I will learn this and have good thoughts in my heart.

I believe good thoughts and positive energy can't hurt.

Hello David, I read and listened to your post and just wanted to say that my thoughts and prayers are with your family, particularly with Evlin. I too believe in the healing power of positive thought and prayer, especially thru music. I have been comforted and inspired by an Irish monk who also believes in the healing power of music: http://www.brotherseamus.ie/home.html

Your music prayer is beautiful.

and when everyone is talking about those good thoughts and positive energy with healing power thru music...

that is "eternal positive energy"

A brief update. Evlin had a marrow transplant in the wee hours of Friday night/Saturday morning. Since her brother, Colin, was not a match (35% chance) we are very fortunate that a match was found in the national database (50% chance). The transplant itself (on Evlin's end of it) was somewhat of a non-event. It pretty much amounts to a long IV drip. The marrow stem cells somehow know where they are supposed to go and end up in the recipient’s marrow. The next few weeks will be telling as her body and the new cells decide how they will treat each other. There are still looming risks that include Host vs. Graft Disease, liver damage, kidney damage, etc.

Saturday Evlin was in and out of sleep due to mostly to drugs. I sat with her and rubbed her back when requested, read a chapter out of a novel to her, played some quiet pipe tunes on my technopipes, and indulged in idle chat and joking around. I had to spend Sunday at home catching up on chores and having a 4 hour meeting/rehearsal with 3 other musicians for upcoming St. Pat’s gigs. The music was a good diversion. "Evlin Rose" is toward the end of our first set.

Evlin appreciates all the prayers, thoughts, and well wishes as do I!

Our hopes and prayers continue to go out for Evlin.

I just saw this post. Most of it is over a month old. As one living with an advanced cancer, it touches me. And the air is beautiful. I will learn it.

Music helps to del with pain . . . especially beautiful airs. I know.

Past due for an update, but life has been so busy…

Evlin had her marrow transplant on Feb 24th (as noted in previous post). Essentially it amounted to a very long IV drip of marrow stem cells. She then had to contend with the aftermath which included sores in her mouth & digestive tract (a normal side effect) for about a month. Also loss of hair finally extended to eyebrows & eyelashes. The hospital kept her pretty sedated throughout to have her as comfortable as possible. She finally got to leave the hospital the first week of April and had a transition period in an efficiency apartment at the Ronald McDonald House a couple of blocks away from the hospital. About a week after that she was able to return home to Gloucester. But after only a day and a half she got a fever and had to go back to Children’s Hospital for another couple of weeks until that infection cleared up. She is home now and doing as well as can be expected at this point. She will pretty much have to exist as if under house arrest for the next year while her immune system rebuilds. Crowded environments are forbidden and no in-house guests. Friends can visit for a sit out in the yard or go for walks.

Hard as it has all been I’m counting our blessings. Just the fact alone of finding a compatible donor in the national database is very lucky. I’ve gotten a bit behind on internet related communication in part due to my own surgery on March 21st. Bone spurs & torn tendon in right rotator cuff. Sling 24/7 for 4 weeks. Could only play low whistles where the right hand finger holes naturally fell into reach for hand-in-sling. Went to a session with only Low F# through Low C. I was surprised at how much I actually played with a limited selection of keys (we do have singers who don’t always stick to D & G ).I just finished week 5 (of 8 ) of physical therapy. I have a good deal of range of motion back but still a bit to go along with re-strengthening. So all whistles are playable now as well as concertinas, but I have to hold off on the Scottish smallpipes and bodhrán until my right arm has improved. Fortuantely for the piping I have a redpipe & technopipe to fall back on until then.

Thanks to all for continued prayers and positive thoughts for Evlin. I’m so glad she is starting the year of confinement in the Spring so that there are three seasons of outdoor weather ahead for being able to hang with friends outside. I imagine the winter is going to be rough but the light at the end of the tunnel will be that much closer.

Beannachtaí ó

David de la Barre

Gosh, but she's a beautiful young woman, David!

Best wishes for you all, and for Evlin's steady, continuing recovery. (I won't say speedy, because I think that these things are supposed to take the time they take.)

All the best

Ben

She has an inner beauty as well as an outer beauty. Wonderful picture!

Very best wishes.

What a wonderful portrait of you both -- Evlin is absolutely beautiful.

I truly lovely photo. Clearly both of you are strong people who are dealing well with difficult things. I'm glad to see that, and wish you both the best of futures. Evlin Rose will stay in our repertoire...particularly for church situations.

Thank you for posting the picture. Your daughter is stunningly beautiful and it's very nice to see her looking so healthy. I hope the next year goes stunningly well too.

Keep that photographer on retainer. He/She knows what he/she's doing.

When I was a child I learned that now matter how hard or how much you pray for something sometimes the answer is still "No". Despite a marrow transplant Evlin's leukemia returned on August 14th to be further complicated by a fungal infection. She had the best care possible at Boston Children's Hospital. The combination of the infection and the AML proved to be too much for her body to handle though she put up a brave fight. Evlin Rose de la Barre, born Oct. 14. 1992, passed away peacefully on Tuesday evening after a very brave battle. She was surrounded by family, her mother, father, step-mother, brothers, and godmother, who provided a room filled with love, music, and song.



When her uncle passed years ago there was a song that helped bring me healing tears.
It is called Mark's Song by 'eastmountainsouth'.

May your soul be blessed
May your body rest
On that mountain where you were born
May your spirit soar
Where there's joy evermore
May you find your way in peace

And there's no more harm
In your savior's arms
See you fly away in the sky
Did you hear the call
Of angels one and all
May you find your way peace

May you know you're loved
May you shine above
On that mountain where you were born
May your spirit soar
There's no pain anymore
May you find your way in peace

And there's no more harm
In your savior's arms
See you fly away in the sky
Did you hear the call
Of angels one and all
May you find your way in peace

So sorry for your loss!

"When I looked out the window, all was white,
And what’s beloved in the heart was sure,

With such a certainty ascended He,
The Son of Man who deigned Himself to be:
That when we lifted out of sleep, there was
Life with its dark, and love above the laws."

Ascension, by Denis Devlin

My deepest heartfelt condolences to you and your family for your loss of Evlin Rose and my prayers are with you all.