Here are some letters from
Sarah's mother, Dianne, and notes from Aunt Katy
on the challenges and successes during the first year after
receiving a gift of life
Here is a message from Dianne on October 22, 2002 - - the one year anniversary
of Sarah's heart transplant....
Today was Sarah's one year anniversary. Hard
to believe! In some ways it went so fast. It is mind boggling to
me. I think the Big picture is settling in. My child is alive
and is doing well because of the love and generosity of another
family.
Today they celebrate another anniversary, a sadder one.
I wrote, through Gift of Life, to them today. It was a difficult
letter to write because I never thought my words conveyed what I
wanted to say. I told them that as Sarah was blowing out her
birthday candles I said a prayer of peace for them and their
daughter. We were so blessed in difficult times.
Please, if you believe in organ donation, pass the word to others.
This huge community following Sarah can make a dent and change
other people's lives. It works and I get to hold my daughter
every day because of it.
With much respect and love
to the donor family today,
Dianne
Sunday, September 9, 2002
Dear friends and family,
Today Sarah played in her first Soccer game. She played
approximately five minutes each half as forward. She received a
few passes, passed to her teammates and gave 100%.
As I was laying next to Emily tonight, just before I fell asleep
before she did, I said "Thank you" to myself. I then wondered
who I said that to. Was it God, my mom, the trainer or coach, her
incredible' unselfish 'sweet' encouraging teammates, their
supportive parents, her physical therapist, her donor, the
doctors, the community, our friends, my family or Sarah for her
incredible strength and courage.
No matter who it was for I fell asleep with one single tear of joy
brushing my cheek.
THANK YOU all. You bring us much joy and love. What an incredible
day!
.
love,
Dianne
July 16,2002
Dear friends and family,
At the eve of the first anniversary of Sarah's collapse at the pool,
I thought it would be appropriate for Jim and me to write an update.
I have written this many times in my mind and will attempt to put my
thoughts into words.
I was amazed at the intensity of my feelings as this date
approached. I found myself feeling the same intense emotions as I
did when we were in the waiting rooms of the intensive care rooms of
each hospital. Sometimes the feelings were even more intense because
the numbness of the shock was not there. I heard myself saying the
exact same words as I said those nights, "This isn't fair", She
doesn't deserve this", and "What a waste."
I often tear up, when alone, but the tears are for many reasons.
First, is that this is still sad. It is very difficult to see your
child have to overcome such enormous obstacles. I miss Sarah.
Secondly, is the sense of pride I have for my entire family. Just
the fact the Sarah survived is amazing not to mention the
unbelievable strength that Sarah must have to overcome her daily
anxieties and fears. Her trust in life was shaken and to see her
slowly work on each of these astounds me. Going through the
psychological process has been a very learning and growing process
for both of us. I'm sure we will look back and realize how much we
bonded together at this time.
Katie is so strong and fun. I could listen to her for hours and the
only downfall would be a side-ache from laughing. She maintained a
3.6 junior year average while still playing all her sports. She
always believed that Sarah would be OK and always made sure Sarah
shared that same belief. She often took the adult role in the house
when Jim and I just needed to cry. She was our strength when weak
and our Hope when we felt low.
Emily was our light. She forced us with her radiant smile and zest
for life to continue on. With her innocence, she made us begin to
enjoy the simple things in life and see good times in all the chaos.
Jim was my personal strength. We are so fortunate that our love and
respect grew stronger. He loves all of us unconditionally and I
just love watching him love our children. He loves me for me and
never expects me to be anyone or anything else.
Third, The tears come when I think of all the beauty and strength
that surrounded our family during this year. You know the time when
you are just about to go to sleep and your mind drifts a little.
That's when I think of all the beautiful and Christian acts that so
many people have showered on us. I felt so loved through this all,
by friends and strangers, and we would not have been able to
continue without all this support. I finally have organized all the
hospital items into several books and boxes. Going through all the
information and correspondence was both difficult yet healing.
Re-reading all the notes and encouraging letters re-filled me with
so much love. I feel truly blessed.
