we keep pressing on physically and in faith. Your prayers help
Ryan and us so much.
Please pray that we see good results from the treatment this week!
God Bless,
The Connollys
P.S. Please take the time to sign Ryan's guestbook.
************************************************************************************************************************************************************
Please pray very hard for the following:
• That God provides us with a Miracle for Ryan’s complete healing
And removes all cancer from his body
• That his liver will be made as new
• That Ryan’s LDH and all blood markers return to normal levels
• That Ryan has no side effects or complications from treatment
• That God provides guidance to the medical staff
• That Ryan endures no pain or discomfort
• Lastly pray for us parents who certainly need strength during this battle
Thank you for your continued support and prayers. We are amazed to see how prayers are spanning the globe for our little hero.
Please keep praying for Ryan’s MIRACLE which so many will be a witness to.
********************************************************************************************************
PLEASE PASS THE WORD ON FOR RYAN’S NEED FOR PRAYERS…
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our prayers for Ryan’s healing LOUD and CLEAR.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Pat and I really appreciate the wonderful cards, emails, guestbook entries, gifts for Ryan, and Prayers. Thank you for reaching out to our family during this time.
God Bless,
The Connolly Family
(Pat, Linda & Ryan)
IMPORTANT ***************************************
PLEASE ALSO INCLUDE IN YOUR PRAYERS
Tim Schroeder who is a Master At Arms in the Navy.(thats the same thing as a policeman) and he also is a dog handler. His dog's name is Emo. He and Emo will be deployed to Iraq on August 15 for 6 months. All prayers and thoughts for all our men and women doing a very difficult and dangerous job are needed as they continue to keep our Nation a free land and also the freedoms of all God's Children that have been deprived of such for so long!!
Tuesday, June 21, 2005 1:06 AM CDT
Update as of Tuesday 5:30 PM
"When one door closes.. God opens up another one"
After a consult with Dr Bender and Dr Yamashiro yesterday afternoon (at NY/Columbia/Prebyterian) we decided to move ahead and try a chemo agent (Doxirubin). We pray that the chemo will get Ryan's disease unter control so other options would open up for him. Ryan was NOT put on a phase 1 trial.
We are currently at NY/Columbia/Presbyterian.
The staff here has been wonderful. We arrived early this AM so Ryan could first receive red blood and an echocardiogram. Once the echo was cleared by the cardiologist Ryan was allowed to have chemo.
Ryan just finished receiving this chemo agent that he has had in the past (over 6 to 7 months ago). Ryan's liver is quite large on his right side and is pressing quite a bit on his ribcage making him pretty uncomfortable... so please pray for immediate results (from the great physician above). We will still utilize Memorial Sloan Kettering for bloodwork, etc as both institutions agreed to working together for Ryan's best interest.
While Ryan's stay inpatient at Memorial Sloan Kettering would overlook the East River; upper east side of Manhattan. Today Ryan's bed looks out onto the Hudson River located on the West Side of Manhattan (a beautiful view).
Please join us in agreement for Ryan's miracle.
God Bless,
The Connolly Family
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"Watch for the new thing I am going to do.
It is happening already,
you can see it now!" -- Isaiah 43:19
Ryan has had a fever since last Thursday. However, since the NB team at Memorial Sloan Kettering were pretty certain it was probably related to tumors they did not have us stay inpatient. Ryan has had these so called "tumor" fevers every week for some time now and we have had to stay inpatient for several days for the past 2 to 3 months. The team did take cultures, from his ports, to make sure there are no infections.
Since we did not have to stay inpatient our friends picked us up and took us to Bridgewater, NJ to meet up with my brother and sister-in-law (Rich & Helen) for the weekend. It was so great to see family. We all got together at our friends (The Murphy family) for dinner Saturday night. Ryan pretty much rested during the entire weekend. We also had to watch Ryan closely and medicate him for pain and fevers every 4 hours.
Ryan did require platelet transfusions 2x last week so we were asked to go to urgent care on Saturday (before traveling to New Jersey) to check his blood count. Fortunately (Thank you God!) his platelets were up and even climbed to over 100k today!
Most of the staff at Sloan felt Ryan would be transfuse dependent so we were so happy to learn today his platelets are recovering. Proof to the power of Prayer.. Thank you God and Prayer Warriors!
His blood counts (platelets, etc) being over 100K will hopefully allow Ryan to qualify for a phase 1 trial at NY/Columbia/Presbyterian. So we are off to NY/Columbia/Presbyterian to meet with their oncology group on Tuesday afternoon. We pray they will have a treatment plan for Ryan. We pray (and ask for your prayers) that a treatment will start ASAP as Ryan has discomfort from his liver pushing against his Rib Cage on his right side.
Please continue to pray for Ryan.. that God gives us a Miracle for Ryan’s complete healing.
God Bless!
The Connolly Family
** Ryan was in the News
Please check out the link regarding an article about Ryan's need for Prayer in a Michigan newspaper.
We would appreciate if folks could add their name to the list for continuous prayer.
http://www.mlive.com/news/fljournal/fenton/index.ssf?/base/news-1/111928084361090.xml
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Please pray very hard for the following:
• That God provides us with a Miracle for Ryan’s complete healing
And removes all cancer from his body
• That his liver will be made as new
• That Ryan’s LDH and all blood markers return to normal levels
• That Ryan has no side effects or complications from treatment
• That God provides guidance to the medical staff
• That Ryan endures no pain or discomfort
• Lastly pray for us parents who certainly need strength during this battle
Thank you for your continued support and prayers. We are amazed to see how prayers are spanning the globe for our little hero.
Please keep praying for Ryan’s MIRACLE which so many will be a witness to.
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PLEASE PASS THE WORD ON FOR RYAN’S NEED FOR PRAYERS…
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our prayers for Ryan’s healing LOUD and CLEAR.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Pat and I really appreciate the wonderful cards, emails, guestbook entries, gifts for Ryan, and Prayers. Thank you for reaching out to our family during this time.
God Bless,
The Connolly Family
(Pat, Linda & Ryan)
Tuesday, June 14, 2005 6:43 PM CDT Update as of Monday, June 20
Please check out the link regarding an article about Ryan's need for Prayer in a Michigan newspaper.
We would appreciate if folks could add their name to the list for continuos prayer.
http://www.mlive.com/news/fljournal/fenton/index.ssf?/base/news-1/111928084361090.xml
God Bless,
Connolly Family
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Update as of Thursday, June 16
“Then Jesus called together the Twelve (apostles) and gave them power and authority over all demons, ant to cure disease. And He sent them out to announce and preach the kingdom of Goad and to bring HEALING” Luke 9:1-2
Pat left for the hospital/clinic with Ryan early this morning and I will be leaving the Ronald McDonald House in a few minutes to join them.
As you stop at view Ryan’s site today..
PLEASE say a prayer for Ryan at this VERY moment.
Please Pray his LDH goes down substantially, that all of Ryan’s blood markers are at normal levels. Pray that Ryan’s liver is responding to the current chemotherapy. That God, the great physician, will heal Ryan’s entire body of this horrible cancer. That God will grant us a Miracle for Ryan.
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“O Lord my God, I called to You for help and You healed me” – Psalm 30:2
We left the hospital late last Saturday evening and went to Jersey for a quick getaway to visit our great friends (The Murphy Family). Pat and I were advised, by another good friend, to leave the city for our sanity even if it is for only a few days. We were only 45-50 minutes away from the hospital so we felt it was safe to go.
On Sunday we had a wonderful visit from Ryan’s prayer aunts Sylvia, Julie and Marianne (from Allentown, PA). These ladies are extraordinary folks; certainly a blessing from God and we consider them to be a part of our extended family. They lifted our spirits that day.
Ryan’s Aunt Julie also made Ryan a beautiful prayer pillow which has a pocket for prayer cards, etc. As I have written in past journal entries that Ryan loves to play with frogs. I was informed by these ladies that FROG stands for “Fully Relies On God” .
Ryan has not had a fever for days so we pray that the new chemo they used is working.
His oncologist was happy to hear that his fevers subsided. Ryan’s platelets were pretty low (20) on Monday so he required a transfusion. His White Blood Count seems to be dropping (due to the chemo last week) so please pray that his counts start to head upwards. Pat and I do not feel like the liver has grown since starting the chemo last week but we certainly can feel his liver and pray that it shrinks back to normal soon!
We are thankful to God that Ryan’s LDH dropped substantially. Although Ryan’s LDH was still very high around 2500 on Monday (normal is somewhere below 200) only a few days prior his LDH was close to double Monday’s level.
Ryan seemed to be in some discomfort since last night, so he is being treated with some pain meds. Is it his enlarged liver, constipation, etc.. causing him discomfort? we aren’t always sure what is making him uncomfortable. So we try to use caution when treating Ryan with pain medication as they can cause side effects which will also give Ryan discomfort (such as difficulty urinating, constipation, etc).
A decision will be made on Thursday as to whether the new chemo, started a week ago, is working. If the chemo is not helping we plan on going to New York/Columbia/Presbyterian for a phase I study.
Please pray very hard for the following:
• That God provides us with a Miracle for Ryan’s complete healing
And removes all cancer from his body
• That his liver will be made as new
• That Ryan’s LDH and all blood markers return to normal levels
• That Ryan has no side effects or complications from treatment
• That God provides guidance to the medical staff
• That Ryan endures no pain or discomfort
• Lastly pray for us parents who certainly need strength during this battle
Thank you for your continued support and prayers. We are amazed to see how prayers are spanning the globe for our little hero.
Please keep praying for Ryan’s MIRACLE which so many will be a witness to.
FYI
I was contacted today by a writer from a newspaper back in Michigan. The writer learned that a 24 hour X 7 day prayer vigil was currently going on for Ryan. She plans on expressing Ryan’s continued need for prayer to the neighboring communities.
PLEASE PASS THE WORD ON FOR RYAN’S NEED FOR PRAYERS…
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our prayers for Ryan’s healing LOUD and CLEAR.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Pat and I really appreciate the wonderful cards, emails, guestbook entries, gifts for Ryan, and Prayers. Thank you for reaching out to our family during this time.
God Bless,
The Connolly Family
(Pat, Linda & Ryan)
Monday, June 6, 2005 4:39 PM CDT PLEASE PRAY FOR RYAN..
Update as of 1 AM Sat morning
Just a quick note..
Ryan is still inpatient at Memorial Sloan Kettering. Ryan's fevers are not as frequent only 2 short lived fevers in the past 24 hours. We pray this is God's miracle in action. Ryan's liver has grown quite a bit in the past week
this is certainly upsetting for Pat and I; as we can actually feel the liver.
Ryan has had some nausea so we are currently giving him 2 anti-nausea drugs. We really need to get him to eat as he has lost a good amount of weight; especially in his legs and arms. He pretty much stays in the bed and hasn't walked for some time now.
Ryan has been extremely clingly to me (mom) and will not let me leave his sight at all. This makes the situation even more stressful for both Pat and I.
Please continue to pray for Ryan's complete HEALING!
God Bless!
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Update as of Thursday, June 9 PM
Ryan finished the first day of receiving the 2 new chemo agents.
Unfortunately his fever climbed after the chemo infusions so we were just moved to inpatient. Tylenol seems to be helping as well as ice packs.
Ryan's nurse took cultures from his lines due to his fever and he was given antibiotics. Ryan seems to be resting comfortably and even has a couple of his favorite toy frogs right next to him.
Please pray the chemo works the miracle we are all praying for. Pray that Ryan's temp goes back to normal and he experiences no side effects or complications from the chemo.
God Bless!
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Update as of Thursday, June 9 AM
Prayer Warriors..
Please keep the prayers coming our way!!
Ryan was taken off his meds for constipation because the constipation now seems to be under control. Thank you God! Ryan's stomach is now softer and not distended. Although we can feel that his liver has grown larger.
Ryan was uncomfortable yesterday afternoon and in the evening, before falling asleep, but it may have to do with the meds we gave him for constipation early Wed AM before going to the hospital/clinc. Once one of the NB Nurses saw Ryan having explosive movements in the clinic she told us to get him off the meds for constipation but we could still keep Ryan on the stool softner.
Ryan slept relatively well last night ( not on any pain meds .. thank you God). He just got Tylenol at 2 am since he has been running temps.
They did NOT start the chemo yesterday but will
today. Please pray this helps Ryan. Dad is at the hospital clinic now with Ryan. I wanted to update the website before leaving the Ronald McDonald House.
Prior to being discharged from the hospital on Tuesday evening.. Dr Kushner stopped by and sounded somewhat hopeful that these new chemos may do the trick since they belong to a new family of chemo agents; which Ryan has never had. The new agents have had success with both solid and soft tumors. Pray he endures no side effects or complications from these new chemo agents.
Ryan has been drinking a good amount of whole milk but has lost a lot of weight due to the nausea from the radiation to his abdomen and chemo duing the past month. He may need a feeding tube soon.. so please pray he starts eating.
Yesterday evening our wonderful friends (Debbie and Diane) came by for a visit after work. As always we enjoy their visits with us. We are so blessed to have them as our friends.
FAITH is about ALWAYS having HOPE and TRUST in the Lord..
Pat and I ask for your continued prayers.
Please keep praying for a miracle for Ryan.
and please recruit more prayer warriors for Ryan.
FYI..
Yesterday wonderful prayer warriors, from back home, prayed continuously for a 24 hour period.. Only GREAT things could come from this!
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Well here we are. Our backs are officially against the wall. Ryan's LDH has risen again to 1596; high enough to convince Dr. Kushner that Ryan has active disease in his liver again. They don't even want to bother putting Ryan through anther CT scan, since the LDH is pretty much telling them what they need to know. I could've never imagined Dr. Kushner so frustrated. They are pretty much out of options other than to try 2 other agents on Wednesday. I know that one will be Gemcitabine, but the other one will be determined when the Neuroblastoma team meets tomorrow. Linda & I are at a crossroads, but refuse to let go of our faith. God promises us miracles; he promises us healing; now such a miracle would be undeniable.
Please pray very hard for Ryan to have a complete response to treatment, & for his LDH to come down ( as that seems to be the marker that they will be focusing on going foreword ). With a good response; we can at least get him to the next level of treatment. Look at 1 Peter 2:24 & Isaiah 53:4-5; I know we are. We were also told to pray to St. Teresa of Avila, St. Luke, & Fr. Nelson Baker for intercession. Please, please spread the word. God bless you all!
PAT AND I NEED YOUR HELP!!
Ryan’s condition is “VERY SERIOUS”.. We are running out of treatment options so we definitely need a MIRACLE to happen. Ryan’s CT scan is on Thursday, June 16 so we need to pray very hard that they see No Evidence of Disease.
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our intentions for Ryan loud and clear.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Please be sure to pray for other adults/children also battling this horrible disease.
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Pat and I appreciate your help during this difficult time. Your prayers and support helps us so much!
God Bless,
The Connolly Family
Saturday, June 4, 2005 6:01 PM CDT Update as of Sunday, 6/5
Ryan is still inpatient. He has a low grade temp and his abdomen is still distended.
He actually slept relatively well last night; after a couple restless nights. Pat and I are praying hard for a miracle..
We are really worried about Ryan's LDH level and pray that it goes down (as his primary oncologist is very concerned). He has been quite clingy the last few days so I finally forced myself to leave the hospital to go back to the Ronald McDonald House (for a little break) after 2 straight days.
A good friend of mine, who came to visit recently, said to me.. "I don't think folks really understand how serious the situation is now for Ryan".
Unfortunately the situation is VERY VERY Serious.. So please pray hard for a miracle for our little guy. and for us parents to have strength.
Pat and I want to thank everyone for the kind letters, emails, guest book entrees, and most of all your prayers.. it helps so much during these very difficult days. Thank you for reaching out to us!
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NEW PHOTOS FINALLY!!!!
Ryan Update:
Dad here. We are still at the hospital as of this evening. An X-ray last night revealed that Ryan was EXTREMELY constipated. His impacted bowels had reached all the way up to his chest. He has since received 2 enemas, had 3 doses of colace(?), & 2 other laxatives. Needless to say; it's finally working; but he whiney, exhausted, & generally very miserable. We have been changing diapers at a record pace, yet Ryan's belly is still pretty distended. We will probably stay at least one more night, until the situation is controllable. Who can say how long this has been building, given all that he has been through recently.
As if that weren't enough; Ryan's LDH has taken a bit of a jump from 1025 to 1262( an increase of 237 points ). PLEASE PRAY THAT THIS NUMBER GOES DOWN AS RYAN HEADS INTO CHEMO AGAIN THIS WEEK. The doctors are concerned, but just want to watch the situation for now, but that's not their child on the bed, whining in discomfort. Linda & I are keeping the faith, & placing our trust in the Lord; not allowing the enemy to distract us with numbers that don't mean anything to our God. So stand with us, united in prayer, & we will all have a glorious victory to share together. God bless you all. Spread the word, & then ask others to spread the word in Jesus' name. It's time for our miracle, so let's get to work.
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PAT AND I NEED YOUR HELP!!
Ryan’s condition is “VERY SERIOUS”.. We are running out of treatment options so we definitely need a MIRACLE to happen. Ryan’s CT scan is on Thursday, June 16 so we need to pray very hard that they see No Evidence of Disease.
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our intentions for Ryan loud and clear.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Please be sure to pray for other adults/children also battling this horrible disease.
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Pat and I appreciate your help during this difficult time. Your prayers and support helps us so much!
God Bless,
The Connolly Family
Thursday, June 2, 2005 5:24 PM CDT URGENT NEED FOR PRAYERS.. PLEASE !!!
Update as of Friday, June 3
I just returned to the Ronald McDonald House after spending the night with Ryan (Pat and I take turns)
Ryan's temp seems to have gone down since last night. He does seem very constipated and his abdomen is somewhat distended.
Dr Kushner stopped in and expressed his concern about Ryan having a fever; concerned about this meaning disease may be active. He also thought his liver was larger... Pat and I thought it was feeling smaller and we were very upset to hear this.
This is not good news.. Pat and I are VERY worried/stressed right now. The only hope is for Ryan to have a miracle via prayer.
PLEASE PRAY THAT RYAN's LDH IS NORMAL (A Blood marker). Pray that his liver is not enlarged and that the Lord shows us our miracle for Ryan's complete healing.
Please pray hard for the Lord to give us strength.
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Ryan has been feeling a little bit better every day. As of last Friday he is off of his pain medication (Dilaudid). He still is on an anti-nausea medication. Ryan is still not interested in walking and spends time in bed or in a stroller. If we put him down to walk he can do so but will stomp his feet and will want to be picked up. We pray (and ask for your prayers) that his not walking is nothing serious and only due to exhaustion/nausea from Radiation and Chemo.
Our friend Sharon came in to visit from Michigan last weekend. We spent a lot of time
walking around the city. It was great to see Sharon. Went to Cenral Park, a street fair, etc. Ryan seemed to be in better spirits whenever we took him out for a walk.
Unfortunately Ryan was just admitted to the hospital for a fever this afternoon. His counts are wonderful; even after being hit with chemo last week. Please pray that his fever is nothing. Cultures were taken from his ports and he was treated with antibiotics.
Since Ryan’s blood counts are great this week the plan is for him to have chemo again next week.
If Ryan is released and feeling better by Saturday afternoon we are planning on going to our wonderful friends Debbie and Diane’s house (in Queens). Pat has known Debbie and Diane since his high school days. They are planning on making an Italian dinner for us Saturday night.. can’t wait!! We’ve been planning this for a few weeks so hopefully we will be able to go.
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PAT AND I NEED YOUR HELP!!
Ryan’s condition is “VERY SERIOUS”.. We are running out of treatment options so we definitely need a MIRACLE to happen. Ryan’s CT scan is on Thursday, June 16 so we need to pray very hard that they see No Evidence of Disease.
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our intentions for Ryan loud and clear.
We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Please be sure to pray for other adults/children also battling this horrible disease.
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Pat and I appreciate your help during this difficult time. Your prayers and support helps us so much!
God Bless,
The Connolly Family
Saturday, May 28, 2005 11:57 AM CDT
Ryan's blood counts (White, Platelets, etc) were at a very good levels that Dr Kushner decided to start chemotherapy (Irinotecan/Temezolomide) on Monday for 5 days. Normally there are 2 weeks (or more) in between chemo treatments but Ryan only had one week off between treatments. Ryan also finished his 12th and final radiation treatment on Monday. Fortunately radiation will continue to work about 6.5 weeks after finishing treatments.
Each day has shown small improvements. Ryan's liver is feeling “clinically” smaller. Thank you God and Prayer Warriors. Ryan's lack of interest in walking is still a concern. Hopefully his not wanting to walk is only due to nausea and being tired. He certainly has been hit hard with Chemo/Radiation. Also, Ryan does seem to have pain/spasms before urinating; which we pray is due to a side effect of Dilaudid (a narcotic used for pain).
We are keeping Ryan on continuous anti-nausea meds (Vistaril, etc) since he just finished chemo yesterday (he did throw up once at the hospital on Friday). His pain med (Dilaudid) was reduced to 1x on Friday (from 2x daily).
The Neuroblastoma team discussed Ryan's case during their weekly meeting. They would like to continue with Ryan's same chemotherapy (Irinotecan/Temezolomide) until he has CT scans, tests, etc. They have pretty much exhausted chemo options at this point which does not offer us any other alternatives; unless his disease shows tremendous improvement.
Ryan will probably be scanned in just under a month. The team is very concerned about how fast Ryan's disease took off (about 2.5 weeks ago) while on chemo. We are grateful his liver functions are at normal levels (AST only slightly elevated).
Pat and I are also currently trying to decide whether we should also put Ryan on an anti-angiogenesis agent. Currently Sloan could put Ryan on Thalidomide (yes.. the drug which caused birth defects in the '60s). Or we could go to Dr Yamashiro at New York Columbia Presb and try a newer drug known as Avastin. Pray for God to provide guidance to us.
Dr Kushner examined Ryan on Tuesday and was “very pleased” that Ryan's liver felt smaller. I told Dr K the prayers are working!
Later that same day Ryan saw his special education teacher at the Ronald McDonald House (Ann Marie). Ann Marie found Ryan was able to sit up and wanted to get out of his stroller .. Praise God!
Ryan actually walked to some puzzles Ann Marie had set up and played for about 3 to 4 minutes before wanting to return to his stroller. He then continued to work with Ann Marie while sitting in his stroller. Ryan has not wanted to walk since Tuesday evening but Pat and I are encouraged.
Today (Saturday) he is sitting up a bit and playing with his toys.
Our friend, Sharon, flew in on Thursday evening from Michigan to spend the holiday weekend with us. We plan on making a trip to Central park today to visit Grandpa.
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Pat and I need your help!!!!!
We are at a VERY CRITICAL time with Ryan and are asking for folks to join us in prayer for a miracle. We would appreciate if you would add Ryan's name and need for prayers to your place of worship and any prayer groups. Let God hear our intentions for Ryan loud and clear.
We need to pray even harder before his next set of tests/scans (in about a month or less). We also would appreciate it if folks would help in spreading the word to get even more folks praying for Ryan (tell 5 friends to pray, they tell 5 friends to pray, and so on). Email can be a great way to accomplish this.
Please be sure to pray for other adults/children also battling this horrible disease.
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Pat and I appreciate your help during this difficult time. Your prayers and support helps us so much!
God Bless,
The Connolly Family
Sunday, May 22, 2005 11:15 AM CDT
Update as of midnight Sunday, May 22
We just returned from Memorial Sloan Kettering Cancer Center after spending Sunday evening in Urgent Care because of Ryan's high temp; which climbed to 101.1. For oncology patients you are required to go to urgent care to be treated whenever a temp is over 100.4.
Since Ryan's counts were at very good levels he had cultures taken and was given an antibiotic via IV. Once finished with the antibiotics we were and able to go home (home being the Ronald McDonald House)..
Fortunately Ryan was comfortable and fell fast asleep.
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Unfortunately, Ryan has had some nausea even while being on anti-nausea medications (Zofran, Vistaril, etc) which is not uncommon for patients having radiation to their abdominal area. Fortunately, Ryan is drinking a good amount of whole milk and eating some. At least once or 2x a day we also give Ryan pain medication (Dilaudid).
Ryan still does not want to walk which is a concern. We pray that this is attributed to being too tired/weak. We massage his legs and will have his OT therapist, Linda, work with him next week. He has not required a Physical Therapist thus far. Please pray that Ryan will be up and around playing again soon. It is so hard sometimes to not see him run around like he used to.
We frequent a drug store in Manhattan (Cherry's Pharmacy) where they can flavor meds for children, create suspensions, etc. They are great! By the way they can ship medications almost anywhere. They flavored one of Ryan's meds with a Cherry flavor and he ended up licking the syringe.. how good is that! About a month ago, during one of our visits to Cherry's Pharmacy, they photographed/interviewed us for an article now found in Drug Store News; a trade magazine.
As of Friday Ryan finished his 11th day of radiation. On Monday, May 23, Ryan will undergo his last day of radiation therapy. We anticipate that we will meet with Ryan's oncologist, Dr Kushner, after his radiation treatment to discuss what Memorial Sloan Kettering Cancer Center (MSKCC) proposes our next steps should be.
We also anticipate receiving feedback from Dr Kushner about his thoughts after his hearing from Dr Yamashiro ( of New York Columbia-Presbyterian). We met with Dr Yamashiro recently to obtain another opinion.
