Childhood CancerPaigee's LifeBorn Oct 15,98Angel, Oct 20, 05

The Second Year Anniversary

2007-10-20T08:00:00.000-07:00

I guess I'll never know how it was for Rosemary. For me it is very difficult still. The second year of missing Paigee didn't get easier.

Interesting

2007-10-17T13:24:00.001-07:00

Parental Deliverance, Statistics
more Parental Deliverance

The 15th

2007-10-14T15:42:00.000-07:00

Paigee, this would have been your 9th birthday. You would be in 3rd grade, buddies with all the boys. I will remember you throughout the day; days before and days after in fact. I look for you in all the blonde children I see. Soon, I will see your beautiful face again.

Madsie

2007-10-05T17:38:00.001-07:00

Madison is doing well according to Mom. The end of the month has the normal 3 month interval testing. This time they may opt to do an ultrasound of the torso vs a CT Scan.

Another Loss

2007-10-01T15:03:00.000-07:00

After the loss of a child, it is not uncommon for the parents to separate. Almost 2 years after Paigee's death, our marriage is now yet another casualty of that lost child. After a 23 year partnership, now a new loss to mourn. It's ok Paigee, we both continue to love you. Until we reunite in another life, my dreams are of you Paige.

biopsy

2007-05-19T22:23:00.001-07:00

Monday Madsie is going in for a full day to complete the 4.5 month test. Normally this would have occured at 6 months but because of the early rejection last time they have accelerated the testing. Praying for good results.

Another life touched by Rhabdo

2007-04-23T11:17:00.000-07:00

I just received an email from a woman in Oklahoma who is involved in raising money for an Amish child in Indiana who has been diagnosed with Rhabdo. The family is uninsured and anything we can do to spread the word to help raise money... The child's name is Mary Anne, she is 7. Her Web Site

4 years

2007-03-03T16:57:00.000-08:00

Paigee, tomorrow will be the 4th anniversary of when your tumor was found. Funny how things like that can slip your mind. Mom didn't forget. Most times I can tell when something is bothering her, this time she had to remind me. Three roses arrived today in your memory sweetie. Thank you for the roses ! Paigee, I think about you all the time, but I can't deny though that I forget anniversaries like this one.

New Madison location

2007-02-04T11:52:00.000-08:00

In addition to Madison's blog ( http://shesangopera.blogspot.com ) there is a new site (http://madsie.us)

Madison

2007-01-01T14:08:00.000-08:00

If you are interested in Madison's progress..in the left corner of this blog is a category Our Links, under that is the link "Madison's Blog" Click there and keep abreast of Madsie's progress.

Madison

2006-12-19T23:48:00.000-08:00

Tonight at 10:30 PM Madison had a kidney transplant.

Sad news

2006-11-28T20:23:00.000-08:00

When the kidney arrived at the Hospital tonight the transplant team found something at issue with the organ. They have postponed the transplant pending finding another suitable match.

More Exciting news

2006-11-28T19:52:00.000-08:00

So the story goes.. Charlie and Lisa were on the way to pick Madison up at school. Ok, ok....

The call did actually come in while Madsie was at School. Charlie and Lisa rushed like chicken's with their heads cut off to the school to pick Madison up. When they got there school had just got out. And just like you'd expect, they couldn't find Madison anywhere. Finally the school had to announce over the PA system, "will Madison Kitz please come to the office." To say Madison was excited was an understatment. The entire trip to Stanford she kept saying faster, faster.

Now they are at Stanford and going through the normal Admission routine.

To make a long story shorter: (Bullet Chart ala Vince Gallagher)
1) She has been started on antirejection drugs in preparation for the surgery.
2) She has also been placed on some type of Steroid.
3) when I talked to the family around 7:15 she was in bed haveing her blood drawn
4) having to have your blood drawn at 8 isn't a happy thing.
5) initially the surgery was scheduled for 8:30PM, then it was bumped to 9:30PM. As of now the
plan is to begin the transplant procedure at 12.

On the downside, Madison's Grandmother got a speeding ticket for driving 80 in a 65 as she rushed to Stanford, and no, the Officer didn't let her off with a warning.

Answered Prayers

2006-11-28T19:05:00.000-08:00

It finally happened. Madison was yanked out of school today and rushed to Stanford. A donor organ that was a perfect tissue match was found today. I'm not clear yet about all the details. I just got off the phone with Madsie's Mother. I'm going to call back in 30 minutes or so, Madison's room was full of Doctors and Nurses.

A flutter of wings

2006-10-20T19:18:00.000-07:00

A very close friend wrote this poem last year after Paigee's passing. I loved it then and again now. Thanks Julie. A special thanks to Ben's mother Christine for last years butterflies. I decided then, each year after that I would release butterflies on the anniversary of Paigee's death. We all cried today as 70 so butterflies flew from the box they were in. It was a beautiful sight.

She had shimmery golden pigtails
and a smile bright as sun.
Caterpillars were her latest delight.

She held her treasure
gently in her hands
and then
metamorphosis
life reborn in the small of her palm.

Up she went
on the butterfly's wings
into the light of heaven.

Julie Pratt

Last year

2006-10-12T13:02:00.000-07:00

Last year this time, Paige was still conscious. It was the following Monday when we had to give her Phenobarbital to control the seizures she was experiencing. After that she was basically unconscious until she passed. Bad memories. In so many ways I am still numb, most days it's like she is just away for a visit. She'll be home soon....

2006-10-11T19:54:00.000-07:00

Paigee, August 2005

!!!! HOORAY !!!!

2006-10-10T11:47:00.000-07:00

Madison's Bone Scans and CT Scan came back clear ! The bone marrow ( biopsy and
aspirate ) test has not been done but we are so hoping that comes back
clear too. The results from that test should be back within the week.
We are all doing a happy dance. The mood at Madsie's birthday party
Sunday, was tense. Madison of course was her happy, smiley self.