Thanks for all your love and support.
We still have miles to go, but we will get
there.
We have Love, Hope, Faith and Friends.
Love,
Dianne and Jim
July 4, 2002
Dear friends and family,
It's been a while since we have written the Mighty Sarah Updates but
I'm drawn to write as the fourth of July brings up so many numerous
memories and anniversaries days for Sarah and all of the McPharlins.
This fourth of July weekend the McPharlins and gang will be up in
northern Michigan at the Homestead, but last year Sarah, Katie,
Dianne, MB, Karyn and Paul were with us in Chile. On July 8th Sarah
was back in Michigan and in a soccer camp at Michigan
State University.
On July 17th , 2001 Sarah had her first cardiac arrest at Grosse
Pointe Woods Park and was rushed to St John's hospital soon to be
transferred to Children's hospital where she would remain in critical
care for over six months.
There are many celebrations to report and also the reality of
continuing challenges with progressing but difficult issues.
Physically Sarah is doing well, her heart shows no signs of rejection
with the latest biopsy on 6/7/02. Occasionally she gives her medical
team (and her family) a bit of a scare which calls for some testing
but as I write she is cleared for all activities including the diving
board and the water slide at the park. Sarah returned to the pool
without fear and has been enjoying lots of time there with her family,
especially with Katie who is a lifeguard there.
Sarah is becoming more comfortable with increasing independence even
if it's a big step for her folks! Diane said Sarah has been swimming
14 laps a few times a week. Sarah continues to see Ralph, the PT who
worked with her at Children's, now working
at home and at the "Y" a few times a week. Sarah and Ralph notice
that it's when her heart races that Sarah is anxious, of course she
has every right to be nervous having gone through multiple arrests in
2001. This is where the physical recovery and the psychological
recovery merge and where Sarah is learning new coping skills to be
able to acknowledge, express, and choose newly emerging skills as she
reenters her sporting world.
Sarah and her family are attending a transplant support group called
Second Chance. Jim said that it gives them all great hope when fellow
members will get up and share that now TEN YEARS post transplant
folks are involved in active and full lives.
The McPharlins would like to thank everyone who contributed to the
community funds for Sarah. It is from these funds that Sarah is able
to participate in many of her sports activities like golf lessons.
Sarah is being slowly weaned off her prednisone and is now at 1/2 her
maximum dose. On July 11th she will be weaned off Kepra, a seizure
medication, and continues to methodically decrease her anti-rejection
medications, all of this being monitored by the
biopsies. The neurologist reports a normal EEG, a normal functioning
brain. Every drug that is decreased or eliminated helps Sarah be
more herself. One medication that Sarah continues to take is Ativan,
a drug for anxiety. Anxiety is one of the main challenges that Sarah
is confronted with at this time. It is anxiety, and not cognitive
functioning that when high can interfere with Sarah's concentration
and social re-entry. And what a world to assimilate!!!!! Can any of
us truly assimilate the full dimensions of the "reality " of the world
that we live in from corporate ethics, to hatred, inequalities, rage,
terrorism and the multiple sources that give it rise,.....the
wide range of the human experience. I dare to say that Sarah might be
perceiving, through her present cognitive and mental inhibitions, what
we have become too calloused to let in. This is truly Sarah's task.
Within this world of good, evil and grayness she has to resolve her
own 12th year of trauma, her near death experience, her personal
psychological angst as she begins to make peace with why this happened
to her, how did her parents "let" this happen, is the world safe, who
can she trust. Sarah is extremely close and comfortable with her
psych team headed by Dr. Leleszi. They are helping her to be able to
work with her anxiety with statements like, I'm angry and want to
talk about...." or, "I know that no one is going to hurt me but I
feel......."
Jim and Dianne both see a lot of progress. It has been a tough
summer. Dianne said,
"The psychological piece has been much more difficult than the
critical care days. In
the last few days I can tell Sarah is reality based, when she gets
anxious we can quickly ground her and talk things out." The other day
Emily (who just celebrated her 4 1/2 birthday) said, "Sarah's a lot
more like the old Sarah. She's not so scared." Everyone says, "Her
spirit is coming back." Sarah is showing decreasing amnesia.