I also received a call from Judah Folkman's assistant. Judah Folkman, an amazing doctor/researcher, is the founder of anti-angiogenesis treatment. We plan on contacting his assistant this week once we know what MSKCC proposes as well as contact Dr Reynolds, a neuroblastoma researcher/consultant, from Los Angeles.
Last Wednesday, we met with Ryan's radiologist, Dr Wolden, who indicated that she would recommend having Ryan undergo a CT scan 4 weeks after finishing his radiation treatment. Waiting to scan in a month was suggested due to radiation working up to 6.5 weeks after finishing treatment.
Dr Wolden was glad to see Ryan's LDH heading south; a marker which can indicate tumor activity. Before starting radiation treatment Ryan's LDH was close to 3000. As of last Friday Ryan's LDH was still high (1000) but a substantial drop; normal LDH is somewhere below 200.
Ryan's platelet counts even went up during the week which could be attributed to less tumor burden; a good thing. Dr Wolden indicated Ryan has had the best blood counts, among all her patients, these past 2 weeks; so he has avoided transfusions. Thank you God! And prayer warriors.
Ryan is still pretty wiped out and plays sometime while laying on his side. We take Ryan for walks in the jogging stroller whenever the weather is nice. Yesterday we took him up to Central Park to see Grandpa. Grandpa visits the park each Wednesday and Saturday afternoon. We also caught up with Suzanne, our new friend, whom we have gotten to know while visiting Central Park.
Because Ryan has not been feeling well some of his early intervention instruction (speech, OT, etc) has been put on hold. We are looking at changing the approach to his early intervention therapy at this time.
The Connolly Family believes in the power of prayer…
We truly appreciate your prayers for Ryan. We request that you help us spread the word for Ryan's need for prayer.
Please pray for a miracle for Ryan. Pray that Ryan's body is completely healed once and for all from this horrible cancer. That God gives the physicians the knowledge/guidance to treat Ryan. That God heals his entire body and especially liver; and makes his liver as new again. That Ryan endures no side effects or complications. As our savior, Jesus Christ, died on the cross so it is part of Ryan's inheritance to be healed!
Also, please pray for the other adults/children who are batting cancer. Pray for Ryan's prayer aunt Sylvia for a speedy recovery from back surgery.
God Bless,
The Connolly Family
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) created "Pray for Ryan" buttons, which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address.
pmcmillan@northridgechurch.com
Important! The buttons will be available till the end of May so if you are interested please contact Pam McMillan soon!
Tuesday, May 17, 2005 7:44 PM CDT
On Monday evening our friends Debbie and Diane came by for a visit after work and treated us to dinner. We were so happy to see them both and had a great time. Ryan pretty much slept through our dinner which was great. As long as Ryan's doing well.. we our planning on going to Debbie and Diane's house in a couple weeks for a home cooked Italian dinner and sleep over (can't wait).
Today we finished day 8 of radiation early and since Ryan does not have any chemotherapy treatment this week we were out of the hospital this morning. It was weird having to leave the hospital so early for once. The weather was wonderful so we decided to take a long walk around the city.
Ryan is still on constant anti-nausea medication and pain medication (when needed). Ryan is still not walking and not playing with his toys so we thought getting him out for a walk in his stroller would be good for him.
We were on a mission to find Ryan some small tropical (brightly colored) frogs that he likes to play with. While walking around we came upon the F.A.O. Schwarz toy store and met some wonderful folks who work there (newly recruited prayer warriors). We had no luck finding the frogs. We tried showing Ryan other toys but since he was not feeling well he stayed in his stroller and rested.
Please keep praying for a miracle and that Ryan will be up and around playing soon.
I'm really concerned that he is not walking but was told it is probably because of fatigue and nausea.
P.S.- Please pray that Aunt Sylvia's back surgery goes well & that she has a full & swift recovery. Thanks!
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO.. Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) created "Pray for Ryan" buttons, which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address.
pmcmillan@northridgechurch.com
Important! The buttons will be available till the end of May so if you are interested please contact Pam McMillan soon!
Sunday, May 15, 2005 9:31 PM CDT
Ryan has not had a great deal of energy and spends most of his days in bed watching his favorite videos. Ryan will sometimes laugh at his videos which gives Pat and I such joy. He will sometimes lie on his side to play with one of his puzzles. Ryan has walked very little during the past week but he has been hit hard with both radiation and chemotherapy. All and all each day shows us some small improvements for which we are grateful.
We are able to get Ryan to drink a good amount of milk each day and fortunately as the days go by he is now eating some food as well. Today he has had about 20 oz of milk and food. We give him 2 medications for nausea which I'm sure is helping him (not to mention all of the prayers).
Each day last week we would be at the hospital first thing for Ryan's radiation treatment followed by chemotherapy at the day hospital. This coming week he will continue with his radiation treatment; his chemo was finished last week. We always have to check in each day at the hospital clinic so Ryan is checked out first by a nurse before undergoing anesthesia for radiation treatment.
As the days go by we've been able to reduce his pain medication quite a bit now.. Thank you God (and Prayer Warriors). We were told to stay on top of his nausea meds as he will certainly need it.
We spoke with Ryan's radiologist, Dr Wolden, last Wednesday who felt that individuals who show some response to radiation at the start typically do well overall; we pray that this will hold true for Ryan as he really needs a miracle; as he has exhausted chemotherapy options.
Late Friday afternoon we took Ryan to see Dr. Yamashiro at Columbia Presbyterian Hospital for a second opinion. Dr. Yamashiro, who specializes in anti-angiogenesis drugs in treating Neuroblastoma, spent quite a bit of time discussing Ryan's situation with us. Pat and I requested that Dr Yamahiro contact Dr Kushner with his suggestions.
We returned from Columbia Presbyterian to the Ronald McDonald House late Friday with several folks waiting for us in the lobby. Ryan's wonderful prayer aunts Sylvia and Julie came for a visit from Allentown, PA. The Connolly Family is so blessed to have them in our life! They are such wonderful ladies. SEE.. these ladies are proof that there are angels among us on this earth!
PLEASE keep Sylvia in your prayers this week as she undergoes back surgery. Pray that the surgery is a wonderful success and that Sylvia heals quickly.
We were so happy to also see Ryan's aunt Barbara and cousin Eric who came to visit us for the weekend.
Pat's good friends (Debbie and Diane), who Pat has known since his high school days, have visited with us a few times during the past couple of weeks. Their visits with us always lift our spirits.
We ask for your continued prayers for our little hero. Please pray for a miracle for Ryan that will amaze his doctors. Pray for a complete healing of his body. That Ryan's liver will be as new! That Ryan endures no side effects or complications. Pray that our little guy will be running around playing with his toys again soon!
Lastly, pray for others battling this horrible illness and for mom and dad to have continued strength.
God Bless!
The Connolly Family
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO.. Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) created "Pray for Ryan" buttons, which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address.
pmcmillan@northridgechurch.com
Important! The buttons will be available till the end of May so if you are interested please contact Pam McMillan soon!
Wednesday, May 4, 2005 2:17 PM CDT
Update as of Monday, May 9, 2005
We were released from the hospital on Sunday. The past week has been very difficult for Pat and I; receiving very bad news about Ryan's liver, etc. Nothing can be worse for a parent then seeing your child in pain/discomfort and feeling helpless about it. Please dear God help Ryan!
Ryan's discomfort seemed be less after his 1st radiation last Friday. Also, Ryan was able to lay on his right side, where the liver is, after receiving radiation. He still had fevers which the oncologists are pretty convinced are related to tumor growth. His pain medication is given every 4 hours.
Ryan's oncologist did rounds on Sunday and was happy to see Ryan playing with a few toys on Sunday; an improvement from the previous days.
However, today he is not feeling great. We returned to the hospital (early this AM) for day 2 (of 12) radiation treatments. His fevers seem to have disappeared (finally) ! Thank you God for taking away his fevers! The Neuroblastoma team, thought they would try the last cycle of chemo again today to see if Ryan would have a better response when it is combined with radiation.
Ryan may also be started on some non chemo drugs; such as
anti-angiogenesis drugs (which can be known, in some instances, to stop blood vessel formation which feeds tumors).
Pat and I definitely gain strength from all the prayers surrounding us. Thank you prayer warriors! WE ASK THAT YOU PLEASE keep the prayers coming and spread the word for Ryan's need for a miracle.
We also want to thank you for your kind guest book entries, emails, phone calls, etc. We may not be able to respond to everyone individually but know that your gestures are greatly appreciated.
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Update as of Wednesday Evening...Dad here:
Dr. Kushner has informed us that Ryan's liver has indeed begun to rapidly grow again as a result of tumor activity. More alarmingly; that his is now being considered as basically being unresponsive to chemo. This revelation explains his persistent fever & alarming leap in LDH. We are going to get radiation started on Friday, which will give us at least one treatment before the rest of the regimen continues on Monday. Let us pray that the radiation does the trick; also that Ryan's fever, & pain, subside. With a good response to the radiation, Ryan's liver might become opento other options. This is a very difficult time for us all, but a crucial one for Ryan. It's time for our miracle; let's get together & make this testimony happen. Please help, thanks, & GOD BLESS YOU ALL!
************* Urgent need for Prayer for Ryan **********************
Please pray for a miracle for Ryan.
Ryan is inpatient at Memorial Sloan Kettering. He was admitted on Tuesday afternoon due to a very high fever. Ryan's LDH, a blood marker, has shot up substantially (around 2800 ) which may mean tumor disease. Some of his liver functions have also gone up slightly. Ryan's right side is painful to the touch (where his liver is located). It was so hard on Pat and I to see Ryan not feeling like his happy self.
Dr Kushner recommended that Ryan have morphine as needed for pain control. He also felt his high fever may be due to his liver. Although Ryan was given morphine last night he seems to be able to rest today with Tylenol.
If you are reading this update please say a prayer (at this very moment) asking the Dear Lord for complete healing for Ryan. Please pray that Ryan's liver will be clean of any disease and that he endures no pain. That his fevers go away as tylenol is not doing a great job. That the radiation treatment will be a success.
We are hoping that Dr Kushner will have Ryan's radiation moved to this week instead of starting next Monday.
This is a very scary time for us parents so please pray for us to have continued strength.
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO.. Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
The buttons will be available till the end of May so if you are interested please contact Pam McMillan.
Tuesday, May 3, 2005 2:12 PM CDT
Update as of 9:30 PM Tuesday
Yes.. we are back in the hospital once again.
Ryan was hospitalized this afternoon because of a fever. His counts are at real good levels; so he is not neutropenic. Unfortunately, Ryan has shown a lot of discomfort all day so please pray that he does not have pain due to his liver being enlarged.
Mom and dad are feeling a bit worried, tired not to mention stressed!! so we ask for your prayers for our continued strength.
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Ryan was released from the hospital late last Thursday after a 10 day stay. Ryan's Bone Marrow Bx and Aspirate came back negative for Disease (Thank you God and Prayer warriors). Dr Kushner also indicated that the disease at the base of his skull is showing up on scans as old disease so his main concern is the liver. Ryan's liver has grown larger so please pray that the new chemo works which was finished last Wednesday.
On Monday we returned to the hospital with Ryan for a checkup and a radiation simulation. Ryan now has small permanent tattoos of the area they will radiate. The actual radiation will be of the liver and primary tumor site (left adrenal gland) and will take place beginning with next Monday for 12 business days. We pray that this treatment will help Ryan as he has never had any radiation.
We will be returning to the hospital/clinic this afternoon as Ryan now has a fever once again and will probably be hospitalized. He also seems to be in discomfort more and more each day away from the last chemo, finished last Wednesday, so pray that he has no pain.
Friday, April 22, 2005 9:22 PM CDT Update as of Sunday, Apr 23, 2005
Ryan had some nausea yesterday and was unable to keep some of his food down. He is now taking anti-nausea meds which is helping.
We were able to take Ryan to the hospital play room so he could have some fun. Besides Ryan really needs to get out of the hospital bed to exercise his legs; being that he has been inpatient since last Tuesday.
Ryan is having a temp so the nurse continues to take cultures each day from his ports to insure there is no infection. They also had to start antibiotics again, due to a high temp, so please pray that he has no infection and that his temp returns to normal.
Pat and I appreciate all the emails, guest book entries and above all prayers.. they help us so much!
P.S. We are waiting to hear the results of Ryan's Bone Marrow Bx and Aspirate (done on Friday).. please pray that the Bone marrow is clean of disease!!
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Unfortunately, Pat and I learned late this afternoon that the I.C.E. chemo treatment is not working for Ryan. The scans/tests revealed mixed results; some of the previous lesions had died, while other new lesions had grown in his liver. The area at the base of his skull showed no change (stable disease).
So we will be staying inpatient at Memorial Sloan Kettering and starting Ryan on another chemo combo (Saturday). The chemo agents are known as Irinotecan/Temezolomide. One of the chemo agents is infused and the other is taken orally. The drugs are not known to be hard on the bone marrow.
In addition, we will be speaking to the radiology department next week as Ryan will also undergo radiation to his liver and the spot near the base of his skull.
We are grateful that Sloan has other new tools to offer us to attack this horrible monster and will remain hopeful that Ryan will be healed.
Although this news was very difficult to hear Pat and I are grateful to God for each day with our little hero. We still believe in the power of prayer and know that Ryan will be healed in God's time not ours.
Please continue to keep Ryan in your prayers. As well as other adults and children battling cancer.
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO.. Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Wednesday, April 20, 2005 10:04 AM CDT
Update as of Wednesday evening
Ryan is still in the hospital due to a non neutropenic fever. He will probably be in for at least a few more days.
This afternoon we learned that Ryan's LDH levels were very elevated
(>1200). Last week his LDH level (measured in the blood) was around 380; the lower the better. Normally when Ryan has had high LDH levels it is not good unless the level rises during active chemo treatment.
Please pray that this is nothing!!! as Pat and I are very concerned. I'm sure we will learn more in the next couple of days when the doctors learn about the results of Ryan's various tests. We are praying hard that Ryan will obtain NED (No Evidence of Disease) Status.
Ryan will undergo an MIBG scan on Thursday (tomorrow) around 11 am and Bone Marrow Bx and Aspirate on Friday. Earlier today he had a CT scan.
We were also surprised to learn that Ryan required a Red Blood transfusion as his hemoglobin was low. We are hoping that perhaps because Ryan's hematocrit was on the low end this could possibly be the reason why his LDH rose.
This is a very stressful week for us parents (i.e. Scan/test week) so we ask for your prayers for us as well.
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Ryan's blood counts were great last week so we attended the Lion King Broadway show. The tickets were given to folks staying at the Ronald McDonald House. Ryan did OK for the majority of the first half . The New York City Police drove families via their vans to see the Lion King. One of the officers, a volunteer for the Ronald McDonald House for the past 15 yrs, who was driving one of the vans allowed Ryan to push buttons to make the lights/sirens go off.. Ryan loved it!
On Friday we had a visit from 3 lovely ladies from Michigan; our friends and fellow prayer warriors. Angela, Jen and Heather drove in from Michigan just for a quick visit and to pray for Ryan and us. We also took some time to visit Central Park and had a wonderful time.
On Saturday afternoon we went to New Jersey to see our friends The Murphys. We left their house Sunday night to stay on the Jersey Shore for a mini get away; it was great to get away. We took Ryan down the board walk in Atlantic City.. the weather was great. Unfortunately we had to cut our trip short as Ryan had a high fever. Ryan was admitted to Memorial Sloan Kettering and is on 3 IVs for antibiotics. Please pray that he has no serious infections, etc.. and that he recovers from the fever.
At noon today Ryan will undergo a CT scan .. we will be praying hard they see No Evidence of Disease. He will undergo an MIBG injection around 3:30 today as well. An MIBG scan on Thursday and Bone Marrow Biopsy and Aspirate on Friday. We ask for your continued prayers.
Tuesday, April 12, 2005 8:33 PM CDT
On Monday we took Ryan to the hospital/oncology clinic and learned his counts we at a good level (no more Neupogen shots to raise his white count, transfusions, etc). The nurse practioner, for the Neuroblastoma (NB) team, indicated to me on Monday during Ryan's checkup “I'm very impressed Ryan did not get a fever”. The team was pretty certain Ryan, as most kids going through high-dose chemo, would have a Neutropenic fever. The Neuroblastoma team even thought Ryan would need a stem cell rescue since his bone marrow probably would not recover on its own. I informed the nurse practioner that “We (Pat and I) give God all credit” and that we have many prayer warriors which is why Ryan is doing so well. *** Praise Report for all you Prayer Warriors!!!
Last weekend we took Ryan to Central Park to visit with his grandpa. Ryan had a blast listening to the musicians at the park. On Sunday we met up with our friend Nancy who we always enjoy seeing. Ryan absolutely loves going to the park and as long as his counts are good we certainly take him as much as possible. There is certainly no shortage of parks in Manhattan (just lawns.. Ha Ha). I can't believe how much we have walked while we have been in New York; something New Yorkers do a lot of.
Ryan will return to the clinic on Wednesday for a checkup (blood work, etc), a trip to the dentist at Sloan, an audiogram at 2 pm (PLEASE pray Ryan passes his hearing test), and a visit with his speech/feeding therapist later in the afternoon.
Next week on Wednesday, Thursday and Friday Ryan will undergo a series of tests/scans/biopsies (CT scan, Bone Marrow Bx and Aspirate, MIBG Injection and Scan, etc). Ryan typically goes through these tests after finishing 2 cycles of chemo to determine how well the chemotherapy is working (aka I.C.E. treatment).
If Ryan's disease shows a 50 percent better reduction the Neuroblastoma team at Sloan will probably continue with another round of chemotherapy. If the reduction in disease is < 50 percent they may opt to put Ryan through MIBG therapy (a form of systemic radiation) followed by Arsenic therapy.. Yes.. that is correct Arsensic! Mom asked if the NB team if they could rename it to at least something which sounded nicer.
PLEASE pray for our little hero! Pray that he obtains “No Evidence of Disease” (N.E.D.) status. That Ryan is healed by our Lord, the Great Physician. Please pray that Ryan endures NO side effects or complications from all the treatment (16 cycles of chemotherapy thus far). We realize that irregardless of how well Ryan does he will undergo more treatment besides chemotherapy (antibody therapy, etc); as many high risk neuroblastoma patients do.
Pray for us parents to have continued strength and for others (adults/children) battling cancer.
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO.. Pat and I feel that God will show us a miracle for Ryan but wants others to witness this victory.
Our Friends (From Northridge Church) and Family have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Friday, April 8, 2005 4:14 PM CDT Ryan received a platelet transfusion at the hospital on Wednesday and this afternoon. So far Ryan has avoided the neutropenic fever which would put him in the hospital.. Thank you God! (and prayer warriors). Ryan’s white blood count is also heading upwards (.2 today) so that is a good sign. Ryan was in a terrific mood during his trip to the hospital. Everyone was amazed at how well he looked and acted. Proof to the power of prayer.
On Thursday, Ryan had a visit from his OT therapist, Linda, which went pretty well. They even spent time getting Ryan used to his new tricycle. Ryan’s special education teacher, Ann Marie, worked with Ryan this afternoon and was very happy with his progress during their session today.
The weather is supposed to be pretty nice this weekend so we hope to take Ryan to Central Park. We will need to use some caution though as Ryan’s white counts are still pretty low.
What’s next? Hopefully Ryan will continue to avoid a fever so he won’t be hospitalized. We will return to the day hospital/clinic on Monday for a check-up. A week from next Monday Ryan will probably undergo scans/tests, etc.
Please continue to pray for our little guy. Pray that he is healed (obtains N.E.D. Status ..= No Evidence of Disease). Pray that Ryan experiences no complications or side effects from his treatments. Please also remember to pray for so many other children and adults who are fighting this same battle.
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) and Family have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Monday, April 4, 2005 10:47 AM CDT We returned to the hospital/clinic this morning to check Ryans blood counts. His platelets are extremely low (6) so he is currently in a hospital bed awaiting a platelet transfusion. On Saturday we spent 10 hours in urgent care since his hemoglobin was low requiring a blood transfusion.
Ryan is feeling pretty well. Full of energy on Sunday. Unfortunately, since his white counts are basically zero we are keeping him away from folks so we pretty much stayed in the room at the Ronald McDonald House.
We ask for your continued prayers. Please pray that Ryan obtains N.E.D. (aka No Evidence of Disease). We know that only the Lord, the great physician, can heal Ryan so prayer is very important to us. Pray that he experiences no side effects or complications. Pray for the doctors/oncologists treating Ryan.
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) and Family have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5 suggested donation) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Sunday, March 27, 2005 2:37 PM CST Update as of Sunday, April 3.
Ryan is now recovering from his last chemo (I.C.E.) treatment; completed last Monday. On Saturday, April 2, we spent 10 hours at urgent care (Memorial Sloan Kettering) so Ryan could get a blood transfusion as Ryan's hemoglobin was too low.
In a couple of weeks, once Ryan's blood counts recover, he will go through a series of tests/scans. Depending on the test/scan results will determine Ryan's next course of treatment.
We ask for your continued prayers..
Please pray that Ryan obtains N.E.D. "No Evidence of Disease" status. Pray that Ryan is healed from this horrible disease. Pray that Ryan has No side effects or complications. ************************************************************************
This past week Ryan's early intervention started. He has 4 wonderful teachers to help him with speech/feeding, OT, psych (family/child play) and special ed. The teachers are able to visit Ryan at the Ronald McDonald House or the hospital which helps a great deal!
Today is Easter Sunday.. and Ryan is currently at Memorial Sloan Kettering Cancer Center receiving high dose chemotherapy. A year ago we ended Ryan's intermediate treatment on Easter Sunday with Pat and I thinking this was symbolic.. of a new start for Ryan and us; at that time Ryan obtained NED (No Evidence of Disease) Status. Unfortunately due to Ryan's relapse in November of 2004 this was not to be.
It is hard to believe we are still in this battle for Ryan's life after over 2 years of fighting. However, today as in the past.. we remain hopeful that God will hear our prayers and will give Ryan complete healing. We ask for your continued prayers for Ryan. Please pray for Ryan's complete healing and that he endures no side effects or complications.
Today is day 4 of his I.C.E. chemotherapy treatment. Ryan is handling the chemo pretty well considering. We brought plenty of puzzles, toys, etc to keep him occupied while he is in the hospital.
On Saturday Ryan's hemoglobin was pretty low so he did require a blood transfusion. Also, Ryan did have a bit of nausea yesterday afternoon but this morning he was able to hold down 16 oz of milk, 4 oz of fruit and fruit juice... Thank you God!
Pretty funny!
Us parents are getting handy after having years of experience in the hospitial with Ryan. Ryan's IV alarm kept going off because of an occlusion in the IV line. It appears the line had a kink in it.. so mom took a coffee straw and dad taped it to the area so it would be straight... fixed the problem!!
Today Ryan received 2 Easter Baskets (one with candy and another with toys) from the child life group at Memorial Sloan Kettering. He also received a ton of candy and Easter toys from Aunt Barbara. So Ryan now has way too much candy... guess mom and dad will have to help him out!!
We anticipate Ryan will be discharged sometime on Tuesday.
Happy Easter!
Linda, Pat & Ryan
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) and Family have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
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~ He's My Son ~
by Mark Schultz
(copied from another NB child's site)
I'm down on my knees again tonight
I'm hope'n this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries
Not to cry
As the tears fill her eyes
Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is you
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired
And he's scared
Let him know that you're there
Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son
Thursday, March 24, 2005 2:20 PM CST We learned late yesterday (Wed) that Ryan will be started on chemo this week and not next Monday. Yesterday we returned home from the clinic with a hydration pack for Ryan.
Today Ryan started the I.C.E. chemotherapy. The NB team at Sloan increased the strength of one of the agents used. Please pray that Ryan has no side effects or complications from the chemo. Pray that Ryan recovers quickly and obtains NED status (No Evidence of Disease).
Since Ryan will have chemo over the weekend he will be admitted for inpatient chemo on Saturday. We anticipate that he will be released around next Tuesday.
Ryan's Aunt Barbara and cousins Eric and Raymond came into the city from Queens to visit Ryan and us at the hospital today. It was great to see them!!!!
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Tuesday, March 22, 2005 11:10 AM CST just a quick note..
Went to the hospital/clinic on Monday and learned Ryan's counts (Red blood, white counts, platelets, etc) recovered very well. Thank you God and prayer warriors! We will return to the clinic on Wednesday to learn of the next plan for Ryan's treatment; the tumor board meets to discuss Ryan's treatment today.
We are pretty certain that Ryan will be undergo another I.C.E. chemo treatment beginning next Monday.
Yesterday was the start of Ryan's early intervention treatment. Ryan will have 4 teachers to help him with speech, feeding therapy, OT, spec ed, etc.
Ryan's Uncle Rich, Aunt Helen and cousins Tina and Becka will be arriving on
Friday.. it will be wonderful to see them.
Please keep praying for our little hero. Also, please pray for mom and dad's continued strength.
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A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Wednesday, March 16, 2005 10:06 AM CST Ryan had platelet and blood transfusions on Monday. Daddy stayed with Ryan while mom heading downtown for a meeting with the city (near WallStreet). Our friend Anthony took time off from his schedule on Monday to take mom to the meeting location; Mom was nervous about making the meeting on time. Thank you Anthony!! God has certainly blessed us by surrounding our family with wonderful people.
The meeting was for Ryan's Early Intervention Services. Thankfully Ryan was approved for speech/feeding, OT, spec ed and psych (parent/child) therapy. The services will start next week! Thank you Lilly, the special needs coordinator, for all your help!!!
Yesterday evening the cast from the Lion King came to the Ronald McDonald House to paint the childrens faces, etc.
