Jessie's Make-A-Wish

03/27/2008
As you may have read earlier in this blog, the Make-A-Wish foundation is granting Jessie a special wish. They asked her to dream and imagine whatever she wanted. To wish that one truly special wish. That once in a life-time adventure.

She still wanted a chocolate donut with sprinkles and paper and markers. OK, Donut....check! OK, Paper and Markers....check! What else. Next she wanted to go to Wyoming. Kristi's Mom and Dad live in Wyoming, so we will definitely be there sometime soon. OK, Wyoming...check! So we asked her again for a special wish.....she wants to go play with the dog. Mary and Tom from Make-A-Wish decided that maybe they would come back again on another day...give her a chance to think. We all agreed that would be best.

We showed her lots of ideas on the Internet, and after careful consideration, (and much prodding by her older brothers) that Disney World would be her Special Wish. She wants to eat with Cinderella in her castle, but only if Miss McGaugh (her Kindergarten teacher) and her friend Emma can come too. Unfortunately Make-A-Wish only allows immediate family. Sorry Miss McGaugh....sorry Emma. We wish you could come too.

The Make-A-Wish foundation along with the Give Kids the World organization have graciously and compassionately planned a special week for Jessie and the rest of us starting on April 7th.

THANK YOU !! Make-A-Wish and Give Kids the World and thanks Mary and Tom.

We will be staying in the Give Kids the World Village in Kissimmee Florida at night, and during the day enjoy the many attractions that the Orlando area has to offer.

We promise to take a lot of pictures and report back on how Jessie enjoyed her wish.

Thanks again for everyone's thoughts and prayers. There are some days that your kind words and acts of kindness get us through the day.

We are so blessed to have a wonderful God, community, school system, employers, doctors, family members, and friends to help us through this difficult time. Thanks to all of you!!

Cris, Kristi, and the rest of the Hall Zoo.

Update on Schedule - No Surgery Date Yet

03/27/2008

Diana Pillas at Johns Hopkins (Out of State Coordinator for the Pediatric Neurology Dept.) is currently working on Jessie's Surgery and PreSurgery schedule. As you can imagine, there are a lot of people and resources needed for a surgery like this. Although we do not have a surgery date yet, here is what we do know.

Please keep Diana Pillas in your prayers, along with Jessie. This wonderful lady at Johns Hopkins is doing all of this for Jessie and our family, as she, herself struggles with cancer. Diana was so nice to Jessie during our first visit and held her hand, and read with her and became her best friend for 2 hours. Remember, Diana deals with the worst cases of epilepsy, from all over the nation, and she does it every day. She has seen more cases of Rasmussen's and hemispherectomy patients than most doctors in the world. Every time we say a prayer for Jessie, we also say one for Diana. Please pray for her as well.

About the schedule:
- The below information is not set in stone, and anything is subject to change.
- We should know more the Week of April 12th. We may even have a schedule by then.
- Diana wants to split things up into two trips to Baltimore so that Jessie doesn't get "Hospital Burnout".

- Trip One will include Pre-Surgery things like (Total 7 - 8 days) :
- OT/PT/Neuropsychological Assessment at Kennedy Kreiger Rehab Center (3 Days)
- EMU Stay ( 4 or 5 days)

- Trip Two would be the actual Hemispherectomy Surgery trip (Total 4 - 6 weeks).
- The below assumes no complications...we'll pray for that.
- Surgery (8 - 12 hours) (It will be on a Thursday – 10 days in hospital if all goes well)
- Including 5 or so days in PICU (Pediatric Intensive Care) and 5 days in a regular room.
- In Patient Rehab at Kennedy Kreiger (On a Monday – 2 to 3 weeks)

Thanks to all of you for your thoughts and prayers.

Frustrated? Us Too!