Remember that Sarah's emotional processing is interrupted when she has
a seizure and a temporary brain injury in the course of her physical
recovery. Sarah lived life and death for herself and others in her
many months in critical care, not unlike war victims.
The professional team assures the McPharlins that Sarah is on the
mental health healing path going through sequential, appropriate and
brave steps toward psychological and spiritual recovery.
Sarah will be starting summer school July 11th. She making great
progress in math and is continuing to improve in reading. She is
planning to return to school in the fall. Dianne too is planning on
returning to part time teaching in the fall. Jim is helping
Katie fill out college applications as Katie enters her Senior year.
Sarah was able to attend a favorite teachers wedding, Theresa McCratty.
Theresa had a tear of joy in her eye as she walked down the isle and
spotted Sarah in the church.
The McPharlins would like to thank everyone for all the love and
support throughout this past incredible year. They could not have
done it without YOU.
I
have to end with a good story. Of course for every story I tell there
are a thousand that I don't mention. Jim's dear friend and past U of
M roommate, Jim Norr put on a fund raiser marionette puppet show with
elements of Sarah's story raising $850 for the Gift of Life program.
The show was performed for his church youth group. They are hoping to
take the show to Children's Hospital.
We wish you all a safe and happy fourth of July holiday.
May true freedom, the freedom to choose to trust, respect and love
life, that Sarah is so courageously striving towards this July 2002,
live in her heart, all of ours, and all of the people of the world.
With much love,
Kate, Kee and Eva (who is expected to arrive from Nicaragua today).
Sarah McPharlin Update
GO MIGHTY SARAH!
May 1, 2002
Dear
family and friends,
Sarah's biopsy results on Monday were very encouraging. Her
heart showed no signs of rejection, even though the doctors had
reduced her levels of steroids for a few weeks before. Jim was
equally delighted by the fact that Sarah's anxiety was lower over the
weekend. Even with the stress of the biopsy procedures, Sarah stayed
in pretty good spirits on Monday. He said it meant so much to see her
smiling and talking, even though they realize that the emotions will
ebb and flow and tomorrow could bring new anxieties.
In addition to the changes in medication the McPharlins have
worked closely with the counseling team on new strategies to help
Sarah's emotional recovery. They decided to hold off on participating
in soccer practices, though Sarah is continuing to practice with the
baseball team. Also, Ralph, the physical therapist
who worked with her at Children's Hospital, is coming out to the
house twice a week as a personal trainer to help Sarah build up her
strength.
Though life in the McPharlin house is "wild and busy," Jim says
"It is so much easier to take when Sarah is feeling better. It feels
like we are coming up for air."
Jim asks supporters to check out the information about a
Gift of Life Foundation fundraisers.
love,
Kee, Katy and Eva
April 12, 2002
Dear Neighbors and Friends,
Thank you so very much for tying the yellow ribbon on your tree.
You will never know how supportive this was to our entire family.
Every ribbon reminded us never to give up hope and it also showed
us how much love and prayers were coming our way.
Recently, however, in a counseling session, Sarah mentioned that
the ribbons reminded her of being sick. We had our last O.T., P.T.,
and speech sessions on April 6th and the therapist gave her a
Congratulations Graduate poster. We celebrated with a party and are
grateful that we won't have to go to Children's four times a week
anymore. Drugs are down to 13 instead of 24 and clinics are now two
weeks apart instead of one. She started one school class a day at
Brownell and has started to practice baseball and soccer on a
limited basis.
She wants so much to blend back into her normal life, so with great
respect, we are going to take down the yellow ribbons and celebrate
our re-entrance to LIFE.
Again, thank you. We were stronger because of you. Please continue
to keep us in your prayers. Sarah's security in the world has been
deeply shaken and it will take time, patience, and hard work to feel
safe again.