First day of school

2006-08-29T18:51:00.000-07:00

Paigee, I hope there are Web Browsers in Heaven. I hope you read all my entries and know how much I love and miss you. Today marked a missed milestone, a development step never to happen. I blocked it all day Paigee. When I saw all the kids at the School across the street from our house, I blocked it. When I came home and the parking lot at your School was full of cars, I blocked that. Last week I knew this day would come, I thought about you on that day, but today I was able to keep it off my mind. When I got in the house and Mom was upset, I remembered. My eyes are teary as I think about what, "I'll never see you again" means. I have pictures of you all over the house. But today, what brings tears to my eyes is knowing that now that I'm home, you aren't here telling me how your first day of 2nd grade went. I loved you so much in life, but right now I'm absolutely overwhelmed over how much I still love you. Paigee....

depressabration

2006-08-22T17:13:00.000-07:00

Such a sad day the 20th was. That day marked the 1 yr anniversary of Ben's death. As we are approaching 20 October I can imagine myself in John and Christine's shoes, and of course it brings tears to my eyes. Today a co-worker saw Paige's picture on my computer desktop and wouldn't take a subtle hint I didn't want to talk about it. That brought tears to my eyes. The ever present falling from the cliff of losing control over my emotions.

Madsie Update

2006-08-01T11:36:00.000-07:00

Just found out that Madison has a November 6th date scheduled for her Kidney transplant. In all likelihood her adopted mother will be the donor; they are a match. At least the tests done so far indicate they are compatible !

Paigee is in Heaven smiling down on her friend.

Unavailable

2006-07-27T14:56:00.000-07:00

I'm finding that every so often the blog is unreachable. The solution is to simply republish the existing data and once again the Blog will show up.

A couple of days from now will mark the 1 year anniversary of Paigee and I's trip to Hawaii. I sometimes look back and wonder if I wasn't too stressed to make the lasting memories I hoped for.

Sweet Picture

2006-07-06T22:36:00.000-07:00

Auntie Liz had this pic on her camera from our North Carolina visit April 05. Paigee will always be my gorgeous girl !

2006-06-23T18:26:00.000-07:00

Madison

2006-06-20T10:47:00.000-07:00

Madison's Scans came back clear. This is the periodic Scan to monitor her continued remission. One more Scan in Oct/Nov and then she goes on the list for a donor Kidney. Madison was Paigee's best friend, well along with Devin, Andrew,Juliet.... nice to be so young and have had so many best friends.

What are the odds ?

2006-06-06T21:34:00.000-07:00

What is the least likely subject you would expect a TV show to be about with regard to our situation, losing Paige to Cancer. Let's watch House ! Shocking as it seems the story was about a 9yr old girl with Alveolar Rhabdomyosarcoma. Oh, how bad could it be. First scene; girl on table receiving CT Scan, no hair and surprisingly appropriately white due to Anemia. The only unrealistic component was the lack of Auschwitz thin. Flip, flip. A little too reminiscent of times gone by.

Ghostly visitor

2006-05-18T09:49:00.000-07:00

On Monday and Tuesday night at 12:30 the ceiling light and fan turned on. Then last night at 12:45, it came on, but only the light. I'm leaning toward a visit from Paige. A friend who lost her little boy to Cancer also receives visits ( hi Lori ) from her son. This has been an exciting occurence, even Rosie thinks it's Paigee.

Cancer Baby

2006-05-14T23:45:00.000-07:00

For any of you that followed her Blog, Cancer Baby ( Jessica ) died the morning of the 12th.
Her Blog

Christine at Camp Okizu

2006-05-14T17:56:00.000-07:00

group1
Originally uploaded by poodlepaige.

Christine is the furthest to the left !

Mother's D(read)AY

2006-05-14T17:51:00.000-07:00

For Rosie, it has been a tumultuous day. Of course that would be expected considering the nature of the event. How do you act on a day like this after the death of your child. Even for me it's hard. Rosie and I tried to pick a safe place to spend the afternoon. We made the mistake of going to a restaurant that was one we took Paigee to, she loved the grilled cheese sandwiches. On the way in and out of the restaurant, we would swing her high off the ground as she squealed for more. I dread the times to come, hoping for safe plans. Still to be reminded of such happy times, bur for now, such sad memories. I had tears in my eyes in the restaurant as I listened to all the families with children. I felt no joy in the thought that at least these parents still had their children; healthy and close by.

Today is a sad day. My heart goes out to Lori and Christine.

Another friend from Standord passed recently, she was a lovely teenage girl, Christine helped keep Paigee busy at Camp Okizu last summer. Christine lost her fight to Bone Cancer.

IPOD vs PALM

2006-05-01T07:39:00.000-07:00

I"m transferring my contacts and calendar from my old dead Palm to my IPOD. I'm looking through the calendar and noticed that Paigee got her first haircut when she was 14 months old to the day. That kid had a head of hair. It started out red and at 6 months started turning into a white blonde color.

Oncology Years

2006-04-30T12:11:00.000-07:00

Rosie coined a new term ,"Oncology Years". Along the lines of "Dog Years". Say for every year the patient and their supporting family are struggling with Cancer, that year essentially is a reduction in 7 normal years. This accounts for Madison's level of maturity. Life on an accelerated time frame.

Easter Surprise

2006-04-22T20:15:00.000-07:00

After Paigee died, Nana moved to the Central Valley to live with a Sister. After getting all setup and settled in, she started putting together a wall dedicated to Paige. First some history. Paigee was a Tomboy and wasn't much interested in frilly or delicate; unless of course it was a bug or lizard. During one of the Christmas' during her treatment, Nana bought glass Fairies to put in the Christmas Tree thinking that it would make Paige happy. Paigee wasn't happy at all, "Nanaaaaaaaa". The Fairies later ended up around the house, in the Ficus, and other various places.

Early Easter morning last Sunday, Nana was awoken by the sound of breaking glass. Somewhere after her relocation, the Fairies ended up as part of a shadow box, part of the Memorial to Paige. Mind you, the Fairies were carefully placed and secured very well. Nana, for some unknown reason had associated those glass Fairies with her Paige, much like a picture on the wall they had come to symbolize an image of Paige. Now we have yet a new story of Paigee visiting us beyond the grave. Those that knew her well, knew she could be mischievious. The currently accepted belief is that while visiting her family at Easter, she took an Angelic step to once and forever settle the issue with those damn Fairies.

