Update:

Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Wednesday, November 9, 2011

Little Teachings

The weekend of 10/21 we were at Hole in the Wall for a family General Weekend. In the past we have been there for Oncology family weekend. The weekend was absolutely amazing and one of the best times we have had together as a family. As always before Greg & I leave we talk about ‘all’ the work that has to be done around the house and cleaning up. We know we are going for the kids but by the end of the weekend we always realized this is what WE needed. Driving into camp you feel the positive energy and just serene surroundings around the lake. The kids were already unbuckled and ready to jump out of the car. We stayed in Lulu’s Lodge, which is where the counselors stay over the summer. It is a ski lodge feeling with a fire place. Our 2 family pals came to greet us immediately. Nick took one look at Brandi and said: ‘I know you, you were in my cabin over the summer.’ Turns out, Brandi was one of Nick’s counselors during his summer week. The two of them started talking about the summer camp and how much fun they had together. It was the first-timer for our other family pal, Deb, to come to Hole in the Wall. The kids laughed, danced and even sang on stage. Sat. night was talent show night our boys were a star. Nick played piano, Colby played ‘mary had a little lamb’, then did armpit farts and then sang Dynamite…. All by himself. Tom got up with all the kids and danced at the end. Tom even got to drive the pontoon boat in the lake. (not docked). On Sunday, the host (Hillary) offered anyone to come up to the mike and say a few words before we departed. Colby ran up and said he would miss everyone and you could see the first tear in his eyes. Nick yelled ‘camp rocks’. Nick made over 7 woodshop projects and Colby made 7 arts and crafts project. The good news is that the kids (Nick & Colby only) go back for a kids reunion in November together. We are so fortunate to have a place for us to go to, where we all understand each other and have a chance to just be yourself. Greg has said many times: ‘I wish Eileen and my family had this place for us to go to.’

This coming weekend there will be a mass for Eileen to worship her 30th anniversary since she passed away. Eileen, (Greg's sister) passed away from Renal Cell Carcinoma.

Colby and Nick have a re-union weekend planned at HOP for the 18th. They are looking forward to going to camp together for the weekend. I explained to them that they should take their projects with woodshop and arts&crafts and give them as Christmas gifts. We will see their imaginations......

I came across an email I sent to the Doctor at Dana Farber who was conducting Nick's study/protocol. I know I was frustrated at the time I was sending but also appreciative he responded to me. Nick's treatment was through the Tomorrow Fund Clinic at Hasbro Children's Hospital but the doctors work with Dana Farber on the best possible treatment......

-----Original Message-----
From: kgshannon@comcast.net [mailto:kgshannon@comcast.net]
Sent: Monday, March 23, 2009 8:47 PM
To: Silverman, Lewis Barry,M.D.
Subject: ALL T-cell

Hi Dr. Silverman,
My son, Dx 10/15/08 with ALL T-cell is 4 years old. He is on the DFCI #05-011
clinical study. We are half way through the Consolidation phase II. (15 shots
of asparaginase and 5 rounds of chemo doses, every 3 weeks). With the last dose
of chemo, my son experienced extreme pain in the legs and could not walk. The
pain has subsided, but he still can not walk well. He drags his right leg and
is very unsteady. We are concerned about the Vincristine causing this and
possible permanent damage. Have you seen other patients, on his study, going
through this as well? We are concerned about nerve damage as well. Do you have
any advice for us? We appreciate your help. Thanks.
Nicholas Shannon, out of Hasbro,
RI Hospital.

From: "Lewis Barry Silverman,M.D."
To: kgshannon@comcast.net
Sent: Tuesday, March 24, 2009 7:11:10 PM GMT -05:00 US/Canada Eastern
Subject: RE: ALL T-cell

Hi
I am sorry to hear your son has had issues with leg pain and problems walking--I
hope he is otherwise doing well.

Pain and abnormalities walking are not that uncommon and can be due to many
causes.

Leg pain can develop for many reasons during this phase of treatment.
Sometimes, children experience a lot of muscle pain with the dexamethasone they
take; often, this pain is at its worst when they stop the 5-day steroid pulse.
Usually that sort of pain might be prevented if the dexamethasone is given with
a taper for the last few days rather than just stopped at Day 5. Dexamethasone
can also make the muscles weak.

Dexamethasone can also lead to bone problems which cause pain. This type of
pain would be localized to a bone or joint, and usually persists throughout the
cycle. An x-ray or other scans would be needed to diagnose that problem.

Vincristine can cause problems with walking--usually the issues related to that
involve difficulty climbing stairs, awkward walking, tripping and in worst case
scenarios, inability to walk alone. Often these gait problems are not
associated with significant pain. Vincristine can cause pain--but usually this
is described more as burning or pins/needles in the feet--and that is much more
often seen in teenagers than in a 4-year old.

Most of these issues are not permanent, though some of the bone problems caused
by dexamethasone can be. Even the worst vincristine issues tend to be
reversible, though they can take a long time to improve.

It is difficult for me to know what the cause of your son's pain and problems
walking are without seeing him. Your son's oncologist may have a better idea of
what is going on after he examines him and decides whether or not any testing
might be useful. Ultimately we want to try to give as much chemotherapy as we
can to cure the disease, but modify doses, when necessary, to avoid doing too
much harm.

Sincerely,
Lewis Silverman

1 comment:

JackSamMum said...

Oh this took me back to my emails to the doctors about serious issues with walking and movement. I am so glad things got better. Sammy is having PT twice a week but made great strides once the treatment ended.

We are thinking about going to the Hole in the Wall Camp..sounds like it would be a great thing to do.

Love and best wishes,
Katy x