Since Ryan's counts are low and he was napping at the time we didn't participate but Ryan received a goody bag of really cool toys, etc.
One of the ladies, who accompanied the cast, approach us to tell me that she learned of Ryan's need for prayers via email. It is amazing how word of Ryan's need for prayer continues to travel throughout the United States.
Today we returned to the hospital and learned his platelets were low so he is currently in a hospital bed waiting for a transfuse.
Saturday, March 12, 2005 1:36 PM CST Ryan’s counts have hit bottom so he is not feeling his best. The last 2 days and nights have been pretty rough on Ryan. Ryan’s pretty inactive but seems to find comfort watching his videos. Thankfully.. Ryan is drinking plenty of milk and eating some so that helps. Being through this path already with high dose chemo we realize that once his counts are heading up his disposition will be much better (as well as appetite).
On Thurday Ryan underwent another hearing test and passed with flying colors. Friday we spent the day at the hospital for blood and platelet transfusions. Ryan’s temp is started to climb this afternoon so he will need to be admitted to the hospital if the temp climbs to 100.4.
Yesterday, our friend and Ryan’s buddy/babysitter Stephney came to visit from Michigan with her boyfriend Chris. We all missed her so much.!!! we were very excited to see her.
On Friday morning we learned of the birth of Ryan’s new cousin (born to my sister Bev). Max weighed in at 10 lbs 15 oz.
Please keep the prayers coming!
What’s next? Back to the clinic/hospital on Monday.
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Wednesday, March 2, 2005 12:01 AM CST Update as of Friday, 3/4
Ryan will be finishing the 1st round of his I.C.E. treatment today. He did experience a bit of nausea yesterday morning.. but it was minimal. All in all he has handled the treatment like a champ. Thank you God!
His counts (hemoglobin) are starting to head south due to the chemo so he will be transfused today.
We will be leaving the hospital this evening with a hydration pack for the weekend and will return on Monday to the hospital for a checkup, etc.
There are plenty of activities always going on at the Ronald McDonald House. Normally we are pretty involved with Ryan's treatments, etc.. however, yesterday evening I was able to enjoy a spa evening with other moms put on by Elizabeth Arden's Red Door spa. Enjoyed a manicure, wonderful facial and massage.
Pat and I will be having a meeting with the city on March 17 to discuss Ryan's early intervention needs speech/feeding therapy, OT, etc). Also, Ryan constantly grinds his teeth that the doctors at Sloan are having Ryan evaluated with one of their dentists in a week or so.
Please keep the prayers coming..
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Hello Prayer Warriors:
Ryan started the I.C.E. treatment (made up of 3 very high dose chemotherapy agents) first thing on Monday morning. Ryan has not thrown up at ALL and is tolerating the treatment pretty well.
Today Ryan is in a pretty good mood.
Ryan is also being heavily hydrated around the clock with fluids and medication to protect his bladder, etc. Each evening we arrive back to the Ronald McDonald House with his IV connected to a pump (stored in a large backpack). Since Ryan is receiving so much hydration we don't get too much rest as we need to change his diapers every 2 hours or less.
The bone involvement shown at the base of Ryan's skull (revealed with a CT scan) was not picked up with the MIBG scan (but it is present). Dr Kushner is hopeful that the ICE treatment should help along with possibly radiation to the area.
One thing you learn about cancer treatment is that doctors can not make too many plans, with respect to future treatments, until they see how well Ryan responds.
However, Dr Kushner's main concern is getting the chemo to work on the solid tumors in Ryan's liver so please PRAY we get great results from this ICE treatment.
Please know that the chemo must work to get Ryan to NED (No Evidence of Disease) or minimal disease for him to be put on other therapies (such as radiation, 3F8).
Please pray hard that the ICE treatment gets rid of Ryan's disease once and for all and that he has no side effects or complications. Lastly, please remember to pray for so many other adults and children also battling this horrible disease.
We spent last weekend at our wonderful friends house (The Murphys) in New Jersey. They took great care of us. Thank you Anthony, Maureen, Taylor and Marc.. WE LOVE YOU GUYS!
Maureen made us a great meals, etc. It was soooo helpful to escape for a weekend to be with great friends it helped Pat and I to regroup after receiving bad news last Friday.
We want to thank everyone for reaching out to us during this diffult time. Your kind words, phone calls, emails, wonderful care packages, etc.. touches our hearts.
A WAY TO SPREAD THE WORD TO PRAY FOR OUR LITTLE HERO..
Our Friends (From Northridge Church) and Family have created "Pray for Ryan" buttons which contains Ryan's photo.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Friday, February 25, 2005 1:21 PM CST Call it a mom's intuition but I did not have a good feeling this week. In fact I couldn't sleep most of the week and was doing a lot of crying. I really had wished my instinct was wrong. Unfortunately the chemo (Topo combo) they tried on Ryan did not work.
Ryan's CT scan showed more liver involvment as well as something new (lesion at the base of the skull). Dr Kramer, part of the NB team and one of Dr Kushner's associates, informed us that Ryan would have something referred to as the ICE treatment which would require a stem cell rescue.
According to Dr Kramer..
Ryan at this point is showing the typical presentation, for a 2 yr old, having stage 4 Neuroblastoma that they would normally see at Sloan. They have seen the ICE treatment work so we should have hope.
Although she asked us do we want to proceed or do pallative care at this point; always the choice of parents at this point. Dr Kramer, indicated that the Neuroblastoma team at Sloan is still feeling hopeful for Ryan but Ryan/us will continue to face a rough road ahead.
Friends we have made from the Special Needs Ministry of Northridge Church who had provided one on one care for Ryan (while we are attending service at home) along with family members have created buttons with Ryan's photo that says Pray for Ryan.
If you are interested in purchasing a button ($5) please contact Pam at the following email address..
pmcmillan@northridgechurch.com
Sunday, February 20, 2005 2:58 PM CST Ryan's checkup at the oncology clinic (at PDH) on Friday went fine.. thankfully his counts are up. Ryan loves to go to the very large playroom, at Sloan, while visiting the oncology clinic.
On Friday, Pat's friend Scott treated us to a wonderful dinner at an Argentinean restaurant. The food, filet mignon, great wine, etc.. was absolutely wonderful! It was great to see Scott again who had once shared an apartment with him; during Pat's single years in NYC.
On Saturday a group of us went to Madison Square Gardens to see Sesame Street Live compliments of the Ronald McDonald House. Ryan loved it! They had a private luncheon for the RMH folks and the kids. After lunch, prior to the show, a couple of the characters showed up for photos with the children (Cookie Monster, etc). The New York City police officers transported us via their bus. What great folks!
Today we are visiting one of Pat's brothers, Ben, who lives in Merrick. It is great to get away for a night. Ryan's 16 year old cousin Raymond is also here visiting as well. We haven't seen Raymond for 3 years.. he is such a handsome young man now!
BIG WEEK FOR RYAN COMING UP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This week is SCAN week, etc. Ryan will undergo a CT scan, urine test, MIBG scan, Bone Marrow BX and Aspirate, etc.. so PLEASE pray very hard that Ryan's chemo treatment is working so that Ryan will receive No Evidence of Disease status (NED).
The results of tthese tests, etc.. will determine the course of Ryan's future treatment. Pray for the doctors to have the knowledge to treat Ryan's horrible cancer.
We are praying that Ryan is able to get NED Status so he will qualify for the 3F8 antibody treatment!! Please pray that Ryan will have complete healing by our Lord!
Pray pray for the other children and individuals fighting this horrible disease.
Wednesday, February 16, 2005 2:57 PM CST Since Ryan's counts (ANC, etc) were at a good level he was discharged on Tuesday. The weather was great here (high 50's) on Tuesday so we took him via stroller up to Central Park to see "The Gates" exhibit. It was great to see him run around since he was in the hospital for the past week.
This AM Ryan had a visit with a speech/feeding evaluator related to the early intervention program. I will be meeting with a social worker in a few minutes and an OT evaluator around 5pm about Ryan's situation. Since Ryan is now 2 yr 4 mos old I am trying to get the evals done ASAP so he can get help soon as the program goes to 3 yrs of age.
During the past 2 years Pat has passed up various tickets to sporting events but tonight he will be going to see the NY Knicks with his brother. The Ronald McDonald House provided him with great courtside tickets.
What's next?
Back to the oncology clinic on Friday AM. His scans/tests are next week.
Friday, February 11, 2005 7:39 AM CST Update as of Sunday, Feb 13
We are still at Sloan as Ryan is still inpatient due to his white counts being basically zero. Unfortunately they predict we will probably be here until Wednesday.
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Update as of Sat, Feb 12
Ryan is still inpatient at Sloan until his white counts come up. He is receiving blood and platelets this AM.
Ryan has been relatively happy the last few days. He loves the Leap Frog cash register borrowed from the play room; he cracks up when he presses some of the buttons.
Please keep the prayers coming.
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Ryan was admitted (inpatient) at Memorial Sloan Kettering on Wednesday due to a fever and will not be released until his white counts come up; could take a week it all depends on how fast Ryan's bone marrow comes back. As of yesterday his white blood counts were still zero. He is hooked up to continuous IVs and receiving broad spectrum antibiotics.
He has not had a temperature since Wednesday and so far his cultures are coming back negative. Thank you God!
He will be going through scans/tests, Bone Marrrow Biopsy the last week in February to see how well the chemo (Topo, etc) is working. Please pray that Ryan obtains NED (No Evidence of Disease) Status from the testing.
Monday, February 7, 2005 7:53 PM CST **** Update as of Wednesday, Feb 9
Ryan is certainly getting to an age where he figures out things pretty quickly. Each day as we head for the elevator and exit the doors of the Ronald McDonald House he starts crying since he is aware of where we may be heading.
Today we arrived at the day hospital bright and early this AM for Ryan's bloodwork and transfusions (blood and platelets).
Dr Kushner was right about Ryan getting a fever...
Unfortunately when we arrived this AM Ryan also came down with a temp of 100.4; so he will transferred to the inpatient part of the hosptial sometime today.
Ryan already had cultures taken from his broviac and was infused this morning with broad spectrum antibiotics. Ryan will be inpatient until his white counts come up and he no longer has a temperature.
We will also start giving Ryan his Neupogen shots today which will help assist in bringing his white counts up. Ryan has been in good spirits the last few days (no nausea) which helps a great deal.
We are hoping that Ryan will be well enough next Sat, 2/19, to go see Sesame Street Live and attend the private party for the children staying at the Ronald McDonald House. He is starting to wear a mask now so that helps when taking him out places.
Ryan will go through tests/scans in a few weeks to see how well the chemo is working. They are already planning to do another round/cycle of chemo irregardless.
Please keep the prayers coming.
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Last week Ryan had a fever during cycle 4 of high dose chemo but his cultures came back negative. Thankfully Ryan did not need to be hospitalized overnight. Thank you God!
Dr Kushner is pretty much designing Ryan’s chemo treatment to help reduce the chance of long term effects, etc. In the past Ryan pretty much followed the protocol under a COG # (Children’s Oncology Group) which would be the same for each child. This can be fine for some since it is a proven COG that can work, however, now that Ryan has had several cycles (14 total) I trust Dr Kushner will come up with the right mix of high dose chemo for Ryan.
We were at the day hospital bright and early today and learned Ryan’s counts are pretty much bottomed out. He will probably need a transfuse of platelets on Tuesday since his platelets are pretty low at this point. Probably will need red blood as well.
The oncologists are pretty sure Ryan will get a high temp soon (now that his counts are bottomed out) and will need to be inpatient for about a week. Please pray that Ryan does not get a fever while his counts are bottomed out!!!!
We are also starting early intervention services with Ryan since he is barely talking at this point.. Can’t say that I blame him. He is being evaluated by a speech and OT therapist. We are also looking at some type of psychological evaluation as well.
Ryan had a hearing test today which he passed (thank you God and prayer warriors). He is also scheduled to have another one next Monday as well.
Please keep those prayers coming.
Fun Stuff..
Ryan met his cousin Kevin (who is 4 yrs old) this past weekend for the first time. Uncle Ben, Pat’s brother, brought Kevin out to see us on Saturday and we all took a nice walk to Central Park. Ryan pretty much stayed in the stroller for the walk. The weather has been great here the past few days (close to 50) but will cool down by weeks end.
Mom picked a few squares for the super bowl contest at the Ronald McDonald House held on Sunday and we won the grand prize… a portable DVD player.
Monday, January 31, 2005 8:59 AM CST Update as of February 1st, 2005.
We arrived back to the Ronald McDonald House around 7pm last night with a hydration pack (the hydration pack had 2 pumps one for a medication and one for hydration). Ryan had a rough night and could not keep anything down; not even liquids.
Poor little guy was pretty uncomfortable last night until he finally feel asleep. We had to get up in the middle of the night to change diapers because of the constant hydration.
We returned back to the day hospital early this AM for day 2 of cycle 4.
His oncologist still felt Ryan's liver was pronounced so please keep the prayers coming. We were also told to anticipate that Ryan will have a fever within a week of finishing this cycle and Ryan will need to be hospitalized overnight for multiple days (depending on his cultures and counts).
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Ryan's counts are good as of this morning so we are at the MSKCC day hospital which will be doing Ryan's chemo cycle #4 this AM; the cycle will run through Thursday. Ryan will leave with a hydration pack each evening.
This past weekend we went to our friends house in New Jersey. It sure was great to get away for a night but so hard to return back to the Ronald McDonald House; especially knowing what was in store for Ryan this week.
Please keep Ryan and us in your prayers. Please pray that cycle 4 gives him NED Status (No Evidence of Disease). Ryan will be having scans/tests, etc in approximately 1 month to determine how well the chemo is working. We pray Ryan will show good response from the chemotherapy to qualify for the 3F8 antibody treatment.
Wednesday, January 26, 2005 9:20 AM CST We were hoping to come home for a week between treatments but unfortunately we are unable to do so. After his 3rd round of high dose chemo Ryan's counts have bounced around and he has required blood and platelet transfusions.
Today we learned his platelets/blood levels are looking good so we will stop his shot after today. We will return to the day hospital on Friday to see if he can maintain his counts on his own. If his platelets are at least 75K they will probably do cycle 4 of high dose chemo on Monday.
I certainly can feel Ryan's liver is smaller, Dr Kushner agreed, which is a good sign.
Pat and I were able to go out for dinner last Friday night since our wondeful friend Nancy came over to babysit Ryan. Thank you Nancy.. Mom and Dad certainly needed a night out. Nancy was kind enough to babysit Ryan after a long day at work. She came with numerous Elmo toys, etc for Ryan. Thank you Sesame Street Workshop folks for all the great toys! (where Nancy works).
On our way back from dinner we noticed firetrucks blocking off 1st ave around 70th street. Pat got a phone call from his brother, a firefighter, that he was at the scene so Pat went down to see his brother and take a few pictures afterwards Pat got a ride back to Ronald McDonald House on the fire truck.
Please continue to pray that Ryan. Pray that he obtains No Evidence of Disease and has no side effects or complications. Please continue to pray for us parents to have continued strength as well as other children and their families fighting this battle.
Sunday, January 16, 2005 5:17 PM CST
We learned late last week Ryan’s bone marrow biopsy came back negative.. Thank you Lord and Prayer Warriors!
Ryan finished round 3 of high dose chemo this past Thursday but we were told to return to the Pediatric Day Hospital on Friday so he could be
hydrated, monitored, etc. MSKCC is big on hydration so he was sent home (home now being Ronald McDonald House) on Friday with a large backpack of hydration for the weekend; as he was each evening while on chemo. The backpack, normally kept near Ryan, has a pump, which pumps the IV fluids. An alarm can go off if a problem occurs (inclusion, etc) but it has been manageable so far. However, it can make life interesting when Ryan decides to start run up and down the hall with mom and/or dad running behind carrying the backpack.
The chemo for cycle # 3 (Cisplatin, VP16) does a number on the stomach so we have had Ryan on a couple anti nausea drugs. I think the extra hydration is paying off as Ryan did throw up on Wednesday and Thursday but has not since.. Thank you God! We are also very thankful that Ryan’s appetite is also increasing each day, which is wonderful; especially since he is holding down liquids and foods.
We really did not do too much this past week besides spend long days at the pediactric day hospital and return back to the Ronald McDonald House (RMH). We found ourselves pretty worn out by days end. Also, with Ryan having the backpack with constant hydration he is changed often so we would get up during the night every 3 hours or so to insure he didn’t wet the bed..
Last night Uncle Tommy and Aunt Nicole came by for a visit (of course they brought some new toys for Ryan). We did venture out for a dinner (since Ryan’s counts are still decent). Unfortunately, Ryan was not at his best so it was a pretty quick dinner and back to RMH. Our room at RMH is also starting to get a bit more comfortable thanks to our friends the Murphy’s who have dropped off numerous items (coffee maker, etc) for us during the past couple of weeks. Pat’s brother, Ben, also loaned us his rocker/glider which is great.
Dr Kushner is looking at doing another round of chemo in approximately 21 days. He is looking at the chemotherapy that Ryan has had thus far to lessen the chance of long-term side effects on the heart, etc. After round # 4 Ryan will go through tests and hopefully will be able to go on the 3F8 mice antibody therapy.
We return to the hospital on Monday for bloodwork, etc. Hopefully Ryan will not need to have the backback/hydration since he is doing well. Once Ryan's counts come back we are hoping to come home for about a week. Based on past experience it will probably be the last week in January or early February.
Prayer Warriors your prayers are working (Ryan is tolerating the chemo very well) AND
we ask for your continued prayers for Ryan and our family.
Please pray for Ryan’s complete healing (especially his liver). Pray that Ryan has NO side effects or complications, etc. Pray for mom and dad to have continued strength. Lastly pray for others also battling this horrible disease.
P.S. Sorry we haven't returned many of your emails or phone calls but hope to get back to this next week.
Monday, January 10, 2005 11:03 AM CST Just a quick update...
We arrived at Memorial Sloan Kettering (PDH) at 8 AM today. Ryan had his bloodwork and checkup with his nurse first thing after which he was assigned a room at the day hospital.
Ryan is currently receiving cycle 3 of high dose chemo thru Thursday. We will be leaving the day hospital each evening returning to the Ronald McDonald House around 6 pm with a backpack of hydration.
Dr Kushner stopped by this AM with the results of the majority of Ryan's tests (conducted last week). All in all the results were promising. Ryan's bone marrow looks pretty clean from 3 of the 4 bone marrow aspirates; one of the aspirates had a few funny cells. They are still waiting for the Bone Marrow Biopsy results.
Ryan's liver although showing a good improvement, when compared to scans done prior to his treatment in November, still has tumor activity in his liver which will need to be reduced/eliminated before other types of treatment can be utilized (such as 3F8 antibody therapy, etc). So please pray for Ryan's liver to obtain NED Status (No Evidence of Disease).
We also learned today that Memorial Sloan Kettering will now also offer MIBG therapy within weeks; a therapy normally offered at only a few other institutions such as Childrens Hospital of PA and Univ of Michigan.
What's Next? The plan is to finish cycle 3 followed by cycle 4 of their N8 chemotherapy. Approximately 3 to 4 weeks after cycle 4 he will again go through testing (Bone Marrow Bx/Aspirate, Scans, etc) to determine how well the liver is doing, etc. Based on the tests, after cycle 4 we will learn what Ryan's next treatment will be.
Yesterday we had a wonderful visit from one of Ryan's fellow prayer warriors Sylvia and her friend Julie (aka Auntie Sylvia & Auntie Julie). They also brought us a wonderful dinner, presents, a gift certificate, etc. God has certainly blessed our family by surrounding us with angels here on earth.
Yesterday evening we took a long walk to the Toys R Us store and purchased a few boo-boo presents for Ryan.
Johnny's Pizzeria on North Leroy Street in Fenton will be having a fundraiser for our family on Thursday, January 20. More details to come.
Wednesday, January 5, 2005 6:11 PM CST update on Saturday..
if you want to see where we spend most of our time during the week..
below is a link to Memorial Sloan Kettering PDH
http://www.mskcc.org/mskcc/html/52599.cfm
We made it to NYC safe and sound Sunday evening after a stop over at our friends house in New Jersey. Thankfully the weather was cooperative for the long car trip but we also stayed over in PA Saturday evening to break up the trip.
On Monday we went to the Pediatric Day Hospital (PDH) for a visit with Dr Kushner in the AM and in the afternoon Ryan underwent a stem cell harvest. As busy as this pediatric hospital is they are extremely efficient. The staff is also very personable and they make you feel very comfortable quickly. They also have visiting clowns who entertain the children as well as activity area where children can play or do crafts, etc. Not to mention they provide coffee, juice, donuts, bagels and if you are at PDH in the afternoon they provide lunch.
Pat and I were wondering if Ryan would do well with the stem cell harvest. The staff and we were thinking it might need to be a 2-day procedure since they used his double lumen broviac line (smaller when compared to the catheter used in July). Since his broviac catheter is very sensitive to his positioning we had to fool around with his arms (moving his arms up by his head) so that the blood could adequately supply the machine for processing.
The nurse who looked after Ryan during the stem cell harvest was wonderful! She was committed to getting his broviac line to work by adjusting the machine pressure, moving Ryan’s arms, turning Ryan to his side, etc... whenever the alarms went off during the 3-hour process. At first it seemed like the machine pressure alarm was going off quite a bit that Pat and I thought for sure that Ryan would need to have surgery to put in a larger catheter for the harvest but thankfully the persistence of his nurse paid off.
After we returned back to the Ronald McDonald House on Monday evening we received a phone call from the lab that Ryan had provided a ton of stem cells.. 14.7 million to be exact (Thank you God!). The things that make us parents happy these days! This would give us plenty of stem cells for different treatment options; such as antibody treatments, bone marrow transplants, etc. Not to mention Ryan has 2 bags of frozen stem cells from a harvest done in July which are stored at the Detroit Medical Center.
Dr Kushner thought that this past Monday was a good time to do the harvest, since Ryan had just finished 2 rounds of high dose chemo. This would put Ryan in a better position if he needed to undergo their antibody therapy.
Since Ryan did not have to return on Tuesday for day 2 of the stem cell harvest we only had a quick visit to PDH for blood work and a check up. Our friend Maureen came out via train to meet us at the Ronald McDonald House and took our car back to her home so we could avoid the high parking lot fees in NYC.
Unfortunately Ryan’s white count was extremely high and he was grinding his teeth big time possibly due to bone pain (from the daily Neupogen injections for the Stem Cell harvest) so we stayed around RMH most of the afternoon. On Tuesday evening Pat’s father took the train in to visit us and treated us to dinner.
Today (Wednesday) we returned to PDH and after a visit with the oncology area Ryan underwent a CT scan. On Thursday Ryan will have a Bone Marrow Biopsy and Aspirate followed by a MIBG injection. On Friday he will undergo an MIBG scan.
We should learn more about Ryan’s treatment plan soon (perhaps on Friday) but anticipate, from our discussion with Dr Kushner on Monday, that Ryan will undergo another round (#3) of high dose chemo at Memorial Sloan Kettering (MSK) on Monday. We were also told to antipate hearing that Ryan may have hearing loss from Round 3.
MSK is big in making the children comfortable with treatment so they have unique ways of administering chemo. The chemo is typically done during the day at PDH after which the children leave wearing a back pack which has a pump for delivering the chemotherapy and hydration. This will be a change for us since Ryan has always stayed inpatient at Children’s Hospital of MI.
Prayer Warriors..
Please continue to keep us in your prayers. Please pray that the doctors will have the knowledge and treatment plan for Ryan; to cure him of this horrible illness. Pray that Ryan has no complications or side effects from treatment. Also, Pray for us parents to have continued strength.
Saturday, December 25, 2004 1:37 PM CST Merry Christmas!
We returned home late Christmas Eve after another stay at the hospital.
We first arrived home a week ago (last Saturday) after Ryan had finished his second cycle of high dose chemo only to return to the hospital this week.
On Wednesday evening Ryan had a temp over 101.5; for oncology patients this means back to ER and hospitalization for a minimum of 48 hours.
We are learning quickly that fevers are hard to avoid with high dose chemo. Ryan was hospitalized for fever within a week of finishing the 1st and 2nd cycles. During the past 2 years Ryan had 10 cycles of low/intermediate chemo and was never hospitalized for a fever.
Since Ryan now has a double lumen broviac and a med port the ER nurses at Children’s Hospital took blood from 4 sites (including vein) this was necessary to determine the source of any infection. Once the blood was taken from Ryan he was treated via IV with broad spectrum antibiotics. Thankfully last night (Xmas Eve) Pat and I learned all of Ryan’s cultures were negative and was able to return home. However, since Ryan maintained a low grade fever he probably contracted something viral. Ryan is considered neutropenic right now so he has no ability to fight infections (White Blood Count is at 0.2 as of yesterday).
While we were at the hospital yesterday Ryan also received a platelet and red blood transfusion yesterday; his CBC showed his platelet and hemoglobin levels were very low.
Ryan has also had a lot of jaw pain and constipation due to the chemo so we have had to treat this as well as give him daily neupogen shots and flush his broviac ports daily with heprin.
As of this morning Ryan’s temperature is hanging closer to normal.. Thank you God! Although we will be unable to celebrate for the 3rd year with other family members (to keep Ryan safe) we are thankful to be home to celebrate Christmas. Ryan was happily running around the house in his batman pjs (includes a cape) by days end.
A very special thanks to the folks at MetLife for providing our Xmas dinner today.