I feel her visits, often late at night as I read before going to bed. I can no longer see her, yet, I know she is often nearby. I want to believe that she misses us as much as we miss her. I hold on to the belief that sometime, sometime in the future, we will be together again. What I wouldn't give up for that to be now.

Madison

2006-04-12T20:54:00.000-07:00

Paigee's favorite friend from Stanford Children's Hospital was Madison
Madison New April 2006

Just thinking...

2006-03-27T22:41:00.000-08:00

Thinking about you Paigee. I miss your sweet little face and happy voice tonight. ( DAD )

Wow

2006-03-07T20:32:00.000-08:00

Madison's Scan results were clear; 4 months now. This is great news, Rosie was in tears when she heard. Madsie is a sweet little girl that deserves a long healthy life.

Long Time away

2006-03-04T13:52:00.000-08:00

I feel almost like I have abandoned Paigee's memory having nothing to Blog for so long. This month would mark the 1 year period that I took off from work to be with her, giving Rosie a break from all the Medical responsibilities. As much as I tried to be there in that capacity, Paigee still wanted Rosie, and of course Rosie was there for her. Rosie was the most unbelievable Mother imaginable. Being able to juggle work and be at the Hospital with Paigeee so much in that last year of her relapse not to mention all the years of just being the world's best Mother. Looking back on those 32 months it almost seems like Rosie's devotion went unrecognized by people outside the immediate family.

It's an especially emotional time right now. Paigee's dog Cottontail went to live with Nana after Paigee's death. During his life, Poodha Cottontail was mostly Nana's responsibility with all that Rosie and I had going on with Paigee and our employment. Rosie called Nana, the Sherpa Nana because of all she did for us while she lived with us during those 32 months, including Poodha care.

Nana struggled with her rheumatoid Arthritis and what we now know is a torn miniscus in her knee. She struggled with the 2 flights of stairs without complaint during Paigee's treatment. After Paigee's death Nana went to her retirement with a Sister in Central California. Having to deal with Kaiser had meant a slow discovery into the diagnosis of the torn meniscus and subsequent delays scheduling appointments and now almost being seen by a specialist outside of the Kaiser System. Last weekend Rosie and I went to Nana to retrieve what we know have been told is, "her dog". During the time it takes to complete surgery on the knee and the subsequent recovery it is best if Nana not be responsible for the walking and care of a frisky 2 year old Poodle.

Having Poodha has been an unexpected pleasure. Having him in the House is almost like having a slice of Paigee back in our lives. We often look at each other in astonishment, thinking somehow in some way Paigee may be visiting us through this little white dog. I fear giving him up when Nana's health is better will truly be a difficult separation.

I returned to work after that year off last month, that too is a difficult reminder of Paigee's loss. The up note is I believe I have found a Company that is more a family than a cold Corporate entityp one who's only interest is in how many hours they can bill me out at. The majority of those 32 months I struggled with what can only be called a cold and uncaring Corporate Citizen. However, I have an amazing respect for Rosie's Company and the amazing compassion and love they exhibited during those 32 months. In my books there isn't much that can be said for having the title, "one of the top 10 Companies in the US". Best to move on now.

Those 32 months changed us in so many ways.

Pleasant experience

2006-02-09T09:34:00.000-08:00

Rosie is out of town this week and I'm on my own. Last night I went out for Indian food. While sitting at the table waiting for my meal I had this peace and faint image of Paigee sitting across the table from me. I know it was likely due to low blood sugar, but in my mind she was with me there. I had the feeling throughout the meal and then later at home I felt like she was with me still.

Perhaps my memories are so strong at times that they blur with reality and I'm treated to incidents like this. Regardless, it was especially pleasant and I look forward to more of these experiences.

Excitement

2006-02-06T14:59:00.000-08:00

Madison's trip to LA/Disney Land went off like a charm. Her favorite rides were Tower of Terror and the Indiana Jones ride. I have been designated the co-rider with Madison in future visits say her Parents, Charlie and Lisa. Paigee didn't like scary rides so joining Madison at Disney would be fun. Madison was back to Palo Alto in time for her afternoon Dialysis session.

A Funny Paigee story

2006-01-23T13:10:00.000-08:00

During Paigee's second round of chemo a funny thing happened. Background first. Paigee asked and got a Poodle right after her first year of chemo; acutally she had been asking for a couple of years. Nana would sneak Poodah into the Hospital during Paigee's admits so she could see him; it really perked her up. During one of her week long admits ( I was pulling duty ) Nana brought Poodah to the room. I was alway nervous about Poodah visits because Nana would let Poodah on the floor and I was afraid he would get out when a Nurse came to the room. The Nurse's of couse knew and loved Poodah, however, he was/is lightning fast and at the time it was an "unofficial visit". During this week Poodah was visiting on a daily basis. This is a scream because it shows just how comfortable Paigee was with Rosie and I and how confident she was.

On this particular day Nana had Poodah sitting on the day bed beside the Hospital bed Paigee was in. The day bed was where Parent's slept overnight. A hard vinyl covered cushion, barely fit to sit on let alone to spend an uncomfortable night. I had been out on a walk since Nana was there. When I returned Poodah was up on the day bed and likely on the blanket that covered me on those cold nights at LPCH. I sat down next to Nana and Poodah. Within seconds there is warm fluid running alongside my leg. Of course it's Poodah and I scream, "Nana !" I scold Nana for having Poodah in the room with a full bladder. No sooner than I've finished, Paigee pipes up, "Dad, it's not all about you." Talk about a tension breaker. Paigee had a way of always piping in at the right moment. I know all parents feel the same way about their kids, but you really put them on a pedestal after they die. When Nana isn't visiting I have about a hundred pictures on the Queen size bed in the Guest room that I frequently view. Forever 7.

While they sang Opera !

