Wednesday, November 26, 2008
Thanksgivings past
Thursday, November 20, 2008
Lauren's Appointment
She had been doing better about the tiredness and the breathing thing did not recur, so I was feeling better. It is usually the case that I get in a panic for a week or two and then calm down, which I had.
Lauren weighed in at 25.5 pounds and is 36.25 inches high. The growth chart calculator says this:
your child is 25.5 pounds, and that is
at the 4th percentile for weight.
your child is 36.25 inches, and that is
at the 22th percentile for height.
The doctor says she is still growing on her curve, just not on the average curve. She thinks I need to make sure she is eating more fat. She suggested I slip her some milkshakes, and in fact, I got her Frosty on the way home.
We talked about her fatigue and agreed it is just her lack of sleep. She looked her over and we discussed checking her hemoglobin but decided her color looked fine and that she has always been fairly pale. I asked the doctor how I could judge whether I needed to be concerned medically about Lauren and she gave me some specifics. She also said she was willing to run blood tests anytime and at some point might want to check her blood anyway due to her small size. I said I didn't ever want to put her through anything medical because of my neuroses but she said that sometimes it could be better for everyone to do that. She suggested I bring Lauren back in in six months to check her growth and that I should just let her know and she will run more test on Lauren if I need her to.
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Tuesday, November 18, 2008
Sunday, November 16, 2008
Birthday Sunset
Friday, November 14, 2008
Choir
It was wonderful treat to rehearse with so many voices, all praising God together, in a relatively small room that was completely filled with sound. It made me stop to remember how lucky I am to belong to such a wonderful choir.
On Wednesday, over 100 of us showed up to sing for our beloved choir member, Terry's, funeral and for her husband Joe. It was a very meaningful service that really focused on the gift of eternal life and the gift of Terry's life.
To close the funeral, Joe chose a very uplifting gospel number, "He Reigns Forever!". Part way through the song he motioned for the congregation to stand. It was a wonderful tribute and I was so blessed to be a part of it.
Friday, November 07, 2008
Prayer Requests
Today I feel compelled to share a few stories and ask for prayers and good thoughts for these families.
First, from our time at the Ronald in NYC, we met a little boy, Carter, who fought NB for a long time just like Nathan. He passed away a few months after Nathan did. His Dad died last week, after a long road of self-destructiveness. His sister has now lost her dad and her brother.
Second, from my time on the Neuroblastoma listserv, Sarah and her daugher Hannah. Sarah has been so supportive of me over the years. Her daughter succombed to cancer this past week after a six year battle. Beautiful Hannah left behind her parents and two little brothers.
Thirdly, another supportive online friend Missy, whose son Ryan has been battling NB for a number of years. Ryan relapsed last year and has been travelling to NYC for treatment like Nathan did. Unfortunately Missy was diagnosed with cancer last year as well. She had been doing well but has been discovered to have relapsed and is in the hospital. She and Ryan and especially her husband and other children are having to undergo far more than a family ever should.
Saturday, November 01, 2008
Long Journey
"Your Long Journey"
God's given us years of happiness here
Now we must part
And as the angels come and call for you
The pains of grief tug at my heart
Oh my darling
My darling
My heart breaks as you take your long journey
Oh the days will be empty
The nights so long without you my love
And when god calls for you I'm left alone
But we will meet in heaven above
Oh my darling
My darling
My heart breaks as you take your long journey
Fond memories I'll keep of happy ways
That on earth we trod
And when I come we will walk hand in hand
As one in heaven in the family of god
Oh my darling
My darling
My heart breaks as you take your long journey