3/25/2008

We know it's frustrating waiting on Johns Hopkins Hospital (JHH) getting their schedule together. We get frustrated too. We really do believe this is the best place to go for Jessie. Maybe this will help:

* Perhaps with a surgery of this magnitude, it's a good thing to slow down and not rush into anything.
* Because Johns Hopkins Hospital (JHH) is so team oriented and they want to do things right - it does take longer to coordinate everything from preliminary baseline testing to surgery to recovery to rehab to housing at Childrens' House, etc. This team approach and their ability to coordinate was one of the reasons we are choosing to go with JHH.
* Dr. Vining at JHH is one of the leading experts in this disease and her assistant, Diana - I can't help but think that they know what's going on - they have seen over 100 cases. Our neuros at Cooks have only seen a few cases.
* Surgeons at JHH have done over 145 hemis - we can't get any info from the surgeons at Cooks.
* We have read that waiting some will allow her left hemisphere to start 'rewiring' now and that her recovery might actually be better because of it.

"God's job is to fight. Our job is to trust. Just trust. Not direct. Or question. Or yank the steering wheel out of his hands. It is our job to pray and wait. Nothing more is necessary. Nothing more is needed." - Max Lucado

"You need to remain calm; the Lord will fight for you" (Ex.14:14)

Kristi and Cris

Happy Easter and Thank You!

3/22/2008

Jessie has received some neat get well items to help encourage her along - thank you all!
Prior to our trip to Baltimore, she received a Prayer Blanket from a church in Oklahoma (and good friends of Gram and Papa) and yesterday she got 2 giant get well cards from elementary schools in Cheyenne, Wyoming!

Thanks also to everyone that has contributed to Jessie's fund. We promise to be good stewards and use these funds in the best manner possible.

Everyone's thoughts, emails, and prayers are awesome and we appreciate it so much!

Happy Easter!

Kristi and Cris

Diana from Johns Hopkins Called Yesterday - EMU in Baltimore

Well, It looks like we are going to see how they do EMU (Epilepsy Monitoring Unit) "East Coast Style".

Diana Pillas, from Johns Hopkins called yesterday and said that she is trying to get us into the EMU in Baltimore in April. They need to make certain that Jessie has no Rasmussen Activity in her Left Hemisphere. There is only one thing more rare than Rasmussen's Encephalitis, and that is Bilateral Rasmussen's (disease on both sides of the brain). Dr. Vining said that she has only heard of three cases of bilateral Rasmussen's. They still have to be certain that this is not the case, as she would not be a candidate for surgery, and it, of course, would be devastating.

It is standard practice for them to go into the EMU for a few days. We will be in the EMU for 4 or 5 days in Baltimore, and then meet with the Neurosurgeon that will perform Jessie's Hemispherectomy (Hemidecorticectomy).

Kristi and I have been reading Dr. Ben Carson's books and really have enjoyed them. Read them if you get a chance, they are wonderfully inspiring. They really give you an insight into the philosophy of Neurology and Neurosurgery at Johns Hopkins. Dr. Carson is the head of Pediatric Neurosurgery at Hopkins, and was instrumental in bringing back the hemispherectomy for intractable seizures. He is a devout Christian, and an inspiration. We only hope that his legacy is somewhat present as Dr. Jallo works on our baby.

Johns Hopkins has had many generations of Neurosurgeons who have performed this procedure and perfected it, so Kristi and I feel comfortable with Dr. Jallo, even though we have never met him.

We will keep you posted.

http://jessiekelley.blogspot.com/

Jessie and Lincoln

Jessie got to meet her cousin Lincoln this week in Arkansas. John Miller, Cyd, Aunt Marisue, and Marcie drove down from Little Rock and met us for a nice dinner. It was so much fun to see everyone, and play with Lincoln. He is a cutie. All the kids took turns holding him and giving him a bottle. John Miller and Cyd are obviously good parents and taking right to the role.

We also ran into Joe and Suzie from Aledo while we were in Hot Springs. What a small world! Joe, if you remember is our friend who looked at Jessie's MRI, and PET images for us. Suzie is helping us with communications on Jessie's Illness.