2006-01-18T13:41:00.000-08:00

I love to talk about Madison Kitz. Madison is now 8 years old and is a living Angel. After her adoption, if memory serves it was before she turned 6 months old, Madison was diagnosed with Wilm's Cancer. The details are sketchy but here goes. Somewhere along the way she underwent Chemo and then lost her first Kidney. I love Madison ( so did Paigee ) and think of her as Paigee's adopted sister. Madison's family is equally loved and respected. Madison later relapsed ( the Cancer came back to her remaining kidney ) and underwent a second round of Chemo. It gets sketchy here, but... Madison lost her remaining kidney. This is when we were blessed and met her during one of Paigee's admissions at LPCH during Paigee's second round of Chemo. The girls were instantly in love and were inseperable. Madison has two loving parents and an unbelievable grandmother, Dee Dee.

Not knowing much of the details other than they have taken on some debt. Until recently Madison's father was self employed and Madison's health insurance was covered by the Knights of Columbus as the family could not cover the costs themselves. The coverage did not cover the costs 100%. The took on debt over, say, the first 6 1/2 years of Madison's life. Charlie was later able to find a position that provided Insurance and allowed him to work part time and also maintain his Business ( started by his Father, it had been open for more than 25 years; one of his clients is the writer Danielle Steele ).

Madison somehow maintains a somewhat normal childhood while undergoing 3 - 5 hour sessions per week for Dialysis. Undergoing Dialysis means life is very limited. Vacations are on hold because it's not possible to say go to Disney Land and be able to keep her weekly appointments ( M, W, F ), not to mention needing to be nearby LPCH for the likely Central Line infection or infection in the lines that are used to administer Dialysis. Overnight's with Girlfriends are out; Madison has nightly feeds via her G-Tube to get her weight up in preparation for a kidney transplant (the requirement is 2 years Cancer free, I think she has been clear now a little over 1 year ).

I would give both arms if Paigee was still alive and all we had to do was give up vacations to be near LPCH and all the admits that were required. I know Charlie and Lisa both celebrate the hand they are dealt compared to the one Rosie and I have been given. Talk about loving a child; this in one unbelievably loving home.

The costs not covered by Insurance each month approach a thousand dollars. How many people do you know with that extra change after paying a Mortgage and the other incidentals ?

Where am I going with this ? Madison Kitz taught Paigee how to sing Opera. The girls rejoiced even in the midst of tragedy. Madison complained a little, but who wouldn't if you were 7 or 8 and had no kidneys ? Madison gave Paigee the love of an older child. She gave Paigee her contagious optimism and joy for life. I want to give back to Madison for her gift to Paigee. Rosie is in the process of setting up the requisite paperwork for donating to Madison. The orgainization in place to handle this is the Children's Organ Transplant Association ( COTA, www.cota.org ). Funds donated to Madison will offset the costs not coverd by Insurance. These monies will follow Madison through her life as an Organ recepient. I believe the bills will be significant. Cota even matches the donations at some percentage I believe. Now that Paigee is gone I can devote much of my energy and love to Madison and her unbelievable family. I'm following Rosie's lead on this. What better place than Paigee's blog to get started

Madsie Kitz's Blog

Special Thanks

2006-01-11T12:58:00.000-08:00

Paigee's Maternal Grandmother's family in Pennsylvania have recently contacted us and have generously donated to Doctor Barr's Research fund to cure Rhabdomyosarcoma. A wonderful thing to do in memory of a little girl that was the spitting image of Marie. Genetics is a wonderful thing. God bless each of you !

Vintage Hills Elementary

2006-01-06T11:24:00.000-08:00

It turns out that a segment of the donation for Rhabdo research ( $3,300.00 ) was raised by the First Grade classes at Paigee's Elementary School. The money would have normally gone to the class raising the money for their own needs during the School year. What an amazing lesson learned at such a young age. I see Paigee smiling down from Heaven, "thank you fellow classmates."

A second blow losing your child; the loss of relationships with that child's friends and the friends parents following the death. I'll always remember Juliet's enthusiasm and favorite expression, "Oh my Gosh."

Contact request

2005-12-31T09:40:00.000-08:00

A reader asked for contact info for Dr. Frederic Barr, the lead Researcher in the US trying to find a cure for Rhabdomyosarcoma.

If anyone is interested in making a donation to a worthy cause this is how to do it.

http://www.uphs.upenn.edu/pmi/members/barr/
http://www.med.upenn.edu/camb/faculty/cgc/barr.html

Please make the donation to the "Trustees of the University of Pennsylvania" and indicate "Rhabdomyosarcoma Research Fund" in the message line. These contributions can then be sent to his attention at:

Frederic G. Barr, M.D., Ph.D.
Department of Pathology and Laboratory Medicine
University of Pennsylvania School of Medicine
505C Stellar Chance Laboratories - 422 Curie Boulevard
Philadelphia, PA 19104-6082

********************************
Frederic G. Barr, M.D., Ph.D.
Associate Professor
Department of Pathology and Laboratory Medicine
University of Pennsylvania School of Medicine
Philadelphia, PA 19104-6082
Phone: (215) 898-0884
FAX: (215) 898-4227
Email: barrfg@mail.med.upenn.edu
********************************

Wow

2005-12-28T16:17:00.000-08:00

Today marks 20 years of marriage, and no children to show for it. A hard slap in the face. Coming to terms with Paigee's loss isn't getting easier. What's next I ask myself.

In a round about way I found out that there has been $3,300.00 donated to Rhabdo research in Paigee's name. Thanks for all the donations to help find a cure for this hideous monster that stole my baby away from my arms. God Bless each of you !

Surviving

2005-12-25T13:12:00.000-08:00

It's already hard enough without Paigee here, It makes it even worse that it is rainy and overcast. If Paigee were still alive she would be working on ways to be with her firends; most likely Devin or Andrew. New Toys were something for her to share. Paigee was a selfless and giving little girl, ok, tomboy ! We love you Paigee. I know my love for that little rascal will never stop.

Santa let me down this year, I didn't get Paigee back. Funny what your mind does to help you cope with the loss of your babies !

It was decided

2005-12-23T18:12:00.000-08:00

And in the days before Christmas it was decreed that the Taylor family would all get the flu !