What’s next? We need to be in NYC at Memorial Sloan Kettering Cancer Center (MSKCC) the first week of January. We will probably need to drive since we were unable to find a flight with the Corporate Angel network since the planes are being maintained/grounded during the holidays.
Ryan will be meeting with the oncologist at MSKCC, Dr Kushner, on Monday, January 3. Ryan will then undergo another Stem Cell retrieval on Tuesday, Jan 4 & Wednesday, Jan 5. On Thursday, Jan 6 & Friday, Jan 7 he will have a bone marrow bx and aspirate, MRI and MIBG injection followed by an MIBG scan.
From the scan/test results MSKCC will determine their plan for treating Ryan.
Prayer Warriors.. Please continue to pray for Ryan and us to have continued strength. Also, pray for so many other children/adults battling this horrible illness.
During this holiday be sure to remember the real reason for celebrating Christ’s birth and be sure to hug your friends and loved ones!
Monday, December 13, 2004 2:46 PM CST We are currently at the Ronald McDonald House; arrived late Sunday evening. Pat and I took Ryan to the oncology clinic 7:30 AM this morning for his bloodwork, visit with his oncologist, etc.
Ryan's counts are at good levels so Ryan will be admitted to Children's Hospital of MI for round 2 of high
dose chemotherapy as soon as a room is available (hopefully today).
Please pray the chemotherapy goes well for Ryan with NO side effects or complications. Please pray for mom and dad to have continued strength.
It is hard to believe we will be celebrating the 3rd Xmas season (since Ryan's birth) again in the trenches; fighting for our little guys life.
We anticipate we will be leaving for Memorial Sloan Kettering in NYC early January.
See link to view an article on
on Ryan's prayer vigil held last Thursday at our home.
http://www.tctimes.com/site/news.cfm?newsid=13544494&BRD=2524&PAG=461&dept_id=495205&rfi=6
Friday, December 3, 2004 1:10 PM CST Update as of 12/8
On Monday we visited the oncology clinic and learned Ryan's counts were at good levels (platelets, WBC, etc) so we arrived home late Monday afternoon. It certainly is wonderful to be home!
We will be returning to the oncology clinic at Children's Hospital early next Monday for another CBC. If Ryan's blood counts remain at adequate levels he will be directly admitted for a 2nd cycle of chemo.
Several members from our church along with family and friends will be gathering together outside our home on Thursday night (at 8pm) for a prayer vigil for Ryan.
If you are unable to attend the prayer gathering it would be wonderful if you could take a moment to pray for Ryan during that time.
Please pray for Ryan's complete healing that Ryan endures NO side effects or complications from his treatment. Pray for the medical staff treating Ryan that they have the knowledge and skills to give Ryan the best care and for us parents to have continued strength.
Lastly, pray for the healing of so many other children and their familes who are battling cancer.
God Bless,
Love,
The Connolly Family
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Quick update as of Friday, 12/3
Ryan finished round #1 of high dose chemo 12 days ago. It certainly has hit Ryan very hard. We left Children’s Hospital after spending a week inpatient only to return to ER 3 days later as Ryan spiked a fever. Ryan’s counts are bottomed out leaving him very immune suppressed so any time Ryan’s temp reaches 101 it is back to ER for a minimum hospital stay of 48 hours.
The 48 hour cultures revealed no infection but Ryan did require blood and platelet transfusions this week. Since the cultures came back negative his fever may be a reaction to platelets given to him at the clinic last Friday.
Ryan was discharged again this past Tuesday but we were told to stay close to the hospital in case he was to spike a temp again. The doctors also felt he was much safer being away from the hospital with his immunity being so compromised. Mom and Ryan are pretty much confined to a bedroom at RMH watching continuous ELMO and Baby Einstein on a DVD player. We make daily visits to the oncology clinic at Children’s Hospital for transfusions, dressing changes, etc.
Ryan has lost most of his beautiful curly blond hair this week. He loves to play with his curls only now he has a handful of hair in his hand each time; putting the hair in his mouth.
Thank you for the continued support and prayers. Please continue praying as we are certainly in for a very tough battle. Your prayers and encouragement helps us tremendously; especially during very long/rough days.
God Bless!
Love,
Linda, Pat & Ryan
What's next? Today is day 12 and we will start the next chemo cycle (at Children's Hospital) on day 21; assuming his platelet counts, etc, have recovered to an appropriate level. Sometime after the 2nd cycle of chemo we will go to Memorial Sloan Kettering cancer center in NYC.
Monday, November 15, 2004 4:06 AM CST "Up to this time you have not asked a [single] thing in My Name [as presenting all that I AM]; but now ask and keep on asking and you will receive, so that your joy (gladness, delight) may be full and complete."
—John 16:24
Tuesday, 11/16.. Quick update
Yesterday Ryan had a bone scan at Children’s Hospital which came out clear. Thank you God! Today Ryan was in surgery for a Bone Marrow Biopsy and Aspirate; 4-5 percent of the cells showed cancer. So it looks like the liver and the bone marrow have disease; as in the past.
Dr Kushner from Memorial Sloan Kettering felt it was necessary to start Ryan on high dose chemo on Wednesday. Dr Sarnaik from Children’s was also in agreement. The intent is to get the disease under control first before Ryan travels to New York. Ryan will be admitted on Wednesday for cycle one which will be a 5 day treatment. We were told to anticipate Ryan being very sick from this chemo. Also, since some of the drugs will be platin drugs we were told Ryan could have hearing loss.
Please pray for Ryan’s healing, and that he suffers no side effects or complications. Please pray for mom and dad to have continued strength.
Know that we appreciate the support from everyone. Your emails, guest book entries, and phone calls, encourage us.
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Pat and I want to thank each of you for the tremendous outpouring of Love and Support we received since Friday. We want everyone to know how much we appreciate your reaching out to us.
The power of prayer is helping us tremendously as we are feeling strength from all of your prayers. Please continue to pray for a complete healing for Ryan and for us parents; to have strength for our battle for Ryan’s life.
We absolutely believe in the Lord's healing and although we were told, by his oncologist at Children's Hospital on Friday to be prepared for a rougher battle and that we may loose Ryan.. We REFUSE to do so as it is part of Ryan's inheritance to be healed.
As we get into this battle for our son we will need YOUR prayers more than ever. Please know that we read each of your guest book entries and emails; they encourage us.
As my sister-in-law, Cheryl, said it best on Sunday.. “Linda your sounding back to your old self so much stronger.. ready for the battle to save Ryan”. I knew immediately my strength was from our Heavenly Father; due to all of the prayers surrounding the Connolly Family.
I feel compelled to let people know that if you are visiting Ryan’s site and normally do not pray but care about Ryan and want to help.. We ask that you PLEASE pray at this moment as a favor to Pat and I. Pray, in Jesus Name, for Ryan to have a complete healing. Please know.. To have God our Father hear your prayer you must pray through his son.
We haven’t learned the next steps with respect to Ryan’s care being turned over to Memorial Sloan Kettering (MSKCC), however, I am sure we will learn something today. Dr Kushner, from MSKCC, emailed us on Sunday indicating that he has been in contact with Ryan’s current oncologist and conveyed his recommendations.
Today we will return to Children’s Hospital for Ryan’s bone scan and on Tuesday for Ryan’s Bone Marrow Bx and Aspirate.
We received a call yesterday evening that our wonderful friends/neighbors are planning on meeting at our home tonight around 9:30 PM to unite together in prayer for Ryan and us.
Friday, November 12, 2004 3:26 PM CST
We received horrible news today that Ryan's cancer is back and his odds of survival are now much less so we will be heading to NYC Memorial Sloan Kettering very soon for a different treatment.
Friday, November 12, 2004 3:26 PM CST
We received horrible news today that Ryan's cancer is back and his odds of survival are now much less so we will be heading to NYC Memorial Sloan Kettering very soon for a different treatment.
Wednesday, November 10, 2004 8:30 AM CST Yesterday we returned to Children's Hospital for the 3rd part of his hearing tests (continued from Monday); which checks his inner ear for ototoxicity. We were very happy to learn Ryan passed all 3 of the hearing tests. Thank you Lord!
On Tuesday, Ryan also had the radioactive isotope injection. This isotope is produced in Vancouver, BC and processed and delivered from Grand Rapids Michigan to Children’s Hospital. The isotope is injected a day prior to the MIBG scan. Sometimes children can become pretty sick with the injection.. thankfully it went pretty smooth. Ryan had at least 4 nurses working on him plus mom and dad helping to hold him down while they accessed his medport.
Today Ryan will have the MIBG scan which will have mom and dad on pins and needles. The MIBG scan is a specific scan used to locate Neuroblastoma cells. Since Ryan will be sedated today Pat and I woke Ryan up at 6 am to feed him since he is not allowed solids after 7 am. He will be one hungry child since he is normally a big eater.
We ask for your continued prayers..
This is a very scary time for us since Ryan’s liver is enlarged and some of his blood markers have gone up. Please pray that Ryan’s scan goes well. Pray, in Jesus Name, that the scan shows No Evidence of Disease. We are still awaiting some of his blood and important urine markers which we pray will come back completely normal.
Lastly, pray for so many other children and their families battling this horrible monster.
P.S. Ryan and Daddy went to Ryan’s benefit later in the evening on Tuesday. They even made the 11 pm Flint Channel 25 News. It actually was the 11pm lead story and was very touching for both Pat and I.
Special thanks to the Flint Generals Team, Dan Armstrong from TV25 and The Brown Family Restaurants for holding a benefit for Ryan. God has certainly blessed us with such caring folks.
Wednesday, November 3, 2004 8:50 PM CST Unfortunately, late last week Pat and I noticed Ryan’s liver was a bit enlarged so we informed Ryan’s oncologist via email about our concern. Today during Ryan’s examination at the Children’s Hospital Oncology clinic Ryan’s oncologist felt his liver and agreed with us that it is enlarged. His oncologist is interested in knowing how Ryan's MIBG scan goes and felt that his liver may be just regenerating.
Ryan’s LDH marker have also shot up from around 280 on Oct 1 to 599 today. We pray that this is nothing but we are very concerned. We will not know his urine markers results until approximately 7 to 10 days. We are also waiting for add'l blood marker results to come back.
We also learned today that Ryan’s MIBG injection had to be cancelled since the radioactive Isotope was not delivered from Grand Rapids. So we will stop his SSI/iodine drops, used to protect his thyroid from the radiation, and we will restart them next Monday.
Because Ryan’s MIBG injection and scan were moved to next week we will be at Children’s Hospital pretty much EVERY day next week. He also had a MRI and Hearing test scheduled for other days.
We truly believe in the power of prayer and we ask for your continued prayers. Last Sunday, the elders of Northridge church annointed and prayed over Ryan after service last Sunday; which gave Pat and I peace.
Please pray that his liver and hearing is OK that Ryan’s scans and markers show No Evidence of Disease. Mom and dad are stressed so please keep us in your prayers as well.
P.S. See below for information about a benefit being held for Ryan next week
TIP-A-GENERAL” NIGHT ON TUESDAY, NOVEMBER 9, 2004
By Robert A. Roe (11/3/2004)
MR. BROWN’S RESTAURANT AND MR. BROWN’S BACKYARD BAR & GRILL FROM 5-9 P.M. ALL TIPS RAISED TO BENEFIT LOCAL YOUNGSTER
FLINT, MI - The Flint Generals of the United Hockey League will be participating in a very special “Tip-a-General” night on Tuesday, November 9, 2004 from 5-9 p.m. Two locations will be hosting this event. Mr. Brown’s Restaurant, located at 4031 Richfield Rd. in Flint and Mr. Brown’s Backyard Bar & Grill, located at 3022 S. Linden Rd; at the corner of Lennon Rd. in Flint is your place to be on Tuesday night.
The Generals players will be serving as waiters, hosts and bartenders throughout the evening. All tips collected by the players will be used to help a local area youngster, 2-year-old Ryan Connolly, who is battling Neuroblastoma Cancer.
“Tuesday night is all about what the community can do to help someone battle a terrible disease,” said Vice President & Head Coach, Robbie S. Nichols. Sometimes, all of us have the tendency to focus on our own lives as we work our 9 to 5 jobs and take care of our families and do what we need to do. We need to remember that there are many people who are battling for quality of lives for loved ones that suffer from sickness. The Flint Generals invite everyone is our community to join forces and help Ryan and his family during this special benefit and event.”
This is the first event and fundraiser the Generals have been involved with the support of the Brown’s Family Restaurant. “We would like to thank the Brown Family, management and staff of Mr. Brown’s Restaurant and Mr. Brown’s Backyard Bar & Grill,” continues Nichols. “They have served as official food caterers of our training camp for the last two seasons and have provided a tremendous service to our hockey club. Now they step forward and give back to the community. We certainly could not have put this benefit together without their time and efforts. We appreciate all they have done for us, and we are proud to be associated with these restaurants.
The Generals next home game is Sunday, November 7, 2004 against the expansion Kansas City Outlaws at 4:05 p.m. Tickets are on sale for $13.00, $11.00 & $9.00 at any TicketMaster location. Student and senior citizens tickets are discounted $2.00 off regular price. For ticket purchases, please call (810) 742-9422. For more details, contact the Flint Generals at (810) 742-9422.
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Tuesday, November 2, 2004 9:12 PM CST We ask for your continued prayers these next couple weeks.
Ryan will be going through scans/tests on November 3, 4, 8 & 12.
(MIBG, MRI, audiogram, urine & bloodwork, etc)
Please pray that the scans and markers continue to show No Evidence of Disease (NED). Pray that Ryan passes his hearing test with flying colors.
Pray for us parents to have continued strength. Lastly pray for the other children and their families battling this horrible illness.
God Bless,
Linda, Pat & Ryan
P.S. Pat and I just learned this evening that the Wonderful "Flint Generals", a well known Hockey team out of Flint, will be sponsoring a benefit for Ryan next Tuesday. See below for details.
Tip-A-General Night Mark Tuesday, November 9, 2004 on your hockey calendar for “Tip-a-General” night at two locations. Mr. Brown’s Restaurant, located at 4031 Richfield Rd. in Flint, and Mr. Brown’s Backyard Bar & Grill, located at 3022 S. Linden Rd. in Flint, from 5-9 p.m. The players will serve as celebrity waiters, hosts and bartenders throughout the evening. All tips collected by the Generals will be used to help a local area youngster, 2-year-old, Ryan Connolly, who is battling Neuroblastoma Cancer. For more details, contact the Flint Generals at (810) 742-9422.
Sunday, October 31, 2004 2:52 AM CST Please keep Ryan in your prayers these next couple weeks.
Ryan will be going through scans/tests on November 3, 4, 8 & 12.
(MIBG, MRI, audiogram, urine & bloodwork, etc)
Please pray that the scans and markers continue to show No Evidence of Disease (NED). Pray that Ryan passes his hearing test with flying colors.
Pray for us parents to have continued strength. Lastly pray for the other children and their families battling this horrible illness.
God Bless,
Linda, Pat & Ryan
Tuesday, October 19, 2004 10:21 AM CDT Donations to help offset misc expenses related to Ryan's medical condition can be sent to:
The State Bank
Attn: Ryan Connolly Medical Fund 175 N. Leroy
P.O. Box 725 Fenton, MI 48430
See link below to view article written about Ryan's birthday in our local Tri County Times Newspaper.
http://www.tctimes.com/site/news.cfm?brd=2524&Nav_Sec=63213
Whew finally! We received news about Ryan’s urine markers late Friday. Ryan’s urine levels are slightly higher but are within the normal ranges. Thank you Lord and prayer warriors! VMA:20.6 (normal 0-27) HVA:26.1 (normal 0-42). His urine markers will be checked again on November 3rd.
Ryan’s birthday party was held at Jump ‘N Play gym on Saturday. Ryan was the happiest little guy! It just melted our hearts to see him running around so excited. Everyone had a wonderful time. One of the writers, Cheryl, from our local town newspaper also came to Ryan’s party with her grandson. Cheryl is writing a story for the Wednesday edition. I will be sure to share the link with everyone since the story will probably be online as well.
Ryan continues to show us how much he is learning each and every day. He likes to stack blocks (at least 4 high), scoots around in his little police car, etc. One of his very favorite things to do is to throw things down the stairs. Daddy also lets Ryan push him down the stairs; something mom won’t be doing too soon.
What’s next? Ryan will have a series of tests early November. His hearing test will be on November 8th. MIBG injection on Nov 3rd and MIBG scan on Nov 4th. Checkup with Ryan’s oncologist, blood and urine work also on Nov 3 and 4. MRI on Nov 12.
We ask for your continued prayers .. Please pray that Ryan’s scans continue to show NED “No Evidence of Disease”. Please pray that Ryan passes his hearing test.
We also ask for your prayers for so many other children who are suffering from this horrible monster.
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BE SURE TO CHECK OUT RYAN IN THIS YEARS HALLOWEEN COSTUME. UNDER VIEW PHOTOS.. MIDDLE PHOTOGRAPH.
Thursday, October 14, 2004 7:36 AM CDT We returned last Sunday from a trip to the Chicago area. Pat attended a meeting with other parents from the Neuroblastoma organization (aka CNCF). A small meeting was held to brainstorm various ideas for the organization. There will be many GREAT things to come for CNCF. CNCF has helped us tremendously as well as so many other parents of children with Neuroblastoma.
Funny thing that happened on the way home from our trip to Chicago. We thought we would stop at a restaurant for dinner AND as the young waitress was taking our order our little Ryan decided to reach around and grab the behind of the waitress. Well, we all had a good laugh. Now you probably are thinking he learned this from us parents.. NOT!
Ryan’s oncologist called us yesterday to let us know that she is not at all concerned with Ryan’s NSE level (which is slightly higher). She feels the NSE may be slightly raised due to trauma from Ryan’s liver biopsy; surgery was done last month.
We were also wondering why Ryan’s urine markers are taking so long to come back from Utah (where the testing is performed). Dr Sarnaik indicated that since Ryan’s urine test was not put in as STAT the test results would take longer (normally it takes 7-10 days). His doctor also informed us that she is very “encouraged” with Ryan’s progress at this point. Thank you God!
However, Ryan’s oncologist is concerned that Ryan is not speaking and wants to have his hearing tested (scheduled for Nov 8). She wants to be sure the chemo (platin) drugs did not hurt his hearing in any way. We ask for your prayers.. Please pray that his hearing was not hurt by the drugs.
Today is Ryan’s 2nd birthday. We are so blessed to have Ryan in our lives. We are not planning any big event today but on Saturday Ryan will be having a party with other children at a fun place called Jump Start Gym.
What’s next? Along with a hearing test on November 8 Ryan will be going through MRI and MIBG scans and checkup
around the first week of November. Please keep the prayers coming.
Update as of Friday, Oct 15
Attention Prayer Warriors..
We learned early this morning that a fellow NB family's 3 year old daughter, Sydney, relapsed with the horrible monster.
Sydney was declared NED for approximately 3 months. Please pray for a complete healing for Sydney and stength for her parents (Mark and Lynley).
We met the wondeful Dungan family (who are from Texas) back in July at the NB conference. We also just saw Mark, who is VP of CNCF, in Chicago last weekend.
Sydney's site can be found at http://www.sydneydungan.com
Saturday, October 2, 2004 11:51 AM CDT Update for Monday, Oct 11
We heard back from Ryan's oncology nurse that his NSE (blood) level is a bit elevated. Please pray that this is nothing!!
We are still waiting to hear back about Ryan's urine markers. We ask for your prayers.. please pray that Ryan's urine markers are OK.
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Can any good come from suffering?
"For when your faith is tested, your endurance has a chance to grow . . . for when your endurance is fully developed, you will be strong in character and ready for anything."
James 1:3-4 NLT
We took Ryan to Children's Hospital for a checkup at the oncology clinic on Friday. His blood work so far looks real good (LDH, WBC, platelets, etc). We are still waiting on few other items (NSE, urine markers, etc).
The oncologist discussed with us the need for Ryan's hearing to be checked again. High pitched hearing loss is common with specific chemo agents such as Carboplatin.
Unfortunately, Carboplatin is one of the chemo agents Ryan has had during most of his treatments. I will be calling the hospital next week to schedule his hearing test. Ryan did pass his hearing test done around May, after his last chemo treatment, so we are hopeful. I have to admit that I am concerned about his hearing since Ryan is not really talking much. I realize that it is not uncommon for boys to begin talking later. He does say dadda and mama and a lot of sounds but not much more.
Ryan will also need to have follow up MRI and MIBG scans around the end of October or early November.
PLEASE pray that Ryan's upcoming scans come back CLEAN and that his hearing is functioning well. Pray also for so many other children dealing with this horrible illness. Pray for us parents to have continued strength.
Saturday, September 25, 2004 5:50 AM CDT Sorry it has taken us awhile to update the website. Pat and I were so relieved to hear that Ryan’s liver biopsy came back benign. Thank you God and prayer warriors!
Ryan’s Grandpa Connolly just returned to NYC, this past Monday, after a 10 day stay with us. It was great to see Ryan interact with grandpa. Grandpa got a huge kick on how Ryan smiles for the camera. What a ham!
The fundraiser was a wonderful success! So many great people came to help out. God certainly blessed us on that day. We even had great weather as well. Special thanks to Deb Runnels, Anita Holmes (representing Quest Labs) and Mike Andrada, our friends/neighbors, who worked so hard to organize the fundraiser.
I received a call from the oncology social worker at Children’s Hospital on Tuesday about some last minute tickets to see Disney on Ice at the palace. Pat was unable to go but I was determined to take Ryan especially since we have missed so many events in the past. My friend Sharon joined Ryan and I. I certainly appreciated her coming along to help me out. Ryan only seemed to enjoy the initial part of the show and was not a happy camper. We ended up leaving about ½ hour early. I’m hoping he will like Sesame Street Live which will be in the Detroit area early next year.
On Thursday I took Ryan to see his surgeon for his post op follow up. The incisions sites are a bit swollen but Dr Stockman felt they will just need more time to heal. We also discussed Ryan’s gallbladder removal and decided not to remove it at this time. Ryan is not exhibiting any pain or problems due to the stones so we will hold off. Hopefully the gallstones will never act up; since the gallbladder removal will be tricky. Part of Ryan’s gallbladder is within his liver.
After Ryan’s doctor appointment I took Ryan to a local park so I could feed him lunch. Ryan had a lot of fun on the playground equipment. Mom and Ryan even went down the slide together several times. The next day (Friday), Ryan started to have a lot of clear nasal drainage but thankfully no temperature. I’m thinking Ryan is just like mom and dad who have many allergies. Hopefully he will grow out of them.
Pat (aka Daddy) has designed the new logo for the Children’s Neuroblastoma Cancer Foundation. CNCF is a wonderful organization, formed by Patricia Tallungan, who had lost her 10 year old son Nick to this ugly monster. CNCF has been a wonderful resource for us and for so many parents and children. Pat was asked to attend a meeting in the suburbs of Chicago next month. Ryan and I might come along for the trip.
What’s next? Ryan’s next oncology clinic apt, at Children’s Hospital, is next Friday, Oct 1st. Ryan will be going in for a checkup, blood and urine work (to check his markers). He also will be having an MRI and a MIBG scan late Oct or early Nov.
We ask for your continued prayers for our son. Please pray that his markers continue to show No Evidence of Disease. Pray for CLEAN scans. Also, please pray for so many other children who are suffering from this horrible illness AND hug your kids and loved ones often!
Special prayer request for our friend Bonnie from Fenton whose grandson, Christopher, may have a brain tumor. Christopher is also being seen at Children’s Hospital of Michigan.
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Update on Sunday, Sept 26
Well it looks like Ryan has his first cold. I thought Ryan was just suffering from allergies but he definitely has a cold. Please pray Ryan doesn't come down with a fever; which would mean a trip to the hospital.
Thursday, September 9, 2004 9:44 AM CDT UPDATE: The results are in on the liver. NO EVIDENCE OF TUMOR ANYWHERE. PRAISE THE LORD! Ryan is A-OK. There will be no MIBG scan at this time. Dr. Sarnaik feels that they had gotten enough tissue samples for an adequate biopsy. They don't feel that he will even need any blood/urine work until early October.
Thank you all so much for all of your prayers & support, please keep it up!! The more time/years that we can maintain No Evidence of Disease (NED) status the more hopeful we will be that we have beat this monster. Ryan will be delared in remission after having 5 years of NED status.
Ryan’s surgery/biopsy went very well. Dr Stockman, Ryan’s surgeon, was able to provide pathology with several samples from Ryan’s liver via the laparoscope. Ryan has 3 small incisions in his abdomen as a result of the surgery.
We arrived home around midnight. Ryan’s orders (from his surgeon) were written for him to stay overnight for observation. However, since Ryan’s hemoglobin levels were good (indicating no internal bleeding), he was eating solids and was able to urinate, etc.. Ryan’s orders were changed allowing us to go home late yesterday evening. However, Ryan is a bit unsteady today due to the anesthesia. To keep Ryan from running and climbing it looks like the Connolly Family will be having a "Elmothon" today.
Dr Stockman showed us pictures of Ryan’s liver, taken during surgery, which showed a somewhat nodular surface. A liver would normally have a smooth surface in a child who did not experience the trauma of chemo, etc. Dr Stockman expressed to Pat and I that he feels pretty optimistic about Ryan’s biopsy results. Dr Stockman felt that the surface is exhibiting scarring.