Good to see everyone. Cris and Kristi

http://jessiekelley.blogspot.com/

Aledo's First One-Handed T-Ball Player

03/13/2008

In 1945, Pete Gray (1915-2002) of Nanticoke, PA, became Major League Baseball’s first and only one-armed baseball player. Gray played one season with the St. Louis Browns of the American League.

Well, Jessie might not make it to the pros, but yesterday, we quit trying to make her keep a glove on her left hand. She simply couldn't do it anymore. Her left hand and arm is mostly a "helper" limb anymore. She has a tough time grabbing things and releasing things, and has lost all fine motor skills in that hand. It trembles constantly with Epilepsia Partialis Continua or EPC. (Basically a continuous epileptic seizure).

So, Kristi bought her a right handed glove. (not too easy to find in her size and the appropriate color - pink). Kristi then taught her to catch with it. To throw, Kristi taught Jessie to wedge the glove under her left arm, and grab the ball with her right hand, pull it out of the glove and throw it. She does amazingly well. Way to go Jessie !! Way to go Mom !!

I'm so proud of her.

http://jessiekelley.blogspot.com/

Rasmussen's Encephalitis - A Semi-Detailed Summary

03/12/2008

For those of you that have made it this far in the blog, here is a fairly detailed summary of Rasmussen's Encephalitis by Dr. Vining at John's Hopkins. Jessie's Neurologist in Baltimore. Anyway, if you are not into the details, skip this blog entry. This is a couple of levels higher than the super detailed medical papers, and a couple of levels deeper than most of what you read in the news journals. It is a very well written paper for the non-medical, but curious mind. Thanks Dr. Vining.

Epilepsy Currents, Vol. 6, No. 1 (January/February) 2006 pp. 20–21
Blackwell Publishing, Inc.
C_ American Epilepsy Society
Struggling with Rasmussen’s
Syndrome
Eileen P.G. Vining, MD
Professor of Neurology and Pediatrics, Johns Hopkins University
School of Medicine, Baltimore, Maryland
Address correspondence to Eileen P.G. Vining, MD, Professor ofNeurology
and Pediatrics, Johns Hopkins University School of Medicine,
Meyer 2-147, 600 N. Wolfe St., Baltimore, MD 21287; E-mail:
evining@jhmi.edu.