Blood Drive

2005-12-20T10:28:00.000-08:00

The Blood Drive in Paigee's name is today. Somehow Rosie thinks she will be able to attend during the entire duration; I"ll be in a dark closet crying.

Toy Drive

2005-12-20T10:26:00.000-08:00

Paigee's Kindergarten Teacher, Mrs. Bull emailed yesterday regarding a toy delivery to Lucille Packard Children's Hospital. The Children at Paigee's School collected a large donation that was delivered to the Hospital this week.

Today was a hard day..

2005-12-17T11:51:00.000-08:00

All the preparation getting ready to bring Paigee into the World is being undone. It's so hard today as I preapare her bedroom set to be taken by a close friend of the family. Early into her pregnancy, Rosie and I sought out the best children's furniture to bring home so Paigee would have the finest furniture; crib, dresser, side table, rocker. Today I cry, "It's not fair God, why did she have to die." Emptying out the dresser and side table, putting all Paigee's things into boxes is one more nail in the coffin; she isn't coming back. I'm glad Rosie is out of the house so she doesn't have to live through this heart ache. There is no end to the misery. As often as I kept that happy face I've had since February 2003, at times it fades into tears. What I wouldn't do to get her back....

Pet Therapy

2005-12-13T14:17:00.000-08:00

Last week Rosie found out that the Pet Therapy program was finally approved to proceed from the Day Hospital to the bedside. This was largely in part to all the time Poodah was smuggled into the Hospital. The Doctors all saw how well Paigee did when Poodah was around; not to mention how much they enjoyed him too. A Win Win situation.

Last week Rosie spent the day with Madison while she was on Dialysis. She ran into many old friends and the Doctors. She said it was a bit hard, but she managed. I'm far to weak right now to make this step back to LPCH; even to see Madsie....Paigee's best Hospital friend.

Comments Working Again

2005-12-12T10:27:00.000-08:00

Thanks Kansas Sis, comments seem to be working again. Blogger added new functionality and the default setup required approval of comments, however the approval request email address was blank. Thanks Blogger.

Sadness

2005-12-10T22:06:00.000-08:00

There is no feeling as bad as entering into the Holidays after losing your child. What would have been a time of joy and excitement becomes an exercise in masking your loss. Today both Rosie and I are emotionally low. It has to be related to Paigee not being here after all the years we worshiped each moment with her. Today I had a meltdown over all the toys still stored throughtout the House. I know I'm just trying to remove the physical reminders of her life.

It's a more painful reminder to receive Christmas cards with the traditional family letter. Reflecting back on the wonderful things the past year brought. As much as Rosie and I kept her imminent loss from Paigee, each day was a painful reminder of what the future held for us. Not just the past year, but for 32 month leading up to October 20th. To live with such terror for so long was a brutal misfortune brought on our family. Such loss must hold some meaning, I know I'll always wonder what it is.

I feel empty this Holiday. My heart continues to beat, but I have no happiness. I hope for the time to go quickly, Christmas holds no special meaning for me any longer. I'm a shell of a person that once knew a happy and full life. I'm reminded of how many times I was told, "life goes on." I ask myself if it truly does. With life's special gift taken from you, you hope for life to go on, but it hasn't for me. Each day I reflect back on how cruel it has become. Avoiding my loss, learning new ways not to feel the pain.

What will become of the survivors of Paigee's life, a very short life indeed.

Today was a speical day.

Blood Drive

2005-12-09T22:51:00.000-08:00

A Blood Drive will be held in Paigee's name at the Vintage HIll's Elementary School, Tuesday, December 20th. Parent's of Paigee's friends are coordinating the event in her honor. That will be the 2 month anniversary of her passing.

Poodah's Birthday

2005-12-07T23:53:00.000-08:00

I wish Paigee were here so we could have a big celebration tomorrow.

I love this guy !

2005-12-04T19:16:00.000-08:00

Trevor Romain ! From what is in his blog and on his main site, this man should get an award. I want to remember this site. It would be an amazing world if there were more Trevors.

Blog
Main Site

Christmas Catalogs

2005-12-03T13:54:00.000-08:00

Now that Paigee is gone there are just so many times I'm reminded how much I miss her and how much I still love her. One of her cute little practices was searching Catalogs. She would gather up all the kid Catalogs, indexing all her favorite things with countless yellow stickies. Being that it is Christmas we are inundated with Catalogs; especially children's. There isn't a day goes by that I don't shed tears over that girl.

Rosie and I both now ask ourselves; "did she really exist." I'm hoping this is a temporary healing step and that soon all the wonderful things that made her so special are always in our minds. Such a cruel thing, losing a child. Christmas will forever be an unhappy time of the year.

Lerd's Christmas Party invite is difficult. Having to be around a normal family with normal happy children is unfair. Will life ever seem fair again I wonder. I'm not certain it was ever fair, with a child in your life all of life's worries and problems seem to fade and dim compared to the overwhelming joy and love you receive from that child. Maybe multiple children is the answer, but then I'm sure there are many that have lost a child would disagree.

Sweetest thing.

2005-12-02T15:28:00.000-08:00

Stephanie and Johathan gave Rosie and I the most touching keepsake. A set of necklaces in the shape of 1/2 a butterly each; forming a complete butterfly when the two are put together. On the little charm is a Pink Amethyst; Paigee's Birthstone. I've taken to wearing jewelry, I already was wearing the pendant with Paigee's ashes in it, the two look good together.

touching

2005-11-28T19:36:00.000-08:00

This evening I feel like Paigee is with me. I felt peace and was happy when I began to think she was somehow with me. I hope to have more instances like this.

First Holiday w/o Paigee

2005-11-28T10:59:00.000-08:00

Many people sent email/prayers for Rosie and I to help us get through the Holiday. I'd like to say that it was easy, but it wasn't.
Because we didn't have a Service we are now finding ourselves running into people that didn't know Paige had Cancer, or just those that didn't know she passed. On top of the Holiday that is especially hard. It's more difficult when Paigee's friend didn't know and they end up crying. I know all families that lose a child go through this, I guess it was a slap in the face for us.