Prior to surgery Ryan’s oncologist and surgeon discussed the possibility of removing Ryan’s gallbladder (because of gall stones). They thought it may be an opportune time to remove his gallbladder since Ryan would already be in for a surgery. So.. When we first arrived with Ryan in PreOp we were asked if we would also like to have Ryan’s gallbladder taken out during the liver biopsy.
After going over the Pros and Cons, with Ryan’s surgeon, Pat and I opted to wait until his port is taken out down the road since we don’t feel that his gallbladder is causing problems for Ryan at this time. Ryan’s surgeon also did not feel it was urgent to do the removal of his gallbladder, at this time. However, Dr Stockman wanted to give us the option since the gall bladder would need to be removed at some point.
During surgery Dr Stockman took a look at his gallbladder and found it would be a bit tricky to remove but could be done. Apparently part of Ryan’s gallbladder is located within his liver (intra hepatic).
Pat and I are grateful for the support and prayers for our little guy. We ask for your continued prayers for Ryan and for so many other children suffering from this horrible illness. Please pray that Ryan’s pathology report shows no evidence of disease. We are also waiting for a his urine markers, etc. Please pray that Ryan is healed by our Lord; the great physician.
P.S. Ryan is getting to be such a big boy. The nurses weight and measure Ryan before each surgery. Ryan is now 38 inches tall and 34 lbs. Ryan will be 23 months old on Sept 14. This may explain the back pain mom is now experiencing from carrying Ryan, etc.
Ryan’s grandpa is coming for a visit (from New York City) and will be arriving Friday afternoon.
Link to another Tri County Times article about Ryan's upcoming fundraiser
http://www.tctimes.com/site/news.cfm?newsid=12876078&BRD=2524&PAG=461&dept_id=495205&rfi=6
Tuesday, September 7, 2004 3:54 PM CDT Due to 3 new lesions/nodules found on Ryan’s liver during his routine MRI in August, Ryan will undergo a liver biopsy on Wednesday. Last week we learned Ryan’s bone marrow biopsy showed no evidence of disease. Thank you Lord!
Ryan is scheduled for surgery (liver biopsy) around noon tomorrow. The surgery is scheduled for 3 hours and he will probably be staying over night for observation.
Please pray that the surgery goes well, with no complications, that the liver biopsy shows that the new lesions/growths are benign. The surgeon indicated to Pat and I during our consult, a few weeks ago, that if he does not run into too many adhesions around Ryan’s liver he should be able to utilize a laparoscope for the biopsy.
Please pray for us parents to have continued strength. Also, pray for the many other children and their parents who are also fighting this battle.
Friday, September 3, 2004 5:53 AM CDT We received word on most of Ryan’s blood chemistry and bone marrow biopsy results on Thursday. Thank you Lord! Thank you prayer warriors!
Per Ryan’s doctor
“Ryan's bone marrow biopsies are negative for tumor from both sides, and the NSE staining on the marrow biopsies are negative as well! Also, LDH and ferritins are OK. VMA/HVA and serum NSE are pending.”
Ryan has had so many bone marrow biopsies that he has permanent marks on his hips. Pat and I feel the marks will probably fade with time; as he grows.
Because of 3 new nodules/growths found on Ryan's liver during a routine MRI (done in August) Ryan will undergo a liver biopsy next Wednesday, September 8. Dr Stockman, Ryan’s surgeon, will try to biopsy at least 2 of the 3 new nodules on his liver. Ryan will probably need to stay in the hospital over night for observation as well. We anticipate having no problems attending Ryan's fundraiser on September 12.
We ask for your continued prayers for Ryan. Please pray the remaining blood and urine tests come back within the normal ranges, pray that Ryan’s surgery goes well (that the biopsy shows that the new nodules on his liver are benign). Pray for us parents to have continued strength.
Lastly, pray for so many other children battling this horrible illness.
Thursday, August 26, 2004 5:32 AM CDT Rise and go your way; your faith has made you well. Luke 17:19
The results of Ryan’s VMA/HVA urine test, a very specific test for neuroblastoma, came back normal. From what we were told by Ryan’s oncology nurse, the urine is sent all the way to Utah hence the reason for the 7 to 10 day waiting period for results.
Pat and I received word late yesterday afternoon about Ryan's urine markers. We were very happy to hear the results were even at the lower end of normal; as they were last month. Thank you Lord and prayer warriors!
While this is promising news.. the doctors at both institutions (i.e. Children's Hospital of Michigan and Memorial Sloan Kettering) are both very concerned by the new nodules found on Ryan's liver.
We met with Ryan’s surgeon today (Thursday) for a consult about the 3 new spots on his liver. The surgery is scheduled for early September. Ryan will undergo surgery for a biopsy (or full resection) of the new nodules on his liver.
Early next week Ryan will be having a bone marrow biopsy/aspirate, full chemistry blood work, urine, etc.
We ask for your continued prayers. Please pray that all the tests results (are benign)showing no evidence of disease. We also ask for your prayers for us parents; to have continued strength.
Below is the link that will take you to an article about Ryan; from our local newspaper last weekend.
http://www.tctimes.com/site/news.cfm?brd=2524&Nav_Sec=67412
Lastly, pray for the children and their parents who are also battling this horrible illness.
Wednesday, August 25, 2004 2:25 AM CDT Please keep Ryan in your prayers. The MRI showed 3 new spots on his liver and his oncologist is very concerned by this and would like a liver biopsy done. Pat and I will be taking Ryan for a consult with his surgeon on Thursday.
This is all very puzzling since his blood markers are in good ranges. Normally when Ryan has had a problem the LDH, NSE would shoot way up. We are still waiting to hear back about his urine markers.
Please pray that these spots are nothing and that Ryan's most recent urine markers come back with results in the normal range. Last month Ryan's urine markers were in the low end of normal.
Below is the link that will take you to an article about Ryan; from our local newspaper last weekend.
http://www.tctimes.com/site/news.cfm?brd=2524&Nav_Sec=67412
Saturday, August 21, 2004 10:05 AM CDT "And we can be confident that he will listen to us whenever we ask him for anything in line with his will . . "
1 John 5:14-15 NLT
We are still waiting to hear back about Ryan’s MRI from Monday. Also, we have not heard back about some of his blood chemistry (i.e. NSE, etc) or urine markers.
We did receive the results about Ryan’s ultrasound which showed his liver appears to be showing signs of healing. Thank you Lord and thank you prayer warriors!
That same evening we learned of Ryan's ultrasound results we took Ryan for a walk at our local High School. While we were walking we saw the most beautiful rainbow that made a complete arch; something Pat and I never saw before. We have no doubt that God was sending us a message of good things to come!
This past month we took Ryan to Potter Park Zoo in Lansing which was a lot of fun and gave us a touch of normalcy.
Today we will be taking Ryan to a Tiger’s Baseball game where he will be part of a pre-game ceremony. MLB is raising money for childhood cancer and Pat and I were asked if we could bring Ryan to the game.
This Sunday our local Tri-County newspaper will be having a story about Ryan; titled "Ryan’s Hope".
Please continue to keep Ryan in your prayers as well as so many other children suffering from cancer.
Friday, July 30, 2004 10:37 AM CDT "The LORD is good. When trouble comes, he is a strong refuge. And he knows everyone who trusts in him. "
Nahum 1:7 NLT
Update 8/2/2004
I read this morning on Alex Scott's website that she had passed away Sunday afternoon. Please keep her family in your prayers.
Link to CNN article about Alex Scott
http://www.cnn.com/2004/HEALTH/conditions/08/02/alex.lemonade.ap/index.html
www.caringbridge.org/page/alexscott
(Alex was somewhat of a celebrity who has raised close to a million dollars for pediatric cancers. She is 8 years old and was diagnosed with Neuroblastoma at only 1 year of age. She has been on the Today Show, etc.)
Also pray for Simon Vodosek and his family
http://www.simonsplace.org/
Note: We met Simon's mom last year(June 2003) at the NB Conference in Chicago
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Yesterday I prepared a draft of Ryan’s story that was requested for the upcoming Sept 12 fundraiser. Because it was rather lengthy, and may need to be shortened, I thought I would post the entire copy of the draft on Ryan’s website for others to read. I also have plans of printing off Ryan’s website information some time in the future so I wanted Ryan to have this letter included; to be able to read at a later time.
Writing Ryan’s story brought up so many raw emotions; but was probably therapeutic for me to do. After attending the conference, this past weekend, and hearing one of the speakers tell us NB parents about what we are or have gone through with this horrible cancer could be classified as a Post Traumatic Stress Disorder. I came to the realization that I am certainly there (and perhaps Pat too).
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Draft for Ryan's Fundraiser
My name is Linda Connolly and my husband Patrick and I have lived in Fenton on 2nd Street for approximately 10 years. With our marriage we always knew that having a family with children would play a very important part. However, due to problems conceiving a child we did not anticipate that it would take 7 yrs years before we would experience the birth of our first and only child. We were overjoyed beyond imagination with the birth of our son, Ryan, on October 14, 2002. We knew that we were truly blessed by the Lord and that Ryan would have such purpose in life; little did we know the fierce trial we would be facing when Ryan was only 5 weeks old.
In November of 2002, at 5 weeks of age, Ryan was admitted to Children’s Hospital of Michigan and diagnosed with Neuroblastoma, a cancer of the sympathetic nervous system. Within the first week of being admitted we were made aware of the seriousness of this horrible cancer and that we were very close to loosing our only child. When Ryan was first admitted to Children’s Hospital he was placed in the Neonatal Intensive Care Unit and was in a fight for his life. Because Ryan was unable to breathe unassisted he was put on a respirator and hooked to so many machines that Pat and I were very scared.
However, because of our faith in the Lord we had enough strength to get through some very difficult times. God would always have the right signs appear or the right people come to our aid whenever we were in need. As parents we prayed together over Ryan and at the hospital chapel constantly. We also were not shy in asking others to pray for our little guy. The doctors within days of telling us “he might not make it” noticed a change in a positive direction; which Pat and I attributed to the power of prayer. After approximately 2 months of living at a hospital we arrived home with our son on Christmas day (Dec 25, 2002). We thought we were at the end of this trial when Ryan’s cancer progressed last September of 2003.
Ryan has had countless days in the hospital with over 10 cycles of chemotherapy, numerous surgeries, etc. As of July 2004 Ryan underwent a bone marrow/stem cell harvest. Neuroblastoma is a monster of a cancer for so many children who after achieving a status of NED (No Evidence of Disease) may see the cancer return suddenly; even after years have gone by. But often when the monster reappears it is much more resilient; not responding to standard cancer therapy (i.e. chemo won’t work). Parents in desperation often seek out new studies to put their children in; at best with the hope of saving their lives. However, often at best the new study is only able to keep their child’s disease stable until a better treatment becomes available. Please note: Many NB children also NEVER obtain NED status after having numerous rounds of chemo treatments, etc.
In addition, although the incidence of Neuroblastoma has doubled. Neuroblastoma research receives only 8 percent of the total dollars dedicated for pediatric cancer research. We must see more dollars move towards Neuroblastoma research as 15 percent of the total pediatric cancer deaths are associated to Neuroblastoma.
Knowing that a recurrence of Neuroblastoma may even be a possibility for Ryan, oncologists from two different institutions (Children’s Hospital of Michigan and Memorial Sloan Kettering in New York City) recommended that we undergo the stem cell retrieval as a precaution. We were grateful that the procedure collected enough stem cells for 2 rainy day transplants.
At this point Ryan’s doctors are seeing no evidence of disease and this certainly is a step in the right direction. However, the oncologists are watching Ryan very closely; particularly the spots on his liver. Ryan’s has medicine 3x a week and a full blood chemistry completed twice monthly. He also undergoes monthly screenings, abdominal ultrasounds, urinalysis, and appointments with his oncologist. Every 2 to 3 months Ryan has a MRI and/or CT scan. A more sophisticated MIBG scan, in which Ryan is injected with radioactive isotope at the hospital the day prior to the scan, is conducted every 3 to 6 months. We also have Ryan’s heart and hearing tested on a routine basis; because of long term effects related to the treatment he completed. The med port, located in Ryan’s chest, is also maintained on a monthly basis. Because Ryan’s blood chemistry can jump around, making him less able to fight infections, we often have had to use caution in exposing Ryan to others. Also, Ryan is not able to have any immunizations so he can not be placed in a day care setting.
We have been in this fight for close to 2 years now. Our emotional, stress level and financial situation certainly has been stretched to new levels. When Ryan was initially hospitalized Pat and I made a vow before God that we would always testify that due to the grace of God our son will persevere and has through so many trials; as have mom and dad. We hope to be an example for others.
Monday, July 26, 2004 8:58 AM CDT Pat and I returned home on Sunday from the 3rd annual Neuroblastoma conference; held in Chicago. We met so many other wonderful parents and grandparents who are in this fight against this horrible illness. Pat and I also met terrific angel parents and grandparents of children who had lost their battle to this monster.
Many many thanks to Patricia Tallungan, president of the Children’s Neuroblastoma Cancer Foundation who organized this wonderful conference. Without Patricia this event would not be around. Several doctors/specialists, from across the country, spoke on various topics (studies/treatments, etc) which we would have no way of learning about without this conference. God Bless you.. Patricia!
In addition, the conference allowed us to meet and bond with others who understand the frustrations (stress, etc) we as parents and other family members are dealing with. Can’t imagine why Pat and I are so tired after a weekend away? Could it be because we stayed up till at least 2 am each night hanging out with a lot of the folks at the conference?
It was great weekend away which happened to be Pat’s birthday as well. My sister-in-law Cheryl, brother Doug, and nephew Brent watched Ryan while we attended the conference. Thank you Cheryl, Doug, and Brent!
Thursday, July 15, 2004 2:19 PM CDT We arrived home from the hospital early Tuesday morning. Ryan’s surgery to have a double lumen line put in went well. Unfortunately, he did have quite a bit of pain afterwards so the recovery nurse gave Ryan morphine.
After Ryan’s surgery he was transported over to Karmanos/Harper Hospital; since the hospitals are connected it was a pretty quick trip. The stem cell harvest/retrieval went very well. To be honest Pat and I were concerned how we would keep Ryan occupied while he was hooked up to the machine. However, due to the anesthesia and morphine Ryan slept the entire time.
The double lumen line was removed once Ryan's attending doctor saw that his platelet count was sufficient; pre-pheresis count approx 250k platelets and post-pheresis 117k platelets. Pat and I were very pleased with the facility and pheresis staff; they were very accommodating.
The next day I called the unit to learn the final counts for the retrieval and found out that they collected enough for at least 2 stem cell retrievals. Thank you Lord! Thank you prayer warriors; our prayers were answered!
Please continue to pray for Ryan and for all children and their families battling cancer (Joey, John, Christi, Gigi, Harrison, Eric, Beth, Isaiah, Anthony, Ethan, etc). Pray for the families dealing with the pain of losing their child; unfortunately this happens very often with NB.
Sunday, July 11, 2004 1:42 PM CDT We will be taking Ryan to Children’s Hospital for surgery early on Monday morning. Dr Stockman, who has operated on Ryan since his diagnosis, will be installing another specific type of port (placed in his chest area). The port is used for the stem cell retrieval. After recovery Ryan will be taken to Karmanos / Harper Hospital to begin the actual stem cell retrieval; assuming Ryan’s blood work shows the correct levels for his White Blood Count, etc.
Ryan’s port will be connected to a pheresis machine (machine which separates whole blood into its components) for a 5 hour retrieval on Monday. We anticipate the stem cell collection may take 1 to 3 days in total; until they collect the quantity of stem cells they require. After which Ryan’s port, will be pulled by the surgical team. Ryan will still keep his other med port for 6 months to a year post treatment.
Please keep Ryan in your prayers. Please pray that Ryan’s surgery and retrieval goes smoothly (and quickly). Pray for us parents to have continued strength.
Sunday, July 4, 2004 10:20 AM CDT Be thankful for your blessings
"It is good to give thanks to the Lord . . to proclaim your unfailing love in the morning, your faithfulness in the evening."
Psalm 92:1-2 NLT
We received good news regarding all of Ryan’s tests this week, every test came back NORMAL; maintaining Ryan’s NED status (obtained since March of this year). Ryan’s urine markers, LDH, were in the normal range. The NSE marker, we were really concerned with, dropped from around 36 to 16. Also, Ryan’s bone marrow is CLEAN and his liver is showing signs of improvement. A special thanks to all of Ryan’s prayer warriors; your prayers are working!! Please keep the prayers coming. Per Ryan’s oncologist “I am quite pleased by Ryan’s results”.
Of course above all
Thanks and praise to our Lord!
Fun Stuff.. It has been a few weeks so I will try to catch up. On Friday, June 25, Ryan had his first play date with Allison. This may be his first girlfriend; he seemed pretty enamored. When Allison was about to leave, with her mom,. Ryan pouted at first and then tried to pull her back into his play area. Daddy took a picture of Allison and Ryan which we will post to the website soon.
Last Sunday, we took Ryan to see his Great Aunt Effie who is 86 years young. He loved running through her house; was something new for him to explore.
This week Ryan also went into his first pool. Daddy made sure to film this special event. At first Ryan wasn’t really happy with being in the pool but came around to liking it later. Our neighbors and friends, Arnie and Lisa were over to enjoy Ryan’s pool event with us.
Yesterday, we went to our friends The Cool Family for their 4th of July party. Ryan wasn’t as interested in playing with Ian this time but he loved running around the yard. At one point Ian dropped a bottle he had and Ryan picked it up and handed it back to him; pretty amazing to us parents considering he has not been around young children. Ian’s dad Andy even shot off fireworks in the evening.
What’s next? Ryan’s surgery to install an additional port for the stem cell retrieval; tentative retrieval beginning on Monday, July 12. We will begin high dose shots to bring Ryan’s white count up this Thursday.
We plan on attending the NB conference, held in Chicago, later this month.
Please keep those prayers coming for Ryan and for all of the children suffering from this horrible illness.
Monday, June 21, 2004 1:15 PM CDT Paige became an angel early this morning. Please pray for the parents to have strength during this very difficult time.
http://www.paigerutter.com/
Update as of Tuesday, 6/22 - We learned this afternoon that Ryan's NSE (neuron-specific enolase; a substance that has been detected in patients with certain tumors, namely neuroblastoma, etc) is elevated so we will be repeating all his blood and urine work. Although all of Ryan's other markers looked pretty good his oncologist wants to double check to be sure.
Please pray that Ryan's NSE goes back to normal.
Last Thursday, Ryan had his first unofficial play date with Ian Cool; who is 4 months younger. Ryan and Ian had a blast together. Ryan even gave Ian’s big sister (Makenzie) a hug.
This past weekend we went up north for a few days to Uncle Rich and Aunt Helen’s cottage. It was great to get away. Uncle Rich took all of us for a ride around the lake on his boat; Ryan’s very first boat ride. I’m sure the time will come (before you know it) when he will beg Uncle Rich to pull him on a tube around the lake; as his cousins Tina and Becca.
We received good news last Friday; Ryan’s VMA & HVA urine markers were both in the normal range. Thank you Lord; we are grateful for the good news.
Ryan will be going through a series of tests this week; MIBG scan, Bone Marrow Biopsy, Bone Marrow Aspirate, etc. We ask for your continued prayers for Ryan. Please pray that Ryan’s scans and tests results maintain Ryan’s NED (No Evidence of Disease) status. Also, pray that Ryan has no side effects or pain; particularly since the bone marrow biopsy can be painful.
P.S. NEW PICTURE OF RYAN ADDED TODAY.
We were requested to bring Ryan to the Relay for Life / Cancer Fund raiser being held in Fenton this weekend. We will be taking Ryan to the function on Friday at 6 pm to complete the survivor lap.
Monday, June 7, 2004 5:41 PM CDT Please pray for Paige Rutter and her family who are going through a very difficult time right now.
http://www.paigerutter.com/
Not much news to report. Ryan is doing real well and seems to be past some of rough teething stage. Ryan is now sleeping soundly during the night which means mom and dad can too!
A couple of weeks ago we traveled to North Muskegon to visit Ryan’s Aunt Cheryl, Uncle Doug, and cousins Jason & Brent. Brent did a wonderful job watching and playing with Ryan. It was great to get away for a weekend. The home cooked meals (perch, etc) were delicious!
Ryan will be going through some tests during the next few weeks. It is hard to believe that 3 months have already flown by since Ryan’s last MIBG scan at Memorial Sloan Kettering. This coming Friday Ryan will be at Children’s for an ultrasound, checkup with his oncologist, etc. It looks like Ryan’s stem cell retrieval will happen in July.
Please keep Ryan in your prayers as well as so many other children battling this horrible illness.
Saturday, May 22, 2004 12:32 AM CDT Please pray for Paige and her family.
http://www.paigerutter.com/
also
pray for the Kelley family who lost their infant son Brice on May 31
http://brice-kelley.paigefile.com/
Just a brief update.
On Friday, we took Ryan to Children’s Hospital for an echocardiogram; which Ryan passed. We also spoke with Ryan’s oncologist to find out the results of the Tumor Board Meeting held this past Wednesday. Although the recent MRI and Ultrasound still showed spots (current scans are stable when compared to the last set of scans) the tumor board decided that Ryan would not need to undergo a biopsy of his liver at this time. However, Ryan would need to be monitored very closely each month. His blood work and urine markers were also in the normal range. All thanks and praise to God!
We also toured the Karmanos Cancer Center where Ryan would have his bone marrow retrieval done; part of Harper Hospital.
What’s next? Ryan’s oncologist would like Ryan to undergo another MIBG scan sometime in June to compare with the one done at Memorial Sloan Kettering 3 months ago. Ryan’s stem cell retrieval will also be done sometime in June.
We ask for your continued prayers for Ryan and for so many other children battling this horrible illness.
Monday, May 17, 2004 9:56 PM CDT I am the way, and the truth, and the life; no one comes to the Father, but by me. John 14:6
This past Friday we took Ryan to Children’s Hospital for his hearing test; Ryan passed with flying colors. Thank you Lord! Some of the chemotherapy (i.e. Carboplatin) can cause a hearing loss so Ryan must undergo routine hearing tests.
In addition, Ryan had an ultrasound, visit with his oncologist, blood work, urine, etc. Since this was a booboo day we bought him a booboo present; a toy of course (pretend outdoor grill.. pretty cool toy).
Ryan’s oncologist, Dr Sarnaik, was pleased with his checkup. Particularly happy that she was unable to feel Ryan’s liver (Proof to the power of prayer). Also, Ryan’s CBC results all looked normal which was great news.
Today Ryan had an hour long MRI scan at Children’s Hospital. Fortunately, the scan went rather smooth with Ryan sedated. Unfortunately we were unaware that Ryan’s port would need to be accessed for the MRI so we did not apply the numbing cream on his port. Ouch! Poor Ryan had to have his port accessed with nothing to numb the area. Daddy wanted to buy Ryan another booboo present but when we got home there was a present on our doorstep for Ryan; from our wonderful friends the Murphys. Ryan loves his new Bob the Builder toy! Thank you so much Anthony, Maureen, Taylor and Marc.
On Friday we will return to Children’s for an echocardiogram. In the afternoon we are planning on touring the BM transplant area (Karmonos/Harper Hospital); location where Ryan would have the stem cell retrieval procedure done.
We expect to have the ultrasound or MRI scan results back later this week. Please pray for clean scans so that we are able to maintain Ryan’s NED status. Based on the results of the tests Ryan may or may not have surgery. The tumor board will be meeting soon to discuss Ryan’s results.
Pat and I were happy to hear that Ryan’s oncologist took the time to attend a Neuroblastoma conference; held in California. She specifically asked questions about Ryan’s situation which was great to know.
What’s next? We are looking to have Ryan’s stem cell retrieval very soon. Ryan will need to undergo another bone marrow biopsy first. Ryan’s oncologist expressed on various occasions, during Ryan’s checkups, that we need a vacation. We definitely agree but haven’t made any vacation plans; hopefully we will soon.
PRAYERS NEEDED!!!!!!!!!!!!!!!!!
PLEASE KEEP PAIGE, AND HER PARENTS, IN YOUR PRAYERS. http://www.paigerutter.com/
Friday, May 7, 2004 10:43 PM CDT Proverbs 4:20-22 – 20 My son, attend to my words; incline thine ear unto my sayings. 21 Let them not depart from thine eyes; keep them in the midst of thine heart. 22 For they are life unto those that find them, and health to all their flesh. (KJV)
Sorry that it has taken us awhile to update Ryan’s site. Ryan is doing well with the exception of teething; he has kept mom and dad up each night for the past week or so.
Ryan is now close to 4 weeks post chemo. Pat and I took Ryan to see his general pediatrician today since it has been quite awhile. We thought Ryan might have an ear infection but his ears checked out fine; Ryan was pulling on his ears because of teething.
Ryan absolutely loves to go for walks, loves to be outside. We now have some toys set up for him to play with in the backyard (little tykes swing set, pirate ship and a sandbox).
We feel so very blessed each and every day with Ryan. Praise God! He is such a joy to us and others who come in contact with him! It is amazing the amount of energy he has; loves to run, etc (treatment has really never slowed him down).
A nurse, from Children’s Hospital, who is very fond of Ryan (vice versa) sent Ryan a very cool postcard from Australian where she is currently vacationing. We plan on putting the postcard in Ryan’s scrapbook.
What’s next? We would love to say a vacation (we really need one) BUT Ryan will be going through scans, tests, etc during the next few weeks; beginning with next Friday.
We acknowledge the healing power of prayers and ask for your continued prayer for Ryan. Please pray for a complete healing for Ryan. Pray (in Jesus’ Name) that Ryan’s liver be totally clean; free of any spots, etc. That he has no infections, side effects and maintains NED (No Evidence of Disease) status.