Rasmussen’s syndrome has remained an enigma since it
was first described as a clinical and pathological entity in 1958.
Determining the etiology and how best to treat the condition
has been an enduring struggle for clinicians, pathologists, surgeons,
neuroscientists, and above all, for the families who need
to make treatment decisions for their children. Bien and colleagues
capture the tension of this struggle in an excellent, recently
published review that provides the basis for the European
consensus statement (1).
Frustration with understanding Rasmussen’s syndrome begins
with efforts to determine the cause of this devastating disorder,
which can destroy a cerebral hemisphere in previously normal
children. When the pathologic findings were first noted
(lymphocytic infiltration and microglial nodules), it was assumed
that a viral etiology would shortly be discovered. This line
of investigation was avidly pursued, with increasingly sophisticated
methodology, until about a decade ago. No consistently
reliable viral cause has been found. The next wave of enthusiasm
in determining the etiology focused on the report of elevated
GluR3 antibodies (2) in some patients with Rasmussen’s syndrome
and improvements that were seen when patients underwent
plasmapheresis (3). Theories were postulated to explain
how these circulating antibodies were responsible for unihemispheric
abnormalities. For example, one hypothesis suggested
that a localized dysfunction (e.g., trauma, infection, etc.) led
to a breakdown of the blood–brain barrier, which then allowed
the GluR3 antibodies to attack neurons—either through cytotoxic
activation of the glutamate receptor or through complement
activation. However, elevated GluR3 antibodies have
been found in other types of seizure disorders, and certainly they
are not found in all patients with Rasmussen’s syndrome. Interest
continues in pursuing other humoral-related mechanisms,
but in the last decade, the focus of much research has shifted
to examining the role of T-cell–mediated toxicity. This line of
investigation is fueled by the recognition that the vast majority
of inflammatory cells involved in Rasmussen’s syndrome are T
cells; in fact, they are cytotoxic CD8+ lymphocytes, which have
been shown to attack neurons.
The pathologic findings underscore the problems associated
with understanding the cause of Rasmussen’s syndrome.
Abnormal and normal tissue can be found in juxtaposition to
each other. What is the pathogenesis that can cause regions of
multifocal destruction to be surrounded by normal appearing
tissue? This feature of Rasmussen’s syndrome leads to a sense
of futility for performing brain biopsies, and it also forces consideration
of mechanisms postulated for multiple sclerosis and
postinfectious encephalomyelitis (4).
The clinical manifestations of Rasmussen’s syndrome are
often confusing. Although the hallmark of the disease is epilepsia
partialis continua, it does not occur in all patients and the
nature of the focal seizures is very unusual. While the progression
of partial seizures is usually envisioned as a Jacksonian
march, this image is routinely not the case in Rasmussen’s syndrome.
Clonic activity may begin in the face; then in the hand,
then the leg, and then the shoulder—the progression obviously
reflects the patchy nature of the hemispheric pathology. Children
also can manifest features of a movement disorder before
seizures are clearly apparent. The EEG often is confusing. It
may show a paucity of epileptiform activity, even with epilepsia
partialis continua. Bilateral abnormalities are not uncommon.
MRI has become one of the most important tools to confirm the
presence of Rasmussen’s syndrome. Atrophy, particularly progressive
atrophy, will appear. This feature, too, does not always
reflect the clinical situation. Extensive atrophy has been noted
at clinical onset in some children while other children show
minimal change for varying periods of time. Clinical and MRI
progression of the disease is quite variable. Disease progression
can happen quickly with devastating results, and it can happen
insidiously, with periods of respite that circumvent more definitive
treatments. The European consensus group devotes a long
table to elaborating the differential diagnosis of Rasmussen’s
syndrome; however, close inspection of the list reveals that the
critical aspects of diagnosis are the history, EEG, and MRI (1).
There is no test that is specific for Rasmussen’s syndrome, even
biopsy.
Medical treatment of Rasmussen’s syndrome has largely
been a failure. Standard anticonvulsant therapy does not stop
Current Review in Clinical Science 21
the seizures. There has been more than a decade of experience
in using various forms of immunotherapy, but these are unsatisfactory
as well. Corticosteroids are probably effective in the
short-term and when status epilepticus is present. Long-term
use is problematic. Intravenous immunoglobulin replacement
therapy may stabilize patients for varying periods of time and
has been used in combination with steroids for some individuals.
Side effects, including aseptic meningitis and phlebitis, exist,
and the cost of treatment is not inconsequential. Plasmapheresis
was popular when GluR3 antibodies were believed to be the
etiologic factor but does not appear to be effective for long-term
use.Newer forms of immunomodulation are hopeful, including
one described in an earlier report by Bien et al. (5) on the use of
tacrolimus to stabilize neurological function and prevent further
atrophy (without improved seizure control). In addition, preliminary
work using immunoablation with cyclophosphamide
to eliminate the T-cell population that apparently is activated
and then destroying brain seems promising (6). Following cyclophosphamide
treatment, the lymphocytes that subsequently
are generated presumably are na¨ıve and would not continue the
destruction of brain.
Surgery also has been part of the artillery used to battle
Rasmussen’s syndrome. In the earliest days it became clear that
the entire hemisphere had to be removed to produce a cure.
However, in the 1960s and early 1970s, there was virtually a
moratorium on using surgery because of concerns about longterm
problems, such as hemosiderosis. The moratorium ended
when better techniques, as well as neuroimaging, became available
in the late 1970s and early 1980s. Surgeons continue to
search to define the best technique, with variations that include
hemidecorticectomy and hemispherotomy with disconnection.
Proposed diagnostic criteria are at the heart of the consensus
statement paper by Bien et al., and they convey a sensitivity
to properly diagnosing patients before extensive tissue
destruction has occurred (1). Early diagnosis is important to
avoid the only cure currently available—removal of the hemisphere.
If caught early, before the process destroys much of the
hemisphere, the child might have seizures that could be controlled
with medication, without the significant handicap of a
hemiplegia. Although previous attempts to establish diagnostic
criteria have failed, the consensus reached by the European
group is significant. According to their statement, diagnosis is
achieved in one of two ways (1). First, a diagnosis is reliably
made when all three criteria found in Part A of the consensus
statement are fulfilled: (i) focal seizures with unilateral cortical
deficit; (ii) EEG showing unihemispheric slowing (± epileptiform
activity), with unilateral seizure onset; and (iii) MRI,
with unihemispheric focal cortical atrophy and either grey or
white matter T2/FLAIR hyperintense signal or by changes in
the ipsilateral caudate head. Second, diagnosis is attained if two
out of three of the features in Part B are fulfilled: (i) epilepsia
partialis continua or progressive unilateral cortical deficit, (ii)
progressive unihemispheric focal cortical atrophy on MRI, or
(iii) appropriate histopathology on biopsy. Using these criteria,
the majority of individuals can be diagnosed without biopsy.
The ultimate frustration in coping with Rasmussen’s syndrome
lies in the failure to be able to effectively treat this
obviously immune-mediated disease. The European consensus
group has provided a thoughtful algorithm for the therapeutic
approach to patients with Rasmussen’s syndrome (1). The
algorithm appropriately considers the seizures as well as the progressive
neurologic decline that accompanies the disease—both
of which clearly should influence decisions regarding therapy.
Although the authors describe patients with ongoing progression
of neurologic dysfunction, who do not have intractable
seizures and can be referred for continuing immunotherapy,
this scenario is virtually unknown. The consensus group also
provided a list of recommended areas for future therapeutic
research, which is admirable. The group recognizes the difficulties
in studying this population, particularly in regard to efficacy
parameters.
A few final thoughts about the struggle: parents and patients
engage in a particularly difficult process, as the affected
children were normal before this insidious process began. Parents
are looking for a cure that will halt the progression and
return their child to previous functional levels. Anticonvulsants
and hemispherectomy cannot achieve this result. And so far, immunotherapy
has not been effective. Early diagnosis is critical—
before significant neurological deterioration and destruction of
the brain occurs. And finally, greater understanding of the etiology
of Rasmussen’s syndrome is essential to the ability to
determine specific therapies.

