|
Benjamin Murphy July 4, 1999 - Dec 16, 2005 
The way we want to remember Ben - having fun at the beach in June of 2005
Welcome to Ben Murphy's Web Page. It has been provided to keep people updated about Ben's progress.
Ben was diagnosed with Leukemia - AML M1 type on 01/02/03 and admitted to the Children's hospital connected with Stanford University. Ben participated in a clinical trial that has 90 AML patients in the country. On April 25, 2003 Ben received an unrelated Bone Marrow Transplant. Ben did very well through transplant and recovery with minimal damage to his body. On June 21st, 2004,14 months post transplant and much to the doctor's surprise, Ben relapsed and needed further treatments to be cured. Ben got to a state of remission via the "Capizzi" protocol which is typically used for ALL kids since all other treatments had already been used and proven uneffective. The Capizzi protocol had a 25% chance of getting Ben into remission and it worked! It was also the least toxic and offered fewer side effects. Ben was given a 10% chance of survival with the only option being another Bone Marrow Transplant.
On September 1, 2004 Ben received his new cells from an new unrelated matched donor.
November 22, 2004 Ben's bone Marrow Aspirate showed 0% leukemia and 100% donor cells in his DNA.
Ben continues to beat all the odds of survival and we appreciate all the prayers and positive thoughts from our family, friends, church and community. Prayer can make the difference!
January 20th, Ben relapsed with a 4% showing of leukemia in his Bone Marrow as detected by a test done through St.Jude's hospital. By Feb 2nd the leukemia increased to 23%. On Feb 5th Ben was admitted to LPCH for a chemo protocol designed by Dr. Dahl.
Feb 14th - First Donor Lymphocyte infusion was given
Feb 28th - Bone Marrow Aspirate showed no detectable leukemia
March 7th - Second Donor Lymphocyte infusion was given
March 21st - Bone Marrow Aspirate - 100% donor cells and MRD Negative from St. Judes. (Minimal Residual Disease)
March 28 - Third Donor Lymphocyte Infusion (DLI)
April 11th - Bone Marrow Aspirate shows 100% donor cells - MRD is negative from St. Judes!
April 18th - Fourth and supposed to be final Donor Lymphocyte Infusion.
May 9 - Bone Marrow Aspirate - 99% Donor Cells and MRD positive at .2%
Proposed treatment for relapse - NK infusion at U of Minnesota followed by cord blood transplant.
May 25th - Bone Marrow Aspirate results were .6% indicating that Ben's leukemia is not growing as fast as expected.
June 13th - Bone Marrow Aspirate showed 16% leukemic blasts.
June 16th - first appt for NK clinical trial at Fairview Hospital in Minneapolis.
June 20 - Ben was not eligable for the NK study due to elevated liver numbers and flew back home to try clofarabine to get into remission at LPCH.
July 4th - Ben celebrated his 6th birthday at HOME!
July 11th - Ben's Bone Marrow test showed about 3% and is considered to have a good response to the clorfarabine. But he is not eligable for the double Cord Blood nonmyeloblative transplant at U of MN due to high liver numbers.
July 18th - Ben starts his second round of clorfarabine as out patient.
Aug 8th - Ben's Bone Marrow Asparite showed Ben is still in remission.
Aug 25th - Consult visit at St. Judes with an expected admission date of Sept 5th if all goes well.
Aug 30 - Bone Marrow Aspirate result is 16% from Pathology and 32% MRD.
Sept 5 - Ben is admitted to St. Jude for the Haplo transplant
Sept 15 and 16 - Ben receives peripheral stem cells from his mother.
October 6th, Bone Marrow aspirate showed 0% (MRD negative) and 100% "mom" cells.
November 15th - Ben's Bone Marrow Aspirate was MRD negative and showed zero leukemia!
December 15 - Bone Marrow Aspirate showed complete remission.
December 16 - Ben joined God in Heaven at 7:50 pm when we removed the ventilator when we found out that the aspergillus in his brain was too much to eradicate.
Journal
Tuesday, January 31, 2006 7:44 AM CST We have been back home since January 10th and are overwhelmed by Ben's absence because his presence is everywhere. His art on the wall, his favorite pasta in the cupboard, his bike in the garage, his empty bedroom and the August calendar just as we left it. We work around all the reminders and once in a while stop in our tracks and cry because something triggered the saddness of Ben's passing once again. But the next day comes and the next day after that and so on until, it seems to be a little easier, but not any less painful.
Bob and I decided to just focus on two things in January - First, getting Mike's calendar filled with activities like Pre-school and swimming lessons. Second, focusing on our business once more and giving it some extra time and effort to drum up some income and renew our relationships with our customers. Spending time planning a memorial is not something we intend to do until we feel that we can emotionally deal with it and all the people. It will come, but just not now.
We continue to feel a great deal of gratitude toward St.Jude Hospital and effort that they put forth every day to keep trying new innovative therapies to help high risk cases of cancer. People often tell us that they don't know what to say or do and we feel that a donation to St. Jude in Ben's honor is totally appropriate and we know that it would help other children and families dealing with childhood cancer. For those of you who have already done this, we thank you. http://www.stjude.org/donate will tell you how to donate.
All in all we are very glad to be home and really happy to have Michael with us. We are blessed that we have his energy and loving person around us to help us through our painful moments.
Saturday, December 17, 2005
It is with heavy heart that we announce that Ben Murphy passed into God’s heavenly kingdom yesterday at 7:50 pm at St. Jude Children’s Research Hospital in Memphis, TN. He fought a long hard battle of leukemia and endured three bone marrow transplants and was in complete remission. He succumbed to an aggressive fungal infection in his brain that could not be eradicated. Ben Murphy touched the hearts of so many and he was loved by all. He is now our sweet Heavenly Angel in God’s loving care.
Bob and I will be spending the holidays in Muscatine, IA where our other son, Michael, has been living for the last six months. We look forward to spending time with family as we grieve our loss and celebrate Ben’s life. A memorial will be planned in the bay area sometime in January after we return home to California.
Details of the memorial will be posted on this web site in the future.
May your heart always
find peace and comfort in the knowledge
that you are never alone.
May God's presence ease your spirit
and give you rest when you need it.
He knows how you feel.
He is ever aware of your circumstances
and ready to be your strength,
your grace, and your peace.
He is there to cast sunlight
into all of your darkened shadows,
to send encouragement through the love
of friends and family, and
to replace your weariness with new hope.
God is your stronghold,
and with Him as your guide,
you need never be afraid.
No circumstances can block His love.
No grief is too hard for Him to bear.
No task is too difficult
for Him to complete.
When what you are feeling
is simply too deep for words
and nothing anyone does or says
can provide you with the relief you need,
God understands.
He is your provider-
today, tomorrow, and always.
And He loves you.
Cast all of your cares on Him...
and believe.
~Author Unknown
Read Journal History
Hospital Information: St Jude's Children Hospital
Memphis, TN
|
|