Many people have sent email telling of Dreams that Paige was in, some with Shooting Star themes. They really put a smile on my face and make me think Paigee is out there stirring up her normal mischief and her special love. For all these contacts, Thank You !

Help with Dylan's Fight

2005-11-24T19:47:00.000-08:00

Dylan is winning the fight. Click on to his site DYLAN and think about donating !

? Thanksgiving ?

2005-11-24T14:21:00.000-08:00

A bit difficult to feel thankful right now. While surfing around feeling Paigee's loss I found Brynn's Site and plagiarized some content.
Brynn

BEGIN PLAGIARIZED CONTENT -->
For Sriya - who is in hospice and is nearing the end of her earthy journey. She has rhabdo like Brynn did.
For Kevin - who is also in hospice. Kevin has such a beautiful family
For Dylan - who is in NY fighting the good fight and winning.
For all the Families who are without their loves ones this year:
Brenda, Nikie, Connor, Cheyenne, Chris, Emerald, Haley, Eric, Paigee, Ian, Garrett, and Jason.

And in the end it's not the years in your life that count. It's the life in your years.
- Abraham Lincoln

<-- END PLAGIARIZED CONTENT

Darn

2005-11-23T10:22:00.000-08:00

Don't forget the Archives selection to the left. This Blog goes back to Dec 04 and prior to that was the Original Paigee Click

Re-Sanity Tour

2005-11-20T10:32:00.000-08:00

Sanity has been somewhat restored. However, on return to home though a flood of emotions have come back. Seeing Paigee's artwork all over the house is a reminder of our loss. Being out of the house these past number of days was beneficial to recovering and finding my rudder in this new journey, but now I need to find a coping mechanism for being back in the house. How much easier it would be to just be a fact collector. I am very lucky to have found a couple of parents from Rhabdo-Kids that have given me tremendous support during this time.

My heart is broken again over the loss of Michael. Yet another victim of Rhabdo, his journey paralled Paigee's during those 32 months. Diagnosed one month after Paigee, Michael passed 14 days after Paigee. I have this image of these kids meeting in the next life talking about their ordeals with Cancer, how grateful they are to no longer have pain and discomfort.

A very spiritual thing happened on our trip. Last Sunday night while driving to Canyon De Chelly we were treated to the most amazing shooting star. It fell just ahead of the car at most 200 hundred feet away. Not faint, but very bright for being so close to the ground. Rosie and I looked at one another and knew that Paigee was letting us know she was nearby watching over us. Just now I was reading emails that had accumulated before Paigee's death and read Riley Rooh's Mother's email describing a very similar event. Halloween night; not long after Paigee passed, Suzie was also treated to an unusual shooting star. Riley was Paigee's first best friend from 0 to 4. A very recent picture of Riley in a School Bus still sits on the bedside table next to Paigee's bed. I can hear her now, "hey Riley, it's me Paigee, I'm up here..."

Coming back home I can see is going to be a a new journey learning how to deal with the pain and grief experienced after the loss of a child.

"Paigee, I never loved anything as much as I loved you pumpkin."

Farm Girl Rosie

2005-11-13T06:06:00.000-08:00

Now it is official ! Rosie has accepted the invitation and has been forever accepted into the Farm Club. Following close on the heels ( 4 ) of Poodle Cottontail, Rosie has passed Muster and can claim membership at Everett and Reenie's Farm. Although she did not ride the John Deere Tractor, she sat atop the seat in awe of the overwhelming machinery ( better than Case, IMHO-in my humble opinion ). With all the bugs and snakes and misc critters I think Paigee was with us in spirit. The visit was a at the top of best visits/vacations.

Although both of us have had bouts with overwheliming grief we think we have opened enough new doors to be on our new path. We have great people who's steps we hope to follow in: Christine, John, Lori, Lynn, Pam ( I have had only one cup of coffee and could be missing numerous other's; sorry).

Thanks

2005-11-12T19:47:00.000-08:00

Thanks to all the people that continue to email and post comments. It is comforting knowing that in some way Paige made a large difference in this World.

What's left

2005-11-05T18:34:00.000-08:00

Readership has gone from mid 200's to today's low of 33. There isn't much to Blog about anymore. This seems to be my last connection to Paigee's illness which I should let go of now. My head is spinning over the thought. Rosie and I are getting our minds in a better space now, hoping to come back and get back on with what life will be from here on.

A guy has let me know he is in line for the Internet ( our Hotel does not have highspeed in the rooms and our Dial up is connection at 2400 baud ) and I need to log off. So I guess this is good-bye. Love you Paigee, until we meet again !

PS.....I WON'T REMOVE THE BLOG, IT WILL LIVE AS LONG AS BLOGGER LET'S IT LIVE. I JUST WON'T ADD CONTENT; UNLESS I FIND A CUTE PICTURE OF PAIGEE OR HER FRIENDS.

Ooops

2005-11-03T17:01:00.000-08:00

We are on an sabatical of sorts to restore our SANITY, hoping to get back onto a path that can lead us beyond Paigee's death. Nana as always is backing us up like the tried and true friend you can only hope for.

And I hope in any way possible that Paigee is always with us, wherever we go.

Thanks Marty

2005-10-29T19:45:00.000-07:00

These last few pictures were donated by Devin's Father, Marty !

Don't you ...

2005-10-29T19:39:00.000-07:00

Don't you dare take my picture !

Last day of Kindergarten

2005-10-29T18:29:00.000-07:00

Takes my breath away ...

03Nov2005
OMG, this will alway bring tears to my eyes. Those silly grins that Paigee always had. She was just a happy little girl, no troubles even in the midst of Cancer. She never expressed how she felt when we told her, "Heaven is a good Place Paigee, there'll be a party when you arrive." How could I think we didn't tell her she was dying. Parenting a dying child is the worst fate possible, I'll never be anxious again that something will happen I can't overcome, if the death of your child can be an obstacle to overcome. I guess I'll really never overcome that loss, "God help me to survive these days !"

Andrew, Andrew, Andrew

2005-10-29T18:24:00.000-07:00

you know I have the bigger hot wheels collection

Mr's Bull, 2005

2005-10-29T18:19:00.000-07:00

The Kindergarten Class of 2005.