http://jessiekelley.blogspot.com/

The Dilemma

03/12/2008

I was reading some research today and ran across this succinct summary of the dilemma that many Rasmussen parents must resolve, including Kristi and I. Basically deciding whether or not to move forward with the removal of half of their child's cerebral cortex. Of course, we have made that decision, pending approval by the Hopkins Neurology and Neurosurgery team, but this sheds some light on that dilemma. This may be bordering on whining, but I think that we may be excused under these circumstances. This is an elective surgery, and the parents must make the decision. Elective in the sense that the parents have to make the final "GO" decision. Luckily this is an elective surgery that our insurance will pay for. The medical staff will not make the decision for you. - Cris

"The dilemma is whether to perform surgery early and risk inflicting greater motor, visual and language impairments from which there may be greater recovery at a young age, or to pursue other therapies and delay surgery until the disease produces similar motor and visual deficits to those which would be inflicted by surgery. However, during the delay there may be progressive impairment of language and intellect in addition to deterioration in motor and visual abilities, with reduced potential for recovery in the older patient. Often the severity of the epilepsy along with the social and behavioural problems encountered in these patients push one into surgery but, in most hemispherectomy series, it is these patients in whom the highest rate of increased impairment is reported and for whom periods of rehabilitation are required. This, however, is not a surprise; it is a predicted consequence not just of surgery, but of the natural history of the disorder." A. M. Devlin, J. H. Cross, W. Harkness, W. K. Chong, B. Harding, F. Vargha-Khadem and B. G. R. Neville