With much love,
The McPharlin Family
February 25, 2002
Dear friends and family,
Just a quick note of updates. I'm happy to
report that Sarah, her family, and the extended Carduck gang were able
to take their annual Boyne Mountain President's Day holiday ski trip.
Jim said it was a dream come true even if he did tweak his back the
second day. Sarah did not go skiing but with the hospitality of Ed
Grice, the Boyne area manager, she was able to get up the slopes in a
grooming machine and a snow mobile accompanied by Aunt Shirley and
Grandpa John. Another high point of the weekend was a visit to beloved
Camp Michigania. Sarah had moments of decreased anxiety, seeming more
comfortable and relaxed.
This week however was difficult with adjustments
in her psychotropic drugs due to inconsolable anxiety. Debating
whether or not to return to the hospital, Dianne and Jim decided not
to go through the ER medical evaluation route but are working with
their psych team and have resumed both Ativan and Paxel for Sarah.
The psychiatrist feels many of the emotional reactions are chemically
based. "Sometimes she's a petrified little girl, it's so sad," said
Dianne. "On those days we take two hour shifts. Today was better." Jim
says, "I just want to see her in less pain."
Often the hardest times are after one leaves the
shelter of the institution . Then, gracia a Dios, the intensity of
life and death crises soften and there is room and healing for new and
different levels of grief, loss, memories and fears to mix in with the
joy and gratitude of the homecoming. We too are feeling the
transition of our return to life in the U.S., we can only imagine how
Sarah is putting together her reality of returning to her twelve year
old life after the trauma of the past eight months.
The McPharlin family is picking up the pieces of
the family and community lives they knew and have to find new
bearings, now altered and still constantly changing. As the Chinese
proverb says, a thousand mile journey starts with the next step.
Love, Kate, Kee and Eva
--
Sarah McPharlin Update
GO MIGHTY SARAH!
February 6, 2002
Dear family and friends,
How about this fantastic news!! Today Sarah had her follow-up heart
biopsy and of the nine samples that were drawn, none showed evidence
of rejection or abnormal white cell activity. To add to that, the
internal pressures in her heart were all within normal ranges. You
can imagine how elated the McPharlins were with the results--we too
jumped up and down with happiness. For now Sarah will continue with
the same medications, but she is finished with the radiation
treatments. She will have another biopsy in five to six weeks to make
sure that the radiation treatments are holding over the long term.
She will need to go into the hospital about every week and a half,
which is less frequently than they had anticipated. Sarah handled the
procedures today very well and was encouraged by the test results.
Her new psychologist is working with her on relaxation techniques.
Her dad, Jim, said "She is such a trooper. It is great to be seeing
glimpses of the real Sarah shining through."
The McPharlins are planning a ski trip together
to Boyne in a few weeks as they continue on the healing journey.
We know that many of you have been as anxious as
we were to hear the results of these latest tests and that with this
message your spirits will rise up in celebration of Mighty Sarah.
Thank you so much for your unflagging support, your abundant love and
prayers, and for your tender, generous energy.
love,
Kee, Kate and Eva
January 28, 2002
Dear family and friends,
You have probably noticed that our letters
are less frequent since Sarah has been home--unless we have something
noteworthy to write. Tonight, I need to report that Sarah was
admitted to Children's Hospital last night (Sunday) for what Jim
called (with hindsight) a "sleepover." At supper, Sarah's color and
blood pressure were off and her anxiety was up. A neighbor M.D.
friend was consulted and suggested that Sarah receive oxygen
immediately and return to the hospital for an evaluation.
Happily, Sarah returned home the next day
after receiving her eighth scheduled radiation and some additional
testing. There has been no definitive diagnosis--a lowered magnesium
level and elevated anxiety definitely contributed. Now that Sarah is
home with more leisure time and more cognitive emotional skills, she
is beginning to understand the depth of the trauma she has been
through in the last six months. Dianne and Jim both felt that this
recent "hospital sleepover" might have been a blessing in
disguise--Sarah realized that she doesn't feel any safer in the
hospital and it is not the place that she wants to be. Her medical
team is encouraging more developmental psychology counseling to help
Sarah with the difficult, but situationally appropriate anxiety she is
feeling. This is something Dianne and Jim have wanted for some time
and they appreciate Dr. Walters' direct support. Another positive
aspect to this hospital visit is that Sarah met Children's Hospital
first heart transplant recipient, a handsome, twenty year old who has
played soccer and now works in construction. He gave her the advice
that people will respond to her according to how she presents herself.