Buds

2005-10-29T17:42:00.000-07:00

Paigee and her best Buds: ltor Andrew, Paigee, Conner, Devin

Poodah

2005-10-29T13:47:00.000-07:00

The clan is home to roost. Poogie ( what Paigee was calling him before she died ) is back and among family. His eathing habits have become quite bad ( being around Nana ) and will require considerable work to get him back to eating like a dog.

Well

2005-10-28T21:37:00.000-07:00

A week and one day later. It's like she is at Camp, or away for an overnight with Cousins. It almost feels like she is coming back. I picked up her remains today from the Mortuary. The Funeral Director was comforting, but when she went to get the container with Paigee's ashes, my stomach dropped and my eyes teared up, I know I'll never be the same.

The Funeral Director asked again when we were going to have a Service, she said they were getting a lot of calls. She asked me to please call when we decide. There are no immediate plans for a Service. Rosie and I had a private viewing last Friday. The Cremation was yesterday. At some date in the Future, plenty of notice will be given, we plan to have a Life Celebration ( with Butterflies ).

Oh, and without a doubt, Paigee is in Heaven telling anyone that will listen just how you catch a lizzard !

Experiment 2

2005-10-28T21:24:00.001-07:00

Experiment 1

2005-10-28T21:24:00.000-07:00

The black on her right Cheek... The Crew on the snorkeling boat came around and wrote the individuals name on the waterproof cameras in magic marker. They knew from experience they got mixed up and it was better to put names on them. Ms. Hammy was so busy snapping shots the ink from the back of the camera transfered to her face. I tried to keep her clean on the trip.

Silly Paigee

2005-10-28T21:17:00.000-07:00

Always the little Ham. Can you tell how much I love her, even now. Rosie and I still feel numb. It's hard to start feeling again after all those months hiding our feelings so Paigee thought everything was ok.

The Slide

2005-10-28T21:15:00.000-07:00

This is the Slide, she went down this at least 10,000 times. It was fun. This is also the slide the 2yr old came down; I saved him !

I hope

2005-10-28T21:14:00.000-07:00

I hope her eyes are visible once this is on the Blog !

Finally

2005-10-28T21:12:00.000-07:00

I worked up the nerve to have the underwater cameras developed today. Quality, eh ! Some goodies of Paigee and plenty of her playing at Photographer.

Hard to believe she's swimming, it cost about $200 before I found a tape combination that was waterproof enough to keep the water away from her Central Line.

Bump, bump, bump

2005-10-28T01:56:00.000-07:00

Does anything go right ! I ordered the not so inexpensive funerary jewelry so that I could carry Paigee's ashes around my neck. The thingy shows up today, less the chain they said it didn't come with when I called; in spite of what their web site indicated. And to make matters even more difficult the inside was one solid piece; no room for ashes. Of all times to get the run around, if I had any feelings left I would let someone have a piece of my mind. I don't think it makes too much difference to mention that I am part of very large club; Parent's of Kids with Cancer, expired. Don't they care about word of mouth. But then again, look what good it did me with the Dolphin fiasco ....

I'm anti everything this week. I was so fed up with the establishment I blew away XP on my laptop and installed Linux, that'll get notice in Redmond. Now I have 2 Linux machines and 2 M$ machines. When I call back to www.prestigememorials.com I'll tell them how dangerous I really am, I don't follow the crowd people, I do Linux !

TV Interviews

2005-10-26T20:27:00.000-07:00

KRON4 interviewed the famly during Paigee's Make A Wish at the San Francisco Ballet. The piece ran quite a few times over the span of 2 weeks. And then the second time another News Station came to Lucille Packard Children's Hospital for Halloween ( last year ) and Paigee and Madison were the highlight of the special. Two times !

"Holiday ( PC )" Party 04

2005-10-26T18:26:00.000-07:00

Thanks Mr. McCarthy for this picture of Paigee. Notice the Tom Boy wore her wig, a black patent leather mini shirt and matching shoes. Now that takes the cake ( cup cake; heh, heh ). Keep em rolling in !

Halleluja

2005-10-26T13:20:00.000-07:00

Found 2 TV Interviews of Paige with her voice. Better than I thought.

I can't believe it

2005-10-26T01:47:00.000-07:00

Ben's Mom Christine warned about getting a recording of Paigee's voice, did I do it, Nooooo. Here I am at 1:45 AM trying to find a recording. All I can find is her saying her name on the Dolphin Quest DVD, one time. Is that enought.... I just sent of an email to Michael's Mother reminding her not to repeat my mistake. What an awful lapse of memory !

Any recording ????

What will Poodah think

2005-10-25T22:11:00.000-07:00

It just dawned on me that Poodah is going to look for Paigee when he gets home. I wonder how pets deal with the loss of an owner. I'll need to keep him busy playing, I hope he can ease into her just not being here anymore.

Headline

2005-10-24T12:53:00.000-07:00

Poodle Terrorizes Midwest Farm
Nana ( my Mother, Marjorie ) and Poodah ( Paigee's dog ) have been visiting my second Parent's Reenie and Everett; Marjorie's Sister and Brother-in-law. The "FARM" is a real working Farm in the Midwest, tractors, harvests, planting.... Over the years there have been dogs on the Farm, but never a Poodah. If you meet Poodah you shouldn't be surprised, but, he has the strong determination that Paigee had. In a dog that isn't always a good thing, especially when you are 6 pounds of fur going up against either a real Farm dog or the Farm cats that live on cottontail rabbits ( Poodle Cottontail ! ).

In spite of all my warnings about coyotes and other threats, Nana let Poodah have full reign of the Farm. In a short time he had the real Farm dog whipped into shape and had tree'd every cat in sight. His bark may not be deep, but it's that determination that apparently put the fear of Poodah into each and every animal within site. Within days of departing back to California, my Uncle Everett has appointed Poodah, "Chief of Security", and has authorized the title, "FARM DOG". Upon Poodah's departure, my Uncle has commited to recovering the cats from all the trees and providing Trauma Couseling for each of the victims. There is fear that a existing FARM DOG will need to replaced, the psychological damage is that severe. ( Breaking News: there is one less cat than before Poodah arrived on the Farm )

Warnings have been issued in the States along the return path home: Oklahoma, Texas, New Mexico, Arizona and Southern California: Keep Pets in doors until October 31st, or until Poodah is back in Pleasanton.

