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Welcome to our Child's Web Page. It has been provided to keep family and friends
updated about our Child. We also want to give others hope but most importantly to acknowledge how powerful prayer can be!
Linda & Patrick Connolly
site established March 4, 2003
Ryan who was born on October 14, 2002 was diagnosed with stage 4S Neuroblastoma, a cancer of the sympathetic nervous system, at 5 weeks of age (November of 2002). He was classified as a Low risk due to Favorable NMyc - Non Amplified, Favorable Histology, Favorable DNA Ploidy.
As of September 2003, due to a progression of his illness, Ryan was restaged. Currently a Stage 4S - Intermediate Risk due to a Unfavorable change in his DNA Ploidy with 1P deletion (still NMyc - Unamplified). A recent study (after Ryan's passing) concluded that having 1P deletion will classify the patient as high risk even if other markers are favorable.
As of July 2004, Ryan has completed a total of 10 rounds of inpatient chemotherapy (POG # 9641 and COG A3961), several bone marrow aspirations and bone marrow biopsies, transfusions (blood and platelets), surgery to resect the primary tumor, removal of his left adrenal gland, liver biopsies, surgeries to install (and to remove) a broviac cath and to install a port-a-cath into his chest (used to draw and administer meds and blood products), numerous blood draws, CT Scans, Ultrasounds, MIBG Scans, MRI Scans, Bone Scans, surgery to install a pheresis catheter, etc.
Because of the treatment Ryan now has gallstones. In November of 2004, during a routine echocardiogram, the technican discovered Ryan has a bicuspid aortic valve (instead of tricuspid). When Ryan has any dental work in the future he will need to be pretreated with antibiotics.
In July of 2004 Ryan completed a stem cell harvest/retrieval as an insurance policy; we pray Ryan will never need the stem cells (AKA Bone Marrow transplant) due to a complete healing by our Lord.
Please take a moment to sign Ryan's guestbook. We plan on saving the journal and guestbook entries for Ryan to read in the future.
In Aug of 2004, 3 new spots were found on Ryan's liver by an MRI scan. Sept of 2004 Ryan underwent a liver biopsy, Bone Marrow biopsy, etc. The pathology showed NED (No Evidence of Disease). Thank you God!
November 12, 2004 - We learned Ryan had relapsed and his chances of survival have dropped substantially. We know only God is the great physician and put our complete trust in him for Ryan’s complete healing. Ryan is currently being treated under COG 3973 for the first 2 cycles. Once Ryan has finished the first 2 cycles at Children's Hospital of MI we headed to NYC.
We arrived in New York City (for treatment at Memorial Sloan Kettering Cancer Center) on Jan 2 and sadly Ryan passed away on July 1, 2005. Ryan endured numerous chemotherapy and radiation treatments and relapsed during these treatments. ************************************************************************** If you are new to Ryan's site please see the journal history entry from Friday, July 30, 2004; which will tell you more about our journey.
God's Garden
God looked around His garden
And found an empty place
He then looked down upon the earth
And saw your tired face
He put His arms around you
And lifted you to rest
God's garden must be beautiful,
He always takes the best
He knew that you were suffering
He knew you were in pain,
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb
So He closed your weary eyelids,
And whispered "Peace Be Thine."
It breaks our hearts to lose you
But you didn't go alone.
For part of us went with you,
The day God called you home.
WE MISS YOU RYAN!!!!!!!!!!!!!!!!!
ABOVE IS THE LOGO PAT CREATED FOR CNCF.
Above is a heart cloud Ryan sent from Heaven taken with Pat's camera phone (see journal history for story about the heart cloud from Oct 30 2005).
Journal
Saturday, May 25, 2013 11:09 AM CDT [i carry your heart with me(i carry it in]
By E. E. Cummings 1894–1962
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
Read Journal History
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