They also met the most recent heart transplant recipient, who is
recovering well.
Other test results were encouraging. The
echo sound is good which indicates strong heart function. Sarah 's
white blood count is extremely low, but this is expected given the
radiation therapy and could indicate decreased rejection. The
scheduled biopsy for February 4 will provide more extensive data.
Medication is being adjusted and discontinued when possible. While
Sarah is home she has been enjoying seeing friends, going to the zoo,
to the Fox Theater and working with her school tutor.
Best wishes to all.
love,
Kate, Kee and Eva
16 January 2001
Dear family and friends,
Sarah answered the phone today when I called
to check in....what an improvement from just a few weeks ago! It has
been six days since the hospital staff lined the halls of Children's
Hospital to say goodbye to Sarah and her family after almost six
months in the hospital, almost all in ICU. When the nurse pulled out
the last IV, the last procedure, a free and unconnected Sarah, Dianne
broke down to cry and was comforted by the rehab team, Ralph and
Tracy, that they have grown so close to.
Since that time Sarah continues to make
daily progress in all areas. It often seems as though they just have
to reintroduce a concept to her and then she continues to progress
with the skill. She is doing math homework and will begin home
schooling with the Grosse Pointe School System next week. Sarah will
return to the hospital Monday, Wednesday, and Fridays for her rehab,
radiation treatments and clinics.
Over her first weekend home, Sarah got her
haircut, went to the mall to buy some clothes, and tried out her bike
with assistance. "She wants to do things," says Dianne. Sarah also
went to Katie's hockey game, where Katie played casted with a sprained
thumb, and when the family entered the arena, they announced over the
loudspeaker, "We want to introduce a very special spectator today,
Sarah McPharlin." There was not a dry eye in the crowd.
Crowds, confusion, some humor, and abstract
subjects are still difficult and she varies from hour to hour. Sarah
is stabilizing and has medication to assist her at anxious or
confusing times. "Katie and Emily make all the difference," Dianne
said, "I really think they are her best therapy." Four year old Emily
took Sarah's hand the other day and said, "It is safe here Sarah,
don't be afraid." Sarah is restricted with fluids, swelling a little
in her legs, and eating better if still lightly. Her last radiation
is scheduled for Feb. 4 with the biopsy scheduled soon afterwards.
She is extremely immunosuppressed at this time, an inevitable side
effect of the radiation. She wears a mask whenever she is outside.
Dianne and Jim are hanging in there with
their new roles as medical staff, educators, parents, and recovering
human beings. Dianne said that they saw what responsibilities they
could have had when they brought Sarah home, such as managing IV's,
giving crushed pills in the nasal gastric tube, problem-solving
clogged tubes, etc., so they are very grateful that Sarah is able to
take all her medication orally. Dianne's great organizational skills
would make any ICU nurse proud. Again there are thousands of
stories, stories within stories, like the one about Sarah's good
friend and her surgeon, Dr. Julie Glasson, who returning Sarah's call
from an out-of-state conference, confided that as a young child she
also had a difficult heart condition which inspired her to go into
medicine.