Upon returning home I feel obligated to warn the squirrels in our yard about the new and improved FARM DOG returning to our residence. I enjoy seeing them in the yard but it was Poodah's full time position to keep them restricted to trees and fences. My fear now is that with all his new found confidence and exposure to animals that periodically kill for their food, Poodah may have evovled into a 6 pound Squirrel killing machine !

Paigee has to be in Heaven laughing her self to giggles over her Poodah !

A very touching email

2005-10-23T23:10:00.000-07:00

If you ever read Ben's Blog, the entry dated: 2005-10-18 03:35, Subject: Happy 7 ½ Birthday Ben, had an attached email from Joanne Weiss. From the letter it's obvious she lost her son recently. Michael and Ben shared a common Demon, Burkitts Lymphoma. The email was very moving and touched me spiritually as well. See the Links section ( upper right ) to navigate to Benny's Blog.

sunday

2005-10-23T15:44:00.000-07:00

A very sad day, the facade is crumbling for both of us.

In August I purchased 4 books on surviving the loss of a child. At that time the subject was just too heart wrenching to think about. Although iIt still is, there are some valuable lessons.

Last night as I lay for hours waiting for Paigee, the outdoor light went on. Rosie thinks it was a family of squirrels. I don't, I think it was Paigee coming back to get her Bug Habitat and the Bug Catcher. They both were there in the morning. Maybe Rosie was correct. Personally, I think her Spiritual hands couldn't pick them up. I'm willing to bet there are plenty of bugs for Paigee in Heaven.

So Sweet

2005-10-23T12:17:00.000-07:00

Paigee actually had reddish hair when she was born. This is a pic of pic ( the glare ).

Oh Please ...

2005-10-23T11:33:00.000-07:00

Poodah was anxious, he was ready for Halloween ( thanks Aunt Jeanine )

4th Birthday

2005-10-23T11:09:00.000-07:00

A pic of a pic but better than nothing. Paigee and her best Girl friends at the time; Murphy and Ryan !

Cremation

2005-10-23T10:13:00.000-07:00

The Cremation happens Monday. We have not picked out an urn yet. I don't think I will be able to attend the Cremation. Alan the Funeral Director mentioned some cultures did attend the Cremation. I think we will keep Paigee in the simple box provided by the Funeral Home until we work up the courage to order the urn.

We have decided not to close the door to Paigee's room. We won't let it remain a shrine though however. So many difficult subjects to deal with during this time. The overwhelming grief has not happened yet. I removed some earlier posts about the actual Medium and then one about filling the void, they seemed out of character. We have plead our case with the real Allison Du Bois though hoping for an appointment.

I laid in bed awake almost all night, a Vigil, a visit that never happened. I can't forget..

LPCH

2005-10-21T16:04:00.000-07:00

I want to chronicle the Dr's and other Staff we met and loved during our treatment. When my memory comes back I'll have something here !

A Must Entry

2005-10-21T14:44:00.000-07:00

Devin Cox put it so well, "my eyes have stopped crying, but my heart is still cyring", from the mouth of a 6yr old. Paigee loved everyone, but Devin and Andrew were her best guy firiends.

The Viewing

2005-10-21T14:12:00.000-07:00

My fear that she wasn't really dead, and that she would wake in the Mortuary, panicked because Rosie and I were not there was unfounded. I thought watching the Mortuary taking her body out last night was hard, yet seeing her today in the Mortuary was a brutal blow; she's truly gone. We already miss her so much. Both Rosie and I feel empty, not a feeling of gratitude that she is out of pain, we never knew how much pain she was in, she protected us from that knowledge.

Seeing her gave me closure. Even in death Paigee looked like an Angel. So many times during the past 32 months we had lost her, in some regards our grieving had begun even before yesterday.

Over 500 people read Paigee's Blog yesterday. In desperation I created the Blog hoping to tell the World about Paigee, I didn't want her to die without a sigh.

Just a minute a go I turned my head away from Rosie after a conversation we had, and I saw a flash. Rosie said a similar thinig happened to her yesterday evening before Paigee died. I think we are on the path to INSANITY

And NO, Paigee didn't relate having Visions anytime during this past week, she was unable to move or speak from Monday on; after the seizure.

Childhood CancerPaigee's LifeBorn Oct 15,98Angel, Oct 20, 05

The Second Year Anniversary

Interesting

The 15th

Madsie

Another Loss

biopsy

Another life touched by Rhabdo

4 years

New Madison location

Madison

Madison

Sad news

More Exciting news

Answered Prayers

Archives

A flutter of wings

Last year

!!!! HOORAY !!!!

First day of school

depressabration

Madsie Update

Unavailable

Sweet Picture

Madison

What are the odds ?

Ghostly visitor

Cancer Baby

Christine at Camp Okizu

Mother's D(read)AY

IPOD vs PALM

Oncology Years

Easter Surprise

Madison

Just thinking...

Wow

Long Time away

Pleasant experience

Excitement

A Funny Paigee story

While they sang Opera !

Special Thanks

Vintage Hills Elementary

Contact request

Wow

Surviving

It was decided

Blood Drive

Toy Drive

Today was a hard day..

Pet Therapy

Comments Working Again

Sadness

Blood Drive

Poodah's Birthday

I love this guy !

Christmas Catalogs

Sweetest thing.

More Stories

touching

First Holiday w/o Paigee

Help with Dylan's Fight

? Thanksgiving ?

Darn

Re-Sanity Tour

Farm Girl Rosie

Thanks

What's left

Ooops

Thanks Marty

Don't you ...

Last day of Kindergarten

Andrew, Andrew, Andrew

Mr's Bull, 2005

Buds

Poodah

Well

Experiment 2

Experiment 1

Silly Paigee