http://jessiekelley.blogspot.com/

Back From Baltimore

03/10/2008

We just got in from Baltimore tonight. We met with Dr. Vining and Diana Pillas at Johns Hopkins today and as suspected, they confirmed the diagnosis of Rasmussen's Encephalitis. They believe that surgery is the best treatment for Jessie's type of seizures and this disease. There are other things that they have tried, but with little success. They were both very compasionate and caring people, and straight forward with dealing with us and Jessie. They spent 2 hours talking to us and Jessie.

They have agreed to take her case, but it is entirely up to us whether or not a hemispherectomy is performed, and to some degree, the time frame. They don't feel that it is as urgent as Cook's does.

Kristi and I feel, with Jessie's decline, that the sooner we get the surgery scheduled the better. She has very limited use of her left hand and has continuous twitching in her left arm and hand and now almost continuous twitching in her eye.

Last night, we stayed with Lynn, Al, and Jody in Baltimore, and they were very kind to us and spent quite a bit of time talking to us about Rasmussen's, hemispherectomy, and all the emotions that go with them. Jody, their daughter, had a hemispherectomy approximately 15 years ago. She is 18 now. Jody took Jessie over to the park across the street, and now Jody is Jessie's buddy. She talked about her a lot on the plane ride home. We watched lots of videos of Jody, and she is quite the dancer.

We also met two other hemispherectomy patients up at Hopkins. Mary Beth and her son Dylan were there for a check up, and they spent some time talkin with us and sharing some pictures. Dylan is 15, and in high school. He had his surgery when he was 2 or 3, as treatment for a stroke. He is doing very well and kicks for his football team and lettered in bowling and is on the summer swim team.

We also met Jon, Holly, and Avery. Avery just had her surgery, and was getting the stitches out today. They are going home today after a long stay at Hopkins.

We sure appreciate all of these nice people taking the time to get to know us and letting us get to know them. They were all so supportive and caring.

http://jessiekelley.blogspot.com/

Pictures from Jessie's Birthday Party at Skate Queen

http://jessiekelley.blogspot.com/

Happy Birthday Jessie !! 6 Years Old Today !!!!

03/08/2008

Today is Jessie's 6th birthday, just ask her...we've been hearing it all day. She got a new bicycle from Mom and Dad with a "basket and a kick stand". Pink of course.

Her party will be a Skate Queen and I think that every kid from her class is coming, plus some that are neighbor kids and friends. We'll post some pictures tonight.

http://jessiekelley.blogspot.com/

A Big Thank You to MIDWEST AIRLINES

http://www.midwestairlines.com/

I just got an amazing email from BJ Dreifke - Public Relations Assistant at MIDWEST AIRLINES, and they have volunteered to take care of Kristi's, Jessie's, and my air travel needs between Dallas Fort Worth and Baltimore for Jessie's surgery, when we know a date.

I can't tell you how overwhelmed we were when we got this email. BJ was so nice and explained everything and made it all sound so easy. She understood that we probably wouldn't know when we were leaving from or returning to DFW, but that wasn't a problem.

In a time of high fuel costs and a very competitive market, BJ and MIDWEST AIRLINES really came through for the Hall family during a time of crisis. Thank You!!

Cris, Kristi, Matt, Jake, Josh, and Jessie

http://jessiekelley.blogspot.com/

Faith, Hope, and Love

03/04/2008

Over the past few weeks, we have received so many prayers, words of encouragement, and commitments of faith. It has been amazing. Faith is our foundation and gets us through these tough times. Kristi, Jessie, the boys, and I appreciate all of the letters, cards, phone calls, and emails so much. The support has been overwhelming and helps us to realize how much Jessie and our whole family is loved on so many different levels. Thank You friends and family.

Today's post, however, is about Hope. Hope is our anchor in life. It stabilizes us and keeps this rocky ship from drifting out of control. Hope allows us to look to the future.