We also ask that you pray for a complete healing for so many other children suffering from this horrible illness (Joey, Paige, Gigi, Christina, John, Harrison, Alex, Lexy, Chandler, etc)
God Bless,
The Connolly Family
Monday, April 19, 2004 1:01 PM CDT Ryan is now home recovering from his chemo cycle. Last week Ryan did have some problems holding milk down, after this past cycle, but by the end of the week he was doing great. He is now walking, running, walking backwards, climbing stairs, etc. Ryan’s favorite thing is to climb on the family room coffee table and dance. He gets on his swing all by himself and likes to climb up on his swing set to go down his slide.
Ryan also loves to go for walks with mommy and daddy. Of course we do have to worry about his sun exposure due to chemo treatment.
What’s next? Besides the regular CBC (blood work) pokes at the local Quest lab; Ryan is so use to the pokes that he doesn’t even cry. We are awaiting results of a base line ultrasound completed prior to his last chemo cycle.
Pat and I will be taking Ryan to Children’s this Friday for a checkup with his oncologist. We already consulted with the Bone Marrow transplant specialist to discuss Ryan’s stem cell retrieval. The retrieval would require Ryan having surgery first to have another Broviac port put in. There is also a liver surgery/biopsy that will be done as well sometime soon. Also, his MRI scan is scheduled for May 17.
We ask for your continued prayers for Ryan. Please pray that Ryan’s body and especially his liver is healthy (clean of any spots, etc).
Saturday, April 10, 2004 1:33 PM CDT Ryan will be admitted sometime on Easter Sunday for his 8th round of chemo of COG 3961. After which, approximately 3 weeks post chemo, Ryan will go through various tests (urine, blood, MRI, ultrasound, etc).
In the world of cancer treatment you learn quickly how to roll with the punches; Life is subject to change very often. As an added insurance, the oncology group recently suggested that Ryan also undergo a stem cell rescue. Yesterday we learned that the oncology group is recommending that Ryan have surgery; a biopsy of his liver.
Although Ryan’s MIBG scan and Bone Marrow is showing No Evidence of Disease (Thank you God!) the recent CT scan of Ryan’s liver is showing spots (stable to the Dec 2003 scan). There is a very good possibly that Ryan’s liver is benign and the spots on Ryan’s liver are scars, or calcium deposits; spots which may remain for years to come. However, before ending Ryan's treatment the oncology group would feel more comfortable having a biopsy completed first.
So we are looking at returning to Memorial Sloan Kettering in NYC, within the next couple of months, to see the well known pediatric cancer surgeon Dr LaQuagla. Hopefully, the surgery will be done via laparoscopy.
We are asking for continued prayers for Ryan. PLEASE pray that Ryan’s liver is benign so we may end his treatment, that Ryan has NO side effects or complications, and for continued strength for us parents. Please pray for a complete healing of Ryan’s body in Jesus Holy Name!
Have a wonderful Easter.
Saturday, April 3, 2004 10:33 AM CST "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
Ryan is at home doing very well after his 7th cycle of Chemo (COG 3961). As of Friday we were able to stop his daily shots; normally given after a chemo cycle to raise Ryan’s white blood count.
Pat is helping out the Knights of Columbus this morning with their Annual Tootsie Roll Drive. We will be taking Ryan to the photography studio this afternoon for his Easter photo. Ryan's Aunt Helen and cousin Becka will be coming out to babysit this evening so mom and dad can go to a movie.
What’s next? Besides the normal lab and clinic visits Ryan's last round of chemo #8 will be scheduled soon; very good possibility that Ryan may be admitted on Easter Sunday.
Tuesday, March 16, 2004 0:28 AM CST Update on Monday, March 22..
Ryan will be admitted today for round 7 of chemo after a hearing test and blood work. We were hoping to have Ryan admitted last Friday but unfortunately no beds were available. Also, 5 other children were waiting to be admitted ahead of Ryan.
Pray for our little guy that his treatment goes smoothly; that he endures NO side effects or complications. That he maintains NED status.
Please pray for us parents who need strength/energy to handle a running infant who will be attached to an IV.
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Oh.. How we dream of having some sense of normalcy in our life! A life without running to hospitals and clinics. A life where we could actually go somewhere nice for a vacation or do absolutely nothing; instead of time spent at a hospital.
The time in between chemo treatments tricks you into feeling like your life is going back to normal but before you know it your heading back to the hospital again.
Although Pat and I truly dread giving Ryan more chemo; a recommendation was made by Memorial Sloan Kettering to finish the current COG / Study. For the COG/study Ryan is currently under; there are a total of 8 chemo cycles of which Ryan has finished 6.
In speaking to Dr Cheung at Sloan, over a week ago, Dr Cheung discussed that this would be the dilemma we as parents would have to face; whether to finish the protocol known to work for some infants having NB.
It may work to stop at #6 but would we want to risk stopping short of a study known to work for some infants. What is the magic chemo cycle number anyway? If we only knew.
The tumor board at Children’s Hospital will be discussing Sloan’s recommendation on Wednesday. Ryan may be admitted as early as this weekend for round #7 of 8 treatments.
Learned Monday afternoon that Sloan also recommended that Ryan undergo an Autolgous Peripheral stem cell Rescue; as an added insurance policy around 6 weeks post chemo.
Note: With an autolgous bone marrow transplant samples of the patient's own bone marrow or peripheral blood stem cells can be removed, frozen, and stored; returned to the marrow at a later time.
Please continue to keep the prayers coming for Ryan. Pray that the completion of this COG/study is all Ryan will ever need, that Ryan endures no complications or side effects and that he achieves NED status. Pray for continued strength for us parents too.
We give all thanks to the Lord for the wonderful news regarding Ryan’s test results we have received thus far. Note; Last Tuesday we learned that Ryan's MIBG scan and Bone Marrow (biopsy and aspirate) showed No evidence of Neuroblastoma. The CT showed spots stable with the prior scan from December. Please pray that Ryan's next CT scan is clear.
We know through God all things are possible and continue to hold steadfast to our faith.
Thursday, March 11, 2004 10:20 PM CST Last Wednesday, March 4, Ryan met the Pecchie sisters, Pat’s wonderful friends from back when he was in high school. Diane and Debbie stopped by at the Pediatric Day Hospital to meet Ryan. It was wonderful to see them! They even gave Ryan some great new toys. Of course mommy requested that they both say a prayer of healing over Ryan before they left. Thank you Debbie and Diane! IT WORKED!!!!
It was great that daddy is a native New Yorker since Ryan and mommy didn’t even have to worry about getting lost; daddy was our own private tour guide. Mommy only wishes he wouldn’t walk so fast. During one of our walks we picked up a Yankees baseball outfit for Ryan (so cute)!
On Thursday Ryan met his Uncle Ben for the first time. Of course Auntie Barbara had to see her nephew again. We all went out for a wonderful dinner at a Mexican restaurant; which Ryan slept though. We paid dearly as Ryan woke up later in the evening; stayed up for quite some time.
On Friday, Grandma Howard also stopped by the Ronald McDonald House in the AM to visit us and to see Ryan for the first time; before we had to go to the hospital. Ryan also received wonderful gifts from Grandma; Clifford the dog books and 4 very cute stuffed animals.
Friday afternoon Ryan had his MIBG scan which took 1.5 hours. Daddy stayed with Ryan during the entire scan, Later that day we met with Dr Cheung; the head of the Neuroblastoma area at Memorial Sloan Kettering. Dr Cheung commented jokingly about how he had heard that Tom Hanks was visiting. Mom took a great picture of Tom Hanks (aka Daddy) and Dr Cheung. The 3 of us discussed the results of Ryan’s CT scan after Dr Cheung consulted with Dr Kushner about Ryan’s past history.
Although Ryan’s CT scan showed spots, they were stable when compared to December. Dr Cheung indicated that this is pretty normal and is not necessarily bad (could be calcium deposits, etc). The spots can remain for years; something we learned from his oncologist back in Michigan.
Dr Cheung informed us that Ryan probably had 2 forms of NB (Infant Stage 4 and 4S). Because Ryan has a favorable N-Myc (Unamplified - less aggressive form) Dr Cheung indicated "IN GENERAL "INFANTS" like Ryan have a 95 percent survival rate." Note: Children with stage 4 NB often have a much lower survival rate; so please be sure to pray for these children too who are fighting dearly against this horrible illness. Dr Cheung indicated that our dilemma will be whether we should finish the remaining cycles of chemo (2 cycles left) which would finish the COG/study Ryan is under. In any case, Ryan will be monitored very closely for some time; especially during the first 6 months post treatment.
We arrived home at 2 AM last Sunday after a 12.5 hour drive. We did purchase a portable DVD player which entertained Ryan during the long trip.
Of course he watched Baby Einstein. Mom and Dad thought he might be interested in other movies now (such as Finding Nemo); Ryan only wanted to watch Baby Einstein.
All Thanks and Praise to God! God is great!!!! Dr Kushner left a message late Tuesday night that he had Great News! Ryan’s MIBG shows NO evidence of Neuroblastoma, Ryan’s Bone Marrow and preliminary review of the Bone Marrow Aspirate showed NO evidence of Neuroblastoma. We are still awaiting the results of his urine tests and their recommendations. We may not obtain NED status yet, due to spots shown on the CT scan, so please keep the prayers coming for Ryan to obtain an NED status. Our battle is not entirely over yet but we know by faith that it is only a matter of time.
The second opinion from Memorial Sloan Kettering verified that Ryan’s oncologist, Dr Sarnaik, at Children’s Hospital of Detroit provided the correct medical care/treatment for Ryan’s staging. Dr Sarnaik is a wonderful oncologist and individual.
Unfortunately, we learned some horrible news yesterday; that our dog Barney was hit by a car and killed on Wednesday of last week while we were in NYC. Barney was staying with relatives during the past 7 months because of Ryan’s treatment. This was very hard for Pat and I as we had raised Barney from a pup; he was over 10 yrs old. Barney kept running away and was probably trying to head home.
We anticipate learning more about Ryan's remaining test results and treatment recommendations by early next week. New pictures, from our trip, to be posted very soon!
God blesses us with such joy each and every day with Ryan. Tonight he went up to daddy and gave him a kiss. He also is adding more words to his vocabulary.
Thank you everyone for your continued support and most importantly for your prayers!
Thursday, March 4, 2004 11:53 AM CST We arrived in NYC on Sunday evening after a 12.5 hour drive; thankfully the weather was very cooperative. Thank you Lord! We are staying at the Ronald McDonald House located in the upper east side of Manhattan; walking distances to Memorial Sloan Kettering. Sorry for the delay in updating the site but we have been extremely busy. I am typing this fast because we need to go to the hospital soon.
Thank you to our great friends (The Murphy family) whom we Love very much; consider them our family. They delivered several care packages (food, etc) for Ryan and other stuff; delivered on Sunday before our arrival. God blessed us with such wonderful friends!
On Monday we took Ryan for a long walk through Central park. Ryan also visited one of the Sesame Street offices on Monday and made many friends; especially girlfriends. Ryan took over the office and left with a couple bags of great Sesame Street toys. Later in the day Ryan met his Uncle Terry and Rob (very close friends of ours).
On Tuesday, Ryan met his Grandpa, Aunt Barbara and Uncle Tom for the very first time. Earlier in the day Ryan had his first visit at Memorial Sloan Kettering. He went through the normal routine, CBC (blood work), weight, etc and a visit with the oncologist; Dr Kushner. Dr Kushner got a real kick out of how daddy looks so much like Tom Hanks. The hospital is very busy (my jaw dropped as I step off the elevator and saw the large group of children and families) but everyone was so friendly and helpful we became comfortable right away.
Dr Kushner went over Ryan’s past history and expressed concerned with an abnormal chromosome they had seen; normally means recurrence. It looks like Ryan will have to be watched and tested more often at least initially.
On Wednesday, Ryan had a bone marrow biopsy and aspirate on the front and back of his hips (4 places) so he had a lot of pain afterwards. He also had a full CT scan. The Murphy’s came by for a visit yesterday evening; it was great to see them and their children.
Today we are going back for his MIBG injection. On Friday, 24 hours after the injection, is the MIBG scan. We will be meeting with Dr Kushner on Friday (after his MIBG scan) to discuss some of the initial results.
Please pray that Ryan achieve NED Status with no recurrence EVER!
Saturday, February 14, 2004 7:59 PM CST
"Praise the Lord!
Happy are those who fear the Lord. Yes, happy are those who delight in doing what he commands. Their children will be successful everywhere; an entire generation of godly people will be blessed."
Psalm 112:1-2
"Such people will not be overcome by evil circumstances. Those who are righteous will be long remembered.
They do not fear bad news; they confidently trust the LORD to care for them. They are confident and fearless and can face their foes triumphantly."
Psalm 112:7-8
Happy Valentines Day. It is hard to believe Ryan is now 16 months old today.
On Friday, February 13, Pat and I took Ryan into Children’s Hospital for a checkup with his oncologist. Dr Sarnaik was happy to see how well Ryan looked and could not even feel Ryan’s liver during his examination. Thank you Lord!
Prior to any exam with his oncologist, Ryan’s blood is always drawn, vitals, length and weight is taken. Ryan is now 34 inches long and 28 lbs; still growing like a weed. We were happy to learn that Ryan’s blood counts were good enough to stop his nightly Neupogen shots.
Since Ryan’s ANC was at a whopping 5000 Pat, Ryan and I went out for an early Valentine’s dinner today. Of course we all exchanged Valentines cards and gifts. Ryan received a new Leap Frog toy from mom and dad. Mom bought dad a golf certificate to Carl’s Golf Land and Dad bought mom some Spa goodies (facial, manicure, etc). Somehow even Ryan bought mommy and daddy gifts too. . Wow! I wonder how he did that?
So what’s next? Besides the routine blood/lab work and visits to the oncologist, Ryan will be going through a series of diagnostic tests at Memorial Sloan Kettering around the beginning of March. The tests will be conducted at Sloan this time instead of Children’s Hospital.
We continue to ask for your prayers for Ryan and look forward to hearing a NED status (No Evidence of Disease) based on the results of the upcoming tests from Sloan Kettering. Of course we give all thanks and praise to the Lord Almighty.
Friday, February 6, 2004 9:25 AM CST Ryan is now home and as the days go by he is feeling better and better. It is so difficult to see him throw up constantly after chemotherapy; breaks our hearts. He is also teething which doesn’t help. Pat and I always buy Ryan a new toy once he arrives home from hospital; makes mom and dad feel better. The toys seem to get bigger each time. This time around daddy purchased a little tykes swing set complete with a slide. It is now set up in our living room for Ryan.
During the last 3 or 4 cycles of chemo Ryan has had a certain resident care for him during his hospital stays. The resident’s name was Tina Kelley. We got to know Tina pretty well during her rounds and thought so much of her.
Just the other day Tina made sure that she stopped by (even had her coat on) to see Ryan before she left the hospital; making sure everything was under control. She mentioned to both Pat and I how the oncology group doing rounds was looking at her, from across the hall, probably wondering why she hadn’t left the hospital to go home. Unfortunately, Tina never made it home that day and was killed in an automobile accident. We received a phone call from the hospital informing us of her accident and that she had passed. Pat and I couldn’t believe what we were hearing. Tina was such a beautiful young Christian woman (inside and out) who had such a bright future.
Pat and I went over our conversation with her that day; realizing we were probably the last folks to speak with her. Our conversation with Tina was upbeat as always. We joked with her about how everyone wanted to set her up on a date (including us), etc. We remembered her wonderful smile as she was leaving. That same day I pulled out my camera to take a picture of the oncology group doing rounds, for Ryan’s photo album. That picture included Tina and was requested for her memorial service.
We know that Tina is with her heavenly father. In fact Ryan was looking up yesterday and smiling; Pat and I figure Tina is now an angel visiting Ryan. We ask that you pray for Tina’s family who never had a chance to say goodbye to her. We will never forget Tina; her memory will remain in our hearts.
Friday, January 30, 2004 6:20 PM CST Update as of Monday, Feb 2, 2004
We were hoping to have Ryan admitted on Sunday but we are still waiting (at home) for a room to become available at Children's Hospital.
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"Beloved, I pray that you may prosper in every way and may keep well, even as your soul keeps well and prospers".
3 John 2
Pat and I took Ryan to the Children’s Hospital oncology clinic today for a checkup. Ryan’s oncologist, Dr Sarnaik, felt his counts were good enough for Ryan to have another round of chemo; Ryan will be going in for treatment sometime Sunday. Ryan's treatment will include 3 types of chemo; one of the chemos which always makes Ryan (and most kids) very nausated is named Doxorubicin. Please pray that Ryan goes through this treatment cycle with very little or (even better) No Nausea.
Ryan's treatment and the many prayers are showing positive signs; Dr Sarnaik indicated to Pat and me that she could barely feel his liver. This is such wonderful news.. Thank you Lord!
Often I have been told that Pat and I deserve so much credit for how well Ryan is doing with his treatment and how strong we have been through this ordeal. We give all thanks and credit to the Lord;. through him we gain our strength and courage.
I had a wonderful dream the other night, something I have never experienced before in my life, I dreamt the Lord clearly appeared to me. I rarely recall any of my dreams so this dream was very meaningful. I felt the Lord’s message to Pat and I was to continue to stay strong in faith; that he is always with us.
Pat and I continue to testify to the power of prayer. We thank you from the bottom of our hearts for praying for Ryan and continue to request that you lift Ryan up in pray. Please pray that this treatment cycle will be Ryan’s last round of chemo, that Ryan endures no side effects or complications, that Ryan obtains a No Evidence of Disease status from the medical community (a complete healing from the Lord above).
Ryan is walking real well now. He likes to ride his cycle around the house; chasing daddy. Ryan is able to get on the seat all by himself and steers real well around the house. As of today, at 15 months of age, Ryan weights 28 pounds and is 33 inches in length; future football player.
What’s next? Approximately 3 to 4 weeks after treatment we will be taking Ryan to Memorial Sloan Kettering for all of his testing (Bone marrow biopsy, Bone marrow aspirate, CT scan, MIBG scan, etc).
Friday, January 16, 2004 6:48 PM CST Ryan is doing well after some much needed rest; mom and dad too! There is certainly no place like home after a hospital stay.
We did introduce something new to Ryan during his hospital stay. Since Ryan would not drink milk; probably due to change in his taste buds that chemo left. Pat thought we could try to give him chocolate milk which worked great!
We always do everything possible to make sure Ryan has enough hydration which is very important before and after chemo.
Now that Ryan is home his taste buds are getting back to normal; he is back to drinking regular milk.
Fun stuff..
In the past month Ryan started to walk across the our dining/living room but seems to like to challenge himself to walk more whenever music is playing; very music oriented. He is also starting to mimic words; like Ooolalaa from his Baby Einstein video, etc.
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Wednesday, January 14, 2004 11:56 AM CST
"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
We arrived home from the hospital at 2 AM this morning after an extremely stressful stay (we are very sleep deprived); with Ryan getting older the hospital stays have become more challenging. Ryan is developing a pretty good memory at this point and can become very upset when you would hold his arms for any reason.
Unfortunately, during this stay, he had to have a good size needle reinserted into his med port (located in his chest) without the skin being numbed. Pat and I would hold him down while the IV team nurse inserted the needle.
The IV team had to check his port again last night because his nurse was unable to flush his port due to the needle moving out of position; fortunately the port did not have to be reassessed again. Thank you Doris from the IV team and most of all thank you God!
Pat and I are becoming very familiar with the chemo combinations and how well Ryan will react to treatment. This past cycle was a repeat of cycle #3; which he does not really get too sick with (with the help of anti-nausea medicine). The next treatment will be much harder on him due to the type of chemo.
Please continue to pray for Ryan. Also pray for Pat and me to have continued strength during this time.
What's next? Routine blood work, checkups, another treatment in 3 to 4 weeks. We will be praying hard that this will be his last cycle. His liver is showing a great improvement this treatment is hopefully cleanup of the remaining tumors. His next series of tests will be done in New York City at Memorial Sloan Kettering; tentatively 6 to 8 weeks from now.
P.S. Special thanks to the folks at the MetLife New Center One office in Detroit for their generous donation of supplies to Ronald McDonald House during the holidays. It will certainly be put to good use.
Saturday, January 10, 2004 10:16 AM CST As of Friday, January 9, Ryan's ANC was at 1200; on Monday, January 5, Ryan's ANC was around 650. Because the ANC is now at a good level Ryan will be allowed to have chemo treatment.
We are currently waiting for a room at Children's Hospital to open up on the 6th floor; several very sick kids are being admitted to the 6th before Ryan due to infections, etc. Once admitted Ryan will be in the hospital for a 3 day treatment.
Please keep praying for our little guy.
Tuesday, December 30, 2003 7:59 AM CST ******************************************************************************
Update as of Tuesday, January 6
Ryan's ANC was around 600 yesterday so Ryan was not admitted to the hospital for treatment.
The oncology group at Children's Hospital would like Ryan's ANC to be at least 750 before starting a cycle of chemo.
We will be taking Ryan back to Children's clinc later this week to do labs and if his counts are at a good level Ryan will be admitted for treatment.
Please keep Ryan in your prayers.
P.S. Thank you Father Harvey for stopping by on Sunday to pray over Ryan.
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We did not anticipate learning about Ryan’s medical status until early January. However, because Ryan’s wonderful oncologist took the time to sit with the radiologist and found there were still spots remaining in his liver she felt it was best to discuss Ryan’s case ASAP with her peers; not waste precious time.
Ryan has indeed showed improvement in his liver but spots still remain; confirmed by an uptake from the MIBG scan. Both Children’s Hospital of Detroit and Sloan Kettering Memorial of NYC (Sloan is doing a concurrent second opinion) agreed that 2 more rounds of chemo should be done. The results of Ryan’s bone marrow biopsy showed no disease (Thank you Lord!) but the bone marrow aspirate showed some “suspicious” cells; malignancy can not be ruled in or ruled out from the aspirate. However, Ryan’s MIBG scan did not show uptake on the bone marrow only the liver.
Although it broke our hearts deeply to learn that Ryan would need to undergo another 2 rounds of chemo (starting next week) we are thankful that his liver has shown such a great improvement and is heading in the right direction. Pat and I truly believe Ryan will be healed in God’s time not by ours. We ask for your prayers for Ryan but also for Pat and me; for continued strength.
We decided to spend a quiet Christmas at home to avoid Ryan coming in contact with the Flu virus. With so many viruses around we really have not gone anywhere with Ryan lately; not worth risking with him being so young and immune suppressed. Ryan’s oncologist agreed, with keeping him close to home, since she has seen a lot of very sick children who have caught some sort of virus in the past month.
Santa was very good to Ryan this year; so many new toys! But since us parents spend so much time playing with Ryan’s toys to entertain him; we were just as excited. Ryan wants to walk on his own so badly; he is taking more and more steps each day. Last night he would turn on one of his musical toys and would start walking out from the couch right towards daddy with a big smile; repeating this several times (turning the same musical toy on and walking). Moments like this are truly priceless for Mom and Dad!
What’s next? Ryan’s 1st of 2 treatments will start next week. Once he has finished with the 2 rounds Pat and I will probably be taking Ryan to NYC for his next set of follow-up tests at Sloan Kettering. At this point Sloan would like to do “live” testing on their site and not have films (pathology slides, etc) sent to them.
Sunday, December 21, 2003 8:37 PM CST He sends forth His Word and heals them and rescues them from the pit and destruction. Psalm 107:20
ADDED NEW CHRISTMAS PHOTOS OF RYAN
Ryan is recovering from a slight cold. He hasn’t felt very well since early last week. Fortunately his temperature never went above 100 which was a relief (if the temp went over 100 Ryan would be admitted to Children’s Hospital). Pat and I were pretty concerned that Ryan was becoming dehydrated since he would not drink many fluids.
Ryan is is now on the mend and feeling much better. Thank you Lord!! Hopefully we will have an uneventful night; catch up on some much needed sleep.
What’s next? Ryan will be going to Children’s for his routine clinic apt on Tuesday, December 23. Last week Ryan went through several tests (scans, biopsy/surgery, etc), however, we probably won’t hear much about the results until sometime early January. Please keep Ryan in your thoughts and prayers; pray that Ryan obtains NED (No Evidence of Disease) status from the medical community.
Enjoy your holidays and be sure to remember the true meaning of Christmas.
Thursday, December 18, 2003 4:48 AM CST We spent over 9 hours with Ryan at ChildrenÂ’s Hospital on Wednesday due to all of his tests, surgery, etc. It is amazing how much the little guy went through yesterday. Ryan was sedated pretty heavily by the anesthesiologist in outpatient surgery; to get him through surgery and a 2 hour MIBG Scan. Prior to having surgery, earlier in the day, Ryan had an echocardiogram; which he passed with flying colors. The echocardiogram was required due to the type of chemo he has had; prerequisite before being sedated for surgery.
Several hours later, once we were allowed to see Ryan in recovery, he was still pretty out of it so RyanÂ’s nurse suggested that we give him a popsicle to help wake him up. Ryan certainly liked the popsicle, mommy fed the popsicle to him, and he was wide awake by the time he finished eating it.
Earlier yesterday morning during a visit with an oncologist Ryan had his picture taken with Santa who showed up at the clinic. Daddy decorated RyanÂ’s card that Mrs Claus gave us to put RyanÂ’s picture in. Ryan also received a really cool toy from Santa.