The last few months, the lines we have sent
you have probably read like a Kubler Ross case study on grief. We
have raged, negotiated, bargained, and pleaded, denied, and
depressed...there are challenges ahead, huge challenges, but this week
we pause for a moment of acceptance, peace and gratitude for the
simple pleasures of having Sarah home. Our thanks go out to all, the
skilled medical team, the community of support, Sarah's incredible
will to live, and her stellar family who stood by her every inch of
the way. Grace finds beauty in everything, grateful for grace.
love,
Kate, Kee, and Eva
Monday, January 14, 2002
The weekend was wonderful according to Sarah's
dad, Jim. Friday night, Sarah slept in her own bed for the first time
since last August. She didn't sleep alone, though. Emily and pet cat Guinness
snuggled in with her. Saturday, Sarah made her first outing. During
the weekend she went to sister Katie's hockey game and went
to Somerset Mall in hopes the holiday decorations would still be up
and to get some clothes that fit properly. Sarah enjoyed that and a
stop with the family at a restaurant. Interestingly, on a couple of
occasions she was bothered by the noise of all the people. That's
something Sarah hasn't heard for a while. Sarah also insisted on a
stop at the Grosse Pointe Woods park where her heart troubles all
started last July. She wanted the park to know that she is back and
more determined than ever! Yea, Sarah.
Sarah went back to Children's Hospital today to
continue her therapy - - but this time as an outpatient!
Saturday, January 12, 2002
SARAH IS HOME!!
Sarah has spent her first night at home since
last August! "We are so thankful," said Sarah's dad, Jim. "We are
thankful to all of the doctors and staff at Children's Hospital, and
for the support from family and friends and even people we have never
met who sent prayers and good wishes for Sarah. And we all send
special thanks to the courageous donor family!"
≈
≈ ≈ ≈
Friday, January 11, 2002
SARAH IS HOME!!
Staff members who are now part of the extended
McPharlin family lined the halls to smile and offer support as Sarah was
discharged from Children's Hospital today! What a joyous occasion. For the first time since
last summer, the entire McPharlin family gathered around the table for
dinner tonight.
11 January 2002
Dear family and friends,
Sarah's dad, Jim, called last night with the news that pending a few
positive lab results Sarah will make the move home today. His tone of
voice alone captured their sense of great hope and celebration at this
prospect. He said that Sarah's spirit is coming back day by day and
she is so excited to get out of the hospital. She will, of course,
still have to come back three to four days a week for ongoing
treatment, evaluation, and therapy.
Meanwhile, the nutritionist gave her the go-ahead to eat "pretty
much what she wants." Her first request was a BLT from Subway. She
is building her strength, talking more clearly, and gaining physical
endurance. One of her favorite activities is to paint with her Uncle
Thom McPharlin when he stays with her. Hopefully, she will soon be
doing that in her own home. We will keep you posted.
love,
Kee, Kate and Eva
New Year's Day, 2002
Dear family and friends,
Sarah made a second visit home today and spent about six hours there
with her family. Dianne says, "She seemed more relaxed this time and
so were we." Sarah's mobility is improving steadily--for instance,
when she went back to the hospital, she was able to walk all the way
to her room. She also is getting more clarity of thought--yesterday,
she correctly recounted to Dianne the sequence of everything she had
done in the morning with Jim. As she gains clarity she is beginning
to process again the entirety of this experience. One thing that is
very clear to her is that she wants to be home. When the Hospital
Psychiatrist asked her what she wanted she named three things: to
come home, to be able to eat real food, and for people to talk more
slowly. He was impressed at how clearly she expressed these thoughts.
Dr. Walters, the head of the medical team, back from the Christmas
holiday agrees that getting Sarah home is a number one priority. He
considers himself extra conservative; today he sent home an extra
piece of equipment that usually never leaves the hospital, so that
Sarah could continue her IV feeding. He asked Dianne whether she was
comfortable using the equipment on her own and she replied, "Dr.
Walters, we have been through six months of hell. This machine
doesn't bother me." The medical team is evaluating how and when Sarah
can make the move home. Yesterday's heart biopsy still showed
evidence of rejection, which is a cause of concern. The team will
consult with additional specialists tomorrow to consider possible
alternative treatments.
The second home
visit was possible because the irritation that Sarah was experiencing
in her bowels a few days ago had improved. She is beginning to take
very limited amounts of fluid by mouth. She is now off all the
diuretics and one other medication--now she is down to twenty. That
seems like a lot, but it is moving in the right direction.
Wishing you all a new year of joy and peace.
love,
Kee, Katy, and Eva