This may be one of the most important posts that you read. I believe that it will help you truly believe that Jessie will be OK and that she has a real future and can grow up to live a productive and happy life. Kristi and I believe that with all of our hearts.

Meet Cameron. She is 7 years-old and a real cutie. She is in school and doing well and likes to do things that normal 7-year old girls do, like play dress-up and celebrate birthdays, and hang out with her friends and family. Cameron had a hemispherectomy at Johns Hopkins in June of 2007 (nine months ago). Her story is here http://www.blogger.com/profile/09618184310533248537 .

Cameron's story is not the only story of miracles and hope and faith and love either. Although the Rasmussen and Hemispherectomy community is small, it is strong. There are stories like Brandi Binder who had her surgery in the 80's, who is now a professional artist. And Jody, who is about to graduate from high school and dances three times a week, and working on choosing a college. And the stories go on and on. We are going to meet her and her family this weekend.

I hope that this post gives you Hope for Jessie and some peace of mind for all of you who care so much. Please join us in our Hope for the future.

Cris

http://jessiekelley.blogspot.com/

Go Sidewinders!

Jessie had a rough morning with several seizures but powered through them and got ready for her t-ball team's scrimmage this afternoon. She had a great time!

http://jessiekelley.blogspot.com/

Family Housing Near Johns Hopkins

McElderry House Lodging
http://www.mcelderryhouse.com/
info@mcelderryhouse.com
2000 McElderry Street
Baltimore, MD 21205
1-800-295-4131
McElderry House Lodging is a very special place that provides lodging to the patients of Johns Hopkins Hospital and their families. We offer seventeen fully furnished, fully equipped townhouses, all within two blocks of the Hospital

Children’s House
1915 McElderry Street, Baltimore, Maryland, 21205 · (410) 614-2560 Fax: 410-744-1984
http://www.believeintomorrow.org/housing_hopkins.html
info@believeintomorrow.org
The Children’s House at Johns Hopkins is part of the hospital housing program of the Believe In Tomorrow National Children’s Foundation. This facility offers affordable housing for families of pediatric patients who visit the Johns Hopkins Children’s Center.

Rondald McDonald Charities of Baltimore
http://www.rmhbaltimore.com/help/contact.html

Family Coordinator/Hospital LiaisonSusan Salt(410) 528-1010, Ext. 101E-mail: susan@rmhbaltimore.com
House phone is (410) 528-1010.Fax number is (410) 727-6177.

Hackerman Patz House – Cancer Patients

Map of Hospital Area
http://www.mcelderryhouse.com/map.htm
http://www.hopkinsmedicine.org/directions/JHH_Campus_Guide_old.pdf

http://jessiekelley.blogspot.com/

On Fighting Denial

03/01/2008

I warn you up front, that this post is a bit philosophical. So if you're not into that kinda thing, don't read this, but enjoy the pictures.

Each day as I watch Jessie grow and learn new things, I find myself drifting dangerously back into denial of the disease. I'm a reasonable intelligent man (although Kristi might argue that one ;-0), and I know that Jessie has RE, and I know that she will have to have a hemispherectomy. My mind plays tricks on my heart and visa versa.

I'm not sure if "denial" is an emotion or just a saftety mechanism that keeps us from all ending up in straight jackets. I think that the intent of denial is for our own mental health. However, with RE, it's just one giant mental anomaly that can't be resolved, no mater how much you read, think, and pray.

On the one hand, I know that the earlier that Jessie has the operation, the better off she will be in her recovery, while on the other hand, I watch her play outside, and I am confounded beyond resolution.

A good friend of mine, Greg, gave me some good advice around Christmas time. It is really just now making sense to me. This was the time during the disease that I was VERY angry at God for doing this to my daughter. He told me that God was trying to bring me closer to Him. Well, it is working, but why does it have to be so hard on everyone?

Here are some pictures that I took of Jessie today. Cris







http://jessiekelley.blogspot.com/