After we arrived home yesterday evening we gave Ryan additional medication to help ease the pain from the bone marrow biopsy and aspiration (done bilaterally on both sides of hips).
Unfortunately, Ryan has also developed a runny nose which Pat and I are monitoring very closely. His temp this afternoon has been running around 99.5 if it reaches 100.4 he will need to go back to Children's Hospital for blood work from his port and vein; which could also mean being hospitalized for up to a week.
WhatÂ’s next? Pat and I have an apt with RyanÂ’s oncologist on December 23. We hope to learn some of the results from RyanÂ’s tests on that day. However, we were told by an oncologist on Wednesday that it will probably be a few weeks (early January) to have everything back and thoroughly analyzed by the oncology group, tumor board, etc.
Having tests run during the holiday season doesnÂ’t help matters. The tumor board, which normally meets each Wednesday to discuss cases, recessed until after the holidays. Everything is also being sent to Sloan Kettering (out of NYC) to obtain a concurrent second opinion.
Tuesday, December 16, 2003 9:50 AM CST God did extraordinary miracles through Paul, so that even handkerchiefs and aprons that had touched him were taken to the sick, and their illnesses were cured and the evil spirits left them. Acts 19:11-12 (NIV)
We enjoyed some wonderful family events this past weekend; attended the Radio City Rockettes at the Fox Theatre which Ryan really enjoyed. Also, attended a Christmas party at Comerica Park. Ryan has seen so many Santa’s in the past week he will probably begin to think they are part of our family. We can’t wait to get his Christmas photos taken with Santa back; they came out adorable.
Ryan is doing real well and trying to take more and more steps with each passing day. Other than teething he is feeling great. We are so blessed by the Lord to have such a happy baby.
Today Ryan will be going to Children’s Hospital for a MIBG injection; he is given iodine drops in his milk, for 5 days, to protect his organs from the radioactive material. On Thursday Ryan is scheduled for an echocardiogram, after which he will be taken to outpatient surgery for sedation and a bone marrow biopsy and aspiration; a quick but very painful procedure. Once the bone marrow biopsy and aspiration is done Ryan will be transported to radiology, while he is still sedated, for an MIBG scan.
At Ryan’s last clinical apt, this past Friday, the oncologist was happy that she could barely feel his liver; great news. Thank you Lord! We pray for wonderful news (No Evidence of Disease) for Christmas. Pat and I are in agreement that Ryan is healed but realize it will happen in God’s time not ours.
Monday, December 8, 2003 7:07 AM CST Children are a gift from the Lord; they are a reward from him.
Psalm 127:3 NLT
Update as of 10/12/2003 12:46 AM
Friday will be a long day for the Connolly family. Ryan will be going to the clinic around 9 AM for a blood draw, checkup with his oncologist, etc. Ryan will not be happy since he is only allowed to have clear liquids from 5 AM until 8 AM. After 8 AM nothing to eat or drink until 11 AM. At 11 AM Ryan is only allowed to have contrast fluid until his CT scan at 1pm. Its a good thing they flavor the contrast fluid. He also has a extensive hearing test in the neurology department.
Please pray for good news!
P.S. Thank you Gerry and Jean (from our church) for cleaning our house today while we spent the day at the hospital. Very appreciated.
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Monday, December 8th
Since it is now 3 weeks post-treatment Ryan is doing very well. His blood work (platelets, white blood count, ANC, etc) is up at a good level and looking better each day. He never spiked a fever or required blood or platelet transfusions; a tribute to the power of prayer!
Ryan will be going to see Santa for some Christmas photos this week; he probably won’t like wearing the hats that mom and dad picked out for him. Ryan is becoming more and more active; loves to move around and play with his toys. Flipping the pages of books seems to be of a big interest to him but not always slow enough for mom or dad to read to him. He recently learned that jumping up and down is what you do on your crib mattress.
We are so happy that Ryan’s ANC is up at a good level which allows us more freedom to do things with him (basically leave the house). As long as Ryan continues to feel well we have plans to attend a few Christmas events over the weekend.
During the next 1 ½ weeks Ryan will be going through a series of tests (CT Scan, Bone Marrow Biopsy, MIBG Scan, Blood work, Echocardiogram, etc). The testing will be completed by Wednesday, December 18. We hope to learn the results of Ryan’s tests before Christmas.
Pat and I truly believe in the power of prayer and request your prayers for Ryan. Please pray very hard for Ryan during this time; that Ryan obtains a clean bill of health from the medical community (aka NED status / No Evidence of Disease). Pray that Ryan suffers no side effects or complications from his treatments; that his liver regenerates and returns to normal size, that Ryan’s body is free of Neuroblastoma once and for all. Pray for continued strength for mom and dad.
Having a NED status for Ryan would be the best Christmas gift we could ever ask for. A gift coming from the Lord above; who is the great physician.
Thursday, November 27, 2003 5:15 PM CST Just a quiet Thanksgiving Day with Daddy, Mommy and Ryan. Ryan’s WBC (white blood count) and neutrophils bottomed out on Wednesday making Ryan Neutropenic; so we thought it would be best to keep our Thanksgiving Day low key.
We are a little concerned that Ryan’s voice is a bit raspy but he has no fever, is eating well, no congestion, etc. We hope it is from all the screaming and tons of laughter he has displayed the last few days while mom and dad played with him.
We are thankful to the Lord to be home with Ryan on Thanksgiving Day and look forward to many more holidays to share with our son.
What’s next? Ryan will be going in to the clinic on Friday for a checkup with his oncologist. In a few weeks he will be going through a series of tests (CT Scans, MIBG Scans, etc). We pray (and ask for your prayers) that the medical community will declare NED (No Evidence of Disease) that Ryan endures no side effects or complications from the treatment.
Friday, November 21, 2003 7:38 AM CST
We arrived home around 11:30 pm last night. Thank you for the continued prayers. Ryan's nausea has calmed down and he is now able to keep all liquids and some stage 1 baby food down.
What's next? besides the normal lab work and clinic visits Ryan will be going through a series of tests in the next few weeks (CT Scan, MIBG Scan, etc).
Please keep the prayers coming for our little guy.
P.S. Last Saturday, before being hospitalized, Ryan took his first few steps towards daddy!
Saturday, November 15, 2003 7:53 PM CST Quick Update as of Wed, Nov 19
Ryan finished a 4 hour chemo on Tuesday and has been feeling absolutely horrible. Ryan is constantly throwing up. He is unable to keep anything in his system; not even clear liquids. Ryan is currently on 3 different anti-nausea drugs and they are adding a 4th drug today.
Poor baby is soooo hungry. The past few days have been rough for the Connolly folks. Ryan will have more chemo today and Thursday.
Please keep Ryan in your prayers for a speedy recovery.
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“Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up.” James 5:14-15 (NIV)
Ryan will be admitted to Children’s Hospital for another round (#4) of treatment on Monday, November 17. The Children’s Oncology Group study (COG # A3961) calls for a total of 4 rounds of chemotherapy this time; in 2002 Ryan completed 2 chemotherapy treatments.
We anticipate being at the hospital most of next week. Approximately 2 weeks after this treatment, Ryan will be going through a series of tests (CT Scan, Blood, Urine, MIBG Scan, Hearing tests, etc).
Please pray very hard for Ryan during this time for a clean bill of health from the medical community. That Ryan obtains a NED status (No Evidence of Disease). Pray that Ryan suffers no side effects or complications (fever, etc) from his treatment.
Please know that your prayers mean so much to us and that your prayers are working!. There is no doubt that Ryan is a true testimony to the power of prayer.. all one has to do is look at Ryan and they can see the Lord shining through him. Ryan has handled the treatment so well he has actually gained weight, is full of energy, has had No temperatures/infections. Praise the Lord.
How time truly flies. Next week will mark the 1 year anniversary of when Ryan was first rushed to Children’s Hospital at 5 weeks of age truly fighting for his life. We ask the Dear Lord to mark this 1 year anniversary by showing the medical community what we already believe to be true through our faith; that with the blood of Jesus Ryan is healed!
Ryan is actually taking his first steps and will be walking on his own very soon. Ryan does like to try out his new teeth on mom and dad... OUCH!!!
Thank you Father Harvey for taking the time to visit our home today to anoint and pray over Ryan with us. Mom will be taking Ryan to see Pastor Mulder on Monday morning. Pastor Mulder will pray over and annoint Ryan before he is admitted to Children's Hospital.
Monday, November 10, 2003 3:31 PM CST O Lord my God, I called to you for help and you healed me. Psalm 30:2
This past week has been pretty uneventful; something mommy and daddy don’t mind these days. We did go to Rich and Helen’s house (Linda’s brother and sister-in-law) for Linda’s birthday dinner. Richard prepared a wonderful gourmet meal.
Ryan is tolerating his treatment very well for which we give thanks to the Lord. This Friday, November 15, we will be taking Ryan to Children’s Hospital for a weekly visit with his oncologist. Dr Sarnaik will determine on Friday if Ryan’s counts are sufficient enough to have another treatment. If Ryan's counts are at a good level he will be admitted early next week for his 4th round of chemo.
Approximately 2 weeks after the 4th round of chemo Ryan will again go through a series of diagnostic tests (CT scan, blood work, MIBG, etc). Although we know by our faith that the Lord, who is the great physician, has healed Ryan, we pray (and also ask for your prayers) that the medical community will also realize his healing from the results of these tests.
P.S. Please check out Ryan’s newly created smile quilt at www.smilequilt.com/ryanc.html
Sunday, November 2, 2003 7:15 AM CST And the prayer offered in faith will make the sick person well; the Lord will raise him up. James 5:15
Ryan was released from Children’s Hospital on Thursday evening after his 3rd round of treatment. He is expected to have his 4th round of chemo in approximately 3 weeks. This was a rough week. Pat and I came home pretty exhausted. When we arrived home our wonderful neighbor Chris sent over a delicious home cooked meal; very much appreciated after a long week at a hospital.
Since Ryan is now older and more active we were having a difficult time keeping Ryan occupied while in the hospital; especially with an IV hanging from Ryan’s port (located in his chest). Pat and I even walked Ryan in his stroller around the 6th floor; while one of us pushed Ryan’s IV cart along side the stroller. Unfortunately his port was reaccessed 2 additional times due to problems; please pray for no infections. Ryan’s Baby Einstein videos, while entertaining for Ryan the majority of the time, are not working as well as in the past. Being older he wants to crawl, stand, try to walk, etc.
Thank you for all of your prayers. Ryan is tolerating the chemo very well. Thank you Lord! An oncologist at Children's Hospital indicated to us, during one the morning rounds, that Ryan was "tolerating treatment the best on the whole oncology floor". The hospital also began using a new anti-nausea medicine which seems to work well. Ryan only threw up a bit at the hospital one time after eating; which is not the norm right after a treatment.
Since Ryan has come home he has been full of boundless energy; probably exerting all the energy he wasn’t allowed to use at the hospital. Last night Ryan even crawled (with daddy right behind him) all the way up the stairs.
We had such warm weather for Halloween that tons of kids came out; went through 6 very large bags of candy. Although Ryan’s ANC was 1200 (normal) on Friday we did keep Ryan indoors for Halloween but showed him off in his cute frog costume to a few friends and neighbors.
We do anticipate Ryan's counts to bottom out soon (normally around day 8). We will be giving Ryan shots to raise his White Blood Count (WBC fights infections). Pat and I isolate Ryan from others (and ourselves as much as possible) to avoid catching colds, flu, etc. We pretty much become hermits and have no visitors to our home during this time.
Please pray for Ryan’s complete healing. Pray that Ryan has no long or short term side effects from treatment.
Saturday, October 25, 2003 5:33 PM CDT Bless the Lord, O my soul; and all that is within me, bless His holy name! Bless the Lord, O my soul and forget not all His benefits. Who forgives all your iniquities, Who heals all your diseases. Psalm 103:1-3
Ryan just finished a series of tests this week (CT Scan, Bone Marrow Biopsy, Bone Marrow Aspiration, Echocardiogram, Blood work, Urine, etc). Although we won’t have the results of his bone marrow aspiration or biopsy until sometime next week, Ryan passed his Echocardiogram with flying colors. Results of Ryan’s CT scan showed a great improvement but some spots still exist. Dr Sarnaik, Ryan’s oncologist, informed Pat and I that his liver has shrunk from 11 centimeters to approximately 3.5 centimeters. Ryan’s VMA and HVA urine markers (high levels indicate Neuroblastoma) have headed directly south; which is wonderful news. His LDH level (indicates cancer is present) is now normal. Thank you Lord! Proof all of your prayers for Ryan are working.
Ryan’s platelets were dangerously low at the beginning of the week (21,000) that the doctor wrote a script for a special helmet. He was very close to requiring a platelet transfusion. It can be scary time trying to keep an infant who wants to crawl and stand from hitting his head. Especially at Ryan’s age, when he is trying to take steps without holding on to something. Ryan even likes to turn on a few of his musical toys using his head. Fortunately his platelets as of Friday were at 85k so he is not in danger of needing a platelet transfusion.
Sloan Kettering contacted Ryan’s oncologist regarding their second opinion. So far they are in agreement with how Children’s Hospital has treated Ryan. We hope to find out more information from Dr Sarnaik when we meet with her this coming Monday.
Since Ryan’s CT scan did not come out clear, Ryan will be admitted on Monday for another round of chemo. In a brief discussion with Dr Sarnaik last Friday we all agreed that it is necessary to do at least one more round of chemo; possibly two.
Pat and I appreciate prayers said on Ryan’s behalf. Please pray that his treatment continues to go well, that Ryan suffers no side effects from his treatment. Pray that this treatment cleans up any residual tumor so Ryan can be declared NED by the medical community (No Evidence of Disease).
We know by our faith that it is a matter of time for Ryan's complete healing to be a testimony for all to see.
Saturday, October 18, 2003 11:35 PM CDT
Ryan had a wonderful 1st birthday. He received so many great cards and gifts; our house now resembles a toy store and Ryan’s wardrobe is getting to be fairly extensive. Ryan even had his first cupcake; which mommy made. Although he made a funny face when he tasted chocolate ice cream for the first time, he certainly opened up his mouth for more.
Ryan is such an active little guy who loves to crawl and stand and move around while holding onto the couch or his toys. He sits down so carefully you can tell he thinks things out before acting. Pat and I know that it will be any day now before he will start walking.
Yesterday we took Ryan to Children’s Hospital clinic for a checkup with his oncologist. Dr Sarnaik felt that Ryan’s liver has shrunk even more which was great news. Praise to you Lord! Also, Ryan’s LDH level was around 338; keeps heading south which is also great news.
Father Harvey from our Catholic Parish stopped by today to see how Ryan was doing. Thank you Father Harvey for your visit and for saying a prayer over our littlie guy.
What’s next? Ryan will be going through some tests next week to measure how well Ryan is responding to his current chemo treatment.
Ryan will be going in (as an outpatient at Children's Hospital) for a CT scan and an Echocardiogram on Tuesday, October 21; which also happens to be our 8 year wedding anniversary. On Friday, October 24, Ryan will be a sedated for a bone marrow aspiration and biopsy. Not to mention Ryan will have blood drawn on 3 different days next week. Since Ryan has been through so much poking and prodding he is beginning to make associations with pain and people in white coats.
Dr Sarnaik is also tentatively scheduling Ryan to be admitted to Children’s Hospital for his 3rd round of chemotherapy on Monday, October 27. We are hoping to have a second opinion back from Sloan Kettering sometime this week.
We ask that you please pray for our son Ryan. Please pray that Ryan’s test results will show his body is free of cancer, that Ryan has no side effects or discomfort from his tests and treatments. We ask all of this in Jesus name.
Linda, Pat and Ryan
Saturday, October 11, 2003 8:49 AM CDT And Thus He fulfilled what was spoken by the prophet Isaiah. He Himself took our weaknesses and infirmities and bore away our diseases. Matthew 8:17
Ryan finished with his 2nd round of chemo treatment this week and is doing really well. Thank you Lord! His treatment protocol (COG # A3961) calls for 4 rounds of chemo; so Ryan is now half way through his treatment. Last year he had completed 2 rounds of chemotherapy treatment (POG # 9641). Initially Ryan had a difficult time holding down his food until his dosage for his anti nausea medicine was increased. Ryan looks great; his appetite is wonderful and his energy level is amazing; proof your prayers for Ryan are working!
Ryan’s platelet, white blood counts, neutrophils (as of yesterday/Friday) are at a high level that we may even go to one of his Uncle’s football games today. Ryan’s Uncle Jamey is the tight ends coach at Olivet College.
Can you believe it! Ryan will be 1 year old on Tuesday, Oct 14. We will probably keep his celebration pretty low key this year since he is just getting off of treatment; his blood counts will be bottoming out sometime soon.
What’s next? Ryan goes for Lab work on Monday and Wednesday of next week followed by an appointment with his oncologist at the clinic on Friday. His next treatment #3 will probably take place in approximately 3 weeks.
We are awaiting word from Sloan Kettering with respect to their second opinion about Ryan’s treatment plan. We did hear back that Dr Maris from Children’s Hospital of PA (aka CHOP). Dr Maris agreed with the treatment plan that Ryan is currently on.
P.S. Many thanks from Pat, Ryan and I for those of you who contributed to the Lunch for Life Fundraiser. Currently there is not enough money dedicated to treatment research. Your contribution will give those diagnosed (and those who are yet to be diagnosed) hope for a brighter future.
In our world this horrible illness is not rare at all and so many children we know (Gabriella, Alex, John, Brice, Christina, Ashley, Brandon, Harrison, Paige, etc) are fighting this battle.
For those of you, who still would like to donate to this fundraiser, please see my last journal entry for related information.
Saturday, October 4, 2003 9:03 AM CDT First Peter 2:24 – Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness; by whose stripes ye were healed.
Your prayers are definitely working!
We received encouraging news when we took Ryan in to see his oncologist yesterday. Ryan’s liver has shrunk 5 centimenters (down from 11 centimeters) after only one treatment. Praise the Lord! Another very encouraging sign was that his LDH blood level has taken a nose dive after treatment and is down to 441 (high normal). A high LDH level indicates cancer.
We will be back at Children’s Hospital on Monday for round 2 of Ryan’s chemo treatment. After the 2nd round of treatment, a CT scan and bone marrow aspiration will be done. We are also awaiting a second opinion from Sloan Kettering.
Pat and I do feel very blessed that Ryan has Dr Sarnaik as his oncologist at Children’s Hospital. Not only is she a great doctor; she is also a wonderful person who always has Ryan's best interest in mind.
Please continue to keep Ryan and us in your prayers.
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RE: CALL TO ACTION FROM PARENTS WITH A PURPOSE
It is October 2, 2003, a day that will live in the hearts and the memories of Pat, Ryan, and I for the rest of our lives. Today is the day that will mark a significant change in the world of Neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the country. We have joined forces with numerous other families afflicted by neuroblastoma.
The goal : 10 million dollars in ten days
The action: I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for Ryan, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because Neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's story.
Whatever your reason, please do it, and do it now.
Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. I am only asking for five dollars that will be used for curative research. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in.
I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days.
Your donations will go to research to cure Neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of Neuroblastoma. It is a tax deductible contribution to you.
You can give directly to the CNCF here http://www.cncf-childcancer.org , it is a secure web site.
OR
You can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
OR
You can call this 800 number and give your gift by phone
1-866-671-2623
We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference. Let's take a stand together. From the bottom of my heart, I thank you once again for helping me. I don't have the words but I can tell you that it makes all of the difference in the world to both me and my family. Just imagine, we are now a part of changing the world, saving thousands of children's lives, and we did it for five dollars.
Thank You,
Linda Connolly
P.S. You can designate your donation to the Children’s Neuroblastoma Cancer Foundation in honor of Ryan Connolly.
Thursday, October 2, 2003 7:41 AM CDT
RE: CALL TO ACTION FROM PARENTS WITH A PURPOSE
It is October 2, 2003, a day that will live in the hearts and the memories of Pat, Ryan, and I for the rest of our lives. Today is the day that will mark a significant change in the world of Neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the country. We have joined forces with numerous other families afflicted by neuroblastoma.
The goal : 10 million dollars in ten days
The action: I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for Ryan, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because Neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's story.
Whatever your reason, please do it, and do it now.
Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. I am only asking for five dollars that will be used for curative research. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in.
I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days.
Your donations will go to research to cure Neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of Neuroblastoma. It is a tax deductible contribution to you.
You can give directly to the CNCF here http://www.cncf-childcancer.org , it is a secure web site.
OR
You can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
OR
You can call this 800 number and give your gift by phone
1-866-671-2623
We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference. Let's take a stand together. From the bottom of my heart, I thank you once again for helping me. I don't have the words but I can tell you that it makes all of the difference in the world to both me and my family. Just imagine, we are now a part of changing the world, saving thousands of children's lives, and we did it for five dollars.
Thank You,
Linda Connolly
P.S. You can designate your donation to the Children’s Neuroblastoma Cancer Foundation in honor of Ryan Connolly.
Monday, September 29, 2003 1:13 PM CDT Ryan is currently home recovering from his chemotherapy treatment and is doing really well! We have not noticed any change in his appetite or energy level. At first he did throw up some when he was fed baby food; especially the baby food that he was not fond of. It is hard to believe when you look at him that he went through a chemotherapy treatment only 2 weeks ago today.
The tumor board decided, last Wednesday, to do a total of 4 rounds of additional chemotherapy. Ryan had 2 rounds late last year. This treatment protocol would include the one chemotherapy treatment Ryan just finished (3 more to go). Ryan’s primary oncologist, Dr Sarnaik, indicated to Pat and I that a few individuals who are on the tumor board at Children’s Hospital wanted to treat Ryan as high risk (meaning even more treatment). Fortunately the majority of oncologists (including Dr Sarnaik) felt that Ryan’s treatment should be categorized under an intermediate risk protocol.. Thank you God!.
The difference in opinion among some of the oncologists at Children’s Hospital, with respect to Ryan’s risk level, is based on expectations they have with the majority of stage 4S infants; they typically respond very well when having a favorable NMYC marker (less aggressive form of cancer). Why Ryan’s cancer suddenly reared its ugly head AGAIN is not what they normally see (not following text book behavior for a 4S). Why Ryan’s prognostic marker (DNA ploidity) changed is a concern as well.
After the 2nd round of Chemo, which may be next week or the following week, (depending on his counts) Dr Sarnaik will do a CT scan (and possibly a bone marrow aspiration), This will provide an indication of how well Ryan is reacting with the chemotherapy. Pat and I were happy to learn at Ryan’s last clinical visit on Friday that his liver has shrunk a total of 3 centimeters.
Ryan’s information (scans, frozen tumor, etc) is currently being sent to Sloan Kettering in NYC for a second opinion. Hopefully Sloan Kettering will agree with the treatment plan that Children’s Hospital is following. Sloan Kettering treats the majority of children in the Unites States having this rare form of cancer.
Although medical science has made great strides in treating pediatric cancers it still has a long way to go. This certainly becomes a tough reality to parents with a children having this horrible illness. It is unfortunate that little funding is put towards pediatric cancer research; drug companies don’t consider it to be a profitable venture for them.
Please continue to pray for our little guy. Pray that Ryan obtains NED Status (No Evidence of Disease) after 2 rounds of treatment. That Ryan continues to do well with his treatment and does not experience any side effects or complications (NO infections, pain, fever, etc). That the medical community will see immediate results is the miracle that Pat and I pray for (liver and bone marrow clear of illness).
Our faith tells Pat and I that Ryan’s complete healing will occur. Ryan will be a testimony for all to see!
Tuesday, September 23, 2003 7:12 PM CDT Praise the Lord! I received a call from Ryan’s oncologist this morning and she was very happy to tell me that one of his key prognostic markers came back in Ryan’s favor. The marker known as N-myc showed NO amplification; this is exactly what we have been praying for. Which means Ryan’s form of Neuroblastoma is less aggressive, his treatment will not be as extensive and his prognosis will be much more favorable.
Another marker known as DNA ploidy did not come back as favorable. Although it is an important marker, it does not carry the same weight as the N-Myc prognostic marker.
Ryan will be required to have his blood work checked 3 times this week. It is important to monitor his counts now since his blood levels (white count, platelets, etc) will begin to bottom out and he may require a transfusion or platelets. At this time we do not have any company over to the house and basically hibernate (as much as possible) to protect Ryan from any bacteria or virus. Supposedly there is a horrible flu bug going around the local schools now.
Whats Next? Ryan’s oncologist will be presenting all of Ryan’s test results to the tumor board on Wednesday (tomorrow). The board will determine the course of treatment (i.e. number of rounds of chemo, etc) to be followed. We are also requesting a second opinion from Sloan Kettering in NYC. Hopefully, Pat and I will learn more by Thursday or Friday of this week about Ryan’s treatment plan. .
Thank you everyone for the emails and guestbook entries. Your prayers and positive thoughts are working!..Please continue to pray for our little guy until this battle is over.
More on Rainbows .. please see my last journal entry before reading further.
My younger sister, Beverly, was praying at the hospital chapel last Monday, the day of Ryan’s surgery and chemotherapy, when she noticed what appeared to be a rainbow reflecting on her hand that was resting on her bible. Her husband, Jamey tried to put his hand in the same position on her bible but was unable to see a rainbow appear. It was clear that a message of Hope was meant only for her.
Within the same week, my brother Richard, who was praying very hard for his nephew Ryan asked the Dear Lord specifically if he could also see a rainbow as a sign. Within a few days of asking, when he least expected it, a rainbow appeared while he was working in his backyard.
Wednesday, September 17, 2003 12:07 AM CDT Just a short update on our little guy.
Today is day 3 of Chemo Treatment and Ryan was tolerating it well until today. On Tuesday he was able to drink and keep down 31 oz of formula. It is amazing how Ryan is smiling/laughing while the IV is feeding him Chemo.
We wondered how we could entertain Ryan this time around since he likes to crawl, stand up, etc. All we can say is Thank God for Baby Einstein videos which we play continuously for him.
I thought I would share something special with all of you.
During the past few years I have yearned to get closer to God and have spent time reading my bible. I was very excited when I first learned the meaning of a rainbow and often shared my knowledge with others early on. For those of you who do not know it is God's covenant with Noah which is symbolic of Hope.
This past Sunday a wonderful neighbor, whom I gotten to know only casually in passing, decided to knock on my door to tell me only one thing. She knocked on my front door which my friend (Lisa) answered and told Lisa. "Tell Linda there is a Rainbow out there". She said nothing more and left.
There is absolutely no doubt for Pat and I that the Lord was telling us to have Hope!
Pat and I have dug deep into our faith. Our faith in the Lord tells us that Ryan will be healed and that we have just hit a bump in the road (as Ryan's surgeon, Dr Stockman told us on Monday morning).
What's the next step for Ryan's treatment..
Pat and I don't actually know yet but should find out from Ryan's oncologist by early next week. I will be sure to provide more details as soon as time permits.
Friday, September 12, 2003 6:38 PM CDT
PRAYER IS SEVERLY NEEDED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We received horrible news today when I arrived at home. The oncologist called to say that the cancer is in his liver and also has spread to Ryan’s bone marrow. She is concerned because of the percentage of Cancer she determined was present based on a bone marrow aspiration. Her concern (and our deepest fear) is that his type of cancer may have changed from a less aggressive form of cancer.
A biopsy study is being conducted again to determine if his cancer is still the same makeup under a stage 4S, favorable histology, non amplified. PLEASE Pray that the study comes back as non amplified. Although this would still mean chemo his outcome would be much more favorable and the number of rounds of chemo would be much much less.
An amplified result from the new study would mean the worst prognosis and radical chemotherapy, etc. We should know the result of this study by next Friday.
Ryan will be admitted to the hospital on Monday, September 15 for surgery to install a port, a bone marrow biopsy and chemotherapy.
Please pray for our only child Ryan! Ryan will be 11 months old on Sunday, Sept 14.
P.S. NEW PHOTOS ADDED OF RYAN
Thursday, September 11, 2003 4:04 AM CDT What a week this has been so far! Due to Ryan’s urine levels (VMA/HVA) being high during his routine checkup in August the oncologist has ordered a full restaging (series of diagnostic tests). One of Ryan’s blood components (LDH) was also very high which may be an indication that the cancer is back.
We did find out on Monday that Ryan’s bone scan came out clean.. Praise the Lord! However, Ryan’s oncologist saw us briefly yesterday afternoon and felt the preliminary results of his CT scan (done this past Monday) showed an increase in the size of his liver. The oncologist actually showed me how to feel for his liver early on; I felt for his liver yesterday evening and it has increased in size. But not to the size it was in November of last year (took up his whole abdomen). Still this was very upsetting for Pat and I to learn.
Today is his MIBG scan and possibly a bone marrow aspiration. The nurses put an IV setup in his arm yesterday which he had to wear home. Poor little guy! They injected his IV with radioactive material for the scan that makes most children throw up due to the taste they experience. Ryan came very close to being sick but made it through.
His skin was also very blotchy at first so we thought he might be having a bad reaction to the iodine. Fortunately his skin cleared up pretty quickly so he was not given Benadryl. Ryan seems especially fond of one of the nurses named Carol; actually we are too!. Carol has seen Ryan for a couple procedures within the past week and she has taken wonderful care of him.
The MIBG scan will basically seek out any cancer cells and highlight them. They are hoping to do a bone marrow aspiration today as well but he will need a much stronger drug for this procedure due to the pain.
All the data from Ryan’s series of tests (bone scan, CT scan, MIBG scan, bone marrow aspiration, etc) will be presented to the tumor board next Wednesday to determine what the next steps should be.
Ryan is getting quite a collection of Teddy Bears from Childrens Hospital. When a child has a big procedure they often give them a stuffed animal.
Pat and I are trying to take one day at a time with this craziness.
Please keep praying for our Ryan.
Sunday, September 7, 2003 1:32 AM CDT Due to Ryan’s urine markers (VMA and HVA) being elevated, during his August 3-month followup, Ryan will need to go through a series of tests.
This is a scary time for us so we appreciate prayers. Please ask the Lord for a miracle that no cancer is present in Ryan’s little body. Also, that Ryan will have no side affects from all of these tests. Lastly, please ask the Lord to give Pat and I the strength and courage to get through this difficult time.
Last Friday, Sept 5, Ryan had a bone scan, blood work and another urine analysis. These tests can be rough on a little one since he was unable to eat/drink for several hours before the test. For the test his bladder was emptied with a catheter and an IV was started to sedate him during the scan. Initially, the IV was used to inject radioactive material for the scan. We had to keep a very hungry Ryan happy by walking continuously around the 2nd floor of the hospital with him and IV cart in tow for over an hour so the radioactive material could be absorbed into his body. Needless to say Friday was a long day for all of us.
What’s next.. On Monday, Sept 8, Ryan will have a CT scan. Wednesday, Sept 9 and Thursday, Sept 10 he is scheduled for a MIBG scan. After his MIBG scan on Thursday Ryan’s primary oncologist will do a bone marrow aspiration (OUCH!).
I contacted Sloan Kettering in New York City this week for a second opinion. Sloan Kettering sees the most children with this type of cancer (Neuroblastoma) each year. In my initial correspondence with Dr Kushner of Sloan Kettering; he asked how Ryan was acting/feeling? My response was “Ryan is acting/feeling great, growing like a weed, no temperature, etc”.
Since Sloan Kettering conducts a 6 hour urine catch (avoiding all Vitamin C, bananas, and Vanilla) and Children’s Hospital of Detroit does not follow the same guidelines; Dr Kushner thinks (and Pat and I really hope) the problem may be with the urine test. However, since we can't take any chances with such an aggressive form of cancer his oncologist felt it was necessary to have him restaged/tested (and we agreed).
I also contacted Dr Maris of Childrens Hospital of Philadelphia for his opinion. CHOP is another institution where a good number of children with Neuroblastoma go for treatment. Dr Maris was also wonderful in responding back to my concerns quickly and agreed with the overall management of Ryan’s care.
On a happier note; on August 31, Ryan was able to pull himself up to a standing position. He even took his first few steps. Every day is a fun adventure; watching Ryan’s development. He is such a joy to us!
Wednesday, September 3, 2003 9:39 PM CDT Well folks; it looks like our trial isn't over just yet. Ryan's recent urinalysis results are indicating alarmingly elevated VMA & HVA levels. This could be an indication that Neuroblastoma is still present. Ryan will be going in for an MIBG @ Children's Hospital on September 9th ( for injection ) & 10th ( for sedation & scan ). Please pray ( in Jesus' name ) that there was some fault or contamination of his urinalysis. That would be the best case scenario. His bloodwork seemed fine ( with the exception of a high normal calcium level ) & he's not neutropenic(?); which are both promising signs. This is very trying for us, but our faith will not allow us to believe in anything other than Ryan's ultimate recovery. Please join us in prayer.
Love,
Linda, Pat, & Ryan
Wednesday, September 3, 2003 9:39 PM CDT Well folks; it looks like our trial isn't over just yet. Ryan's recent urinalysis results are indicating alarmingly elevated VMA & HVA levels. This could be an indication that Neuroblastoma is still present. Ryan will be going in for an MIBG @ Children's Hospital on September 9th ( for injection ) & 10th ( for sedation & scan ). Please pray ( in Jesus' name ) that there was some fault or contamination of his urinalysis. That would be the best case scenario. His bloodwork seemed fine ( with the exception of a high normal calcium level ) & he's not neutropenic(?); which are both promising signs. This is very trying for us, but our faith will not allow us to believe in anything other than Ryan's ultimate recovery. Please join us in prayer.
Love,
Linda, Pat, & Ryan
Monday, August 18, 2003 1:19 PM CDT Wow! What a busy month August has been and its not even over. Ryan’s checkup at Childrens Hospital went well. The ultrasound results looked the same which is good. Although the ultrasound did show the same spots on his liver, kidneys and gallbladder when compared with his last ultrasound results in May; as long as the spots/lesions are not getting larger it is good news.
Ryan’s oncologist is still pretty certain that the spots are due to calcium deposits. The calcium deposits are not uncommon; probably formed from internal bleeding when Ryan was first admitted to Childrens.
Pat and I were hoping that the ultrasound would show NED (No Evidence of Disease) but our faith tells us this will come in time. In our hearts we know that Ryan is healthy. I will be taking Ryan back to Childrens this Thursday for some more lab work. Not enough urine was caught to check 2 important markers for Neuroblastoma (VMH/VMK). Ryan will also need to have more blood drawn. Ryan’s next big set of tests (CT scan, ultrasound, etc) will be in early November. If the results are good the duration for his checkups/tests will become longer.
Ryan had his first visit to the Detroit Zoo this month due to a MetLife employee event. Ryan probably recognized many of the animals from his Baby Einstein videos. Finally folks from MetLife were able to see Ryan in person. We all had a fun time.
Mom took Ryan to the local photography studio last week for some new photos. Pat and I selected from the proofs last Thursday. The photos were so adorable.. I can’t wait to get them! I will be posting them to the website around the middle of September.
We just returned from the west side of Michigan after attending my niece Jenny’s wedding. The wedding and reception was wonderful. Congratulations Jenny and Tom!
Mommy did have to find a new dress for the reception because Ryan had somehow ripped her sleeve after the wedding ceremony. Luckily Daddy came to the rescue. He ran into the mall and came out 20 minutes later with 2 dresses for mommy to choose from. The dresses were even on sale (1/2 off). Daddy told mommy he was saying prayers for help as he was going into the mall…who says God doesn’t hear all prayers.
We were very fortunate to escape the big blackout of 2003. Our hearts went out to all the folks who had to battle the heat without any air conditioning, etc. This coming weekend is the Brown Family reunion. As long as Ryan is up to it we will be going.
Please continue to keep our little guy in your thoughts and prayers.
Monday, August 4, 2003 8:10 AM CDT Hello Everyone!
We just returned from a weekend trip to my brother and sister-in-law’s cottage up north in Michigan for some relaxation. Unfortunately, Rich and Pat were unable to golf, due to the weather being uncooperative, but we still had a great time. Had some great meals prepared by Chef Richard. Thank you for having us up to your cottage Rich and Helen.
We noticed that Uncle Rich, Ryan and his cousin Becka all share the same birthmark on their little finger. Pretty cool.. to us parents anyway.
Ryan is doing great! Crawling around and bearing his weight well when standing (assisted); probably will be walking real soon. He loves to pull hair and has a pretty strong grip.
At Ryan’s last 9 month checkup, with his general pediatrician, he weighed in at a whopping 25 pounds (head size 20 inches and length 31 inches). Ryan may be just like his cousin Kevin; who is also very tall. He has 6 teeth at this time so we are starting to give him cheerios, etc.
We will be going to Childrens Hospital this Friday, August 8 for Ryan’s 3-month checkup. Ryan will be having an ultrasound, blood work, and a visit with his oncologist. If all goes well, we will be able to begin his immunizations; maybe even achieve remission status
Please keep Ryan in your thoughts and prayers this week for good results on his tests.
I promise to post new photos real soon!
Sunday, July 20, 2003 5:57 PM CDT Wow! Can you believe it? Ryan is already 9 months old as of July 14. Pat and I treasure every day with him. He is such a character. When checking out of a Kmart store last week Ryan couldn’t stop belly laughing at the beeping from the scanner when we were checking out. It was hysterical!
Ryan is doing the army crawl and sits up without assistance. His teeth are coming in; 5 so far. He liked to put his feet in his mouth until recently when he bit his toes.
Pat and I decided to go to a drive-in movie to see League of Extraordinary Gentlemen last weekend. Ryan did great at the drive-in but trying to stay for the second feature (XMEN) was definitely pushing it.
Unfortunately, we will be unable to make the trip to New York this month for Pat’s birthday but we hope to do so sometime in September. We miss our family and friends out east. August will be a very busy month for us. In August we will be going to my brother Rich’s cottage up north, my niece Jenny’s wedding in Muskegon, a family reunion, etc.
This week I will be taking Ryan to his general pediatrician for a 9 month checkup. I think Dr. Thompson will be so surprised to see how much Ryan has grown since his last 6 month visit. Unfortunately, no vaccinations can be given to Ryan until the oncology group gives us permission to do so.
Ryan will be going through his next set of big tests on August 8th. He will have an ultrasound (No CT Scan until November), blood and urine tests and visit to the clinic to see his oncologist. Last month we took him to Children’s for a routine hearing test and Ryan passed with flying colors. A common side effect of chemotherapy is loss of hearing so we were thrilled that he passed.
Please keep Ryan in your thoughts and prayers for good results on August 8th.
Pictures will be updated in the next few weeks.
Tuesday, July 1, 2003 7:08 AM CDT Pat and I returned from the Neuroblastoma conference, held in Chicago, this past weekend. Various doctors, who specialize in treating children with Neuroblastoma, spoke at this conference.
Many thanks to Patricia Tallungan, president of the Children’s Neuroblastoma Cancer Foundation, who organized this conference. Patricia had lost her 10 year old son (Nick) to Neuroblastoma back in 1999. She formed this organization in 2000; one year after her own childs death.
Pat and I came away from this conference feeling relieved that Ryan’s outlook is extremely good. Dr Cheung, from Sloan Kettering was confident that Ryan’s cancer will regress. This is due to Ryan’s cancer being a stage 4S, his tumor biopsy having an unamplified makeup (unamplified is a less aggressive cancer), having a favorable histology (low risk cancer) and most importantly his age; being < 1 year when diagnosed.
The doctors explained to parents at the conference that it is an enigma to them why such a difference exists in a recovery of an infant with a low risk stage 4S and children with a stage 4 cancer. In some cases a stage 4S patient can have the cancer naturally regress without any medical intervention. Unfortunately Ryan’s cancer was life threatening at 5 weeks so medical intervention (surgery, chemo, etc) was necessary.
Pat and I will feel more confident once we hear the words “Ryan is in Remission” from the doctors at Childrens Hospital. We continue to pray, not only for our son, but for so many other children (Christi, Alex, Tyler, Madison, Beth, Simon, Harrison, Anna, etc) who are in a tough battle in fighting Neuroblastoma and other childhood cancers.
Now for some fun topics. Ryan is doing wonderfully and growing like a weed! He is sitting up without any assistance and is starting to figure out how to crawl. It is hard to believe he will be 9 months on July 14.
Ryan spent last weekend with his Aunt Cheryl, Uncle Doug and cousins (Jason and Brent) while mom and dad attended the conference. They all remarked on how Ryan is such a happy baby. Pat and I always say that the Lord is smiling through Ryan.
Ryan’s next big trip may be to New York City this month to visit family and friends. Our family and friends from the east coast have not seen our little guy at all. We thought we should go soon since Ryan won’t be a baby for too much longer.
Monday, May 19, 2003 2:29 PM CDT I know many of you were waiting to hear about Ryan’s results. Sorry it has taken me awhile to update his website.
We received the results of Ryan’s tests early last week. Ryan’s oncologist, Dr Sarnaik, was happy with how well Ryan’s liver was recovering. The sizes of the remaining lesions and his liver are much smaller. She told Mom although we can’t declare full remission at this point… this is “Good News”!
The oncologist also pointed out they noticed several new specs/spots on Ryan’s kidney, gallbladder and liver. The doctor was pretty certain the spots were due to calcium deposits. Apparently, calcium deposits will form, and show up in the CT Scans/Ultrasounds, from previous/old bleeding. Dr Sarnaik pointed out that Ryan had been bleeding quite a bit when he was first admitted to Childrens Hospital back in November of last year. Mom will be taking Ryan back to Childrens Hospital clinic, later this week, to check out his blood/calcium levels.
The only way we would really know for certain about the new specs/spots is to do a biopsy or a MIGB scan. However, his oncologist felt that they would only want to do this if Ryan’s lesions were increasing in size. She feels Ryan just needs more time to recover and would not want to put him through anything more.
Ryan’s urine markers, VMA (vanillylmandelic acid), HVA (homovanillic acid), were normal and slightly above normal which was good news. The markers are looked at for the diagnostics and monitoring of Neuroblastoma. However, Ryan’s Neutophils were low (type of white blood cell) which would make it more difficult for him to fight infections.
We recently purchased a digital movie camera so we won’t miss Ryan’s first steps, etc. We had purchased a digital camera last fall but felt we would regret not having any movies of Ryan as a baby. He is growing so fast.. soon he will be crawling, etc.
Ryan has a new babysitter. Jan, a young retiree, started babysitting Ryan part time and will continue to do so when mom goes back to work next month. Jan is working out wonderfully.
Mom and Dad will be going to a Neuroblastoma conference in Chicago sometime next month. The conference is being held for parents who want to learn more about their children’s illness. Doctors from various hospitals across the United States will be speaking at this conference. Both Pat and I feel that we owe it to Ryan to learn as much as we can about his illness. Our sister-in-law, Cheryl, offered to watch Ryan for us so we both could attend. Thank you Cheryl!
We will be taking a much needed vacation soon to South Carolina. A wonderful couple from Waterford is allowing us to vacation at their beautiful oceanside condo for a week. We can’t wait!
Thank you for your concern and prayers. Please continue to keep Ryan in your thoughts and prayers until this battle is beaten for good!
God Bless!
Linda, Pat and Ryan
P.S. I will be updating photos in the near future!
Friday, May 2, 2003 9:41 AM CDT Ryan went for his 6 month checkup this week. He is 20 lbs and 29 inches long… Looks like we may have a future football player on our hands. Maybe Uncle Jamey will be his football coach. If everything goes well on May 9th the doctor is hoping to start Ryan’s vaccinations next month.
Ryan is getting out of the house with mom more often these days with the warmer weather. Everyone he meets comments on how happy he is since Ryan is always full of smiles (must be the Lord smiling through Ryan).
This has been a tough week for us since we made a decision to find a new home for our Airedale whom we have had for 7 years. Muffin has been depressed for some time (ever since Ryan became ill). Airedales need to be with people constantly and we could not dedicate the time to her that she needs. Muffin was placed, via the local Airedale Rescue League, with a wonderful couple who lives in Birmingham whose Airedale recently passed away.
Next Friday, May 9, will be a full day for us at Children’s Hospital. Ryan will be having a CT Scan (to check his head, liver, etc), ultrasound, blood work and clinic visit. In the past dad would wear a heavy lead vest to hold Ryan still during the CT Scan to avoid having sedation. Unfortunately this time the CT scan is more extensive so Ryan will be sedated.
Since the tests on May 9th will be key in determining if Ryan will be declared in full remission please be sure to keep Ryan in your thoughts and prayers.
Friday, April 18, 2003 8:36 AM CDT Ryan now has his 2 bottom teeth. It is amazing how much he has grown in the past month (especially his length). We had wonderful weather on Tuesday so mom had a chance to break in the jogging stroller at Kensington Metro Park. Mom was in her glory! She and Ryan did the 8 mile loop around the lake that day.
Ryan is constantly flipping to his stomach from his back. The funny thing is he hates to be on his stomach. He can flip from his stomach to his back but not as well.
We did hear back this week from the Childrens Hospital clinic about Ryan’s urine markers (which detects Neuroblastoma). They jumped up a bit but his oncologist was not concerned. Normal is 27 and Ryan’s were around 37. The month prior his levels were normal. I guess the numbers will be bouncing around for a bit but the levels are certainly better when compared to November of last year (in November they were closer to 500).
God bless you and your family. Be sure to take the time to thank the Lord during this Easter Holiday.
Wednesday, April 9, 2003 9:57 AM CDT Ryan’s checkup at the oncologist last Friday went real well. However, we still need the results of his urinalysis (which shows 2 important cancer markers). The results should be back later this week. Dr Sarniac, Ryan’s oncologist, thought his liver felt smaller (which is good news!). His blood work results (White count, platelets, hemoglobin, etc) were all normal. Ryan’s doctor was amazed at how much he had grown in one month.
Pat and I can’t say enough about how wonderful the doctors and other staff at Children’s Hospital have been. Their motto is “We treat your Children like our own” and this certainly is a true statement. We often run into Ryan’s doctors at Childrens from the surgery or oncology group who go out of their way to speak with us to see how our little Ryan is doing.
Ryan is started to get a tooth in his bottom gum which daddy noticed last Sunday. He was drooling a lot so it confirmed our thoughts about his teething. We also received Ryan’s Easter photos back on Monday. The photos turned out very cute. The rabbit in the photo even looks real. Life with Ryan is getting to be more normal with each passing month and Pat and I thank the Lord each and every day. Thank you for all of your prayers!
Ryan will be going for a CAT scan on Friday, May 9. This is a big test so we need every one to pray for our little solider. Please pray that the spots on his liver will be gone so the doctors can declare Ryan in full remission.
P.S. Ryan will be getting a new uncle this Thursday. Aunt Beverly is getting married! Congratulations to Jamey and Beverly. We love you both very much!
Monday, March 31, 2003 8:24 AM CST Pat and I discussed over the weekend all of the new things that occurred with Ryan during the month of March. Ryan had his first taste of cereal and vegetables, rolled over, first babysitter (Aunt Helen), said Mama and Dada, first real bath, first walk around the neighborhood in his stroller, and Easter photo.
Mom took Ryan to see Dr. Thompson, his general pediatrician, last Wednesday. Dr Thompson became reacquainted with Ryan since his last visit was at 5 weeks old. Ryan is now 19.5 lbs and 28 ¾ inches long. He will be 6 months old on April 14.
He definitely takes after Pat. His measurements are off the charts for his head size and length. I guess daddy and son will always be looking for large baseball caps.
God has blessed us with such a happy baby. It is amazing how much he smiles and laughs. Ryan brings so much joy to us!
Ryan will be going to his oncologist, for a monthly checkup, this Friday, April 4th. Let’s keep praying for good news.
P.S. I will be posting new photos of Ryan soon!
Wednesday, March 19, 2003 7:38 AM CST Mom and Dad got to go out on Monday night for a dinner date (first time since Ryan was born). Ryan's Aunt Helen has offered to come over after work to babysit Ryan each Monday evening. Thank you Aunt Helen! Mom promised not to give Aunt Helen the same hour long lecture on how to care for Ryan next time.
It was nice to finally go out for a dinner as a couple. Since Ryan’s catheter required special medical care we were unable to accept help before this time. Next week we are actually meeting up with friends (Andy and Robbie Cool) for dinner. They also have a newborn baby boy.
Ryan is growing like a weed! His next visit to the oncologist at Childrens Hospital will be early April. It will be interesting to see how much Ryan weighs. I hope to take Ryan to his general pediatrician soon. The doctors at the practice need to become familiar with Ryan again. We pray that we will be able to begin his vaccinations sometime in June.
Ryan’s general pediatrician, Dr Thompson, has called us at home to check up on Ryan and to express her concerns. She felt it was very important to keep Ryan away from other children and to limit his exposure to adults (especially adults who have children). Dr Thompson has seen too many sick kids this year with RSV, pneumonia, etc.
Please keep Ryan in your thoughts and prayers.
Saturday, March 8, 2003 10:13 PM CST Ryan had his first real bath today! No more sponge baths since his catheter came out on Monday.
I was surprised to learn on Monday that Ryan's Neutrophil blood count dropped low enough to make him very prone to infections. I had thought his counts would not drop that low anymore since he is finished with Chemo treatments. I guess it will take awhile for his immune system to recover. I did have Ryan labs done again on Thursday and Ryan counts are back up again.
Mom and Dad were surprised to see Ryan turned sideways in his crib this morning. Ryan is moving his legs so much he is now able to turn himself around.
Aunt Bev and Uncle Jamey came for a visit this weekend. Aunt Bev was able to make Ryan laugh so much it brought much joy to all of us.
Please continue to pray for our little Ryan.
Tuesday, March 4, 2003 7:12 PM CST Ryan who was born on Oct 14, 2002 was diagnosed with Neuroblastoma (stage 4S) at 5 weeks of age. Ryan's cancer had spread to his liver and bone marrow. His liver became so large, due to the number of tumors, that Ryan was unable to breath on his own and was put on a respirator.
At one point early on the doctors informed us that he may not live but we (and several others) continued to pray and his health improved each day. Ryan was hospitalized the Saturday before Thanksgiving and came home on Christmas night.
During his stay at Children’s Hospital Ryan went through a 3 hour surgery to remove his primary tumor, CT scans, bone marrow aspirations, 2 rounds of chemotherapy, platelet and blood transfusions, etc.
As of February 14, 2003 the tumor board at Children’s Hospital determined that Ryan was doing so well that they could stop his treatment. Ryan's bone marrow, blood and urine does not show any traces of cancer. Only his liver (now 1/10 of the size from back in November) shows 2 small spots that the doctors will be following. Praise God!
His broviac catheter came out on Monday, March 3rd. Ryan will
continue to go for regular clinic appointments to check his blood and urine. Another CT Scan will be done in May to check his liver.
We pray his CT scan will be clear so the doctors will declare Ryan in full remission.
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